The bottom line is babies

"So you don't want any more babies?" he looked up at me from his swivel chair.

For some reason the tone made his question sound more like,

"Are you sure you will be able to fit in your swim suit next week after all the ice cream you have been eating lately?"

Sitting up, trying to gain some sort of composure in my couture paper napkin top,

"I'm thirty-five," I say with conviction.
He says nothing.
"My son also has Autism," I state.
He still is looking at me saying nothing.
"My two beautiful children are all I ever wanted."
There. That must be the right answer. It felt right.
He clears his throat, shifts in his chair and begins...
"You haven't answered my question."
"I didn't?" Didn't I?
Silence. The large poster showing a fetus growing arms and chubby legs looks like it is snoozing on the opposite wall.
I swallow. Hard. It kinda hurt. Is it hot in here or is it me?
"No. No, I do not want any more children."

I really am ready for this. It's just everyone else is making such a big deal about it. Sometimes trusted people can sway my thinking pretty easily. Until, I snapped out of it and thought Doctor H won't be there for the late night feedings, take on the discomfort of having huge boobs and I know he would not be throwing some of his salary as a doctor our way.

"Yes. I would like the surgery done."


OK then, he begins, "A Tubal Ligation Procedure..."

So, I had it done. And OUCH! my belly button hurts! Yeah, that's what I said, my belly button! They untied it and went right in. Vicodin was a good friend of mine for a few days. SD was home and I napped and finished the latest Harry Potter book.

On the other hand, I am finally on the step of an external review at the state level for our appeal for ABA services for Gabe with our insurance company (It has been an entire year since I started appealing). "The book" as I call it is 600+ pages long and is due to be sent to the States Appeal Review in a week or so. Our appeal is worth $8,000. SD and I look at each other often and say "No pressure." Wish us luck. I'll give more details later.

So, I have spent my time reading your blogs, but am just too tired to write in my own. I know, come fall, that my blog will be full of it's ups and downs again. My summer has really been amazing this year. Less than a month and we'll be off and running again!

Boo and Gabe, my beautiful babies.

A Little Perspective

Sometimes it takes a few old videos to put the past and present into perspective....
(Sometimes they take a few minutes to load on Blogger....)




Gabe then....
* Gabe at 13 months old
* He did not have any words yet, just sounds (very cute sounds)
*1 month later he walked
* It was only two months later that he started not responding to his name
* Soon after this he stopped playing
* He was diagnosed with Autism 5 months later
* We had no idea at the time that most of what we fed him he was allergic to








Gabe now.....
*He is on a diet free of allergens
*His asthma is coming under control the more we learn about it
* Gabe is full of expressive language and sentences!
*He has been diagnosed with Autism for 2 1/2 years now

Isn't it amazing how fast they grow?
And how quickly you learn...

Life Is A Highway...Gabe's Gonna Ride It all Night Long

video Here's the video of Gabe burning some Big Wheel rubber. I am beaming with pride.

Last summer, I put him on his bike and pushed him around the court, while he honked his horn. It was a start. I just wondered if Gabe would ever want to learn to ride a bike or anything with wheels, he is a real indoors type of person. Until this year! This year I was bound and determined to expose Gabe to all the beauty that awaits him beyond the magnificant marble run, Geo Trax Trains and comfy sleeping bag he lounges on in the playroom. This year is the year of the larger blow up pool on our deck sprinkled with floaties. There are sprinklers that hit you from all directions in our front yard (who needs a spray park?) And a slip and slide that beckons umbrellas to get wet in, but for some reason has yet to be slid on. But, the most wonderful part of it all....there are friends to play with while doing all these awesome things outside. Yes, this year I invested a lot. In return, though, I have a son that looks out the window and calls for his friends to come play.

He was pedaling pretty fast once I got the seat adjusted where it fit him just right.

This could have not gone so well, but there was a safe clearance....whew...

