The Gentle Giant

Peace Through Understanding?

2011-01-17T05:50:00.001-08:00

Tough mornings are nothing new in our house. To say that I'm not a morning person is an understatement of epic proportions. As one parent I recently spoke with at my son's daycare said, "Oh, you're a two-cupper." Meaning, I need two cups of coffee before I can function at a somewhat "normal" level. But when is enough, enough?

Abby has been really angry lately. It seems like it's just come about in these last couple of months, but when we're really honest with ourselves, she's always been angry. It's tough to see sometimes, because when she's happy, she's really, really happy. But man oh man... if she's not in the mood to cooperate or she's just plain pissed off... watch out!

She probably needs to get to sleep earlier. Her bedtime is 8 o'clock, but it's always closer to 9 by the time she actually falls asleep. She's like her mama. She likes to read in bed and I can't say I blame her. It's hard for me to enforce rules against something I've done my whole life. Even when I know it's the best thing for her.

My Facebook status today in honor of Dr. Martin Luther King, Jr. is,

"Peace is not merely a distant goal that we seek,

but a means by which we arrive at that goal."

I chose that quote, because I believe in it. It's the method by which I try to live my life. And the method that I attempt to parent my children. But I find that most days I fail miserably. (I hope I'm just not giving myself enough credit.) I try so hard to keep my cool and to be peaceful while I'm helping Abby with tasks. From homework to dinnertime to getting dressed. And yet I seem to have a threshold that I just can't extend. There are only so many times that I can calmly say,

"You have to pull from the bottom too, Honey, like this. You have to use your hands, Abby. Your pants won't pull themselves up. Abby you have to use your hands. Now pull from the bottom, too. Honey, like this. See pull from the bottom over your feet, then you can pull the rest up from the top. No, don't lose your temper... you just have to use your hands to pull from the bottom."

After another minute of so of dialogue similar to above, she's pissed off, because she hates using her fingers/hands to do anything, and oddly enough, pants don't magically pull onto your body without those magic appendages. And now I'm pissed off, because my job is to teach my 5 year old to dress herself, because her teachers aren't going to dress her and I don't want to have a 13 year old that I'm still freaking dressing! So now the dialogue turns into something like this,

"Well if you would use your freaking hands like I've said ten times and actually reach down and pull your damn pants over your flippin' feet, it would be easier to put on your damn pants! Now pull them up! Quit freaking out! For the love of God! We're just putting on pants!"

Not very peaceful.

I imagine that trying to change the hearts and minds of ignorant racists might be as difficult as teaching an Autistic 5 year old to get dressed. Both are irrational, over emotional, angry human beings. And it really breaks my heart that I'm drawing a direct line of comparison between my daughter and racists. But it seems impossible some days and yet I continuously push forward for change. I cling to the memories of the progress we've made and it does give me hope. And yet, I can't help but let my mind wander to thoughts of a darker nature.

At Christmas dinner, when I was pleading with her to watch her temper and just eat her food without screaming and throwing a tantrum, (which really would have a Christmas miracle), she turned to me with fury in her eyes, and hissed,

"I'm going to peel you!"

When I asked her in my stern mommy voice,

"What did you just say to me?!" she tried turning it into something cute and said with a giggly smile,

"I'm going to peel you like a banana."

At the time I laughed it off, but I can't shake that moment. I was disturbed by her threat and then her ability to turn right around and make it into something it wasn't... cute little kid banter. The fact is she says things like that quite often. I'm concerned for my little girls emotional well-being. How much of this anger is related to her Autism and how do we help her deal with it?

We are not an angry household. My husband and I rarely raise our voices to each other. That is not to say we don't get angry with each other, but we don't scream and call each other names or make empty threats. We don't scream at our kids, though we certainly get angry and let them know it. But there have been times when we've both lost our cool... a person can only take being screamed at by a child for so many hours in a day, before they push back. And this... THIS is what I fear... that I'm not successfully achieving Peace through Peace. That I'm exacerbating the problem, by giving into the stress, even when I was successful for the greater part of the day. It's those moment of anger that are staying with her, burrowing into her psyche.

And when do peaceful words and actions become complacence? Because sometimes I just give up. I merely move through situations quiet and numb, all in the name of "keeping the peace." I feel in some ways like we're back to the beginning. When she was 2 years old and spent much of her days in time-out, because if the doctor's are right and she's "just fine", then I need to discipline this behavior away. When and how do I discipline "bad" behavior, when I'm not sure she fully grasps how damaging her behavior is? Since the day we finally heard the words "Autism" come of the mouth of a professional, we've changed the ways we discipline Abby. She hardly ever takes a time out and generally the mere mention of it is enough to TEMPORARILY get her to change course, but are we doing enough? I have so many questions and not enough answers. Everyday it seems we make great strides, only to find ourselves back to square one in other areas. It's exhausting.

It's been a long time since I've sat down to write here and I'm afraid this is mostly rambling nonsense, but I think I need to do this more often. It helps to get it all out of my head where it just rolls around and morphs into thoughts like,

"Well, if you had more patience, maybe she would, too."

"If only you said the right words, she might understand."

"If you would focus more on her and less on school and work, maybe she would make more progress."

"If you were a better mom, a better wife, a better student, a better employee, a better sister, a better daughter, a better friend..."

"If you were more..."

I know in my heart that I'm a good person and a good mom, but this hand I've been dealt sucks and I don't know what move to make next. I don't have the tools or the knowledge I need and there aren't enough hours in the day to learn them all. When I focus on my family, I start to slip in school and at work. And while my family is my first focus, always and forever, it's important that I do well at school so I can keep my job, and it's important that I do well in my job, so I can keep my health care and my husband can have the freedom to pursue his career goals. And mostly so I can feel good at something again. Because even though I have great kids and we're really doing "ok", I never felt successful when I was a stay-at-home mom. The laundry was never done, the dishes were always dirty, and the kids still threw temper tantrums. At least at work, I can see things crossed off the to-do list. I can teach someone something and they thank me. I can make life easier for someone... and that's what I want to do at home, too. It just doesn't feel like I'm doing a very good job of it.

All I want is for my daughter's mind to peaceful and for her heart to be full of love. And I can't force it. I can only lead by example. And while my heart is full of love, my mind is not peaceful.

I'm trying, I really am. Maybe she is, too.

I Forget

2010-11-08T18:26:00.000-08:00

Sometimes I forget.

Her sentences roll off her tongue like water.

She looks deep into my eyes and smiles and laughs.

Maybe They are wrong

Maybe we’re all overreacting.

Then I read some list.

In some magazine or book.

Telling me what she should do.

Who she should be.

Its intent is to educate.

But to me, it’s a prison sentence.

I hear two children playing pretend.

I’m the mommy and you’re the daddy,

While she screams.

Because she is too literal, too precise.

She is wrapped up in her own logic.

I am not the mommy and you are not the daddy.

She screams when the vacuum leaves its cave.

Or when the broom sweeps away her crumbs.

She screams while the water rushes.

When the wind howls.

She screams and she screams and she screams.

I am forced to remember.

She wont hit those milestones on that list

When They say she should.

She’s not like those children playing pretend.

I am the mommy and you are the daddy.

She is Not Otherwise Specified.

This is not how I imagined.

There are no tea parties.

No playing house.

I am not the mommy and you are not the daddy.

There are no dance recitals in pink tutus

With video recorders and rounds of applause.

Sometimes it makes me cry.

And he cries, too.

And after the pity party

We remember.

I remember.

She is ours.

She is just as He intended.

She is who she is and she is ours.

She can do this.

We can do this.

We’ve only just begun.

Taking the Time to Listen

2010-05-08T19:51:00.000-07:00

We put up a small greenhouse in our backyard, growing flowers, shrubs, and vegetables. We're also tending a small garden and cut out 6 large flowerbeds throughout the yard. Abby now thinks we live on a farm. She says we need a barn and ponies. We can't give her the pony, but we are planning to build a new shed, so we might have to paint it barn red just for my little Ab. I find myself in front of a computer the majority of most days, so it's been a great release for me to get outside working with nature and doing some hard physical labor. Since we drive a small tractor as we haul sod and rocks and mulch, Bean now pretends he's driving a tractor quite often. The tractor noise he makes as he pushes around his "tractor" is pretty good and seriously cute.

We have a rule at our house that the kids aren't allowed to play in the front yard without adults present. So one day, a couple of weeks ago, when we were working out back, we told Abby that she needed to come with us to the back yard. She said something to us about "going to visit Joey", a friend of her's from school, but we kind of brushed her off and said something like, "Well someday we can, but right now it's time to go to the backyard and play." We left it at that and went to the backyard, figuring that Abby would make her way back in her usual distracted, pokey-puppy manner.

My husband went inside to change Bean's diaper and after no more than 5 minutes later asked me, "Where's Abby?"

"In the front yard." I answered.

"No, she's not." he said, clearly concerned.

We all started searching and calling for her. No answer. She was no where on our property or in the house. We live fairly close to a small body of water, so we immediately dispersed to make sure she didn't walk to the water. My husband and brother-in-law found her walking in the opposite direction of the water (thankfully!) down the side of our cross-street. She told us she was walking to Joey's house. It was really scary, but we stayed pretty calm and talked about why she couldn't leave the house without us. I couldn't help crying and I could tell she felt really bad, though that was not my intention. I was pretty shaken up. Later that night, at bedtime, she brought it up again and then stopped talking suddenly, simply saying, "I'm sorry, Mom." It was a pretty scary and heart wrenching experience.

I learned a pretty important lesson from it though. She told me she was going to go to Joey's house. I didn't take her seriously. I didn't really listen. While not excusing my actions, I think I had grown used to having her not communicate with us verbally. I'm still catching up to her new-found communication skills. She talks a lot. It's really wonderful and I was letting so much of it slip right past me. Since her big adventure, I've really been trying to make an effort to sit and talk with her more often. Ask her questions and just listen to her answers. Sometimes they are way off topic and sometimes it's kind of hard to follow, but more and more often, she shows me the amazing strides she's made this past year and half that she's been in ECSE (Early Childhood Special Education). She's has the sweetest voice and it's in those quiet times that she shows the greatest parts of her personality. She's not just the child who is often on sensory overload, screaming and whining and dancing around the room with her ever present string twirling obsessively between her fingers. She tells great stories and has great ideas. She even encourages me with, "Oh, that's a great idea!" when I offer up a suggestion to build on one of her stories.

I'm so thankful she was found safely that day, and while I'm sorry I had to learn the lesson through such a frightening experience, I'm so very thankful that I figured out what I was missing when I didn't take the time to really stop and listen.

Where Does It Go?

2010-04-15T19:24:00.000-07:00

Time just seems to be flying by.

Now that I'm working full-time & going to school,

I barely have time to breathe.

I work all day, water the plants in our new greenhouse (!!!),

I push the kids on the swings for 10 minutes and call that playtime,

because now it's time to make dinner, give baths, clean the kitchen,

brush teeth, read books, turn out lights,

head downstairs to put away some laundry, make a card, and do some homework.

Next thing I know it's midnight and I have to get to bed to start all over again.

I know this is nothing new.

I'm one of millions making the same observation.

Notice I didn't call it a complaint.

Because I'm not complaining.

I'm so blessed.

We're so blessed.

But you know I do miss something.

Blogging.

I miss writing, reading, browsing.

I miss all of you who live all over this world and have enriched my life so much.

I really, really do.

XOXO

Abby's Quotes of the Week

2010-04-07T16:38:00.000-07:00

Abby's language skills continue to progress beautifully.

Here's a few Abby quotes that made me crack up!

I'm sitting at the dining table working on the computer as usual, and I look over at Abby who is playing with a plastic Easter egg in the living room. She is smiling with one half of the egg in each hand, scratching the inside with her fingers. I smiled back at her and asked, "Are you playing a little song?" She answered excitedly, "These are my turntables!" Really? Her turntables? I know I listen to hip-hop quite often, but how in the world does she know what turntables are. I'd be willing to bet D.J. Lance from Yo-Gabba-Gabba has something to do with it.

Abby's second quote of the week came about while I was changing Bean's diaper today. I made some psychedelic cupcakes (inspired by Kotori) for their Uncle Erik's birthday. (I took pics of the process and might get around to posting them by his birthday next year) The kids ate the last of them yesterday and the food coloring made for some interesting diapers from Bean. So today as I was changing a particularly colorful diaper, Abby said, "Bean's poop is chartreuse." And she was spot on! It was totally chartreuse. Here's some cool examples I found of chartreuse for your viewing pleasure. I left the image of Bean's diaper to your imagination. You're welcome!

I broke the cardinal rule of blogging, by forgetting to give you the source for these photos.

I apologize and if you know, please let me know, so I can give credit where credit is due.

98... 99...

2010-03-16T19:02:00.000-07:00

100!!!

(#100 is blank inside and 3 different cards were used to make it)

(#99 was made using 3 different cards and
it took some time and precision to cut those snowflakes out)

I'm exhausted, but I've really been enjoying making these. It's such a release at the end of my day. My goal is to make one a day and every now and again, I'll bust out 4 or 5. Each card takes anywhere from 20 minutes to 45 minutes to make.

Being Happy

2010-03-13T20:51:00.000-08:00

I promise I'll post more soon.

I've been busy looking beyond the imperfections.

I found this here

and she found it here

Mama's Got a New Job.

2010-03-13T19:21:00.000-08:00

I'm sorry I've been so quiet. I started a new job at the beginning of the month working full-time for the National Park Service as an IT Specialist, coordinating customer support issues. I'm absolutely thrilled, but it's certainly been a life altering event. Working full-time, going to school, being a wife and mother, and trying to make at least one holiday card per day, makes for a very busy day. I'm really going to have start scheduling time to blog.

All of these photos are from my D.C. trip

I spent a full week in Washington D.C. training for my new job and it was a really fun week, except that I missed my family terribly. I left on a Sunday night and on that following Tuesday night when I was talking to Keenan he said, "Good night! See you tomorrow." And it broke my heart! Staying true to form, Abby refused to talk to me on the phone at all. She really does not like talking on the phone. She will Skype though, so at least we can do that with her grandparents, uncles, aunts & cousins sometimes. It was really great coming home and seeing the excitement on my sweet children's faces when they first saw me. I got plenty of snuggles that night.

Oh! Speaking of Skype... Dani, maybe we should set up a Skype playdate for Abby & your Little Bird. What do you think?

Abby told her speech therapist that I was "... in Washington at Brock Omama's house." She said she didn't have any reason NOT to believe Abby, because she was the only one of her student's who had told her the President's name that day. Haha! I brought the kids a really cool book of all the President's. It's a fan that folds open and has a photo or painting of each President's face at the top and a brief description of their life & presidency. I'm kicking myself for not buying the First Ladies book, too.

My new hair! I had it done before my trip to D.C.

Tumbling

2010-02-24T11:11:00.001-08:00

Abby is just over halfway through her second tumbling class this year. She looks forward to it all week and is all smiles! Here are some photos from family night.

Sorry so many of them are blurry. I still haven't really figured out the right setting on my camera for action shots... because apparently it's not the "action" setting. Maybe I should read that book they send along with most technology purchases. I think they call it a manual.

Abby ADORES her teacher and often brings pictures that she's colored for her as gifts.

Getting some help from the helper.

Getting a little push from her Dad.

This is Abby's Grandpa. She adores her Grandpa.

On the balance beam.

This is Joey. He's in her class at school AND in her tumbling class.

They are buddies and were soooo excited to see each other that night.

Too cute!

Etsy Goodness!

2010-02-23T10:42:00.000-08:00

I've mentioned her before, but my good friend, Jenifer Rank, has a lovely Etsy shop where not only does she sell the items she lovingly knits, but also donates a portion of her profits to various charities. For this very reason, she has been invited to participate as a vendor in Portland State University's (Oregon) Earth Day celebration. They select local artisans who's philosophies and business practices mirror the "Earth Day Spirit." It really is an honor. Congrats, Jen!

One problem.

She needs to sell some of her inventory on Etsy in order to raise money for the entry fee. So let's help a sister out and order something fun for yourself, your kids, your mom, maybe your neighbor. Go for it!

(love these coffee sleeves... especially the one with hiking boots... CUTE!)

Be sure to take a peek at her Abby Collection. It's inspired by my little Abby J and she will donate a portion of those proceeds to Autism Speaks.

That Jen is a keeper, I tell you. Love that woman!

