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.

Louder Than Words by Jenny McCarthy

I am presently reading Louder than Words by Jenny McCarthy. What a read! It grabbed my attention and held it there all day. I could relate to a lot of what she went through with her son Evan, and finding out that he was autistic. During my read, the mail carrier came with the days mail, and I noted a large envelope. It was the evaluation from the child psychologist. That was timed perfectly I say. I read through the report and everything was in order. I was comforted that the psychologist noted Andrew's desire to communicate, and his search for attention.

In the last year, Andrew has had regular visits with Occupational, Speech, Feeding, and Physical Therapists. One of the most frustrating parts of this was Andrew's inability to perform on demand. I would tell the therapist "He did this.. " or "He said that...." but of course, Andrew would not repeat it for the therapist. Because they didn't see it or hear it, it couldn't be recognized in their evaluation.

She saw Andrew as I see him, and it just so happens that he fits the diagnosis of PDD-NOS. Still a little hard for me to digest, but I will get there.

Diagnosis

One day, I watched my child as he smiled so brightly, and wondered, "Is there such as thing as being too happy?". So complacent in the world around him, we often called him "Happy Gilmore" because he was always smiling.

Autism (Pervasive Developmental Disorder to be more specific) a word that I dreaded, a diagnosis I feared, realized just a few weeks ago. Andrew was my easy child. There were signs though. I didn't want to see them. I wanted to believe his prematurity was behind his immature behavior. None the less, it became strikingly obvious, that there was something wrong.

In response to excitement, usually over a rotating or suspended object, Andrew would bang his feet on the floor, clench his fists. He had an open mouth posturing that looked like it was painful. He babbled but never spoke with intention. Words like Momma, Dadda, Nanna, would slip from his lips, but never made the connection to an intended person.

Prior to this diagnosis, he was receiving Early Intervention due to global delays. He had feeding therapy, occupational therapy, speech therapy and physical therapy. Andrew was over-toned, tactile defensive, needing sensory input and at the same time, desensitization. At 18 months he took his first steps, and now at 2 we venture into the spectrum.

Spectrum, what a fitting word for this disability. Not only does it describe the disability, but it also describes the emotions I, as a parent am going through. Prior to the diagnosis, I was defensive at the mere mention of a possible diagnosis of Autism. Upon getting the diagnosis, I was heartbroken, and depressed. Currently, I am somewhere between denial and acceptance.

How can this loving little boy be autistic? He smiles and claps his hands when he is happy to see someone walk into the room. He runs to me and gives me big hugs. Andrew pursues attention and company. He will bring toys to you in hopes that you will play. He used to cry because Elmo sang what sounded like a sad song. He interacts with other children. This is not what I think of when contemplating Autism.

Then there are the times when we have difficulty getting his attention. He never really consistently responded to his name (another sign). If he is watching t.v., or involved in something, he does tune the rest of the world out. Then of course, there is the "stimming" behavior. His stimming, seems to be a response to excitement, and not a need for stimulation. I guess I really don't understand this fully, but yes, its an autistic trait.

I need to understand. My mind needs to grasp this but its such a vague, and yet encompassing disorder. This is going to be one hell of a Journey!