Another Big Wheel Buddy

















Get your motors running !

Lately

Did I tell you that Gabe is now 4 years old? I kept saying in my head a few days after his birthday, "Four? Really?" I am 35 years old and have a 5 1/2 year old and a four year old. I never imagined being here, in this spot, in this moment. I can truly say, that I understand what it feels like to be older with a lot of responsibility, but I still feel the passion of my untamed youth.





















Gabe and some of his friends at his birthday party:o)



In California! We stayed in Palo Alto and took day trips to San Francisco. One day we took this train. Gabe was over the moon! After that, Gabe wanted to ride the train everyday and resented our car. (I thought of you Annette when we were in California. Even though I was in the same state, you were still far away!)




At the San Francisco Zoo riding........a train. (lol)





The zoo reminded me of Detroit's zoo, making gains in better habitats for some of the animals, but still some were living in pretty deplorable conditions. The foliage and plant life was amazing.










Boo is now an official first grader.(I am a mom to a first grader!)


Who likes to give SD (Super Daddy) a heart attack with her dollar store press on nails. (They fell of two minutes after this picture was taken)
Gabe finished his speech based preschool. He made his way to the top of his class. He was becoming a model for the other children. Amazing. He's worked so hard. I couldn't be prouder.
This fall is "Big Boy Preschool". Gabe being mainstreamed completely in our public school preschool. All our support, professional and otherwise agree. He's on his way.





Sorry about the mess, words scattered every where. I should not have messed with the HTML Gods.

The Other Group of Moms

Off I went, landing into yet another social gathering with other moms. I picked out an outfit, more trendy than dressy, wearing a smile that says "My hair looks fabulous today!" I just can't seem to get away from this insanity. This mom group, however, is from Boo's school. Most of these moms I have yet to meet and have an actual conversation with. There are only two that I have spoken to more than once and in complete sentences. Today, I knew would not be one of those days, because Gabe would be with me.

The moms seem harmless, especially since they too have sent their children to a private religious school. So the caddy, tartness and overt attempts at making you feel less than are frowned upon at our church, I felt safe. And in the end, I was. Boo was so beautiful, talented and amazing as she read her reading for mass. She also did some wonderful hand gestures to 3 of the songs sang in church. She did them front and center, facing the entire school. Wow! I thought. She is so brave. I was so proud. I wanted to give a standing ovation after each song, but as is typical in our church, the room went silent and everyone bowed their head in prayer at the completion of each song.

The diamonds and expensive purses are still there, but not flaunted as much. For, in my denomination, if you can flaunt it, you can donate it. The church says put your money where your soul is, not in your Coach purse. I like that philosophy. It keeps the wealthy masses humble. I looked and felt right at home here. Kind've. Mass is a good hour or so long. The pews are covered with non removable cushions, that I think Gabe maybe sensitive too (Dust Mites?) The eye rubbing started soon after we were seated. Now, here's the dilemma, do I go sit far away, where we sit in nonupholstered chairs, but can barely see Boo? Or, do I take intermittent breaks, where Gabe and I leave to go for walks between Boo's appearances to ease Gabe's reactions? I chose the latter. I chose to sit right up front where I could cheer Boo on. Where, for once, it was all about her. I gave a lot smiles and blew several kisses. I did offer Gabe eye drops and other medication, but he unfortunately turned them down. So, I reinforced his good behavior every 5 minutes at first, then ten later on during the entire mass. I made sure to bring my timer, and we set it together and waited until it beeped. If he was still in his seat, being quiet he could have a marshmallow or Swedish fish. This worked for most of the mass. I would like to say it was perfect and not a strand of my hair fell out of my head from stress, but in retrospect, Gabe did awesome all things considered.

As we were about to leave, I noticed all the moms hanging around chatting as if they were just about to go out and get coffee or perhaps delaying a little before spending the afternoon casually preparing for the busy weekend. I, on the other hand, gave Gabe a big kiss on the head, smiled and said "Ready to go?" We did it, not totally unscathed, but my hair still looked good, Gabe had a snack and Boo smiled knowing she too was important to me.