Whatever You Are, Be A Good One

2010-02-21T07:38:00.000-08:00

I have a very dear friend, named Courtney. We became friends in high school and have remained friends ever since. It's been about 15 years, give or take a year. We lived together in our late teens/early twenties and during this time, and years after, Courtney worked in group homes for adults and children with Special Needs. She loved the people with whom she worked, with a passion that forever changed my view of people with Special Needs. Little did I know then, that living with Courtney and hearing her thoughts, opinions and emotions regarding the people she cared for, was helping to shape me into the mother I am to Abby today.

(Courtney and I at the North Idaho Fair, riding a stuffed bull, circa 1996)

When I first told Courtney about Abby's autism, she said something like, "What is the great irony that, Erin, one of the most verbal people I know, would have a child that doesn't know how to communicate?" It is both ironic and perhaps fitting, because who better to raise a child who struggles with communication than a person who thrives on it? This is not to suggest that my methods with Abby have always been perfect. On the contrary, I think there have been some things that I've shared with Courtney that I sense she, as both a mother and an educator, has disagreed with. At first that made self-concious, but in the long-run it has been a check to me that I appreciate. While I stand by the majority of my parenting decisions, there are some that I certainly wish I could go back and do differently.

Courtney is now a teacher in our home-town's school system where she works with Special Needs kids and, of course, kids with Autism. I've so appreciated her comments on my PDD-NOS post, that I've decided to post them here, to make sure that they aren't simply passed over. If you weren't able to read the initial post that sparked this series of comments, please take a moment to do so by clicking here.

I'm so thankful to have Courtney in my life. She has proved to be a great friend time and time again. I look forward to the time we will surely spend together when our children are grown and we are reflecting on our lifelong friendship that has long surpassed 15 years.

(This photo was taken last August at another dear friends' wedding in Washington state)

Courtney: "Ok here's my take, obviously from a different perspective than a parent of an autistic child but as someone that sees trends when comparing the abundance of children coming to me with all sorts of developmental delays.

As long as any child has pervasive developmental delays they will receive special education services, and that is the way it should be, I think we all agree on that. Children with PDD are also encouraged with communication and social interaction as ASD.

I get a lot of first grade students with a PDD criteria and it is a very vague descriptor of the child, but they have the same rights as a child diagnosed with autism. So even if the PDD wasn't under autism spectrum, you would still get the same rights to individual education and all that good stuff. I think that what they do with the PDD diagnosis is the best solution I know of for the child, teachers and the health community as well. Not that trying separating and diagnosing all these people is ever going to be perfect or anything.

I have seen some children diagnosed with autism completely change and turn themselves around in communication, interpersonal relationships and academics. I have see other children with the exact same diagnosis living in a full time staffed assisted living home never talking or being potty trained. Now these two people obviously should have different diagnosis'. If students are diagnosed with PDD instead of autism when they are high functioning on the spectrum, they, their families and the medical community won't be quite as surprised to find that this autistic child's family must have found a cure that the other more severe autistic child's family didn't have. This situation, to me, is scary because I would hate for a parent to treat their child medically because they heard of a treatment that was effective for a condition that is incorrect ya know?

Anyway, what do you think? I wrestle with figuring out these issues all the time because my job is to decide what to "call" kids and qualify them for services. Let me know!"

Me: "Thanks for your input, Court. I'm always interested in your take on the situation. I listened to a few radio shows about this yesterday as I caught up on my NPR podcasts and I feel a little better about it on one hand and that much more confused on the other.

The first story, advocated for taking away all of the various labels, because what's happening in some places (it happened to us here) is that the kids who fall under the PDD-NOS and Asperger's aren't qualifying for services, because they are so high-functioning that they are seen as high need. That is soooo not true. Otherwise, how do we get to the point of success that some kids reach? Those that no longer fall on the spectrum at all. So if we classify them all as simply "Autistic", they will have access to services just like any Autistic kid.

Yeah that makes sense to me.

Then I listened to a very articulate man who has Asperger's. He said that while he could understand the point made earlier, that he had a real problem with being placed in the same category as an Autistic person who has the severe delays such never speaking and never being potty trained. He was concerned over the stigma that people with Autism already face, being applied to him. A person who certainly has social issues, but is so high functioning that he is able to have a successful career and life in general... well the typical idea of a "successful life". Because my idea of what makes for a "successful life" for my kid has become quite different.

So all in all, I don't feel quite as weirded out by the proposed changes, because I think their goals are just and could lead to better services. As for the view from members in the Asperger's syndrome, it's an understandable concern. It just helps solidify my goal in helping to further the average person's education on Autism in general. We'll all find ourselves confronted with it at some point in our lives, whether it's our kid, the neighbor kid, our niece/nephew, or the kid greeting you and giving you a grocery cart at Walmart.

So in the mean time, I'll continue my quest to write about it and share my idea of what it means to Think Differently about Autism.

Thanks for weighing in, Court! XO"

Courtney: "Oh my goodness, Friday I went to work and we had representatives from the region autism society. Talk about confusing! First they started out saying that autism was defined as a lifelong neurological disorder. So in the question and hopefully answer segment, I asked "so if researchers have determined that this is a lifelong neurological disorder, does that mean they know that people with autism are dealing with the same type of neurological dysfunction and what that dysfunction is?" She they both start just shaking their heads no.

So the "experts" go on and talk about how we as teachers go accommodate autistic children. They go on and on about what autistic children may or may not need. But it was awful because they started stating what autistic kids aren't going to be able to do and what autistic kids are going to hate. But they went on and on to the point where they were talking about how they can hate writing or other serious basic aspects of life. I could see on the other teacher's faces, it was like "so your saying I shouldn't push for kids to adhere to basic expectations or accommodate every tick these kids have?" It was just bad.

They shouldn't even put all autistic kids in the same category. It would be like telling a doctor to treat you for an illness, and not telling the doctor your symptoms. It doesn't really help.
Anyway, after that I was visiting with the Gifted and Talented teacher, and we share several "autistic" children. We decided that we are going to look back in 20 years and feel really silly about how we groups all these kids together that obviously have different syndromes and called them by one name.

What do you think?"

Me: "I think that I am sooo thankful that there are educators like you in the world, Courtney. I wish you could meet Abby's teacher. I think you both would have many things in common.

I think that the issue with putting people with so many varying factors under one Umbrella Diagnosis, is that you'll get some doctors and educators who will attempt to treat them all with the same treatments. And as any of us who work/live with those in the Autism community knows, they are all different. So this concerns me.

On the one hand, I appreciate the idea that if you're simply diagnosed as being Autistic, you'll be eligible for more services, where Abby was denied further services, because she "isn't severe enough". Awesome. (My "awesome" here is sarcasm for any people reading who might not know that sarcasm is my native language.)

But on the other hand, I've experienced first hand the pediatricians who have read one or two "Autism Symptoms" forms and have told me repeatedly that my child was "normal", so the general umbrella concerns me. How many children will not respond to the "standardized" treatments/therapies and then go untreated or worse yet, will it give insurance agencies the right to deny coverage for the parents/teachers/therapists who seek other treatments/therapies outside of the standardized set of approved treatments/therapies regardless of their proven successes?

I do however agree with calling it a "lifelong neurological disorder." Because I think it is. I've gotten some flack for this theory, but it's what makes sense in my mind. I liken living with Autism to being an Alcoholic. I don't believe that a kid with Autism can be "cured", but I do believe, whole heartedly, that a child can learn to manage their Autism. An alcoholic can stop drinking entirely and learn to curb, or manage, their addictive cravings, but they are indeed still alcoholics. My sincere hope and goal is to help Abby manage her Autism. I foresee a day when she is in a social setting and will feel an Autistic tick coming on. She can either explain it with confidence and eloquence to her company, or she can simply excuse herself to a private space to allow her some time to let the tick pass. When I speak of "Thinking differently about Autism", I hope that we as a society will learn to view the Autistic ticks that these people live with and excuse them as normal for those people. That's my sincere hope.

So the fact that it's a "lifelong neurological disorder" doesn't mean we give up hope, or place them all in the same diagnostic category, or the same treatments/therapies, it simply means, to me, that we learn to live with it, in spite of it, and thrive with it.

I know that Abby will find her path in this world and whatever it is, she will be successful, however she chooses to define success.

"Whatever you are, be a good one." -Abraham Lincoln"

Thanks for being such a great friend and teacher, Courtney! XOXO

Skateboarding is NOT a Crime!

2010-02-19T13:58:00.001-08:00

I recently ran across an essay written by Steve Berra, who was famous amongst skateboarders before skateboarding was "cool" in places like Post Falls, Idaho and small-towns across the Midwest. It's a topic that is near and dear to my heart. My little brother has been skating for about 20 years now and I once fancied myself a bit of a skateboarder. I sucked, but I loved everything about it. I about killed myself just this past Fall as I pushed around on my Wonder Woman board (that I got for my 19th birthday and will have FOREVER if Bean doesn't break it first) in the driveway with Bean and Abby. I bailed hard and gave myself a seriously swollen knee and hobbled around for a week or so. It should be the last time I ever step foot on a board, because I seriously have no business pretending I can still ~~be a poser~~ skate. But I guarantee it won't be the last time. I love it too much to just let it go forever. Even if all I ever do is cruise around my driveway with the kids.

I really do still enjoy the sport. I don't watch it as often as I used to, but I still find myself getting lost in and being amazed by the videos my brother posts. He's pretty good, but I'm his sister, so I'm biased. Here he is with the Bean on his last visit here. I'm pretty sure Bean is hooked on skateboarding now, which is fine by me. Of course since I'm his mom, he'll be decked out head to toe in a helmet and pads when he gets his first board, but I'll defend the sport to anyone who dare talk trash about it. If you don't like them skating on your property, then donate funds to create places that they not only can skate, but want to skate. Too many cities combat the "problem" by building outdoor skateparks designed by some dude who's never stepped foot on a skateboard.

Ok... I really could go on and on about this topic, and maybe I will again someday, but for now I'll simply post both the video of Bean with his Uncle Jeremy and the essay by Steve Berra. Please Support your local Skatepark!!! Oh! And every city needs not only an outdoor park, but an indoor park. Skateboarders are here to stay and what are they supposed to do when it rains or snows?

(that's Abby screaming in the background,

because she wants to go back to the playground.)

A New York Times article said recently this business we're in, skateboarding, is a $5 billion a year industry. This astounding figure brings two questions to mind; how is there so much money being poured into something that's totally illegal everywhere you go? And where the hell is all the money going? Two things for sure; not in my pocket and certainly not into building adequate places where skateboarders can actually do the one thing that continues to keep skateboarding alive. And that's to skateboard.

So why has it continued to thrive? Well, by our very nature we're a creative group, a persistent group and a somewhat lawless one. If we've been told not to skate, we leave and come back only in the middle of the night with lights and generators. If a rail's been knobbed, we de-knob. If a ledge has been skate-proofed, we unskate-proof it. If there are cracks in the concrete, we bondo them. If there's a kink on the end of an otherwise perfect rail, we cut it off. It's what we have to do.

Two years ago I came across some pretty heavy criticism for making skatespots. My position was always this: I'd rather make spots skateable than not skate at all. Nowadays, there isn't a single issue of a magazine or a video where I don't see a spot that's been tinkered with to make better or completely manufactured altogether. Why? Because skateboarding is illegal everywhere you go and to those who would like to see it stay alive do what they have to do to keep it alive. It's the natural order of survival, it's the evolution of things. When swimming pools were becoming harder and harder to skate, the first vert ramp was born. When vert ramps weren't readily available for every kid on a skateboard, those kids took it to the streets and they did this because they'd rather have places to skate than not skate at all.
It's called change.

(Essay and photo from here)

Things change. Boards change, shoes change, tricks change, skaters change. Change is the manifestation of time and time has shown us that skateboarding is here for as long as we, as individuals and as a community, create it into existence. Although not nearly enough of the $5 billion a year being made in this industry is being appropriated to building places where we can do it, there are enough rogue individuals out there continuing to make it happen. Whether it be by building ledges at a remote spot just east of downtown like Jason Hernandez, constructing mini-ramps in our backyards like Mikey Taylor, concreting pole jams into the ground like Emmanuel Guzman, or buying buildings and constructing skateparks inside them like Eric Koston and myself, we continue to grow because our will to skate and our will to survive is just that strong and because the only alternative is to quit and die. But we at the Berrics believe that life was made to live out of, not die out of. There's nothing special about death. Anyone can do that. -- steve berra

Holiday Card Project

2010-02-17T09:23:00.001-08:00

In case you haven't noticed, I've added a section in the sidebar titled "My Holiday Card Project" where I am keeping you updated (and me organized) about how many cards I have done for the project.

(This card is so cute in person. Each tree is separate, so there is some real depth to the card.

2 different cards used to create this one.)

It's still so early in the year, that who knows what will change in the months to come. But my tentative plan is to keep making them for as long as my supplies last me (email me at erinkj05@gmail.com to donate your used holiday cards) and then sell them online, probably at Etsy, and maybe also do some of the local church bazaars or a local card shop.

(2 holiday cards & misprinted wedding invitations, from a print shop,

were used to create this card)

I'm pretty proud of myself for having 71 done and it's only mid-February. If my supplies last and I keep this pace up, I should be able to make a fairly decent donation. I'm excited!

(3 holiday cards used to create this card)

Abby has PDD-NOS... I think.

2010-02-15T06:44:00.000-08:00

Physicians involved with developing the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) are attempting to change the Diagnostic Criteria for Autism Spectrum Disorder (ASD). They are making efforts to more accurately diagnose individuals with Autism and avoid over diagnosis, which many people, most of whom I'd be willing to wager are people without kids on the Spectrum, are very concerned about. Don't get me wrong, it's certainly a concern, but I'd rather there be kids out there getting some one on one help with their issues, than simply being told they're "just fine" when in actuality, they aren't. This attitude of "over-diagnosis" is certainly contributing to the stigma surrounding Autism. And I want us all to start Thinking Differently About Autism.

The DSM-5's new criteria would do away with the diagnosis of PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified)... Abby's diagnosis. This could be good, but it kind of freaks me out. Why? It is a vague and confusing label. "So does my kid have Autism then, because her label doesn't say she does?" Losing that diagnosis freaks me out, because Abby went to three pediatricians who looked at only a few of the typically "Autistic" symptoms, disregarding everything I'd just told them, which were typical symptoms of people with PDD-NOS, and then repeatedly told me she was "fine". Well she wasn't.

Getting the PDD-NOS diagnosis enabled us to not only get her help from an outside source, but for me and my husband to find the information we needed to focus on parenting her in the ways she needed us to. We started reading books about Autism, instead of Milestone books for typical kids that just confused us. When I think of all the times we put Abby in time-out for trying to "communicate" with us in her limited, autistic way... it breaks my heart. How many times I disciplined her for displaying typically "autistic" behavior? Behavior that was "normal" for her and that she didn't know was "wrong". I should have just followed my instincts, but I was hoping my instincts were wrong.

Here is About.com's definition for PDD-NOS:

In essence, it's a diagnosis that means

"on the Autism spectrum, but not falling within any of the

existing specific categories of Autism."

To explain more fully, there are five disorders that fall under the category of PDDs. These include Autism, Asperger syndrome, Rett syndrome, Fragile X syndrome, and PDD-NOS. Austism, Asperger syndrome, Rett syndrome and Fragile X are all specifically described in the DSM-IV... the manual that practitioners use (barely) to diagnose neurological disorders.

Many children have some symptoms of on PDD and some symptoms of another, but not enough of any one of the four specific disorders to receive a diagnosis. Thus, they DO have a PDD-- but they DO NOT have Rett syndrome, Fragile X, Asperger syndrome, or autism. As a result, they receive the catch-all diagnosis of PDD-NOS.

So does that clear it up for you? Because it barely clears it up for me.

"So my kid doesn't have Autism?"

The hope-filled question that I've asked her teachers, therapists and social workers before.

"Oh, no. She has Autism." they assure me.

So maybe getting rid of this vague label is good. But then my question is... what's her new label and does she need one at all? Why are we so anxious to put a label on our kids? Why her? Why me? Why us? WTF am I supposed to do with this "new" information?

We need the label to tell insurance providers, pediatricians, Abby's typical friends who are learning how to communicate with her, ourselves to remind us that we have to "Think differently" about the way we raise her, anyone who will listen and learn about this disease that affects 1 in 100 kids, and for the people who stare and wonder "What is wrong with that kid?" ("She has Autism. What's wrong with YOUR kid?")

