Autism For Moms and Dads

Autism is a thief: Navigating emotions

   You know, it’s funny. I have so much to say today yet so little at the same time. Charlie started repeating words consistently. Like actually speaking words out loud. I cannot stop smiling. You always hear those stories about kids who woke up and started talking overnight. I’ve read them. I’ve heard them. But I never thought it would happen to us. Well, it did. Sort of. But Charlie actually started repeating words overnight.

It all started on Christmas Eve when I nonchalantly asked Charlie to say “daddy”. He looked at me and said “daddy” loud and clear. When he saw my happiness, he started smiling, clapping, and laughing! He was so proud of himself. Willy then asked Charlie to say “Jude”. Charlie did it. He said “chud”. We were so impressed. My jaw dropped and my eyes teared up. We tried to get Charlie to repeat a couple more words and he tried hard, mostly making the correct sounds. Charlie wasn’t able to say “mommy” because he can’t make the “mmm” sound yet but he tried. He said “poppy” instead. He then repeated “pouch”, “apple”, and “bye”.

If you’re raising a typical child, you’re probably wondering what the big deal is. After all, Charlie is almost 5 and these are skills an 18-month-old should have. Well, to us this is incredible. Charlie is gaining imitation skills, and he now has the intent to talk which he didn’t have before. Not to mention, his word approximations are pretty good for a child who pretty much didn’t say a word for 5 years.

It was such an amazing feeling to see Charlie try to talk. He was so happy that we were happy. That in itself is a huge victory. It can be hard for us to connect with Charlie and in that moment we all felt a connection with him.

But autism is a thief

I know it. When Charlie was a year old he had a few words. He used to interact with us and he’d say kain kiou for “thank you” when you’d give him something. He’d also say de l’eau which is French for “water”. And then it all stopped. That’s what autism does and honestly this is one of my biggest fears and one of the hardest things for me. I’ve built a bit of a shell around myself to protect from the possibility of autism taking these skills away from Charlie once more. It’s crushing when you see your child regress. It would be even harder now after such an incredible breakthrough. 

It’s not the first time Charlie’s made a breakthrough, yet this feels different. It feels like more than times before. But because regressions are such agony to experience as the parent of an autistic child I’m stuck between euphoria and terror. I don’t fully have the ability to enjoy the present moment without worrying about what Autism is going to take away from us again. But gosh, this is so amazing. I say it’s a miracle but Charlie’s been working so hard for almost three years now. His therapists are doing a great job and it isn’t just a miracle.

To put it into perspective, just a couple of weeks ago it might take up to 2 hours for Charlie to repeat the word “bee”. Right now, he’s repeating, or at least trying to repeat most of what we say. And the most beautiful part of it is to hear Charlie say those sweet little words that have been silent and missing for over three years now, to have that little window open into his mind that had been painfully gone for so long.

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4 Comments

  • Reply
    Carol Dawson
    2017-12-30 at 4:14 AM

    Dearest Eileen,
    All those who know you, have been exposed to you, or who truly love you must feel the tremendous tension you describe and are living with. No doubt, everyone wishes they could DO something. But, one thing I must say is that you are doing something for others. You are chronicling your journey and giving others light for the path. And you write so beautifully. God has given you a great gift of expression and realism. Since I know French to be your native tongue, I am doubly amazed at your competence with English. God encourages His children to trust Him, to trust in His sovereignty. He sees the whole picture. Isaiah 55:8-12 says it best.

  • Reply
    Brandy
    2017-12-30 at 4:56 AM

    This is so true!! This made me emotional because you really described what Autism can do to you in an instant good and bad. But congratulations I’m so happy for Charlie and your family!

  • Reply
    Jess
    2018-01-10 at 5:16 AM

    I just found out today, that my son may very well be autistic. I will find out more in the next couple of weeks but, my son repeats everything everyone says and doesn’t have many of his own expressions come out. It’s impossible for me to make him behave and people in public always give us the look when he has outbursts. He is three and we’re having a terrible time getting him potty trained. I just want to cry. I don’t mean to leave anything negative here, but, we’re just getting started with all this. I’ve known something was up since he was 6 months old, but everyone else denied it. A mother always knows. Charlie is such a beautiful child. Congratulations on his milestones! Thank you for making this website. I have a feeling I’m about to be here a lot.

  • Reply
    Kayleigh
    2018-03-25 at 11:25 PM

    I am relating SO hard to this.
    My almost 4 year old daughter with autism has had a very similar breakthrough over the past few months, since attending nursery.
    It’s always on her terms, but when she copies, it’s the best feeling.
    She’s had the regression too, but like you’re saying, this time she’s doing so much better and it just feels different.
    Always celebrate these little milestones-they are SO big ❤️ and you deserve that joy!
    Keep going Charlie, we are ALL cheering you on.

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