A Sobering Reality

I am not perfect. I don't even come close. I am so far flung from that reality, I don't think I can even see it from here. My world seems so separate from everyone else's that I feel as if I am the visitor here. An outsider than can barely speak the language. What's ironic about the whole situation is that it has nothing to do with Autism, this feeling of being alone. Because, for a brief moment in time I felt like my world could actually be the same world as other people I came in contact with when Autism was first introduced. Together, myself and these other mothers, could make a connection, that was real, had substance. Autism gave me that. It gave me an in with other mothers, who felt lost, saddened, stressed and still hopeful that amongst it all they could still be there for their child. But, the loneliness is still there for me, even after the curtains pulled to the side for the final act. Before the applause was to happen, the standing ovation for all the dedication, love, heart and soul that I have poured selfishly into my child, I stand alone. Maybe it was never Gabe, but really all me.

Somewhere along the way, his world separated like mine, drifting away from the one where every seemed to be headed. How am I to provide for my son what he needs if I can not even manage it for myself? I don't even speak the same language. It is all so foreign to me. The Kate Spade handbags, casual conversations about nothing, diamonds that sparkle as their heads turn. I am so far out from where everyone seems to be. Like I missed Adulthood 101 "This is how you act". I am having a really hard time.

I didn't know that you are to dress up when you go to McDonald's. Really? That heals are not meant only for anniversaries, the theatre, and Galas, but should be worn when picking Gabe up from school, grocery shopping and (how stupid of me) to greasy fastfood places where your kids socks turn a swamp black as they run through the germ infested play area. Who knew? That proper protocol was to only wear something that Ann Taylor, North Face, Ralph Lauren or anything else (Thank God no one was actually wearing BeBe) that could be purchased at The Somerset Collection. You don't just wear a shirt and pants, but an ensemble.

Gabe and I were invited to meet a friend and her kids at McDonald's this afternoon to play in the play place. (Can I just let out a big 'EEEEWWW!' about the condition that our play area is in). I go, because I really would like to spend some time chatting with this friend, I am trying to continue and hopefully maintain at least some friends from before Gabe's diagnosis. I live in a small town and all these moms know each other and they know me or at least "about" me. They know little about Gabe, most have no clue what our lives truly entailed the last two years.

Our worlds collided, these moms and I, it was awkward and the lack of interest was palpable. Did I tell you that the friend that I was meeting to spend time with also called most of the moms that I have, deliberately, chosen not to talk to to meet us there? Did she know? Probably not. I was just hoping that she was as interested in getting together to talk with me as I was her. I am so way off in most of my friendships, it blows my mind every time. I am constantly being slapped in the face with this reality. That perhaps the store clerk who rang my groceries may not want be my Maid of Honor at my wedding? Am I that far off? No, but it sure feels that way sometimes.

So, I would normally handle this 'rejection' by not talking to any of them again and starting over from scratch, in hopes to find more people like me. But, you can not run far enough away here. It is high school all over again. I liked that comparison. Funny enough, that was how my 'friend' described it too. I guess it will be a first in my life that I will have to stick it out. It's killing me. There is no bright light at the end, no rainbows after the storm, just me being an outsider, occasionally asked to join a few select functions. Mostly birthday parties and the rare play date. I hate saying this about myself. I know it can't all be me, but when you are the only one left waiting on the side lines and everyone else is out playing the game, scoring touchdowns for their kids, yeah, it's kind've a rude awakening, a painful one at that. Oh, and my neighbor of 5 years, that I just had over for a play date not but a week ago, leaned over and told me," Yeah, 'L' (my friend) called and invited me and "J' and 'K' too, I thought about calling you, but you know...." and her voice trailed off. Not because she was embarrassed or had an epiphany about her blatant disregard not to invite me, but because she knew, just as I did, that I don't belong. Not here, not in this group. I could feel the corners of my mouth drop as she was talking to me, by the end I pulled a smile and turned around, sinking quietly in my chair. "Why was there?" I thought.