Other than that, I could give a shit less about labels. She is Abby J and she is practically perfect just as she is.

*NOTE* Please take a moment to read the comments associated with this posting. There is some interesting conversation there that adds to this post. Thanks!

Let's Count

2010-02-14T22:08:00.000-08:00

A great reminder not only for those of us with loved ones on the Spectrum, but for us all in general.

via here

She's a Lover AND a Fighter

2010-02-13T12:19:00.001-08:00

Abby loves Valentine's Day. She's been looking forward to it since the day after Christmas. I woke up a couple of weeks ago, walked into the living room where Bean said, "Good morning!" and Abby said, "Happy Valentine's Day, Mom!"

I'm not one of those people who decorate's for every holiday. I don't have anything against the holidays, they just usually sneak up on me and are here before I know it. I have heart window clingys that I guess I should have put up at least, but I'm just not motivated for it this year. December and January have been a whirlwind for me and I feel like I'm playing catch-up... and losing.

But I'm taking some inspiration from Abby. I bought her a new dress covered in hearts and her Grandma D sent her a new Angelina Ballerina movie that had a heart shaped locket with it. It's the first necklace Abby will wear.

Abby doesn't like chocolate which was very fortunate for Bean and I, because she took great joy in feeding us all of her chocolates she got from school. He wore almost as much as he ate.

This is one of the Valentine's that Abby brought home from one of her favorite friends at school. I thought it was so cute!

We bought our Valentine's this year, because that's what Abby wanted to do. But I think we'll make them next year. I found this idea on Design Dazzle and I think it would be a really fun project for Ab and I.

Toni found this idea here

We are enjoying a quiet day at home today and then my honey and I are going to a movie tonight. I hope your Valentine's Day is exactly what you want it to be.

Happy Valentine's Day!

30 Packages of Pull-Ups or...

2010-02-10T08:43:00.000-08:00

... or these adorable flats by Chloe.

If you have an extra $310 laying around, you can find these here

How adorable would these be with Spring dresses or a pair of Boyfriend jeans? I love them. But my baby boy needs his pull-ups... $310 buys you 1,240 of them. This is how I shop these days. Which means we have plenty of pull-ups and I buy my shoes at Target for $12.99

I'm Not Sobbing. At Least Not Today.

2010-02-05T12:07:00.001-08:00

I wasn't planning to post about this quite yet, but I'm so bothered by someone's insensitivity that I just have to share. I've been brainstorming for a while now for a way to raise money to make a more sizable donation for Autism research and awareness than I could do on my own. This year, I believe I've found it. Sure I stole the idea from here, but it's a good idea, so why be original? I have asked my friends and family for their old, used Christmas & Holiday cards to repurpose into New cards that I will be selling this coming Fall for the 2010 Holiday Season. All profits will be donated to further Autism research and awareness.

Key word of the day... AWARENESS.

I subscribe to our local Freecycle.org group. If you don't belong or are unaware of what FreeCycle is, please check it out and consider adding it to your routine. It's really a great service. With that said, our local group has a moderator that could use a lesson in tact.

Tact

Pronunciation: \ˈtakt\

Function: noun

Etymology: French, sense of touch, from Latin tactus, from tangere to touch

Date: 1797

1 : sensitive mental or aesthetic perception <converted the novel into a play with remarkable skill and tact> 2 : a keen sense of what to do or say in order to maintain good relations with others or avoid offense

While I utilized FreeCycle quite a few times in Vermont, I had yet to give or receive anything from the group here in Michigan. So this was my first time posting since signing up a couple of months ago. They have some rules and regulations, just to keep things simple and organized. After all, their main goal is keeping things out of the landfills, which I appreciate. I forgot a few of the formatting rules, so my post was denied. Here's an idea of what I typed in my request...

"I might be late getting out this request, but I am wanting used Christmas cards to repurpose into New Christmas cards to sell next Fall to raise money for Autism Awareness. Blah, blah, blah... (some more info about making the cards, nothing about me or Abby or Autism)... blah, blah, blah. I have a daughter with Autism and have been looking for a way to raise money. This is it!"

This is the email I got from the moderator denying my request.

"Per posting format, you need to indicate area where YOU live, in subject line; resubmit....and when you do, only the first sentence of your text body is sufficient. One does not need to detail their "reason" for asking, to keep something out of the landfills..and sob storys aren't allowed. T/y."

And "sob stories" aren't allowed!?!!! OMG!

Where did I sob in that request?! As a matter of fact, I think I might have been smiling and typing with a bounce in my fingers as I typed up my request. Sure there have been days when I've asked "Why Me?!" in my adventure parenting a kid with Autism, but I wouldn't trade her for the world. If my option was to have no Abby or Abby just as she is, you better believe I'd choose her just as she is a thousand times over!

This was my response to the moderator... my fingers were shaking with anger as I typed this up. I could see the point the moderator was trying to make and yet I was feeling like I had to say something to point out their lack of tact.

"Sorry. This is my first posting and it's been a while since I reviewed the format specifications. Have to admit I'm a little offended by the reference to "sob story". I don't feel I have a "sob story". Just a kid with Autism who I think is pretty close to perfect just as she is. No need to sob. With that said, I understand the point you so "eloquently" make and will keep my resubmission short and sweet. Thanks."

I thought about telling them off and unsubscribing, but that would just hurt me, other users of the site and landfills. So I just kept it brief and calm, considering I was so pissed! OH! And by the way, I've read other requests for items that detailed a families dire economic situation, so I hardly see why sharing the reason I'm asking for used Christmas cards as being a sob story.

Abby's Autism is mild. I could pretend it wasn't there and people might just think she's a bit weird, if they even noticed anything at all. The reason I don't do that is because I think we need to "Think differently about Autism." With so many kids diagnosed, people are going to find themselves in contact with someone who has it at some time or another. I LOVE when people ask me about it. I LOVE to educate them with the little bit I know about Autism and give suggestions for how to interact with people who have it. Our story is not a Sob Story. It's simply our story. Some days the stories are light and funny, sweet and touching, sad and frustrated. Just like anyone else's. We have good days and we have bad days. We have days that are full of original thought and conversation and then days that are filled with frustrated, non-communicative screams and days that it seems Abby is stuck reading the same script over and over again.

Sure I've sobbed at times.

Who hasn't?!

But our story is NOT a sob story!

It's a story of love, acceptance, perseverance and victory!

Being Abby's mom is a joy that I thank God for daily.

If any of you would like to donate your Holiday cards, please contact me at erinkj05@gmail.com. Thanks.

(All images are holiday cards that I've made out of repurposed cards, paint sample cards, old brochures from spas and apartment buildings, print shop clippings, etc.)

I've made 41 cards so far and I've only just begun!

UPDATE: I received a kind and TACTFUL reply from the moderator and I'm much less pissed now : )

It was the way it should have been worded initially. She basically reiterated her initial point and pointed out that "sob story" is the term they use in the rules laid out for the postings and she meant no disrespect in quoting it to me. It was all said in a manner that was not at all rude and finished it all up with "Good luck with your request! It certainly merits a good cause. ;o) " I stand by my original annoyance, but I'm less pissed and I'm glad she took the time to respond in a professional manner.

Art is the Creakiest Stair

2010-01-30T18:53:00.000-08:00

I think I stopped paying attention to those "milestone" things when Abby was about a year old. You know the lists in books, magazines, websites, etc. I do get one that is sent monthly to my email inbox. It's kind of a good one. Not too specific and with good ideas for discipline, food, and whatnot. I always read the 2-year-old ones that come in regarding Bean, but generally just delete the ones related to "Your 4-Year-Old". It's just been too heartbreaking to read about what other typical 4 year olds might be doing, because Abby's not.

(2 years old, she wouldn't stop to let me comb her hair or even to feed her.

She was on a coloring mission that day!)

Well for the first time... it fit. Here's what it said.

Artist at Work

People, houses, and rainbows are favorite subjects for preschooler artists. Now, not only is it easier to recognize what's in your child's pictures, she actually planned to draw that specific thing. Younger children start with random scribbling and progress to make-it-up-as-they-go pictures. These days, though, when your child grabs a crayon, she often has a plan. Provide lots of opportunities to exercise this blend of creativity, dexterity, and intellect.

(Every artist needs a nose ring, right? She was 3 in this photo, trying on my nose ring... don't worry, her nose is not actually pierced.)

Abby does usually have a plan. She draws suns, people and towers. (she loves cellphone reception towers, smoke stacks, etc, and always points them out as we drive. We have a steam tower in our hometown and "he" and Abby are special friends. She worries about Tower-Do, as she calls "him", during rain, thunderstorms and fireworks in July.) It's been really fun watching her artistic side come out. She comes from a long line of artists and if you ask her what she wants to be when she grows up she answers, "An ARTIST!!" before you can even finish asking the question. Her Great-Grandma Nina would be as proud of her as I am.

This is our dear friend, Kari, with Abby a couple of years ago when we were still living in Vermont.

She is not only one of our closest friends,

but she is one of our favorite artists.

Check her out at karimeyer.com and remember... buy art!

Mosaics

2010-01-22T22:43:00.000-08:00

The external wall of the Grand Rapids Children's Museum is covered in this amazing mosaic. These photos don't do justice to the shimmer in the mirrored tiles of her hair below.

Another Artist

2010-01-22T21:42:00.000-08:00

Creating works of art at the Grand Rapids Children's Museum.

Mere Mortal Mother or Supreme Parenting Genius?

2010-01-19T10:28:00.001-08:00

My friend, Crystal, posted this as her Facebook status today. I thought it was a genius parenting move and have decided that it simply must be shared with all of you. Enjoy!

"Casey (her 9 year old son) woke this morning complaining that he was REALLY tired and wanted to stay home from school. So I told him, 'Fine, but you have to go back to bed and when you get up we're going to clean your room and then you have to help me clean the rest of the house the entire day.' Needless to say, he decided to go to school."

This has been officially added to my arsenal of parenting tools.

Kaleidoscope Family

2010-01-19T07:57:00.000-08:00

We went to the Grand Rapids Children's Museum a couple of weeks ago. I have a few more photos to post from that trip, but I'll start with the kaleidoscope shots, first. I thought these turned out really cool.

(I told Abby that she looks like a Walrus in this picture.

She thought that was really funny and laughed and laughed.)

My Last Belated Christmas Idea... I promise.

2010-01-17T08:21:00.000-08:00

Ok. I know, I know. It's mid-January. Enough with the Santa Clause stuff already. But this is too good not to share. I'm mostly posting it so that I remember to do it next year. Since I'm new to this Santa Clause stuff, I need all the help I can get.

You can go to this site, Portable North Pole, fill out a few details about your kid and then *poof* you have a personalized Santa video for your child. So cool!

Here's a little mock-up I did for Bean using info that fits him this past Christmas. I'll make new ones next year, but this is really so cool! I just had to share it! Check it out here.

Ok. This will be my last Santa posting until next Christmas. I promise. Maybe.

I found the link to this site on a new-to-me blog, Design Dazzle. (Thanks, Jen!) You should check it out by either clicking their name here or going to the link in my sidebar. Hope you're enjoying a relaxing Sunday and have a good week!

Changing Perspective

2010-01-13T06:39:00.000-08:00

Back in 2001 when the first season of Six Feet Under was on HBO, I was 23 and living temporarily with my father and step-mother in Montana. We never missed an episode and it was often one of the only times during the week that we all just hung-out together as a family. We loved that show.

So when we were recently gifted the second season of Six Feet Under and my husband revealed that he had never seen any of them, we finally found a way to fill the hole that the Soprano's left in our tv watching life. I rented the first season via Netflix and we're currently plowing through them. Even though I've seen them before it's as if I've never seen them at all. Sure I remembered the details of the episodes, but my perspective is totally different.

What's changed? I'm a mom now. Becoming a mother has changed my perspective of everything around me.

Everything.

The other night we watched an episode where the mother, Ruth, played by Frances Conroy, and Claire, played by Lauren Ambrose, are wading through some mother/daughter issues. Back in 2001, I think I saw the scenes mostly through the eyes of Claire. A 17 year old trying to figure out who she is and what life is all about. This time around, I found myself ~~bawling my eyes out~~ getting emotional as I completely related to her mother, Ruth, and it got me thinking about all the different things that have changed for me since becoming a mom.

Quite a few of the bloggers I follow have either recently had a baby or are expecting (and her, and her, and her, and her, and her, and they are adopting soon!). I wonder how their perspective is changing and what things will stand out most to them as their life inevitably changes.

My very first example of perspective change was realizing how much my mother loved me. I couldn't talk to her for the first month of Abby's life without crying. It was actually fairly annoying. I call to ask for my Grandma's chicken and rice recipe and next thing I know I'm bawling my eyes out, because I just imagined my grandmother as a new mother holding her children for the first time. I'm sure it was probably 75% hormones, but the other part was sheer realization of how connected by love we truly were. It was a beautiful time in my life.

When Abby was first born, I was home alone with her a lot. My husband was running a new restaurant and working 10-16 hours per day. She didn't do much in those first days, but eat (barely), sleep, poop, and scream (this became a theme for the following years). So I decided to re-read my favorite book, The Poisonwood Bible by Barbara Kingsolver considering I spent much of my time glued to a couch.

I couldn't do it.

Because passages like this, made me cry so hard when reading through my New-Mother-Eyes, that I just couldn't read on.

"... How we wives and mothers do perish at the hands of our own righteousness. I was just one more of those women who clamp their mouths shut and wave the flag as their nation rolls off to conquer another in war. Guilty or innocent, they have everything to lose. They are what there is to lose. A wife is the earth itself, changing hands, bearing scars... Sometimes I pray to remember, other times I pray to forget. It makes no difference."

I tried to keep reading and I just kept weeping. There were so many more passages that broke me when viewed through my Mom-Eyes. I still haven't re-read it. Though maybe it's time.

I've always been a person who embraces change. I crave it actually. I usually satiate my desire for change with a new haircut or hair color. I think this is part of what makes life interesting. I'm still the same little girl who pretended she was walking the Red Carpet in her plastic dress-up heels while watching the Oscars on tv, and the teenager who listened to Rage Against the Machine at top volume in her car, smoking a cigarette before cheerleading practice, and the young adult with a penchant for dark bars and dirty martinis. But now I've quit smoking and only drink martinis on special occasions and view the world through Mom-Eyes and it's fascinating.

My heart has grown three sizes (like the Grinch?).

I feel more passionately and the world looks different.

It's exciting and a little bit scary.

Footprints on the Carpet

2010-01-11T07:41:00.000-08:00

I'm changing things up just a bit here at The Gentle Giant. I hope you all don't mind. I'm planning to do more postings about myself, craft ideas, projects I'm working on and of course stories about Abby, The Gentle Giant. The thing is that I am just as much a Gentle Giant as Abby is. Like mother, like daughter, I suppose. But the description applies as much to me as it does to my little, Ab. Also, I've mentioned before that I'm cautious about becoming one of those parents... not that I'm even remotely close. I just want this blog to focus more on myself and my adventures as a parent of two kids, one of whom happens to have Autism. So this is one of those posts, which I'm hoping to do more of.

For those of you who play the Santa game, I found this great idea on a blog that I'm new to and wonder where it's been all my life... Not So Idle Hands.

I am sooo doing this next year.

Here are her instructions to create Santa's footprints. For my Wonder-Woman-Single-Mama friends who might not have a man's boot laying around the house, maybe pick up a cheap pair at Goodwill and keep one of them tucked away for this little project and throw the other out.

Find your man's boot and trace it onto a large piece of paper and cut out.
Then, use the "hole" for a stencil and use a fine mesh sieve to sprinkle flour onto the carpet.
Next, tap excess flour off of your stencil and turn it over next to the 1st one to make the other foot (turning it over makes it the opposite shoe, so you only have to cut one stencil.)

(all photos from NotSoIdleHands.blogspot.com)

For those of you who were at Bean's birthday party on Halloween, this is where I got the idea for the Jack-o-Lantern jars. Check out the pics and links on the lefthand sidebar of Not So Idle Hands. Emily has some great ideas and I'm excited to keep following her.

LIttle Miss Sassy Pants

2010-01-09T18:39:00.000-08:00

Abby has been so sassy lately. Whenever we tell/ask her to do anything she says,

"No! I have to say no!"

