Friday, 4 January 2013

Autism and us

Our son has Autism/High functioning.
It was not always this good though. People look at us and think we are so lucky. Or he is COMPLETELY misdiagnosed! The doctors were insane!

No, we are the blessed ones.

When Gerrit was a baby around 4 to 6 months old we could see a difference we turned a blind eye to. You had to do things HIS way. He hated the car seat so much we had to physically force as carefully as possible to get him into it. He would literally (a baby now here) have his body inverted from the sitting position he was supposed to be in! lol. Looking back the signs were clear. Later on he had words "mama", "dada", "kitty". Then around 18 months nothing....
He lost all speech, we had his hearing checked and he heard fine.
He would bang his head against the wall or the floor around this time line as well.
Started lining cars and other toys up perfectly, if you messed with them they would just flip out completely.
Walk into a store that was tight on room, and he would just flop his body to the floor and bang his head. If I tried to go through the store to just get what we needed, he would be screaming and I would get the dirtiest looks from people who just could not possibly understand because my son looks perfectly normal. So of course I must be the worst parent ever.
And heaven forbid if I went in a direction that he did not want to go in.

I was fortunate to have a friend that helped me with parenting him. One day, when Gerrit was 2 years old Sarah told me that she thought he might have Autism. I flipped on her. I think I may have swore at her, and I ignored her for a few weeks completely. But Gerrit was undeniably different from other children. The less time I had her babysitting him to give me a break the more I thought "She may be right, and my parents put their head in the sand with my brother being so different. We'll see a pediatricians and then we can go from there. This could be nothing!".

The day after Gerrits 3rd Birthday. We talk to the Pediatricians, she asks us some questions and diagnoses him as Autistic/Low functioning. And she adds a little blip that I will never forget, it sounded just like those commercials after they just showed off this wonderful drug. "He is Autistic, do not expect him to graduate from school, get a job or ever get married."
My heart stopped, and the grieving process began in my soul. Because when someone tells you that, you have to release every dream in a way. And look at your child differently.
This beautiful child of mine is 3 years old. Half of me hopes "there is ALOT of time till he does any of those things, this can change". And then the impending other half of "what will we do if she is right?!".

I sank low, an all time low. It was very difficult day. The next day I felt God smiling down on me. I really knew nothing about autism. In the year of his diagnosis (2007) their was not alot of awareness. So I did what I usually did at an all time low. I turned on my television, and watched Oprah.
There was the most amazing moment, where a woman talks about her son that she was able to bring back around. It was Oprahs interview with Jenny McCarthy when she first told the world about her son and what Autism looked like.

Suddenly I was not alone. My husband thought Gerrits diagnosis was bulloni. But after I watched that show I knew I had to go online and research until I knew better what to do, how to cope and how I could help Gerrit be the man I originally wanted him to be. To stop grieving and start hoping again.

We were in touch with REACH and they put Gerrit into IBI (Intensive Behavioral Intervention Therapy) And would constantly do transitions. Gerrit loved to play with Thomas the train (most Autistics do, the track is predictable so they feel comforted by it). So they would do things like set up a table and do play dough there then after 10 minutes they would transition him to playing with blocks on the floor. And it would go on like that. The therapists would come to our home at 9am and leave around noon and come in another set of therapists around 1 to 3pm.
It was exhausting for me, but even more so for Gerrit. But they helped me potty training him at age 4. (He had no interest before that)
And when he begun IBI his speech was at the level of a 9 months old (at age 3 years) and when he graduated from IBI he was 5 years old and his speech was comparable to a 8 year old. Even now people are shocked at how vast his vocabulary is.
And all I can say is, its a miracle. Gerrit begun IBI and the door basically closed behind him for other children to get in. Some now get a diagnosis for Autism around age 3 or 4 and then they have to wait for years to get in. Gerrit got in within 2 months of his diagnosis, it was warp speed fast for us. But the best thing we could have done.
We are fortunate. And thanks to IBI and Gerrit being so receptive to it, our child is now high functioning. He has his issues but we can get around them or work through them.

My heart goes out to everyone who has to wait. If anyone wants to discuss Autism in their life, I am always here.


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