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Wednesday, September 1, 2010

ask no questions...

You could be like me, and ask the question you've been putting off for months.  You could think that you really want to know the answer; that you can cope with it; that anything's better than not knowing.

You'd be wrong.

I asked the question, and now I have to live with the answer.

It was a one-part question with a two-part answer.

Part one:  The Bear will almost certainly develop functional speech.

Part two:  He is unlikely to develop social speech.

In other words, he'll be able to tell me he's hungry but not that he's sad.  Or certainly, not why he's sad.  No social speech.

I've been lying in bed, unable to sleep, with that phrase running through my head: "No social speech.  No social speech.  No social speech."

And another thing.  Echolalia.  I'd been thinking it was cute, and quirky, if somewhat annoying at times.  But it has just dawned on me that when I say "Hello Bear" and he says "Eh-o Bear", it's because he doesn't know what to say.  It's such a basic instinct, to say hello to someone who says hello to you.  How can you not know what to say?  "Hello Bear".  No social speech.

There's more I want to say about this, but I can't quite sort my thoughts out.  (No social speech.  No social speech.)  

I'll be back soon, with my happy hat back on, I promise.


  1. Oh, Millie.....I am so sorry.

    I hope they are wrong.

  2. I'm really sorry! And don't feel you need to come back with your "happy hat" on if you aren't ready for it yet. It's okay to be real and in real life ppl don't always have a "happy hat" all the time. You'll get through this. You are a great mama.

  3. Thinking of you and the Bear, and wishing I was there to give you a hug. Missing you and sending you lots of love, T xxxxx

  4. I am not really anonymous, just have never posted a comment before!xx

  5. oh hon, please don't give up hope! Yes, social speech is hard for kids on the spectrum to learn. We struggle with it every day! BUT, my son has made HUGE improvements with his speech (pragmatic and functional) over the last 3 years.

    Jayce was almost completely non-verbal. Then he would only use single nouns. Then he only had echolalic speech. Then he started using scripted speech. The spontaneous speech came after that. Now you can actually have a conversation with Jayce. Does he talk about his feelings? Not always. But he tries. And when he doesn't have the words, I give them to him. And then he has them for next time :)

    Its a process!!

  6. Sending so much love and warmth your way Millie... I'm just so sorry you and your family are going through this. :(

  7. Hang in there, Millie. A diagnosis is not set in stone. He may or may not develop social speech, but his communication will improve. Tomorrow is not today. I know this sounds a little silly or trite, but I've been trying to channel my dog a bit - you know, that whole live in the moment thing. What is good about today is not what was good about yesterday or what will be good about tomorrow so I need to remember to appreciate the joys of today and not worry about the worries of tomorrow. Not an easy thing to do by any means. You do have two beautiful children who are both special people in their own ways.
    Again, hang in there! Sending hugs across the world to you!

  8. Hey Millie

    Just found your blog today - am a colleague of your sister Mrs T over in the UK, and my autistic daughter is one of your nephew's new playmates. I wish you could see them playing together, as it would give you such hope! Lulu is 8 now, but 5 years ago, we were exactly where you are right now. Everything you write about so heart-wrenchingly is SO familiar to me - the dread of any new symptom that emerges, the agony of not knowing its significance, the worse agony of knowing, the hope, the despair: all rolled together in a single sleepless night, sometimes.
    Please don't give up or resign yourself to simply existing instead of truly living: as your other readers say, nothing is set in stone, and the joy of each tiny breakthrough, however small or temporary, is worth all the pain and struggle.
    Autistic children bring the best of all 'Mummy highs'! (My finest achievement in my whole life was not career-related or my wedding day or any other pre-Lulu moment: it was the day my daughter (aged 6) used the loo for the first time!!)
    Things do take longer, and are different and harder and more halting and inconsistent and slooooowww, but you really honestly will get there, together, in
    the end, and maybe even find yourself one day being at peace with ASD, and all the havoc it has wreaked in your life.

    I hope you feel better soon, and have a good weekend together with your lovely family,
    best wishes
    amanda xxx

  9. Can't even imagine how hard that must be to hear. No happy hat necessary, blog world is here whether you are happy or not.