My first reaction to this is obviously annoyance, but I find myself thinking, "I'm just glad she speaks and understands language enough to back talk. After all, typical kids DO this." This is what a kid is supposed to do. This is how we learn to stand up for what we need. What we want. It's how we learn to negotiate. And how we learn what NOT to say to our parents.

But something else about it struck me. The part where she say's, "I have to say no!" Like it's an impulse she can't resist. She HAS to say no. Maybe she feels she really does have to protest. Before Abby had her words, she screamed. About everything. Doctors, friends and relatives would ask,

"What does she scream for or about? What are the situations that makes her scream?"

And we would answer,

"Everything."

Because even when it was something Abby enjoyed or wanted to do, she screamed. Like she was instinctually protesting. What if Abby really DOES feel as if she HAS to say no? What if there is something inside of her brain that just makes her initial reaction to everything "No!" even when the answer is yes. It will be interesting to watch this phase of Abby's language development over the coming months. But in the mean time, even if she has to say no! she will have to learn the consequences of her Sassy-Pants attitude. Like everything in our life, this should be interesting.

Happy New Year!!! (7.days.ago)

2010-01-07T11:45:00.000-08:00

Alright, alright. I know. I'm late. But for those of you who know me, you didn't really expect my New Year post to be done ON New Year's Day, did you?!

We stayed home.

Watched movies.

Ate snacks.

Watched the countdown.

Abby almost made it.

Here's the progression:

Getting sleepy... approx. 11:45 pm.

Slipping further... 11:49 pm.

Not gonna make it... 11:51 pm.

And gone! 11:52pm.

Bean on the other hand rallied until at least 12:30 when we caught him out of bed, sitting on the couch playing with toys in the light of the Christmas tree. He's a partier, that one.

Abby Met Santa This Christmas

2010-01-02T06:54:00.000-08:00

I really meant to write this like the day after my last Santa inspired post, but life has been oddly busy. I say odd, because I actually have barely left the house. We've all been sick. This weird cold that seems to get better one day only to feel worse than before the next. Abby has surprisingly been surrounded by sick people, but has only sniffled twice. I'm very thankful. Apparently those gummy vitamins really work.

This Christmas was a lot fun. This year, Abby REALLY got it. She has been in love with the movie The Polar Express since last year. I can't even begin to tell you how many times we've seen it over the past year. Since I never believed in Santa as a kid, it's been a challenge for me to play the Santa game, but as soon as I caught on to the "Naughty vs. Nice" brilliance, it's all starting to come together for me. In the days leading up to Christmas, I was able to bring to mind for Abby the scene in The Polar Express where the alarm goes off signaling to the elves that a boy in New Jersey was in danger of getting on the naughty list at the last minute for putting gum in his sister's hair and then... lying about it! *gasp* It's a very serious matter.

(Abby & Bean listening to their Dad read Olivia Helps with Christmas... they make him read this book over and over all year long)

And apparently Abby does not take "Naughty vs. Nice" lightly when it comes to Santa Clause. She was being particularly whiney just before the holiday. I'm guessing it was partially missing school, partially that she is four years old and partially because there were new family members around who weren't privy to her game.

(Abby's Uncle)

So I said to her,

"Do you know what is happening in the North Pole right NOW?!"

She shook her head, "No."

"An alarm is going off and the elves are saying, "Abby in Michigan is not speaking very nicely to her family. Should we put her on the naughty list?"

Her eyes got big and I asked her, "Do you want to be on the Naughty List or the Nice List?"

She answered, "I want to be a nice girl."

"Ok, then. Please stop whining and use your nice words."

And it worked. It's genius! (Mom, you really should have considered Santa if only for that reason. Though I do seem to have a faint memory of you trying to use it a couple of times. Nice try, Mom. Nice try.)

("Daddy! Do you want to cook Santa?!!!")

Abby attended a breakfast hosted at the Muskegon Art Museum the weekend after Thanksgiving where she got to meet Santa. She sat on his lap, which is a miracle. Up until this year she regarded Santa with the same affection as one would reserve for the clown from Stephen Kings 'It'. (He's just a clown, I shouldn't be afraid... but he's so terrifying.) She'd watch from a distance, but when asked if she wanted to sit on his lap, she'd scream with the same intensity that she used, well, for everything else really. But this year, at that breakfast, she sat on Santa's lap and when he asked what she wanted for Christmas, she whispered,

"Super Why!"

Of course, Santa didn't hear her, because not only did she whisper it in her patented barely audible whisper, but she also said it about 10 seconds after Santa asked the question. By then he'd moved on to saying something else. But Abby's Dad was there and he was paying attention. He saw her whisper "Super Why." I imagine she must have been discouraged that Santa didn't hear her.

That's the way it is with kids with Autism. For the ones who do talk, they need a bit more time. I usually tell people to wait longer than they think they need to and then wait a few more seconds. Abby usually answers all questions posed to her, she just needs more time to process the question. Sadly, many people miss her answers.

We waited to put any gifts under the tree until the kids were in bed, telling them that Santa doesn't come until they are asleep. Abby took this very seriously and was asleep within minutes of going to bed. She apparently wasn't taking any chances, what with how close she'd come to the naughty list and all. My brother joked that she'd probably lectured her little brother on not "screwing this up!"

(After Santa had visited)

They were thrilled when they woke up on Christmas morning to find the tree surrounded by gifts. And one in particular said on the tag, "I heard you tell me what you wanted. To: Abby J, From: Santa" She started to open the package with little regard for who it was from, but then when she saw the familiar eyes of Whyatt from Super Why, she stopped dead in her tracks. Her face went white. Her eyes were huge! She dropped the gift and ran out of the living room into the dining room and looked from afar. Trying to process what she'd just experienced.

Santa was real!

He had to be! I could see the wheels turning in her head.

There was Super Why.

From Santa.

He said he had heard her!

(Christmas Morning)

We finally coaxed her back in to finish opening the gift. She finished opening it only to drop it again. She was shocked!

It took her quite a while to wrap her mind around the fact that Santa had heard her request and brought her Super Why. She was so excited! For the first hour that Whyatt was out of his package, Abby had to cover his eyes. She needed more time to process the miracle of actually receiving what she'd asked for.

(holding her brother's Alpha Pig and her Super Why)

The note that Santa left for her and Bean said,

"Dear Abby & Bean,

Thank you for the milk & cookies.

I was so hungry after flying all around the world.

I saw the Great Wall of China and the pyramids in Egypt.

You have both been very good kids this year.

Abby, I enjoyed meeting you at the breakfast with your cousin, ______.

I hope you enjoy your gifts.

Be good listeners and try your best to be big helpers.

Love, Santa."

She was once again amazed and for me, it brought back all the magic of Christmas.

It was truly a morning to remember.

A belated Merry Christmas and Happy New Year to you and yours!!!

(Our first Christmas in our new home)

I Knew In a Moment It Must Be St. Nick! His Fingerprints Were Everywhere!

2009-12-27T07:15:00.000-08:00

I never believed in Santa Clause.

Not ever.

There are a number of reasons why my mother didn't play the Santa Clause game. All were good reasons and I respect her decision to this day. Here are a couple of her reasons:

My mother used to wear a brooch during the holidays that said, "Jesus Is The Reason For The Season". She wanted us to celebrate Jesus' birth and the gifts we received were simply symbolic of the gifts brought that night to the manger by the three wise men. She taught us of the evils of rampant consumerism and to be genuinely thankful for each gift we were given.
My mom was a single mom and she worked hard for every single thing we had. Why should she be expected to write the name of some fictitious entity on the gift tag when she'd either worked extra hours, away from her kids, to buy it or stayed up late, sacrificing precious sleep, to make us the quilt we'd cherish for years to come. She wasn't about to let Santa steal her thunder.

How did this affect her children? I don't think it had any real ill effect on us, nor did it make us exceptionally well-balanced or anything. And though I respect her decision to not foster a childhood belief in Santa Clause, both my older brother and I have decided to ~~lie to~~ teach our children about Santa Clause. Here's the main reason I choose to ~~lie to~~ perpetuate the Santa Clause myth:

When I was in the first-grade, I felt superior to my classmates, because I knew there was no Santa. I had not been "lied to" my entire life and felt that my friends had been done an extreme injustice. I probably shouldn't have been able to watch so many episodes of Perry Mason as a kid.

On one specific playdate, I was bound and determined to prove once and for all that my classmate from school, Valerie, had been mislead into believing a horrible and malicious lie. It was a mass conspiracy involving her parents and that strange, creepy man in the red suit at the mall who's lap she'd sat on. *shudder* Clearly I was doing her a favor.

She asked me, "Then why are there presents under the tree from Santa?"

I answered, "Uh, because your parents put them there."

She simply couldn't believe this was possible.

"Doesn't Santa come on Christmas Eve?" I questioned her.

"Yeah..." she ventured.

"Then why are there already gifts from Santa under your tree when Christmas isn't for another week?!" I exclaimed. I knew I had her there! Who could question such a logical observation?

Apparently I had underestimated the hold that the Santa myth had on poor, mislead Valerie.

"Because Santa can't possibly visit ALL the houses all over the world in one night! He dropped them off here early." she answered confidently.

Obviously this had already been "explained" to her. I launched into an explanation of the "Magic of Santa" and how his ability to visit every single house in the world in one night was part of what made him supposedly "sooooo magical!"

I harnessed all of my six-year old detective skills and asked Valerie to fetch me a sample of her mother's handwriting. I was obviously going to have to bring out the big guns. We sat crouched in her living room, under her decorated Christmas tree. I held a piece of paper, maybe a grocery list, with her mom's handwriting on it next to a gift tag signed, "from: Santa".

Valerie couldn't deny the obvious similarities. She ran crying to her mother.

I was so satisfied with myself. I'd saved one child from a childhood of lies. What a saint I was! Sure I felt a little bad. I didn't want to make my friend cry, but as the saying goes, you have a break a few eggs to make an omelet. Right?

Soon I was face to face with Valerie's mom. She looked at me like I was a horrible child. I'd just undone all the magic she'd worked so hard to create in her daughter's mind. What kind of kid would do that?! "You might not believe in Santa in your house, but in this house, we like to pretend and have fun at Christmas! I'd appreciate it if you'd keep your beliefs to yourself." I shrugged it off and thought, "What a liar!"

But I did always feel a little bad. Poor Valerie. I'm sure the magic of Santa was gone for her, no matter what her parents did to repair the damage I'd done. It also damaged our friendship forever.

I went to a private school the following year and for the year after that. When I returned to the public school system, it was to a different elementary school. And when Valerie and finally met up again in the 7th grade, she was not as keen on rekindling our friendship as I was. I actually almost got into a fist fight with a close friend of hers our Senior year of high school, because I kissed a boy Valerie had a crush on. I didn't even know she liked him. I felt terrible about the whole thing, but it didn't matter. I was clearly a terrible person. Not only did I crush her childhood Christmas fantasies, but I also kissed the boy whom she had a crush on.

And so I'm doing my part to save my kids from being "horrible" like their mom.

I don't want my kids to be terrible crushers of children's dreams. My kids believe in Santa. I hope this atones for the damage I did to poor Valerie's psyche.

For what it's worth, I'm sorry, Valerie. Wherever you are.

(all photos found via Google images)

The Abby Scarf

2009-12-16T16:18:00.000-08:00

For anyone who would like the Abby Scarf from Kusala Knitworks, just send an email to Jenifer at kusalaknitworks@gmail.com or send her a custom item request from her Etsy shop.

She sold out, which is awesome! But she'll make more! Even more cool. Seriously amazing, Jen. Thank you!

And don't forget to go visit Dani & Brodie!

We Have Some Great Friends!

2009-12-16T06:30:00.000-08:00

I've been meaning to get this posted for a while now. I was really hoping to get photos of Abby wearing her new scarf from my friend, Jen, but my rechargeable batteries are refusing to recharge and apparently I can't seem to remember to buy new batteries in the hundred times I've been at the store since I initially set out to do this. *shaking head in amazement* Some days I wonder how we make it through the day.

Anyway... my friend, Jenifer Rank, is one of the most thoughtful and giving people I've ever met. She really is amazing. Her latest venture is her Etsy shop, Kusala Knitworks, where she donates a portion of her sales to different charitable organizations depending on the item you buy. She has knit up a beautiful little scarf that she has named the "Abby" and with each purchase of the Abby scarf, she'll make a donation to Autism Speaks. This is incredibly sweet and such an honor to be a part of Jen's world. I bawled my eyes out when she first told me about it. I was so overwhelmed with gratitude. I know I should have posted this a month ago, but please, please, please go visit Jen's shop and cross that last minute gift off of your list. It not only helps out a good cause, but it supports one of the most generous people I know! Love you, Jen! XOXO

Then be sure to come on back, because I have another site I hope you'll go check out.

When I read through other blogs and websites about some of the treatments that some kids on the Spectrum have had success with, I wonder, "Are we doing enough?" So far Abby has done great just with the play/classroom therapies she gets at school and I'm so thankful, but is anything ever enough? I'll be interested in seeing the successes that Brodie and her mom, Dani, will hopefully experience with some of the things they are trying. Please take a moment to go read about the battle that this "Warrior Mom" is waging in the Trenches of Autism with her sweet girl over at I'm just that way and that's just me. I hope you'll check back with Dani & Brodie from time to time, because Dani is so smart, so funny and truly a Warrior Mom. She is an inspiration to me in so many ways. And she has great taste in music. : )

Thanks for supporting us in your thoughts, your prayers and I really hope that some of you will consider opening up your wallets to buy the Abby scarf for someone on your holiday list.

Fall 2009 Progress Report

2009-12-14T11:51:00.001-08:00

We recently received Abby's Progress Report for the Fall school season. They have 8 different categories and are graded for each age range (2-5) and are given grades as follows:

I - IEP (Individual Education Plan) Goal Area

P - Progressing

M- Mastered This Skill

Abby has Mastered everything in the 2 year old category, but is still being graded on a few things in the 3 year and 4 year category. Here are her "grades".

Social/Emotional

3 Years

Stays with an activity for 5+ minutes = M (mastered)
Begins to accept some correction/frustration = M (she still has a hard time with this at home)
Actively seeks parallel play = M
Begins to share and take turns = M

4 years

Stays with an activity 10+ min. = M
Follows class rules/routines = M
Completes tasks in small groups (with 2-3 peers) = M
Plays and interacts appropriately with 1-2 other children = P+ (though she ignores her brother a lot of the time... that's probably pretty typical)

Fine Motor

3 years

Copies shapes (horizontal & vertical lines, circle) = M
Builds a tower of 8+ blocks = M
Strings 4 or more 1/2 inch beads = P+
Undresses, attempts to dress = M

4 years

Demonstrates hand dominance = M
Cuts a straight line 4-5" = M (this is one of her favorite past-times)
Copies shapes (circle & cross) = M-
Draws a face with 3 clear features = M (her drawings are so cute)
Puts on coast, shoes/boots = M (we'll have to start doing this at home more, she fights us at every turn and suggests, "How about mom does it?")
Demonstrates mature pencil grasp = P+

Cognitive

3 years

Matches colors and shapes = M
Understands size (big/little) = M
Counts 3+ objects = M
Shows beginning knowledge of categories (food, toys, clothes, etc.) = M

4 years

Names 9 colors (r,y,o,g,b,p,bl,br,w) = M
Names 7 shapes = M- (I was surprised to see a minus on this one, because she can tell you all the basics at home, plus octagon, pentagon, & crescent)
Recognizes name in print = M
Counts at least 5 objects = M
Sequences 3 pictures = M

Language

3 years

Follows 2-Step, related directions = I (this is a big one to master for kindergarten success)
Uses 3-5 words in sentences = M
Names at least 25 common objects = M
Answers simple "what" questions = M

4 years

Answers questions about familiar stories = P+
Tells use of common objects = M-
Identifies actions in a picture = P+
Understands spatial concepts (in, on, under, etc.) = I (we're working on this at home, too)

Gross Motor

(I'm going to skip this section, because thankfully she has mastered everything in both the 3 & 4 year areas)

School Readiness (all ages)

Attends in a whole-group activity = P+
Transitions from one activity to another smoothly = M
Can do age-appropriate work/play independently = M-
Entering/Exiting routines (ie. backpack, folder, coat, etc) = M
Waits turn in a group activity = M
Participates in all required activities = M

Sensory Registration

Tolerates substances on hands/face (glue, cream, etc) = M- (she doesn't really like anything on her hands)
Tolerates movement activity when feet are off the floor = M (this is an area we've really seen growth. She used to be so scared to be lifted off of the floor.)
Tolerates being near others = M
Moves through room safely = M
Tolerates noise and light = P+ (she gets very nervous with loud sounds, despite the fact that she is often making more noise than anything else in a room)
Eats variety of snacks, food & drink = M (I'd give her an M- at home)

Oral Motor

(has mastered all of these... appropriate tongue movement, lip movement, air control, etc.)