Gabe had a really rough time at McDonald's. There was hitting, lots of sweat, pee in his pants and a lot of screams bellowing "No Thank You!". I had to carry him out to the car when we finally left. We sat there together, quietly. Gabe was protesting the car seat and I wanting to just drive away to anywhere that did not have golden arches.

I haven't felt so trapped in myself in a long time. I was trapped in a car, outside the McDonalds in sight of the play place. My 'friend' grabbed my bag for me and Gabe's coat when I said I had to go, because he was having a hard time. After unlocking the door, frantically watching as Gabe started walking away in the parking lot with just socks on, my 'friend' throws my stuff in the front seat, turns waves and says goodbye. If I didn't know better, I would think that I have just been voted off this world.

It's OK if you have that icky feeling after reading this. The sourness in your stomach that reminds you, Thank God you're not her. I have it too, but unfortunately I am her.

The Group, The Diagnosis, The Million Dollar Question

I made the long drive today to Gabe's doctor. What used to be a 10 minute drive, is now an hour from our house. It was so conveniently close to our former house, going to the doctors couldn't have been any easier. We have tried switching, but doctors are really funny about letting you join their "patient club". You are snubbed appointments, until you can prove yourself worthy. I just don't have time to play that game. Our doctor has never turned us away, we have never had to wait an obscene amount of time in a waiting room or examining room, and he always greats us with a smile. So, what's a little scenic drive now and then?

There have been times that our beloved doctor is not in and we have to reluctantly see one of the other doctors in the group. I will describe them as follows....

The Head of the Practice- Doctor "I know everything and you know nothing"
He was snubbed once by parents with a child who has Autism, because they wanted to try Chelation and he obviously thought they were wrong. He takes up all his issues about Autism with me, much to my chagrin. We see him only under the most extreme circumstances.

Doctor #1- She has a great accent ( I always envision a beautiful countryside in some far away place when she talks), but she is a terrible listener and can be a tad bit condescending. Boo was born Frank Breech. She was the only doctor to advise getting X-rays of her hips to make sure they were OK. I can't help but have a place in my heart for her.

Doctor #2- She loves to reference books, talks really fast, but still not a bad alternative. She was the first doctor to visit me in the hospital when Boo was born.


Doctor #3- First doctor we interviewed in the practice, but she never really takes a close enough look for me. Just didn't jive with her, so we switched to our current doctor in the group.

Doctor# 4- Doctor P., our doctor now. He's funny, the kids love him, not too shabby to look at and is smart in a non condescending way. I wish he knew more about the specifics about Autism.He told me once that," being a doctor feels wonderful when you can help someone, but there are times when you can't and that's hard to take." I felt like hugging him after that comment. We had just found out Gabe had Autism. He was the first (and only) doctor to admit that he didn't know everything.

Doctor #5- She has read all the research, keeps up on all the journals and could possibly cure a disease in her spare time. She is all business. No time for all the niceties.

The last doctor is who we saw today, Doctor #5 (Please do not attempt small talk). Doctor P. was not in today. I asked again about the rash on Gabe's face and, much to my surprise, received another possible diagnosis...Keratosis Pilaris. Huh.....not Contact Dermatitis, because it is persistent. Yet, still no affective treatment.

Our main reason for being there was due to the appearance of some bumps by Gabe's wrist and on his legs. We had spent the entire weekend outside and I had just thought it was bug bites. I saw him swatting in the air the other day as we played outside saying, "Go Away! Go away!" arms swinging wildly. Isn't it odd how the people that hate bugs the most get swarmed 9 out of 10 times? Gabe's itching lasted for days and a few more bumps joined the already present ones.

