Lately I have been doubting a lot. That denial cycle has come and go and go and come.
Today was a great day for my son. He was a parrot. Yes. The non talking kid was trying so hard to communicate. He grab a “my first words” book and brought it to his dad. Open the “FOOD” page and started ” mmmmm ff ff ffff” – food- then he pointed ( a big big thing for him) with his whole hand the banana and said “banana” the word he has said for months already. Then pointed the strawberries : ” staaaaais” he has been trying that one for 2 weeks. And then he pointed the apple ” APht” He has never tried that one so he looked at his dad and smiled. 🙂 . Then he pointed the carrots and turn his face to me like asking , how those this damn things are called mom?, I didn’t say a word. He said: ” totsssss?” asking. I said , yes, carrots. And he smiled. Then he started with the numbers. He has been lately counting 1 to 10 but today he counted the drawings ” Oneeeeee babeeee” ( one baby) ” tooooooooo pats” ( two plates) and he we go until 10.
I was so happy. We were in a birthday party. In the common area of the building while he was doing this.
One of my neighbors was in the past the nanny of a kid with autism. But that kid had a pretty hard time with autism. He is no verbal to start, his motor skills are just been hitted by autism, in a way of say it, not literally.. So of course my neighbor was “been nice” telling me :: ” oh no if he is autistic, if he has autism, he is a lucky one, he is just not” . AS I know she is been nice and trying to cheer me up, thing that I didn’t really need in that precise moment, I just smiled at her, and said ” all autism are different, that is why is called spectrum ” and smiled again. Didn’t want to spoil the moment with my son, nor a good friend Party.
But what should I fight?. I mean, is it ok to plant my foot and tell people, “hey you, he Is DIFFERENT” no matter how equal you see him. Really?. I mean.. is not the opposite what I’m trying to do for him?. Not to deny the autism, but to learn how to interact with the word and live on it and for that he will need to be accepted as equal and respected as “one more between the masses?” . I know is kind of a contradiction, as I know awarness is something I should fight for. As many people recognize how to deal, respect, and handle a situation with an autistic child, as many people that understand that having autism doesn’t make a kid, adult, teen, etc, someone “different” or someone to keep far as better world My kid will live in.
But… If he learns how to get inside “our” world keeping his World at the same time. Isn’t that the best for him?.
So now, I started thinking a little more. How much should I fight for him to have an special education? Will that be the right thing for HIM?. Or Should I fight for him to be included in the neurotypical world of school since the beginning?. What should I fight for? What is the best for him?
I also have another friend who’s son has Down syndrome. An Amazing boy may I say. the first one My son made contact with, even before the GFCF diet. But something in her assumption of my kid not to be able to do a lot of stuff, as her kid can’t, hurts me. Am I wrong?. I know she had a hard way to walk to make her son the amazing 12 yo he is. But I know we are not walking the same road. It might look similar, but it is not. I think I’m even walking a different pat of other people dealing with autism. The pats look similar but at the end we are all walking throw different barriers and walls. After all That is why Autism is an Spectrum.
So why? Why is so difficult?. She keeps telling me I should fight for this and that. and I should ask the school to do this and that at the IEP. Etc.
It hurts a little she thinks by fact my kid will qualify for the special needs program. Thing that I still have my doubts. Not as for the program as I had heard great things about it, but as for my kid development.
It doesn’t help either that our therapists are divided. we have 6. yes 6 therapist. 12 hours of therapies per week. one of the is here 6 hours per week, the other 6 hours are divided between the other 5 therapist. 3 of them think he is NT with some developmental issues. Even one suspects celiac as the main cause of his developmental problems, but not autism. 3 of them think autism. So I keep fighting.. with my denial cycle…
As my husband says and what helps me to sleep at night.
He is happy, he is trying, he is working. But he Is happy. And we love him, and his sister adores and loves him. And HE IS HAPPY.
But what should I fight for? What does he needs?. I’m his mother. I should known.. shouldn’t I?