Her teachers comments: (anything in parentheses are my comments)

Abby has been doing so well this year so far! It is great to hear so much more language from her this year, and it is good to see her seeking more play with peers as well. (She asks things like, "Wanna play a game?" even if she doesn't follow through with the back and forth play so well) she has increased her counting skills as well as her knowledge of letter sounds- she is able to name all of the letters already and the sounds are coming along quickly! (she has been identifying her letters at home for a long time now) She continues to be a joy to have in class!

She continues to be a joy to have at home, too!

Almost Half-Way Through Chapter Four.

2009-12-13T07:21:00.000-08:00

Have I mentioned how much I love my new laptop? I LOVE IT! I'm sitting on the couch next to my kids watching a second episode of Super Why (Abby's favorite!). We are all still in our pajamas and enjoying a lazy Sunday morning. I was inspired to write, because as I was zoned out reading the most recent issue of TIME magazine, Abby was trying to get my attention.

I've become very good at tuning out the world around me as I read, much to my husband's, and probably my children's, annoyance. But I'm pretty sure I've heard other mothers speak about this ability before. It's a survival tactic if any of us are expected to maintain our sanity amongst the squeals and screams of sibling rivalries, adolescent girls and/or the communication break-down that so often IS Autism. I was deeply engrossed in TIME's "Best of..." list for 2009, when I realized Abby was saying, "Mom, I want to talk with you!"

Whoa! No whine? No scream? A simple and straight-forward, "Mom, I want to talk with you." Amazing? Sure. But not what inspired this posting.

When she finally did get my attention, it was to tell me that she wanted to watch another Super Why as the first was ending. After I'd set up the initial episode to play from the DVR, she'd demanded, "Put the remote controls away!" I had joked, "Yes, Ma'am!" as I put the remote "away." When I reminded her of her sassy-pants instructions earlier, she smiled, wrinkled her nose and did a little sniff/half-laugh at herself.

She appeared so grown up to me as she enjoyed our little inside joke. I enjoyed it, too. Had the room been filled with other adults, it's likely that no one else would have understood our little joke. It wasn't really all that funny and deserved little more than the sniff/half-laugh that she bestowed it, but to me it spoke volumes.

It was the first time that she and I really connected on a more mature, inside-joke kind of level. My little girl is not a toddler anymore. For the most part she has shed the habits of a toddler and is now a small child. And I like it. I'm relieved.

I was reminded of something a friend said to me once a few years ago. Her daughter was just three and Abby was still a baby. I asked my friend, out of curiosity, if she planned to have any more kids. She answered, "No. I don't do so well with babies. I love them, but I'm better with kids." It struck a chord deep within me and I've thought of that often over the years.

I think it struck me, because at the time I was feeling guilty that while everyone around me was counseling me to "enjoy them while they are this little, because it goes by so fast," I was daydreaming about the day when I could have a conversation with Abby. I was longing for a little girl instead of a baby.

I was already keenly aware of how fast the time was flying, but I was grateful instead of sad. I knew what my friend meant. I adored my children as babies, but I'm happy to reminisce through pictures and memories, while making new ones. I might occasionally think warmly of Bean's tiny hand wrapped around my waist, tickling my skin as he nursed, but those memories are also accompanied by memories of sleep-deprived days when I was not at my parenting best. And while I might miss the feel of their tiny bodies in my arms, I do not miss those times when I felt downright "crazy". Not one bit.

I'm trying my best to enjoy these moments when my kids are small, because I know these moments are fleeting, but I'm so looking forward to inside jokes, hearing stories from my kids in addition to me telling stories to them and having real conversations with them.

It's the collective chapters that make a whole story. Like with every good book, I can hardly wait to get to the next chapter and in the end, as I finish the last chapter of our book, it will surely be bittersweet.

(All photos by Grandma Mary Johnson)

None, but Ourselves.

2009-12-01T18:22:00.000-08:00

Abby came to me while I was making dinner tonight and said,

"I'm so tired. Time to put on pjs."

I gave them to her and said that she could put them on by herself while I finished dinner. She needed a little help with her shirt, but she pretty much dressed herself. I was struck by what a big girl she is becoming and told her how proud I am of her. Then I scooped her up like a baby and asked,

"What happened to my little, tiny, Baby Abby?"

She told me she is a big girl. I said,

"I know, but you used to be my little baby and I would hold you like this, and rock you while I sang, 'Oh, pirates, yes they rob I. Sold I to the merchant ships. Minutes after they took I, from the bottomless pit...'"

This time she sang along with me.

She remembered and sang a few lines.

Word for word.

I melted.

When she was that colicky little baby, screaming in my arms, I would sing every song that I knew word for word to her. Not only in hopes that it would soothe her, but also as a means of soothing myself. And what song worked most often on my little Nordic, blonde baby? Bob Marley's Redemption Song.

"Free yourself from mental slavery.
None but ourselves can free our own minds."

Unimpressed

2009-12-01T06:42:00.000-08:00

I recently put up some Christmas lights in our front yard. I was quite proud of myself. This was by far the most lights outside that I'd ever done. I wrapped white lights up our swirling topiary bush, then multi colored lights on the shrub next to it and continued to alternate white and multi-colored lights along the bushes that line the front of our house. There are 5 decorated bushes in all and a peace sign I made last year hanging on the house. We are one of many houses in our new neighborhood that decorate with lights at Christmas. I was excited to show Abby our display.

She was fresh out of the bath with her pj's on, so I bundled her up in her coat and a hat and we went out to see the lights.

She looked at the neighbors houses, then ours and said simply,

"Needs more."

Then she walked back up the driveway and into the house.

Apparently my light show needs work. Clark Griswold I am not.

(image from 1989's Christmas Vacation via google images)

Giving Thanks

2009-11-26T07:32:00.000-08:00

Today I am thankful for so many things.

But specifically here on The Gentle Giant, I am thankful for:

* Breakthroughs big and small.

* Milestones reached, even if they are a year or two after

all the baby books said they would be.

* Hearing my girl say, "I love you, Mom!" even when it is followed by, "Now can I have cheese?" when it's an hour and a half past bedtime and she is reaching for some other way to stay up a little later.

* Realizing how "typical" that type of behavior is and relishing in those typical moments.

* Meeting such wonderful people throughout the blogosphere who encourage me to carry on, both in life and in my writing.

Happy Thanksgiving!

Today I hope people will take a moment to view Thanksgiving through the eyes

of the Native Americans and not the Pilgrims.

The Native people who were displaced from their homes and massacred all in the name of Manifest Destiny and "religious freedom".

While I always take time to count my blessings and give thanks on this "holiday" I also try to think honestly about the Native people of this beautiful country and remember them today in my thoughts and prayers. I hope you will, too.

Abby's Map

2009-11-25T06:34:00.000-08:00

I'm sure that some of my readers out there are curious as to what high-functioning Autistic even means. Some days, I wonder myself. Ha! So far what I've come to is that at times Abby seems totally typical. She will speak clearly, concisely and intelligently and we'll wonder, "Is she even Autistic? Am I raising her to think she has something that she doesn't?" And some of Abby's grandparents have expressed some similar concerns. I think it's valid to wonder. And even though I live with her daily and have been to the Parent/Teacher conferences enough to know that we're pretty much in agreement that she is somewhere on that broad spectrum of Autism, the line between typical and high-functioning Autism can be a bit blurry.

I had forgotten about this video. I recorded it a couple of months ago. I recently watched it again and found it interesting how it was such a good example of the tics that ARE Abby's Autism. This is a great example of what it's like when Abby's is "ASD-ing out" as I've begun to think of it. Much of the time she behaves very much like a typical 4 year old, but at times like this, she is definitely a kid who lands on the Autism Spectrum. She loves this map and often can point to many different States after being asked only once and can even tell you who in our family lives where, all without the various noises and hand tics.

She kind of pulls it together in the end, though I still have no idea what she is talking about at 1:55, something being raunchy? I don't know. But what makes this video such a great example is that it shows how she flows from typical to autistic behavior. And some days are better than others. Some days, the tics don't seem to affect her hardly at all. Other days, she seems consumed by them, finds it hard to communicate effectively and those are the days we experience more screams and whines.

Hope you are all remembering to take time to enjoy your days as we approach the busy holiday season. I am so swamped with homework and feeling so overwhelmed, but I'm trying to take time to enjoy my kids each day and to do something I enjoy. Yesterday I finished off the chalkboard I created on one of the cabinets in our kitchen. I get so much satisfaction from finishing these projects. Today, I am going to finish painting the living room walls and the bulkhead in the kitchen... and do a ton of homework. I hope. *fingers crossed*

Blogging at 1 a.m.

2009-11-21T22:29:00.000-08:00

I should be sleeping and my new laptop (yayyy!!!) is begging to be plugged in, but... I'm going to blog anyway.

We had an interesting afternoon today. Abby went out with her dad to run errands. They arrived home and I heard Abby screaming all the way in from the car to the house.

Whine, whine, whine, scream, whine, scream, scream, whine, whine.

That's pretty much how it went. I asked him if everything was ok on their errands. He said that she she had been fine. She wanted to stay outside, but he said she could go back out after lunch. I asked him if it was ok with him if she had a picnic outside on the deck. It was a brisk, but beautiful day. He agreed. Meanwhile, Abby laid on the floor and screamed through this whole conversation.

Scream, scream, whine, scream.

We tried over and over to assure her that she was indeed going to go back outside. We told her she needed to wash her hands before lunch, like usual.

Whine, scream, scream, whine, whine, scream.

"Abby. As soon as you wash your hands..."

Whine, scream, whine, scream, scream, scream.

you can go outside!"

Scream, whine, scream.

Hands washed, screaming the entire time, Abby was "escorted" outside, where she screamed some more about wanting to be outside.

Ummm... she IS outside.

She screamed until I sat in front of her, face in my hands saying, "Abby you ARE outside. Shh, shh. This is what you wanted. You're outside. It's ok. Stop screaming. You are OUTSIDE." I asked if she needed a hug and she took me up on that offer. She felt a little limp from all that screaming she'd done.I've been noticing lately that Abby has a tendency to hear what she wants to hear and sometimes, apparently, what she doesn't want to hear. Maybe this is human nature, whatever that means, but with Ab, she really has a hard time letting go. Once it's in her mind, it's stuck there, until something jars her attention to reality. And unfortunately, that can take some time. And can be a pretty loud ordeal. Ugh. Exhausting... for everyone involved.

Now before you start praising me for being so patient and understanding and you "don't know how I do it"(which I really appreciate btw)... I was not all patient and poised. I raised my voice a couple of times. I tried muffling some screams in an attempt to keep Bean from being woken up. Abby's dad and I had to trade tasks a couple of times to let the other one take a breather to regroup. I was glad he was there. We make a pretty good team. Keeping each other in check. Giving each other an understanding and knowing glance. Sometimes making the situation worse, by giving in to our frustration and taking it out on each other. But in the end, we love each other more for it. No one knows our child better than we do. We're all in this together. Thank, God!

2009-11-20T11:10:00.000-08:00

Melisa over at The Lil Bee does a recurring list of 5 things you'd like to accomplish in your lifetime. I love reading what other people have on their lists and today she is featuring MINE! This is such an honor as I read her blog almost daily. If you've never checked out the Bee, please do. She is funny, insightful and has great taste. She also just had a baby who is super sweet and if you are in need of a good laugh, go read about Melisa's adventures in lamaze class. Hilarious stuff, folks!

Gah! I'm just giddy! It really is such an honor to be mentioned on The Lil Bee! Thanks, Melisa!

Two Years Ago

2009-11-15T20:41:00.000-08:00

Abby's little brother, Bean (his nickname), was born at the end of October in 2007. She was so sweet when she visited us in the hospital. She was only 2 years, 4 months old and we were still being told she was just "strong willed". She barely spoke anything except to repeat what she heard us say. What we learned later was called echolalia. When she came into the hospital room to meet her brother, she climbed into bed with me and said that Bean was "sooo cute". I was terrified to have a brand new baby and a "strong willed" two-year old. But when Abby declared that her new baby brother was "sooo cute" I knew we would figure it out and that everything was going to be ok. More than ok... we'd be great.

Abby & Bean are great friends. He's starting to annoy her more and more these days, but she is learning to stand up for herself and I've realized that in many ways, Beanie will be her greatest friend and teacher. It's with him that she is learning how to be social. How to battle for what she wants and for what she needs. He makes her laugh and I think he pushes her to try new things and have more faith in her own abilities. Bean already speaks quite well for his age and says five new things everyday. I wonder if Abby's verbal growth this Summer had as much to do with her brother's talking as much as the therapies she had at school, too.

I'm learning a lot from Bean, too. Like that parenting is hard. Period. Having a special needs child for my first child, I assumed that most of our trials and tribualtions had to do with Abby's Autism. I was wrong. Bean challenges our patience daily and I tell you... when he looks me in the eye as he rips another leaf off of the house plant I just told him to be "gentle" with... the vein in my neck bulges and I think to myself, "he is soooo lucky that he is so freakin' cute!" Because, man oh man! It's a lot easier to keep your patience when you know that the behavior can be partially blamed on Autism. With a typical kid... not so much! Time outs are a frequent occurance in our home these days. And Abby is just the innocent bystander. For once... she is my easy child.

Oh, the terribly terrific two's.

(this is what most of the photos of the two of them together look like...
constantly moving and I'm too lazy to look up the correct setting to capture them.
One of these days...)

My Review of Euro II Grow With Me Chair

2009-11-12T06:32:00.001-08:00

Originally submitted at One Step Ahead

Built for growth spurts! Give your child our beautiful solid wood chair now, and someday he'll take it to college! Both the seat and footrest adjust to fit tots, growing kids, even adults up to 150 lbs. Built to last, and about half the price you'd pay elsewhere. Cushion included. Supports ...

I am buying chair #2 because we love it!

By Erin the Student of Life from Michigan on 11/12/2009

Gift: No

Pros: Easily Assembled, Easy To Clean, Durable, Stable, Comfortable

Cons: Not Enough Padding, Pad is cheap

Best Uses: Toddlers

Describe Yourself: Parent of Two or More Children

We bought this for my daughter and we love it. It matches our dining table & chairs and looks nice. It doesn't feel like we have a toddler chair at the table. We are buying a second one for our 2 year old son. My only complaint is that the cushion is poorly made. It fell apart & I've had to do some fancy fixing to make it look nice & function ok. But the chair itself is GREAT! I recommend it to friends all the time!

(legalese)

Stop The Presses!

2009-11-11T19:11:00.000-08:00

This is what Abby's dad's Facebook status says tonight:

"NEWS: This is the first night since Abrielle got the CD,

They Might Be Giants- Here come the 1,2,3's,

exactly 2 years-4 months-5 days that we have not played it for her when she goes to sleep.

This CD is her crack!

Yes that is right 858 days of the 1,2,3's.....

the funny part is I still love that CD just as much as she does.

Ahhhh, my lil Ab!"

Normally, the mere suggestion of listening to a different cd at bedtime is enough to elicit shrill screams of protest from Abby, which have more than once led to a meltdown. And yet tonight, as we got ready for bed and had a "Pajama Party with Two Dancin' Dogs" (from a Charlie & Lola book), she was willing to dance to something besides They Might Be Giants.
I was not sure I'd ever see the day.

Spinning

2009-11-08T13:07:00.000-08:00

Abby spinning round and round on the swing.

I so remember doing this as a young girl.

She even let her brother take a turn.

Have a Happy & Safe Halloween!

2009-10-31T08:07:00.001-07:00

Here's a few photos of our pumpkins and our carving/painting party. It was the first time that Bean had ever painted.

He was really concentrating. So cute!

I didn't know Abby knew how to draw/paint smiley faces until *BAM*

there was a smiley face on her pumpkin. What a fun surprise!