SD swells when he gets bitten by mosquito's. I thought maybe Gabe was also very sensitive to the bites. By the third day, SD told me it could be Poison Ivy. We both thought, where would he have come in contact with Poison Ivy? Our trees do not even have leaves yet. Maybe a dried up leaf from the fall? Come to find out, Gabe must have come in contact with something he was allergic to, tree pollen, maybe grass, and scratched himself, letting the allergen under his skin and "TaDa!" instant reaction. The bumps aren't infected, so no Staph infection. (Gabe is more prone to those kinds of infections due to his excema) Whew!

I kept asking him (as he was itching) "Do you want some itchy medicine?" (Hydrocortizone or chewable Benadryl-both not bad in his book)

Gabe kept saying, as he was itching wildly, "No, I'm OK."

"Doesn't it itch?" I say sympathetically.

"No." he responds.

"Gabe, then why are you itching? It must really itch. Are you sure? Let's get some medicine." Two seconds later, he is fully medicated and itch free.

How come he just can't tell me?
Where is the connection not being made?

This has become a huge mystery for me lately. So many things have clicked with him lately that I am completely blown away everyday. But, this, telling me he needs help when it comes to his body is just not coming together.
What is preventing him from making that connection?

He asks me all day to help him with his marbles, choosing a video to watch, what to eat, and so on...just not with his own body.

What am I missing?
Or better yet, what is Gabe missing?

My Third Start

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I have actually had a few things to talk about, but after I purged them out onto my cyber canvas, they didn't seem to be able to sustain the dimensions of the page. They just fell flat, sprawled out, taking up space. So, that left me here with these random thoughts that have been floating around in my mind lately...

#1
What classifies something as an epidemic? Dictionary.com defines it as something that is extremely prevalent and widespread. So, with that in mind, even with the argument that just more children are being labeled as "on the spectrum" due only to diagnosis criteria, isn't Autism still an epidemic? I read a parenting magazine yesterday, while waiting in an office, that was clearly trying to convince parents not to buy the hype. What is that magazine trying to sell? That Autism is just a figment of some people's imagination and it doesn't normally happen to good people that read their magazine?

#2

I still love to walk. I walk as much as I can, because it keeps me sane and a whole lot less anxious. One thing I have noticed is I have great toned legs that I can now flex and show an impressive muscle. However, that same muscle that helps also to tighten the rear is still resting under *ahem* a few extra pounds . These unwelcomed pounds are making my pants tighter and less forgiving. God has a sick sense of humor when it comes to my body.

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#3

Gabe is still doing great, in fact we have left the "ABA trial table". I work on his programs incidentally throughout the day through books, play and general conversation. His last day in his speech based preschool will be in June. In the fall he will attend a regular preschool. I have begun to create a flyer to give to the teachers about some Gabe-isms.

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Some Gabe-isms
1) Sometimes I repeat what people say when I don't know what to say. Just ask me another way. There are times I may need a little extra help.

2) When I am hurt, I may not tell you. Sometimes I say "No, I'm OK" even when I am not. If you ask me very specific questions like "Does your knee hurt? I will be able to tell you. I may even give a little hug.

3) I am allergic to many foods. I am also a pretty picky eater. I don't mind only eating what mom sends from home. She also packs special treats in my bag in case someone brings in a special treat I can not have.

4) There are times I get so excited about something that I may ask for it over and over. Mom reminds me what she said and then lets me know if I ask again I may not get what I am asking for. I have to admit, this technique works well with me.

Those are a few that I have thought of. I don't want to mention that he is Autistic, although they already know, for the simple fact that I believe people see the word Autism and think of its stereotype before seeing Gabe.

Here are some more thoughts....

#4
With Melissa's great advice, I am going to call and make an appointment for my thyroid this week. Thanks Melissa!

