Jellybean is what they call "non verbal". I have lost count how many times i have just sat there and prayed to whomever would listen that he could just talk. I have sworn out loud, silently and screamed so loudly "why cant you just talk" so many times that i am suprised that the neighbours haven't said something. I must say though that it is one of the most frustrating aspects of his autism for the both of us.
When he was 18months old he could only say a couple of words. Seeya was he first real word and most of the words he could say were nouns/labels for things. He could not say mum, kinda said dad but it wasnt really clear. One day at birthday party I was talking to a friend of a friend who just happened to be a speech therapist about Jellybean. She was the first person to say...wait hang on a minute, he should be saying more than he is, that doesnt seem right and agreed to see him for some therapy.
I have to say that he made a little progress...although slowly. It was hard work. I lost count how many times I had to model a word and break it down. I must have played with a ball and said it hundreds of times before magically he said the word ball....and i just about let out the biggest OH MY GOD YES IT IS A BALL!!! Unfortunately though a trend would start. He would gain a word, say it pretty consistently for sometimes days or weeks and then it would vanish as if by magic never to be heard again for months, sometimes a year before I could teach him that word again and some I still have not heard again :( .
By the time he was 2.5years old we had about 40 words, mainly again nouns but he was starting to put some words together and we were getting sentences like oh no it dark and go car. I though wow we are getting somewhere. We were still looking towards his diagnosis, still on the public waitlist for his assessment but we were gettign some language and I was over the moon..
It took only a few weeks for the language to all go. He had what they call a regression.
Again words we worked so hard to teach him...gone.
And then we were left with just NO. his only clear word.
By this stage he had started therapy, not ABA but what they call TEACH at an early intervention centre. Everyone said, when he gets into therapy, you will see so much improvement, he will come so far. Everyone said, he is still so little...its great you got him in so early. But...he got worse.
He did three terms at this early intervention centre and by the end when i pulled him out the only thing he said to me was BAAAAA and GAAAA and NOOOOO. He would not wear shoes, could not sit and pay attention to a task at all, still could not talk, still had not the best eye contact.
This i have to say was the most depressing moment of my life. I was at absolutely rock bottom. At 3 and a half years old after two whole years of therapy he was actually worse than when we started. I could see him falling more and more and more behind neurotypical kids his age. I lost friends, I was socially isolating myself as my sons behaviour was stopping our life. It was too hard to take him out, too hard to keep him home. I just did not know where to go, what to do next. COMPLETELY LOST.
When we started ABA we started to get some language and I think the first time he said mum again I just about fell over. Everytime he says it, its like music to my ears. To all those parents who I hear say how their kids just say mum this mum that all day and how annoying it is...you just dont know how lucky you are. It is an honour to be someones mum and to have them say it to you is unbelievable. Earlier this year, Jellybean learned how to say dad again. it was around 18months since he had said it to my husband and i saw tears in my hubbys eyes. I do get lost in my own world too much and forget that it is just as hard for him too.
This weekend was hard. Jellybean woke up screaming and he could not tell me what was wrong. It is hard to get language out of him without prompting normally but when he is upset, i get nothing. All i want is my son to tell me what is wrong so i can fix it. As a parent, when they are hurt, you hurt too and all i wanted was for him to tell me what I could do and all he did was hug me for dear life and cry.
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