Her teachers say she loves to draw at school and when they have free-time, that's usually what she chooses to do. She comes from a long line of artists, so I shouldn't be surprised.

I've Been Thinking...

2009-10-22T06:05:00.001-07:00

I do a lot of thinking. Maybe too much sometimes. It keeps me awake at night. But what I've been thinking about lately has got me reevaluating why I keep this blog. It all started with that poor little "balloon boy" and the supposed hoax orchestrated by his father. Then I started thinking about that show on TLC, Toddlers & Tiara's and that got me thinking about the whole OctoMom thing. Maybe not the most seamless stream of thought, but I'm not a professional.

What do I have in common with these people? Not much, really. Other than that we all have children and we all put our kids on display. I like to think that I'm not in the same category as these people. I'm not fake-crying on the news about my not-missing-so-much-as-hiding poor, exploited kid. I'm not making Abby get a spray tan and her teeth whitened so she can earn that big sparkly crown. I'm not giving birth to 8 kids (THANK GOD) and then talking about it all over tv with enormous, collagen injected lips. But I am writing a blog about and posting pictures of my daughter on the Web. Is it any better?

Sure I tell myself that it's my way of raising awareness about the Autism epidemic. I make efforts to keep our specific location a secret, but I know that it's not hard to figure out our general vicinity. I use caution when I choose the photos I post, not wanting to show anything too specific to our home or town. Am I exploiting my daughter? Writing this blog has been so therapeutic for me. Not only does it allow me to share our story, but I work through some of my least proud parenting moments and then am able to reflect and find the good in each experience we have.

And the most wonderful part of writing this blog is all the great feedback I get from all of you! I've made a wonderful blogger friend who I seem to have a lot in common with. And I'm increasingly blessed by the comments I get from parents of "typical" kids, because I'm reminded that parenting is the most challenging blessing we've ever been bestowed whether our kids are "special needs" or not. And all of these things are good and noble, but when I'm really honest with myself... I write this blog for me. I hope that it helps other people, but at it's root, it's all about me. So why isn't it filled with photos of myself? Am I exploiting my child for my own personal gain no matter how noble my intentions? I don't know.

So today... I'm posting a photo of myself. This is me and while I write about my daughter, Abby the Gentle Giant, this blog is all about me, me, me and my quest to be the best mom I can be. Should I be writing a blog about it?

Maybe I should only post photos like this zoomy accident of both Abby and I.

1 in 91

2009-10-05T12:15:00.000-07:00

National Children's Health Survey Report Finds

Autism Prevalence Now 1 in 91
Monday, October 5, 2009
By: Carin Yavorcik

Autism Society Calls for Answers to Crisis Now

A national report released today in the journal Pediatrics reveals that 1 percent of U.S. children ages 3-17 have an autism spectrum disorder, an estimated prevalence of one in every 91 children. This is a dramatic increase from the one in 150 prevalence rates currently reported.

“This national study charts a dramatic rise in the prevalence of autism in the United States and we applaud this administration’s recognition that autism is an urgent public health priority,” said Autism Society President and CEO Lee Grossman. “But families today are asking: how high must these prevalence rates rise before the nation responds? Significant resources must be directed toward screening and diagnosis, affordable interventions that treat the whole person and comprehensive education plans to foster lifelong skill development so that people with autism will have the ability to work and live independently.”

The report, entitled “Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US,” published in today’s issue of Pediatrics, was conducted by the Department of Health and Human Services National Survey of Children’s Health, using data from the Centers for Disease Control and Prevention. The report was conducted via a telephone survey of over 78,000 parents, and determined a point prevalence of 110 per 10,000 respondents, roughly 1 percent of the population of children in the United States.

On a constituent call to discuss the report, the CDC reported that its initial analysis of the Autism and Developmental Delay Monitoring project data, due out later this fall, confirm the 1 percent figure. This report will also contain more data on age of diagnosis, groups affected, and access to interventions.

The increasing numbers have long-term economic costs to the country, as autism is a chronic medical condition affecting people across the lifespan. “Lifespan services, particularly for adults, are typically inadequate and inappropriate,” Grossman stated. “This new data should be a call to action to the government to improve and increase services and supports first.”

The Autism Society has been working with Congress on several key bills, which have stalled. “The information in this new report highlights the pressing need for additional services, support and treatments for families affected by autism spectrum disorders,” said Senator Dick Durbin (D-IL). “My bill, the Autism Treatment Acceleration Act, will help children and adults with autism gain better access to coordinated services, improve training for professionals treating these disorders, and will relieve the financial burden on the millions of families struggling with this disability.”

This bill, if funded, would provide funding for applied research into effective interventions, the first ever demonstration grants on adult services, create an adult prevalence study, and fund family support and information networks.

“Autism affects millions of American families, and the cost of diagnosis, early intervention, and treatment imposes a heavy burden on most of them,” said Congressman Mike Doyle (D-PA), co-chair of the Congressional Autism Caucus. “This legislation, the Autism Treatment Acceleration Act of 2009, would improve the dissemination of information between autism researchers and service providers, improve training for professionals treating autism spectrum disorders, and mandate that health insurers cover the diagnosis and treatment of autism spectrum disorders. Enactment of this legislation would do a lot to help millions of American families.”

“The increase in the reported prevalence of autism across the nation testifies to the urgency of executing a comprehensive strategy in response to this public health emergency,” said Congressman Chris Smith (R-NJ), co-chair of the Congressional Autism Caucus. “For its part, Congress must ensure robust funding to support aggressive programs of research, education, and services. Furthermore, Congress needs to enact additional legislation, such as the Autism Treatment Acceleration Act of 2009, that will establish the infrastructure and mechanisms for delivering appropriate services across the lifespan to individuals with autism and their families. We must look to maximize the reach and impact of our investments and activities by closely coordinating government efforts with those of national advocacy organizations, such as the Autism Society.”

(click the title to take you directly to the article)

The Symphony- Take One

2009-10-03T07:16:00.000-07:00

We are music fans in this house. All types of music.

From Tchaikovsky to Tori Amos.
From Miles Davis to Metallica.
From Bocelli to Radiohead and so on.

We love it all.

Abby goes to sleep each night listening to They Might Be Giants' Here Come the 1-2-3's. God forbid something ever happen to that cd. The earth might implode. But that obsession is for another blog posting.

Once while playing with Play-doh and listening to the Opera music station that is part of our cable package, Abby suddenly stopped during a particularly melancholy part of the song to listen. Her breath caught and her eyes welled up with tears as the music crescendoed (is that a word?). She was overcome with the emotion of the song. (Does she speak Italian?) She took a deep breath and then proceded with her Play-doh sculpture. When I remembered to tell her Dad about it a couple of days later, he said she'd done almost the exact thing one day while playing with blocks and listening to Classical music. This shouldn't surprise me. Classical music makes me cry, too. It's just sooo beautiful! It makes my heart feels like it's going to explode.

We were recently gifted (thank you, D & M) season tickets to our local symphony and when Ab's dad was going to be out of town for the first concert of the season, we thought we'd try to take Abby to see the show, Beethoven's Ninth. Now we knew this was a risky venture. I prepared myself to leave early and prepared Abby by telling her,

"The music is going to be loud, but we have your ear plugs and you can hold your hands over your ears if you want to."

"It's going to be dark, but it's just like the movies and you will have your blankie snuggle and Mama will be sitting right beside you. You can sit on my lap if you'd like."

We bought her a new dress and new tights, which she adorably calls "pants socks". We got all dressed up and loaded into the car. As we were walking toward the Frauenthal Theater, I pointed out the lights on the building and Abby put a little more spring into her step. As we got into line, all the old ladies "ooohed" and "awwwwed" at my cute little girl. Men gave us skeptical looks, but smiled anyway and Abby exclaimed, "This is so exciting!" My heart melted.

We made our way to our seats and sat down. I tried preparing her by whispering everything that was about to happen into her ear. The lights dimmed and the concert master, Jenny Walvoord, entered the stage. Abby sat up straight and clapped enthusiastically with the rest of the audience. "The conductor will come out next.", I whispered. And when Scott Speck made his entrance, she clapped again. She looked so grown up and excited!

The lights went dark. I felt Abby get nervous beside me. I gave her her blankie and a snack and kept my hand on her knee to let her know I was there. Then the music started. And Abby panicked. It was so loud and the sound resonated deep in our bodies. It was more than she could handle. She was in the early stage of a full-blown meltdown. We hurried quickly out of the theatre and into the hallway. I tried to convince her to listen to the music in the hallway and then try again at the intermission, but she was having none of it.

"The symphony is scary!" she told me.

Oh my. Well I hope she doesn't feel that way when we try again next year or the year after. I thought she'd make it through at least a few songs, but oh well. I'd prepared myself for it. On the way home she said, "Thank you for driving me in the car to the sympony, Mama." I think she just enjoyed getting all dressed up and going to the symphony, even if we didn't stay for the show. It was worth it for me. And apparently it was for her, too. And besides... she loves her new "pants socks".

School and Some Small Miracles

2009-09-27T06:53:00.000-07:00

Sorry it's been so long since my last post. I really need to just schedule time to do this. Abby started school a week and a half ago. She is going in the afternoons this year and that has been a bit of an adjustment for us. She gets antsy waiting for the bus and I feel like it's near impossible to make plans for the rest of our day, because smack dab in the middle of it all, I have to be home to get her on the bus and then 3 hours later, be home to meet her off of the bus. I've already had to make 2 emergency calls. One to my father-in-law, "Can you hurry to our house (20 min away) to get Ab off the bus?" and one to the bus depot, "Can you switch up your route today and drop Abby off ten minutes later?" I was stuck in road construction which is EVERYWHERE right now. Ugh! I'm sure they just LOVE me. The frazzled mom, still in her pjs at 1 pm, helping her kid onto the bus. Or I'm running behind (as usual) and making everyone else work around it. Will I ever get it together?! I keep trying.

Well enough about me. Abby is doing great in school. She comes home happy each day. I really like her teachers and thankfully, so does Abby. She talks about them at home quite often. She likes to say that she is going to go on a picnic with them and then list what foods she'll take. I mentioned in my last quick post that she's been ~~babbling~~ talking a lot lately. Most of the time it's AMAZING, but often it's the same story over and over and over again. Like the picnic. There are only so many times in a 2 hour span that I'd like to have that conversation, but if Ab's stuck in that storyline, we talk about it for two hours. At least.

We did have a communication exchange the other night that blew my mind! We were in their bedroom and I was about to change Bean's poopy diaper, when Abby said, "NO! It stinks! Better change it in the kitchen." Now for someone with typical kids, this isn't a big deal. It's a logical request (except that we don't change diapers in the kitchen normally). But for those of us who have been dying for some sort of communication from our children for a long time now, this is AMAZING!!!

She 1) expressed her opposition to the situation with words and without screaming, then she 2) expressed why she was opposed and then she 3) suggested a solution to the problem. I was thrilled! Now that is communication, Baby! And of course, Bean and I went into another room to change his diaper. YES! There appears to be a light at the end of this tunnel.

This last picture is of Abby's little brother, Bean, on Ab's first day of school. He was so upset. There was nothing I could do to make him happy that day. This photo was taken after I'd tried EVERYTHING and finally resorted to giving him his pacifier, blankie and put on a movie for him. He was so mad at me, I'm guessing he missed his sister, that he refused to come out of the doorway. He could see a sliver of the tv and this was as close as he would come to the living room... and me.

Very Quickly

2009-09-07T07:02:00.000-07:00

Super short post for the time being. I'm hoping to find time to sit down and tell you more this evening or tomorrow.

Abby is chattering NON-STOP today! NON-STOP! Is she even taking time to breathe? It's amazing and I'm so thankful for her words, but seriously... wow! Breathe, Abby, breathe!

A Little Light Reading

2009-08-26T08:02:00.000-07:00

Abby often checks the mail with me. Well one day last month sometime, she checked it on a day when I got my weekly TIME magazine. She promptly grabbed the mag, ran for a lawn chair in the back yard and "read" the entire magazine. She was so engrossed that I had to grab the camera and document the moment.

(reading about the mortgage crisis)

She often chooses to listen to the news over music on the radio. And if she is trying to butter me up, she'll ask, "Wanna watch the news, Mama?" She can identify & name Barack Obama and Hillary Clinton, whom she calls "Hillry Chicken." I wonder if our Secretary of State would find that as cute as I do. And for the record, I always correct her pronunciation.

Propping my Chin Up

2009-08-25T06:14:00.000-07:00

I'm feeling a little discouraged today, but I'm really trying to not let it get me down. Abby has made such progress in so many areas and yet I've noticed a little regression in others. I may have mentioned before that she is talking so much more this Summer. It's truly amazing. Just a few minutes ago, she suggested I turn off the lamp since the overhead light was on, because "it's too very shiny in Abby's eyes." And there are times that I can't keep up with her chattering. I really do love it!

I posted a while back about how Abby would let me do some pretty intricate hair styles. I also mentioned that maybe we would go get her hair cut for her 4th birthday. Well the best ideas often do not come to pass. Sometime this summer (I've blocked out the exact month and day) as I was getting Abby dressed and doing her hair, I discovered that she had gotten some tree sap in her hair the day before. It was a HUGE glob and there was just no getting it out. (Since this time, I've re-discovered the miracle of Goo-Gone) So I was forced to cut her hair. This freaked me out, which in turn freaked Abby out. Her hair cut turned out cute, which is nothing shy of a miracle, but now I can barely brush her hair without a scream fest and much anxiety on her part. Gone are the days of pretty braids and relaxing mother-daughter hair styling sessions. I have faith that they will return, but "when?" is the question.

We also made the mistake of introducing flash lights to bedtime. We thought it would be fun, but little did we know the chaos that would ensue. Abby has never been afraid of the dark. And yet with the introduction of flashlights to the routine, suddenly she wants two lamps, two nightlights, her flashlight, her GloWorm and her Moon Light. After all that, we may as well turn on the overhead light. We obliged some of this behavior for a while. Turning off each light one-by-one over the first 20 minutes of bed-time, eventually leaving only her nightlights and flash lights. But then she'd fall asleep with her flashlight on and if we forgot to sneak in and turn it off, it would run out of batteries. Then we'd wake up at 3-4:30 AM to Abby SCREAMING her head off, because her flashlight was out of batteries. And the screaming would only stop once the batteries were replaced. Well... I've had enough of that! All flashlights have been removed from the situation. No more flashlights at bedtime. Last night was the first night without them and it went well. Fingers crossed that the quiet nights continue.

The scream-fests that Abby is famous for had really subsided. It was so nice & encouraging. Now we've had to experience quite a few this last week or so. We had one first thing this morning actually, because I wasn't ready for bright over head lighting at 7:30 AM (it's too very shiny in Mama's eyes... haha!) and only had the lamp on in the family room. She FREAKED OUT because she wanted all of the lights on. I sent her back to bed and told her she could get up when she was ready to interact with the family without screaming. What a great way to start the day. Ugh!

So I am propping my chin up and carrying on. What else can I do?

Milestone

2009-08-17T06:32:00.001-07:00

We have reached 25 followers! Yay! A little Milestone for us at The Gentle Giant. Thank you and welcome to Gloria who rounds us out nicely. I'm so thankful to all of you who read about our adventures. This is so therapeutic for me.

Let's see... what can I share today. Abby has been reading an old book of mine from when I was a kid over and over and over again. It's a book about Donald Duck taking his nephews (Huey, Dewey & Louie) camping. So her dad mentioned that maybe we would go camping in our backyard this week. I am going camping in Washington State at the end of the month and we should probably get out our much neglected gear anyway to check things out. Well now Ab is obsessed. She can't stop talking about the "purple tent". It goes something like this...

"Abby, would you like a drink?"
"I want my Daddy... blah, blah, blah... purple tent."

The blah, blah, blah is the rambling parts that I still have a hard time deciphering. Abby's language skills have really blossomed this Summer. She is still using echolalia a lot, but more and more it is accompanied by her own original thoughts and words. If we can decipher what she is saying.

One of the great ironies in being Abby is that her volume levels are completely askew. When she is frustrated or angry, she can emit a scream that will make your blood curdle and your ear drums crawl farther into your head, begging for relief. And yet when she is blessing you with the oh-so-sweet-and-elusive conversation, she speaks so softly and quietly, that you often have to be right next to her to hear it. If only I could wiggle my nose ala Samantha on Bewitched and swap these two volume levels. While I'm sure I would eventually find myself annoyed by having to listen to her talk at blood curdling level, I would LOVE to have her screams of frustration and anger at a barely audible, newborn kitten level. If only for a week. It would be lovely.