#5
We have had quite a few schools on lockdown since Virgina Tech's shootings, because of similar threats. The school locks all the doors, outside and in, the teachers remain with the students in the classroom, while police officers search the school. It can be very scary, real or not. SD is a school teacher. Everyday now I wonder if he will be coming home. What has happened to our world?














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So, there you have it, my current state of mind.

Change

Did I mention that change is difficult for me sometimes? Even though, I know it is inevitable? That it is happening even when I swear it isn't? That I am so hell bent to keep this fast pace of therapy for Gabe that I missed the flags declaring the last lap of the race?

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-Gabe is age appropriate for his ABLLS -R (Assessment for Basic Language and learning Skills- Revised).


He is age appropriate!

He walks, talks and acts like a soon to be 4 year old.

He is picking up things at lightning speed. Gabe is filling in a lot of the gaps all on his own-no program, no fruit snack reinforcers....just Gabe putting all the pieces together. He has not completed the ABLLS, but he is on his way!

*LOUD APPLAUSE*
*Bring in the band! *
*Swedish Fish for everyone!*

I wonder, silently (selfishly?), where does that leave me? What I mean is, what role will I play now? I obviously will still be Gabe's mom, but his needs are different. It feels like a shift, movement of the earth's plates, similar to your child entering the years of being a teenager. The years where what you thought was right, could be so very wrong. How do you navigate that world?

I left the NT world 2 years ago. I left the phony friendships that were based on where you live, what kind of house you have and the image of being the "perfect" mom. I was scared, but somewhat relieved. I was losing that race quickly, I was more interested on where I was going with my kids then who was running next to me and if they were wearing the "right outfit".

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In return, after venturing forward in a completely different direction, I was then unconditionally embraced by this Autism Ring and other parents with children on the spectrum. I found a world that revolved around what it truly meant to be a parent, especially a mother. I have felt more of a connection to the amazing women and men through our Autismring, than neighbors I have lived next to for the past five years. I have cheered, cried and sent good vibes to many who have posted ideas and thoughts about their children that have enabled me to push through another day. I will forever be grateful.

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When I am asked about what I think are the first things a parent with a child newly diagnosed ASD, I always say, get the best evaluation you can afford, write everything down (everything) and read blogs or journals by other parents with children who have ASD. You can begin to feel very alone and just reading other parents thoughts can be very comforting. The world of ASD doesn't have to always have horrible connotations. I have found that doorways exist here that would've never been opened anywhere else. I have had many doors closed with the mere mention of ASD, painfully, right in front of me. There were also many more opened for me by another caring parent who just knew what it was I was going through with Gabe, because ASD had touched their lives too.

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My son is ready to move on. He is ready to explore beyond the world that I have created. He is dipping his sweet, little toes in the crisp, cool, spring puddles. He is dancing around the edges, laughing at his reflection, admiring the ripples created by the gentle tap of his foot. I, however, can't help but hover, anxiously, arms poised to catch each and every possible fall. I am on the sides, trying to cover the puddles with my coat, hand within reaching distance, hoping to guide him safely around them. I am still the mother that worried about her son night and day, spent late evenings reading anything and everything about Autism, called doctors and pursed answers. I can't just flip the switch to off and leave that person behind. I can't seem to even dim the light.

Am I out of my mind?

This is the path Gabe has created. This is where he needs to go. All his therapy has lead him here. Isn't this the road I created? Shouldn't I be skipping, running towards the end?

I am.
I am overjoyed.
I am estactic.

With it comes anxiety (Can it be true?) Hope that seems so fragile (How long will it last?) Self doubt (Will I recognize when he is having trouble again?)

I know that we are heading in the right direction. The world just looks different. Sunnier perhaps? More flowers? More smiles?

Change is hard for me, but it seems to really work for Gabe.

