Tuesday, February 9, 2010

So hard to say.

I hate that I have to do this post. I have not wanted to say anything until we were sure and until we had some answers but today any hope that it was all a bad dream were dashed.

Jonah has been gradually regressing and losing his ability to comminucate. Today he was given the preliminary diagnosis of Autism.

We saw our regular paediatrician on Monday. He evaluated Jonah and put his cognitive, social/emotional and fine motor skills as that of about an 8 month old. He sent us to an emergency appointment with a developmental paediatrician. That appointment was today. The Dev Pead is certain Jonah has autism. She said she never gives the diagnosis on the first visit because she needs to rule out other causes but if she were to go by what she saw today, he'd definitely get a positive diagnosis.

She has booked Jonah in for an MRI, en EEG and numerous blood tests. If they are clear then we get the positive diagnosis of autism because there is nothing else causing the regression and the other traits he has. If they are not clear then we're in serious trouble. These tests are to rule out 'more sinister' conditions. Unfortunately now, Autism is the good outcome, the best one we can hope for.

My baby has autism
My child is autistic
I have an autistic child
My son has autism
Jonah is autistic
Jonah has autism

Whatever way I say it, it just doesn't sound like the words are coming from me, or that I'm talking about MY child. Not my child. My child isn't autistic, he doesn't have autism.

I just cannot get my head around this.


  1. oh, dear donna. i'm so sorry. sending much love from maine.

  2. Oh Donna.

    I wish I had something supportive to say!

    Please know that I am thinking of you and your family at this trying time, and I hope with all my being that things get easier for your beautiful boy.

    Much love, Sally xoxo

  3. Oh Donna, I don't know what to say. It seems Jonah has been given a hard road to travel, but he has been given to the best ever parents, who will do there utmost to make his road easier. With your love and your hubbys, the love of his siblings (young and old) I am sure that he will always know that he is safe in your family's embrace. I know there are varying degrees of autism, my niece is on the higher functioning end, fingers crossed Jonah will come out towards that end when he is tested as he gets older. Hugs from Perth xxx

  4. I know you're processing. I know you'll be fine, and you'll deal with it as it comes. But for now, I just have this.

    Jonah is the same boy he was yesterday. And the day before. The label doesn't change him. It just changes what help you'll have access to.

    Please believe me when I tell you what a blessing it is that you have this diagnosis this early.

    But I'm sorry. I know you're hurting right now, and I wish so much I could make it go away for you.

    Love you, my sweet friend. SO much.

  5. Gosh Donna, what a lot to take in for you. While I can perfectly understand the preference for Jonah's dx to be autisim and not something more dire and perhaps harder to explain, it can't be a straightforward thing for you to just accept. I'm really sorry this massive hurdle has been presented for you guys.

  6. ((HUGS)) Donna. It's never something you want to hear. If you ever need anything, I'm not far away.

  7. This is tough stuff Donna. Real tough stuff. The road you about to embark on is going to be tough - but you are - in your words "One tough old bird" - and you are going to walk that road, and walk it well. Jonah is a very lucky little man to have such an amazing woman as his Mummy. If you ever want to chat - you know where I am.

  8. I am so sorry to hear that. I know it means a difficult road for him and you (& family).

    Loving him for the little boy he is, as your son, doesn't take away from the fact that you will need to grieve.

  9. Oh Donnbella I just want to hug you right now after reading this! I wish there was something, anything I can say to take away all your fears away. Just know we are there for you and willing to help out anyway we can. Thinking of you all!

  10. I'm so sorry Donna :(. (((((hugs))))))) for the roads ahead for you and the delicious Jonah. I will be thinking of you all as he goes through the upcoming tests and I hope they come out clear xo