Another topic she is talking about lately is school. She is soooo excited to go back. I'm excited for her, too. She absolutely thrived the last 6 months of the school year. I'm so excited to see the changes that will surely take place this next year.

Wearing her brother's sunglasses while taking a walk on the boardwalk. She is wearing a pair of "binoculars" around her neck that I made for her using empty toilet paper rolls, a couple of index cards, curling ribbon and tape. She uses them to go bird watching. LOL! The striped belt is one of hers that she carried around for a few days. She would twirl it and dance like a gymnast during a floor excercise with ribbons.

Geography

2009-08-11T09:59:00.000-07:00

Quick post today due to the fact that I have a long to-do list and while it does include,
*Lay on the couch and watch a movie,
it does not include, *Blog.
But I just had to share another of Abby's milestones that
blew my mind a little bit.

We went to the post office today and the clerk gave the kids a couple of stickers. One of them happened to be of a globe with the continent of Africa emphasized. I handed the sticker to Abby without an explanation or saying anything about it at all.

Later, as I was making lunch, Abby called my attention to the sticker. I asked her what it was and she said it was "the world" then added "It's Anafrica." When I corrected her by asking, "Is it Antarctica?", because that's what I thought she was trying to say, she answered,
"No, it's Africa."

Clear as a BELL!

Wow! She can identify the continent of Africa. Without even seeing it in context with the rest of the globe. She just knows its shape. Amazing! It is days like today that give me so much hope for the future.

Abby's Room

2009-08-02T22:19:00.001-07:00

Here is Abby's room in our new house.
She has requested purple walls, which she may get, but not for a while.
In the mean time, I think it turned out pretty cute.
The castle was a hand-me-down gift from her cousin.

She has a CASTLE in her room!

What a blessed little girl!
She does have to temporarily share her room with her brother, but I think the castle more than makes up for that.

Sometimes

2009-07-16T21:07:00.000-07:00

Sometimes I almost forget that my kid has Autism.

She rattles off a few clear-as-a-bell sentences.
She looks me straight in the eye and laughs.
I start to think... maybe she's just delayed socially.
Maybe we're all overreacting.

(July 2008- 3 years old)

But then I read a 4 year milestones list on some parenting website
or in a magazine.
I watch two young kids about her age have a real conversation with each other.
She has a screaming fit because we have to bring out the broom
to sweep the kitchen,
because apparently it's just as frightening as the vacuum these days.

And I am forced to remember.
Abby has Autism.
And that sucks.
I love her just as she is,
but it sucks.
This isn't the way I imagined my life as a parent.
Sometimes I cry about it. And he cries, too.
And after the pity party,
I remember.

(July 2009- 4 years old)

Abrielle is Abby J. and she is the coolest little girl I know.
And I am so blessed to be her mama.
We can do this.
We've only just begun.

It's the Perfect Color!

2009-07-14T21:19:00.000-07:00

When we moved into our new house (yay!!!) there were a few seagull yard ornaments in the front yard. I'm not big on yard ornaments (probably because I've never owned a yard) and most likely wouldn't choose seagulls to decorate it. (I think "Mine. Mine. Mine. Mine. Mine." from Finding Nemo) So I was just going to throw them out, but in the meantime I just moved them to the side yard.

Abby & Bean were spending all their time in the side yard and I could not for the life of me figure out why, when we finally have a big yard and a sand box, would they choose to spend all of their time in the rocks and sidewalk on the 5' x 6'-ish space on the side of the house. Then one day, I noticed that the seagull had a large rock between its wings. Then I heard Abby talking to the bird on another day. And it dawns on me. "Oh! She digs the seagull!" So the seagulls have been spared. But I had to put my own little spin on them if they were to live in our yard, so I spray painted them in high gloss paint. The two small ones are black & white. Abby chose the color for the large seagull.

Purple seems to be the color she favors most these days.
The birds live in the back yard near the play house.

Home Sweet Home

2009-07-12T07:10:00.000-07:00

I do believe that if I don't start literally scheduling time to write this blog, it might never get updated. It's a fine line between blogging about parenting and actually parenting. Ok... maybe the line isn't so fine. :) First I'd like to say THANK YOU! to Trojan and Sally, two of my favorite blogger friends for the awards they've bestowed The Gentle Giant. It is soooo appreciated and soon I will get them posted in the sidebar. And by soon, I mean sometime this year, I swear! Haha! Where does the time go?!

We've had a very busy Summer so far. I went on vacation at the end of June, taking Bean along since he still flies for free and leaving Abby at home with her Dad. True to form, she wouldn't talk to me even once on the phone, instead screaming "Nooooo!!!" at the top of her lungs each time her dad asked, "Abby, do you want to say hi to Mom?" This might hurt my feelings except that this is her response every time she asked, "Abby, do you want to say hi to (insert random family member's name here)?"

I was looking forward to our trip for a variety of reasons. I was heading to the State that my ancestors homesteaded in with my youngest child. It was great to introduce him to his "roots" even if he won't remember it. It was really more like I was introducing him to them, even if many of them have passed away. But I was mostly looking forward to only having to "deal" with one child. And the "normal" one at that. I know this is a terrible attitude to have, but it was what ran through my mind as I prepared for our vacation. Well I learned some very valuable lessons during that trip.

One. "Normal" is a relative term. Bean has officially entered the so-called "Terrible Two's" and he is a non-stop ball of energy. He kept me running constantly! There was no rest for me on this trip. It was a happy and much needed reminder that parenting is exhausting whether your child is "special needs" or not. Sure the circumstances are different. With Bean, I was physically exhausted more than anything. On the more challenging days with Abby, I am mentally and emotionally exhausted. But I am exhausted nontheless.

Two. I missed Abby fiercely. My heart ached for my little girl. When I told people about her, my heart was bursting with pride. I'm so proud to be her mama, I wouldn't change a thing about her. Sure, I hope for her sake that as we learn more about Autism, that her life will get easier and in turn my life as well. But she is exquisitely sensitive, beautiful and intelligent. And I love her just as she is. It feels good to say that. Each time I heard her screech, "Noooo!!!" when asked if she wanted to speak to me on the phone, I smiled. Because I knew that inside her big brain what she was really saying is, "Sure I want to say hi to my mom, but it sure as heck isn't going to be through that stupid telephone." And I can't blame her. I'm not one for phone conversations either. We have that in common.

It feels good to be home!

Directive?

2009-05-28T13:00:00.000-07:00

We were talking about the movie, Wal-E the other night and I just randomly asked, "Directive?" quoting a line from the movie and Abby responded "Classified!" without missing a beat. Here's a couple little videos of her. She loves watching these. I should take video of her watching her videos. Too cute!

The Gentle Giant: An Explanation.

2009-05-24T06:06:00.000-07:00

I have been soooo extremely busy this past week and I don't see it slowing down anytime soon. I'm in the final weeks of school, for both me and Abby, and we are in the process of moving into our new house(!!!). So the blog postings will most likely be a bit spaced out for a while.

I thought I'd take a quick moment today to tell you where I got the name, The Gentle Giant. Giraffes are known for being very quiet animals. They don't make much noise at all despite their large size and looming presence. (Not that I live next door to one or anything. This is what I've read on signs at the zoo and what not.) So their nickname is "Gentle Giant" or "Silent Giant". Either one fits Abby's personality.

One warm morning in July 2005, I woke up suddenly feeling as though I was wetting the bed. OMG! I run to bathroom. Notice that my husband is sleeping on the couch. Maybe it's because in my final month of pregnancy, I was big enough to take up 2/3 of the small, full-sized bed we shared. Though I would find out later, it was because in my big-as-a-house state, I had also started snoring so loudly the windows shook and threatened to shatter with each snore. Anyway, back to bed I went, happy to have the whole bed to myself. Only to wake up 20 minutes later with the same bed wetting sensation. What the heck is going on?! Suddenly I realized... my water was about to break! I was in the early stages of labor!

When we arrived at the hospital and got settled into our room, we switched on the television. It had previously been left on the cable channel, Animal Planet, and we were just in time to witness a mother giraffe give birth to a sweet, little, long-legged baby. I remember thinking, how odd that as I sit here about to give birth to my own sweet, long-legged baby, I turn on the tv only to witness another mammal giving birth. I know it sounds weird, but I felt a connection to that giraffe.

(In this photo, Abby is showing me both her giraffe shirt and her "shovel"

which never leaves her hands these days.
This makes for interesting dinners, let me tell you.)

An hour or so later, I was still in labor (12.5 hours total) and in walks my older brother with a gift for the baby. A stuffed GIRAFFE! He had no idea. It was a total coincidence. But it stuck with me. And it always has. Some cultures believe in a "power animal" and I guess I've always thought that Abby's "power animal" was a giraffe. It's only proven to fit her personality more and more over the years. With her lack of communication reminding me of the quiet giraffe and her loud screams and demanding presence reminiscent of the giraffe's 'giant' stature. It will be interesting to watch over the coming years.

And so... there you have it. Abby the Gentle Giant.

Like Mother Like Daughter

2009-05-14T09:20:00.000-07:00

I was asked last weekend by a blogger friend how my upbringing influences the way I parent my children. I thought it was a great question that would make for a great blog posting. Especially since it was so close to Mother's Day. I thought about it and thought about it, but everything that came to mind was sounding so cliche and very "Hallmark Card"-ish. I wanted my blog to be genuine and honest. As usual.

(wearing Grandma's rollers)

The last couple of days in our house have been a bit rough. My 18-month old son, Bean (his nickname) has had a pretty nasty cold. He's been waking up during the night with a hacking cough and just not feeling good in general. Since he shares a room with Abby, she hasn't been sleeping very soundly either and this has not made for a very happy camper in the waking hours. Really it's been an unhappy camping party as no one in the house has been sleeping very well.

Last night I reached a breaking point. I've been so busy with school and life in general that I've fallen behind in one of my classes. I'm a good student and this is just plain unacceptable for me. I was in the midst of trying to download software that was crucial to getting caught up in this class and that would allow me to spend more time at home. The kids were entertained and doing fine, but then I had to get into the closet where the dreaded vacuum cleaner is stored. Dun-dun-duuuunnnnn!!!

(Christmas at Grandma D's)

Abby hates the vacuum. I'll admit we put off using it because of this, but when we finally do break-down and vacuum the floors, Abby usually hides in her bedroom, in her bed with her Blankie-Snuggle and her music turned way up. Even with all of her comfort scenarios in place, she usually screams and cries (loudly) until the vacuum is put away. Not just turned off. "Put away!" The cord has to be tightly wound, the vacuum in it's place in the closet and the closet door tightly shut. Even after she has made sure this has all taken place, she still mutters softly to herself over and over again, "All done. All done. All done. All done. All done."

So back to my story. I had to get into the dreaded closet. (Dun-dun-duuuuunnnnn!) And despite my many assurances that I was not vacuuming, Abby was screaming and screaming and screaming! I should have just said some soothing words and let it go, but for whatever reason, I was so annoyed that she wasn't listening to me, that I let it get the best of me.

(cooking with Grandma)

I yelled. I swore. I slammed doors. I bawled my eyes out.
It was not one of my most proud parenting moments.

So what does this have to do with Mother's day and my dear Mother? Sometimes my mom lost it, too. Minus the swearing part, I reminded myself of my mom last night. She was a single mom. She worked 40+ hours per week and struggled to make ends meet. We were typical kids.

She'd get home from work around 4:30 and walk in to a messy house that had been clean when she left it.
We didn't have our homework done and we'd spent the afternoon filling up on cereal and cookies, instead of saving our appetites for the healthy meal she planned to prepare.
Then we'd complain about the dinner she did make and hound her at every turn,
"Mom... mom... mom!"
I remember standing in the doorway of the bathroom once as she yelled at me,
"Can't I even go to the BATHROOM without an audience?!!!"
And every couple of months, she'd reach her breaking point and we'd all have to endure a fun-filled evening of yelling and inevitably, crying.

I don't look back on these memories with anything other than understanding and compassion. My mom was a great mom! She worked hard and when we repaid her hard work with typical childish thoughtlessness, she let us know how ungrateful we were in the only way she knew how. I'm sure she would have judged herself harshly for letting those moments get the best of her, but I learned a very important lesson during those times.

(In case you've ever wondered what I'll look like when I'm 50)

I learned that my mom was human.
That she wasn't perfect.
That she had feelings.
That being a grown-up was hard and to be thankful that I was still a kid.
I learned that I needed to help my mom out around the house,
because she was doing the job of two parents.
But it would be years before I truly understood just how hard her life was during those years. And because I'm blessed to have an understanding and helpful husband, I don't think I'll ever truly grasp the challenges that she faced.

Usually at the end of one of "those" nights we'd all end up hugging and apologizing for our bad behavior. My mother included. She'd apologize for losing her cool. We'd apologize for being ungrateful kids. And we'd all end up loving each other just a little bit more.

(2 of 3 ungrateful-turned-grateful-children with their amazing mom)

This does not excuse my bad behavior last night. Abby is not an ungrateful child. She is an Autistic kid who is terribly frightened of the vacuum cleaner. I should have been understanding and patient, but I wasn't. So I took a cue from my mom. I apologized to Abby for yelling at her. I hugged her. I kissed her. I vowed to try better next time. My loving and patient husband also had a talk with her and Abby came to me with hugs and kisses and apologized for not listening and screaming when I was trying to reassure her.

I hope that someday when Abby is an adult, that she'll look back on times like last night and recognize that I was human. That I made mistakes, but that I loved her the best way I knew how. And when I didn't do my best, that I turned around and tried to do better. I hope she loves and respects me as much as I love and respect my mom. She wasn't perfect, but she always tried to improve herself and in the long run I think she did a pretty darn good job.

(Doing Grandma's dishes. Something I was never very good at doing.)

Every Now and Again...

2009-05-07T08:29:00.000-07:00

Abby needed a bath last night and I was not in the mood to do bath time. So I thought she could just jump in the shower, play for a few minutes, I'd wash her hair and she'd jump out. She has done this many, many times over the course of her life.

So last night, I told Abby that I was going to go run a shower for her.
"No!" she yelled.
"Yeah." I said, "It will be fun. You haven't had a shower for while. It will be quick."
"No!" she yelled, a bit more emphatically this time.

Me being just as persistent as she is, went ahead and ran a shower anyway. There was a time when she preferred the shower over the bath and I assumed that once she was in there, she'd get over it and take her shower.

I was wrong.

She screamed all the way to the bathroom and once I put her in the shower, she screamed some more. Screamed and screamed and screamed as she clawed at the shower curtain trying to find a way out, screamed as she jumped out and ran screaming naked and dripping wet through the house. Screaming long after I said, "Ok, ok! You don't have to take a shower! It's ok, Abby! ABBY! IT'S OK! YOU DON'T HAVE TO TAKE A SHOWER! ABBBYYYYY! IT'S OK!"

Jeeze, Louise.

Screaming, screaming, screaming. It had been a while since she'd had a scream-fest like that. Let's hope it's a long while before we see another.

After a nice relaxing BATH, dried off and dressed in clean pj's, Abby sat quietly watching the latest DVR'd "Super Why" while I did her hair. She let me put it in 5 tight little buns to sleep in overnight, so she could have curly hair the next day. I'm always surprised by the intricate hair styles she lets me do. There are many quote/unquote "normal" kids her age who would NEVER let their parents do the buns, braids and ponytail styles that Abby lets me do. As I sat parting, combing and twisting her soft hair, I was reminded of another scream-fest we'd had when she was two.

Abby's hair was getting long and was constantly in her eyes. I thought of cutting it into a cute little pixie cut, but couldn't imagine the wrath she would bring on anyone coming near her head with scissors. I didn't figure that would be safe for her or for the stylist wielding those scissors. So I opted to go with barrettes and pony holders. But even those simple devices were regarded with extreme contempt. Whenever I tried to snap a simple butterfly shaped barrette into her hair, she reacted as if I was shoving thumb tacks into her skull. She would scream and rip it out taking a clump of hair with it.