My thoughts on the book Strange Son by Portia Iverson

It has been two years and a half years since I first heard the word Autism float through the air and into my thoughts. It has been an incredible journey. I know that sounds cliche, but I do not think, personally, that there are many journeys in life like this one. Maybe that is my own ego erupting with, "Autism is something that only those close to it can understand." But, it changes you, your family, how you see the world, whether you like it or not. I have found that some changes were very painful for Gabe and I. Such changes forced us to stretch our thinking and ourselves in understanding how to continue forward, while still embracing each other's limitations. Some changes have opened my eyes to a world that does not lend itself to a "wait and see approach". The world of Autism has many different countries with numerous dialects. What is acceptable in one country of Autism, may deliver a totally different response in another. Each day the language may change, current currency exchange may rise and fall, and the day's special could be something wonderful you never even anticipated.

I remember what it felt like to have a child that never interacted. My son's absent smiles, toys that were more preferred than me and the empty look as he gazed off in the distance. Gabe tantrumed constantly about almost everything from getting into the car, eating or putting on his coat. Everyday things became huge mountains to climb. To top it off, Gabe was non verbal without any use of gestures. When some days became too much and I needed a little reassurance that we would make it through this. I would long to hug Gabe. But, giving him a hug was received as something painful and unloving to Gabe. He would so desperately want to get away from your touch. As parents we felt like our son was unreachable in every way a parent should love their child. He was in his own world and we were not welcome.

I was fortunate that that period lasted for only a year. It was a year of desperation, loneliness, and anger. Anger not towards Autism, but towards the medical profession for taking the stance that my son was not worth even exploring the possibilities that were starting to emerge. I had many doors shut in my face, phone calls gone silent, and blank stares during that long year. It is the part of my journey with Autism I would choose not to relive again. As a mother, there is nothing more heart wrenching than when someone shuts the door of possibility right in front of your child.

All these memories have been stirred to the surface since I started reading Strange Son.






















The title makes me shiver every time I pick up the book. Strange son? How could a mother choose such a title for her book about her son? I almost didn't put it on my birthday list, had I not heard that she also did a lot of research about Autism and was the driving force behind one of the largest Autism Groups, CAN (Cure Autism Now). As I read, I begin to understand her choice for the title. It is not a word that denotes seclusion, lower status in intelligence or perpetuates the stereotype that follows Autism everywhere, but rather, the reaction from the world to her son, the wall of denial that was built too tall to climb, to overcome, the strange circumstance that no one knew what to do with Autism everywhere in regards to research, schooling, health care, or in creating an atmosphere for success for these children. The strange world you are thrust into when your child is diagnosed with Autism. It is a third dimension, sometimes created by Autism itself, but mostly by the uneducated community that surrounds you.

So, those are my thoughts for now. I am only about 1/4 the way through and am hooked. I admire her drive and tenacity. I also am saddened by her sense of loss she feels with her son. I wonder if I could have kept hope for Gabe for so long had he never improved with ABA, Speech, outstanding therapists and the incredible bloggers that keep me sane everyday with letting me know I am not alone and neither is Gabe.

A couple things to remember when reading this book, the author's journey began almost 14 years ago. Her and her husband were alone in their journey. There wasn't an incredible group of Autism Bloggers, Yahoo groups (Yahoo started up around 1996 publicly), and the Internet was hard to navigate with little or no medical listings. Another aspect to consider, Autism was completely dismissed by the medical community. We are still being quieted by our doctors being told our fears are unwarranted, when in truth they just missed the blatant warning signs. Can you imagine if every doctor said and felt the same thing? That your child was mentally inferior with nothing of merit to contribute to this world? Children were still being sent to institutions. Special education and the public schools? I can't even imagine the atrocities.

So, with all that in mind, I applaud her. In fact, standing ovation. When there was no one, nothing for Dov, she made something. It may not have been the same thing we would choose today for our children diagnosed with Autism, although I can not imagine what she possibly did not do for her son, she did something where there was nothing. That to me is amazing.

OK, Let me just explain....

