When Andrew was a baby, we barely knew he was around. He was content just to sit in his carrier and watch the world around him. Now that he is 4, I hear "Look at him, he's such a good boy, he plays all by himself" and I just want to yell, "No, he's autistic, he prefers it that way!".

 People get the idea that a "Good Child" is the one who is not bothersome, the one who entertains himself. Sure, before autism, I thought the same thing. So what am I posting about.. Hell I dont know.. lol I just want to say.. listen NT mom's ... if your toddler wants your attention, wants you to play, wants to play with others, THATS A GOOD THING!

Bad Mommy

Ironically, during my pregnancies (usually brought up by prenatal test), I often said that I hope this child is not a special needs child. I am not equipped mentally, emotionally, physically to handle that. I marveled that there were parents who could handle that, but felt that I wasn't one of them.

My son was born too early, globally delayed, and diagnosed with PDD-NOS.  I have hosted therapists galore, for 3 years.  Participating, learning, implementing their techniques. I read the books, studied the key phrases and learned as much as I could about what was going on with my son. Apparently I am more equipped than I thought I was, or am I?

Doubts plague me often.  Am I doing enough?  Should I allow him to stim as often as he does? I am sure there is some program we are missing out on.  Are there therapies he should be getting that I am unaware of.  Should I take him to a DAN doctor, shoot him up with vitamins, change his diet to GFCF? I should be networking with other parents, finding playgroups and socialization programs.

Most days I just have to admit, I am just trying to get through.  Just make it till bed time unscathed.  Its these thoughts that make me feel guilty for not being stronger, and not having the energy to maybe be more engaging.  Allowing him to play with his Ipod, while I sit here losing myself on the internet. I avoid taking him to the stores, parks and on errands for fear of judgments from NT parents.  The sadness I feel when he is around neuro-typical peers, stimming while they play can be quite overwhelming.  At home, he is happy go lucky Andrew.  There are no judgements, no basis for comparison.  There aren't sympathetic glances from strangers.

The basis for therapy is to make him more typical.  To bring him out of his own little world, and into ours.  Most days however, I wish that I could just vacation in his.  A fantasy world where we just stim, scream, laugh inappropriately to our hearts content. No onlookers, judgments, or worries about the future.  

Out of the mouths of babes

"You don't know what its like to be an 8 year old girl, with a brother who has special needs"....

Jacquelyn was upset one day because I wouldn't allow her to something and I was amazed to hear the above quote come out of her mouth. Amazed because its a pretty mature statement to be made by an 8 year old and because she was right. So right, that it made me stop in my tracks and catch my breath.

I cuddled her head against my chest, and validated her feelings. I told her that we loved her very much and are really trying hard to give her more one on one time. She breathed a heavy sigh of relief. Not just because what I said made her feel better, but because she was able to get it off her chest.

Autism doesn't just effect the child on the spectrum, it effects everyone involved in that child's life. I am glad my daughter gave me the opportunity to open my eyes just a little wider, so that I could see this.

We have started ABA (Applied Behavioral Analysis). At first, I have to say that I was leery of this therapy. From what I heard, read and viewed on the internet, it seemed to be very rigid and robotic. Though MANY discussion with my case worker and the therapists, we have come up with a team that has modified the ABA therapy to be less intense. When he can tolerate more, they will attempt to get more, but if not, they don't push him to hysteria.

Since starting ABA, Andrew has had a verbal breakthrough. He can speak, and tell me in short statements what it is he wants, what he sees. Its really awesome (one of his new words) to hear his voice. There have been vast improvements in his social behaviors. He cuddles up to a few of the therapists, and has even walked over to kiss one on the cheek. He's letting down his guard and letting people in.

Of course it hasn't all been wine and roses. He still has difficulty with Physical therapy and a specific new therapists. We have wrinkles to iron out but I feel very hopeful where as before I worried that my son would be trapped in his own little world indefinitely.

We are now discussing school. Its a scary thought. He is only 2 1/2. Part of me wants to keep my baby home. The other part thinks that the socialization he will receive there would be invaluable. Its a bit of a struggle to make sure that my MOMMY side, doesn't thwart his progress.

My New Eyes

I was online at CVS and noticed an odd looking man in his twenties. He looked as though he tried to give himself a backward Mohawk. His hair was all chopped up, and clothes a bit disheveled. Honestly, my first impulse was to be leery of him, I mean he looked kinda out of sorts. It soon dawned on me that he may be "Out of Sync".

"The Out of Sync Child" is the bible of autism world. It discusses SPD in length (Sensory Processing Disorder). SPD is a key component in autism. Autistic children do not process information from their environment like "normal" children do. Essentially their senses are out of wack. They either crave stimuli, or are over stimulated by their senses of smell, touch, hearing etc.

I continued to watch this young man purchase his goods, and talk on a cell phone. His voice was louder than normal, and he was repeating himself a bit. What was more interesting to me was the way the cashier addressed him or rather didn't address him. She wasn't outwardly rude, however you could see that she was distancing herself. She offered little or no eye contact and "forgot" her normal "Have a good evening" at the end of the transaction.

A heavy blanket of despair hung over my shoulders that night. I was disappointed in my own initial reaction. I was suddenly hit with the realization that this could be my son in 20 some odd years. It was then when I started to think about the times I was irritated by a misbehaving child in the store, the mom who I perceived to be negligent in discipline.

Andrew's diagnosis has given me a new perspective on the world, and I am a better person for it.

Baby Steps

Today, Andrew twisted a switch that made a little lion pop out of its box. He's been playing with that toy for months, avoiding the one that required a twist, but today HE GOT IT!!! So proud of my little man.

Another exciting development is the discovery that bear hugs and deep massages, help to calm him down when he is upset. Apparently he's craving that input so we have found a little clue to the puzzle of what works for Andrew. I am really looking forward to more discoveries.

Overwhelmed

We haven't started ABA (Advanced Behavioral Analysis) yet, and I am already overwhelmed. Five days a week, Andrew has therapists coming over, sometimes twice a day. Each time, I worry about whether he has eaten beforehand, did he have a nap, is he going to comply with the demands they make. I am lucky, I get to see Andrew at his best. He's an adorable, loving, interactive hugging machine. Yet, when they come, they don't get to see this.

The boy can't win I tell you. If he does as he is told, and completes a puzzle, the therapists lament that he isn't giving proper eye contact. If he runs away, non-compliant, he's too self directed. 5 days a week, I have people telling me that there is something wrong with my son. Well yes, there is by golly.. he's AUTISTIC.

Sometimes I feel the need to point out the good because they aren't looking. They are stuck on their agenda, and don't acknowledge the fact that this 2 year old just sat for 45 minutes doing everything you asked of him. I have 2 other children who are "normal" who would never sit down for 5 minutes, let alone 45. He completed the new puzzle, or matched the pictures, stacked the cubes, and pushed the right buttons. PRAISE him. If you do, he will eat that up. He will perform even more. If you are all business, he will be all business also. He won't look at you because frankly, he senses your distance.

Ok, I am done venting. I know I am over reacting and probably over identifying. The thing is, I love him. I hate to see him frustrated and miserable when I know that generally he's a happy little man. I want you to see him as I do, but I can't make him give you that. That is something you need to earn by being his friend.

P.S. If you could throw me a bone every once and a while, I would appreciate it. Tell me about his progress and his strong points. Believe me, I know the negatives by heart.