(Notice the "Quiet" face posted in the middle of the mirror as a constant reminder)

Ok, so why force the issue, right? Right. I'm with you. Except that the only thing that would make her more crazy than her mother trying to put barrettes in her hair, was hair in her mouth. This would make her gag and scream and throw herself on the floor and scream some more. (Have I mentioned screaming in this post?) So after months of wrestling with this issue, I decide after one particularly "fun" screaming/gagging/hair-in-the-mouth session, that she was going to wear barrettes. Period.

I took 20 deep breaths, muttered some prayers for patience and persistence on my part, and gently (or not so gently) told Abby that she was going to wear barrettes that day, and if she took them out, I would put them back in, and if she took them out again, I would put them back in, and if she took them out... well you get the idea.

And I did. She screamed, I put the barrettes in, she ripped them out, screaming all the while, and I would put them back. This went on for about 15 minutes until she was sweaty and exhausted (so was I). I finally put her barrettes back in, pulled her up onto my lap with her blankie-snuggle and pacifier, and whispered softly in her ear,

"It's ok, see. Feel the barrettes in your hair. They don't hurt, do they? They will keep your hair out of your mouth. Mamma wouldn't do anything to hurt you, Abby. We're going to put barrettes in every day, so the hair stays out of your eyes and your mouth."

She settled down and literally to this day, has let me do her hair ever since, and rarely complains. I felt sooo bad that day, but I know Abby's temperament. Sometimes she needs to be forced to try new things. I try to let her make her own choices, but every now and again, she needs a little push.

Now let me say again that I felt terrible. I hate forcing her to do things. I question myself at every turn. Was that the right thing to do or the right way to do it?! Well this is one example of not liking the process, but appreciating the outcome.

After watching me get my last hair cut, Abby announced, "Abby's turn!" She wants a hair cut, so I think she's ready for her first trim. Maybe we'll make a day of it for her 4th birthday.

It's a Privilege!

2009-05-05T05:57:00.001-07:00

Since starting school in January, Abby's behavior and general happiness levels have improved so much. Not that she was a miserable kid before, she just had so many more behavior outbursts, so one could assume that she wasn't as happy. School has been a Godsend! She attends Early Childhood Special Education (ECSE) and LOVES it. The bus drivers comment often on what a pleasure it is to pick her up in the morning, because she always has a smile on her face and a happy squeal to greet them.

Well this morning was unlike any morning we've had since she's started school. She fought me at every turn this morning. I always try to give her 10- and 5-minute warnings as we go along. I've found that if she knows what to expect, she is more cooperative when the time comes to perform a task.

"Abby, it's almost time to get dressed. Just a few more minutes." I said.
"NO! I want to sit on the couch and watch tv!" she screamed.

What? Where did this come from?!

"Abby, it's time to get dressed." I said.
"NOOOOO!!!" she screamed, throwing her toy across the room and herself on the floor.
"It's time to get dressed. 1..... 2..... 3." I said, taking a deep breath.

The 1-2-3 count works like a charm in our house. It's as if it has some magnetic pull and resistance is futile. Back when the 1-2-3 method was first introduced in our house, if Abby didn't come at the count of "3" I went and got her. There was no "3.5" or "4". For instance, if I say "3" and she isn't standing in front of me, that means that I am going over immediately, picking her up and dressing her. End of story. With proper execution, the 1-2-3 count can be brilliant!

So back to this morning. She screamed "NOOOO!!!" at every menial task that must be done in the morning. You can imagine that how much fun I was having. (Perhaps now would be a good time to let you know that I am fluent in sarcasm.)

Now I'm used to Abby not wanting to do what she is told, but usually she can be talked into it knowing that school is the reward. But today, and it broke my heart, as I was putting on her jacket, she looked up at me with tear filled eyes and without screaming (for the first time this morning) said, "Wanna stay home." Ugh! I wanted to keep her home with me and snuggle on the couch watching cartoons all day! But instead I said, "Honey, you GET to go to school! School is a privilege. It will be so much fun. All of your friends are there."

This is my new thing. School is a privilege. It's not something we have to do. It's something we GET to do. How fortunate are we in this country?!! Sure, I can gripe about the quality of our schools (cough-Idaho-cough) but we get to go to school. And it's even more spectacular that Abby gets to go to school. There are plenty of countries where girls aren't allowed to go to school, let alone a little girl with special needs. We are really and truly blessed.

I'm so thankful for Abby's teachers and her school. I'm confident that Abby will have a bright future, with teachers and teacher's assistants along the way who care for her and care about her education. And I will be there every step of the way, reminding her of the privilege she is blessed with, and reminding them of the importance of their job and how much they are appreciated.

Now let me remind you that I am not a perfect parent. I lost my cool once this morning and told her to "shut up" rather than "be quiet" during a particularly aggravating scream.
Most of the morning, what I was really tempted to ~~say~~ yell was,
"Shut up and quit yer screamin'!
Get your butt dressed and get on that bus!
Mommies' got a nap to take and a blog to write!"
But I tried really, really hard to use encouraging words.
And this morning, I did a pretty good job.

In the end, so did Abby. She whined a little bit when she saw the bus, but she sucked it up and had a smile for the bus driver.

I hope she has a good day at school.

Communication Breakdown

2009-05-03T09:14:00.000-07:00

"The most important thing in communication is to hear what isn't being said."
~Peter Drucker (1909 - 2005)

One of the many roadblocks we faced when trying to
"diagnose" Abby's autism, was that she talked.
Kind of.
And the two main symptoms of Autism that people/pediatricians focus on is eye contact and speech. Abby participated in both of these things, so people were quick to dismiss our fears.

Abby actually has a pretty large vocabulary. The problem lies not in her inability to talk. The problem lies in her difficulty to communicate using those words. Until starting school this past January, she mostly engaged in what is known as Echolalia. As defined by Wikipedia,

"Echolalia is the repetition of vocalizations made by another person. Echolalia can be present in autism ... Asperger syndrome, Alzheimer's Disease and, occasionally, other forms of psychopathology. It is also frequently found in blind or visually impaired children, although most will outgrow this behavior. When done involuntarily, echolalia may be considered a tic."

It was very frustrating to know that your child CAN speak, but not to understand why she "chooses" to scream rather than use the words you know she has in her vocabulary. I remember many a time losing my patience and sometimes my temper over what seemed like her refusal to use the words she knew. Instead of asking for her drink or for the crayon she just dropped, she would scream and throw a fit. Then when I would ask, "Do you want your crayon?" She would repeat, "Want your crayon?"

Because I didn't know about Echolalia, I viewed this as Abby's refusal to use words. I would insist as she was throwing tantrums that she "use her words" before I would "give in" to her tantrum. Well this helped nothing. It only made the tantrum worse. Because what I didn't understand was that she might know how to say the words, but she didn't understand how to communicate her wants and needs using those words.

I look back on those times that I lost my patience with her, wishing I could go back knowing what I know now. I wish I could go back and be the patient and loving mother that I always wanted to be. Not the mom who had been screamed at ALL.DAY.LONG. by the little girl with the giant scream and the mom whose patience had worn very thin. I feel badly for the sweet little girl trying to communicate to a mother who had not yet learned to "hear what wasn't being said." I still fail miserably at this some days. But thankfully, those days are few and farther apart now. I can only move forward and do better tomorrow than I did today.

This morning I was treated to a rare gift. My husband let me sleep in until 10 am!!! It was wonderful. When I finally did wake up, Abby was seated at the table, coloring in a notebook with colored pencils. She said to me, "Hi, Mom! Want to color? Come sit down in the seat." as she pointed to the dining chair next to her. She didn't scream at me once. When I complimented her on her excellent choice of words, she smiled and said, "Come on, Mom! Let's color!"

I cannot express to you how proud and thankful I am to have heard those sentences from her today. I'm crying now as I type these last words. The relief I feel at knowing that it's possible! By being patient and looking to understand what it is that Abby is trying to communicate when she doesn't use words, she is finding her voice and finally, finally learning to communicate. This makes each scream a little more tolerable and thankfully, like my least proud parenting moments, those screams are becoming fewer and farther apart.

There is hope. Always hope.

Abby-bird gets the Worm

2009-05-01T06:12:00.000-07:00

We all woke up late this morning and sure enough, here we are running late and Abby climbs into bed with me for a snuggle. I learned a long time ago that when Abby decides she wants to snuggle, you had better take her up on the offer, because it could be a while before you get the opportunity again. She was so sweet pushing her nose against mine and looking into my eyes for a few moments, before she'd look away and giggle. From what I understand about Autism, this is a rare occurrence and yet I am fortunate that Abby seems to regard it as a sort of game she plays with me. These are some of my favorite moments.

It was actually a miraculous morning. Generally when we are in a hurry, Abby fights me at every turn. She is a creature of habit and she does not like to be rushed. Who does? But this morning she cooperated in every way and not only did we get outside to meet the bus on-time, but we were early enough that I was able to snap a few photos while we waited.

I often take my camera outside to wait for the bus. You never know what will present itself for a photo. I was focusing in on the new green growth that the previously naked tree was displaying, not paying much attention as Abby searched the ground beside me for new dead leaves to smuggle into the house.

I heard her talking away about something and when I finally looked, she held her hand up to me and said, "The worm is wiggling! It's so cute!"

This is my little girl who FREAKS out when anything sticky, slimy or dirty is on her hands. They've been gardening at school and her teachers have said that she likes the lessons, but does not like getting her hands dirty. And here she is holding a WORM up to me telling me how "cute" it is. She surprises me daily. In this case, I think it's the cutest bird who gets the worm.

What if she is Autistic?

2009-04-30T06:12:00.001-07:00

Wow! I can't believe how many views I've had on this blog in such a short time. Clearly people are interested in what life is like parenting an Autistic child and I have to say, I'm thrilled to tell you about it! Autism has reached epidemic proportions and yet the research to find a cause and a cure is the most underfunded of the most common childhood diseases. Awareness needs to be raised and I'm happy to do my part, even if it just writing a little ol' blog about my sweet girl.

I wrote a paper earlier this year titled, "The Autism Controversy: Genetics, Vaccinations, or the Environment?" You could read it in my Facebook notes if you'd like. I discovered that Leukemia, which affects 1 in 25,000 children was the most funded of all the childhood diseases with $310 million dollars invested privately for its research, while Autism research received a mere $15 million, despite the fact that it affects 1 in 150 children. 1 in 150! Now please understand that I by no means feel that other childhood diseases like Leukemia are less important or don't deserve every dollar that goes into research for a cure. On the contrary. I hope the funding remains... or grows and a cure is found. I only hope to raise awareness about how underfunded Autism research is, despite its high rate of occurrence.

Quite a few people, all of whom are young mothers, have asked me in the last couple of days how I "knew" or "suspected" that Abby was Autistic. For sake of not rambling on and on today, I'll start with the beginning and save the rest of the story for future posts.

Like all new parents, I'm assuming, I hoped and prayed that my child would be healthy and "normal". I did let myself think, in an attempt to prepare for the worst, "What if she's not? What if something is wrong? What if she is Autistic?" That last question resonated in me and it didn't go away. I asked it of myself often, despite the fact that I didn't say it out loud to anyone else and had very little reason to think it. I asked myself this question throughout the first months of Abby's life, but I was afraid of "speaking it into existence", so I remained quiet.

Abby was a colicky baby. She never took to breast feeding very well. We struggled for the entire 3 months that we breastfed. Eventually, we started to supplement with formula, because with all of the crying she did, I thought, maybe I'm eating something that is upsetting her, despite my efforts to swear off of dairy and broccoli and anything else I could think of that might be giving her gas or upsetting her digestive system. But nothing seemed to help. After a bit over 3 months of breastfeeding we switched entirely to formula. It broke my heart to do this. I had always pictured myself as the breastfeeding super mama, but something had to give, for both of us.

Well once we switched to formula it was like we traded in our baby for a new model. She was soooo mellow. No more nonstop screaming sessions. She was such an easy baby. But there was always that nagging question in the back of my mind. "What if she's Autistic?" She never was a very snuggly baby. I believe it was when she was about 5 months old that she developed the muscle control to convey through body language that she wanted to be put down. I had always rocked her to sleep, but one night in particular, she was very fussy and wiggly. Feeling frustrated, I said, "Fine! I'll just put you to bed then!" And when I put her in her crib, she relaxed immediately, turned her head away from me and went to sleep. After that day, I paid attention to what she was telling me with her body language and 9 out of 10 times, she wanted to be put down and left alone.

Abby was always content to play alone, from pretty early on. By 6 months old, she could occupy herself for hours on the floor with toys and books. She was more receptive to her dad's company, but often if I tried to join her on the floor she would get frustrated and fuss until I left her alone. It was hard for me. I wanted to be this great, fun and engaging mom, but unless I was feeding her, changing her or bathing her, she didn't want much to do with me.

She was about 9 months old, when the nagging question, "What if she's Autistic?" got louder and louder. I was sitting at the computer one day and Abby was playing in the same room on the floor. I asked her a question and she didn't seem to hear me at all. "What if she's Autistic?" the question asked.

I called her name. No response.
I called her name again. Nothing.
"Abby?" Nothing.
"Abby?" She didn't flinch.
"Abby?" Still no response.

"What if she's Autistic?" the question seemed to be screaming in my head now. I thought, "I'm going to say her name until she looks at me."

"Abby?" Nothing.
I must have said her name 50 times that day.
She didn't look at me once.

Not until I got down on the floor with her did she look at me briefly as if to say, "What?!" before she crawled away to be alone. I went back to the computer and logged on to www.autismspeaks.org with eyes full of tears and trembling hands.

"What if she is Autistic?!"

All the World's a Stage

2009-04-28T18:30:00.000-07:00

I had some shopping to do today, so Bean (my 18 month old son) and I were already in the car listening to Fresh Air on NPR when Abby arrived off of the bus from school. She is always excited when she gets off of the bus and hears "the news" (NPR) coming from the car, because it means we are off for a drive.

Abby loaded up into the car, happy to sift through the various books, toys, papers and dead leaves that she keeps in the backseat between her booster seat and Bean's car seat. She loves leaves. Probably more than I'd like her to. Don't get me wrong. I love leaves too. But I prefer them to be green and still attached to trees. Abby prefers dead, crispy leaves with stems attached so she can twirl them in her fingers. If we let her, she would collect every leaf from outside and bring it inside with her. We indulged her for a while, letting her bring in one or two at a time, but soon we were finding them everywhere. In her bed. In the bathrooms. In the toy boxes. Under the dining table. On the couch. And all it takes is one tantrum with a leaf in hand and she will shred that leaf much faster than any of us can clean up.

So, back to shopping. We went to Target and I let her choose a cheap item from the dollar toy bins. She chose a plastic microphone that makes an echo effect that does seem amplified just enough to be cool, but not enough to drive the parents crazy.

She was so cute with that microphone. Singing all over the store! Every song she knows. Needless to say people on every aisle were remarking on how cute she was. Stopping to listen. From little old ladies to teenagers. I have to admit. My heart was a gooey pile of mush as well.

I've mentioned that Abby is high functioning Autistic. She talks. She sings. She smiles. She makes eye contact. She hugs. We are very, very, very fortunate. So many Autistic kids might never do this. I count my blessings for this every day and try to remember it when I am in my darkest times trying my best to parent her through the outbursts and tantrums.

Abby loves music. She has quite a repertoire of music in her head already. I'll write more about that later. But for now, here is a video of her singing Sunday-Monday into her microphone. I heard her talk more today than I have in a while. Who knew all it would take was a plastic microphone that cost $1.99.

The Gentle Giant

2009-04-28T12:57:00.000-07:00

I'd like to introduce you to my little Gentle Giant. Her name is Abrielle, but she prefers to be called Abby.

Abby will be 4 this summer, but this photo was taken when she was 9 months old. It was about that time that I first logged on to www.autismspeaks.org suspecting that something was different about my first child. I think I'd suspected it since the day she was born. But it would be months before I let myself act on what I recognize now as my first example of what is known as a "mother's intuition."

(I had to take a moment to cry a little as I typed that last sentence.)

I've decided to start this blog as a way of telling our story. Mostly as a therapeutic act for myself, but also, hopefully as a means of possibly helping someone else who might find themselves in a similar space in their own life.

Photography is my latest and my most favorite hobby on a long, long list of hobbies. This blog will showcase some of my favorite photos of Abby and anything else that floats her boat or mine.

Please leave me comments. I'd love to hear what you might have to share. Many blessings and Happy Spring!