Last night, SD turned to me and said with an eyebrow raised, "Autism for Dummies?"
He was looking over my Books I had read on Autism over in my side bar of my blog.
"Do they really have a book for Dummies about Autism?"
"Yes. " I pause, embarrassed by such a title and the fact that it is indeed a part of my cherished library at home. "But let me explain..." I stop what I am doing in the kitchen and look through the window that opens to where SD is sitting on the couch, lap top in hand.
"The reason I bought that book, although extremely difficult as it was with such a title, was due to the fact that it had a few very informative chapters on government assistance, agencies and support groups." I explained with conviction that I had indeed made an appropriate purchase.
SD smiled at me, then replied,"I just thought it was funny that they had one about Autism, that's all. The For Dummies books can be very helpful."

Oh.

Hypotonia

When Gabe was first diagnosed at 20 months, I immediately had him evaluated for OT, PT and speech. Speech began at square one. She started with trying to get Gabe to say anything. The speech therapist had not only the longest road, but the most rewarding. She saw first hand his amazing growth over the past two years in language. The Occupational therapist suggested we work on his eating, holding utensils and expanding what he would eat. Physical therapy revolved around Gabe's new diagnosis of Hypotonia. Hypotonia? I thought after reading online and seeing pictures of limp babies, I just didn't see it. Gabe is strong with a capital "S". The therapist agreed and added that it was only a slight affliction. I then wondered what that meant? He is kind've limp? I still wasn't seeing it, but continued therapy anyway. We stopped after a month or two, because he was, still is, right on mark for what he should be doing developmentally motor/physically. This "Hypotonia" didn't seem to be affecting him, that we could see, like his speech and eating were. So, we focused instead on those two things. Some of you know how intense his eating program was at CARE (Children with Autism Reaching Excellence) and Gabe goes twice a week to a private speech therapist.

So, week after week, Gabe and his physical therapist worked on his "core strength", building and adding tone to his middle. We refer to that area as "The Chubs". Is he overly flabby? No. He looks like a boy who is turning four and still has a little squish in the middle. He does have my genes. Boo is long and lean like SD was growing up. Gabe is not overweight or inactive.















What struck me, almost two years later, was how Gabe never got the hang of some simple body movements that babies do naturally.
Let me explain, because I really wonder if anyone else sees this in their children, Gabe as a baby never gripped my hip with his legs when I carried him. (Boo was like a monkey) I had to fully support Gabe's body (You can see it in the picture above). If I were to let go of him, which I would never do, but if I did, he would fall to the floor. He would not even attempt to hang on. Another example, is if you were to help him out of the car he would not jump to assist you or hang on to your arm. I would be lifting his whole body. Same with putting him in. Gabe would'nt lean in and reach for his car seat, balancing his weight,while I helped him slide into his seat. I had to lift and place him there, unassisted for a long time. My back hurt every night. Now he walks in and sits in his seat all by himself. Thank God!

I thought about this a lot today while I watched him at gymnastics. They have a mini bar that Gabe's class practices holding themselves up on (Arms straight, body balanced on bar). Gabe does pretty good with that most of the time, it is when she bends their body to flip around, that he goes limp. Putting all his weight on her. It's as if he doesn't know how, to either assist with movement, or he is missing something else. Is that the Hypotonia? I noticed it again when he got to go down the slide into the foam pit at the end. When his teacher tried helping him out of the pit, Gabe went limp. I could see the strain in her face. She said, "Gabe's a big boy!"

He is tall and has a strong build. I have heard "solid" when referring to Gabe's stature. But, I wonder how much is Gabe and how much is it being limp? I've been trying to plan ways to work on it, as if it was a skill to learn, but wonder how can I make him grip me? Maybe he just doesn't know that is what he is supposed to do? Why should he help, if someone else will do all the work?

(Gabe at 9 months old. He has lost most of the baby chubs, but still has a little squoosh around the middle)