Autism

Autism: There’s always a question

Raising a child with severe nonverbal autism is always challenging. I overthink all my decisions. Every little thing seems so complicated, even when it might not be. I often decide not do things I would love to do just because Charlie’s behavior is too unpredictable. When we go somewhere I feel like I need to know exactly how everything is going to be so I can prepare Charlie and myself for every scenario.

And there was a pond…

A few weeks ago, I decided to take Charlie on an adventure because he loves to be outside. I thought he’d love to run around in this beautiful park by our house. Unfortunately, I didn’t know there was a pond there. It was a small one but not small enough to escape Charlie’s attention. He saw it as soon as we got there and all he wanted to do was jump in it. After a few minutes of wrestling and screaming, I managed to drag him away from the pond. Meanwhile, the other kids and their parents stood there confused as to why anyone would want to swim in that disgusting pond instead of just feeding the ducks. I was hoping Charlie would forget about the water once he saw how fun the rest of the park was but he didn’t.  He spent the entirety of our time there screaming and trying to find his way into the pond. I didn’t have a good time and neither did he. 

Questioning everything 

I do my best to do things with him despite the anxiety of putting ourselves out there. Sadly, more often than not when I muster up the courage to step out of our comfort zone to experience the joy of motherhood I had dreamt about, autism wins.  I end up questioning everything. Was I stupid to take Charlie to that park by myself? Maybe I should have investigated the place more first to see about possible water there? But what if, for once, Charlie didn’t try to jump in the water? I won’t know unless I try. Unfortunately, these bad experiences usually leave me wiped out make me want to stay home and not confront the outside world again. I sometimes get sad seeing other children younger than Charlie talking, or running to their mom screaming, “mama”. Will I ever experience this? Am I a bad mom for wanting more from my child?

The guilt

Some people think wanting my child to talk makes me a bad mom. They think it would hurt Charlie to read my words because he’d feel that I reject him because of his autism. That’s their perspective. I respect it, I guess, but I don’t agree with it. I blame myself for feeling sad about Charlie being severely autistic. I’m always questioning my parenting decisions. Is his current speech program too much for him? Should we pull him out of preschool for more therapy? Is the Proloquo the right communication device for him? Is he autistic because of me? I’m upset he ended up on the “wrong side” of the spectrum. Yes, the wrong side.

His chances at being an independent adult are close to zero. I’m confident that if Charlie had been given the choice, he would choose to talk. You should see the sadness in his eyes when he can’t communicate to us what he wants. There’s nothing laudable about not being able to communicate basic needs beyond, “I want water”. Unless you’ve experienced raising a severely autistic nonverbal child then you most likely don’t know the powerless feeling of not being able to help your child. People should stop guilting parents for feeling a certain way about their child’s disability. Grieving the idea of a child you thought you would have is not incompatible with loving your child. Not at all.

What’s the deadline for a child to talk?

I try hard to stay positive and strong for my child. I don’t want Charlie to see me sad, and I don’t want to feel sad. I’m lucky to be raising a boy who is handsome, full of joy, and most importantly healthy. I keep telling myself that Charlie is my son for a reason. Still, sometimes the heartbreak of Charlie not even saying “mama” overwhelms me. The neurologist told us that if a child wasn’t talking by age 5, then chances of him ever talking decrease drastically. No one knows what the future holds and nothing is set in stone, but we feel the clock ticking. 

autisme

 

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5 Comments

  • Reply
    Monica
    2017-08-20 at 6:08 PM

    I so appreciate your honesty. When reading through blogs of other autism parents, I often find they tend to be either way too cheery or way too “woah is me”. Not saying that there is anything wrong with these feelings. They are all incredibly valid and real. It’s just not my reality. The truth is, some days are amazing with my son… others, not so much. Some days I ugly cry when I hear a kid calling for their momma knowing my son cannot. And some days, I know that love doesn’t need words. For me, posts like this remind me that I’m not alone. And sometimes I feel so. very. alone. So, thank you so much for putting yourself out there for people like me who find comfort in knowing that there is someone else out there who is experiencing the same thing. Sending love for you and your sweet boys.

    • Reply
      Charles
      2017-08-22 at 12:01 AM

      Je suis papa d’un enfant handicapé âgé aujourd’hui de 19 ans (hémiplégie grave côté droit)
      Pendant les 12-13 premières années de sa vie je l’ai emmerdé par 5 séances de rééducation par semaine afin qu’il marche et que des liaisons “abherantes” se réalisent dans son cerveau
      Aujourd’hui il marche, parle, cours mais aussi est en passe de devenir moniteur d’équitation et est un skieur plus qu’honorable
      A l’origine les professeurs de Neker lui prédisait l’avenir d’une plante verte et nous avons croisé récemment une jeune fille souffrant du même handicap mais non “traité ” : un légume
      L’amour et l’opiniâtreté vous feront franchir des montagnes
      Surtout NE lâcher rien. Jamais. Et merde pour les neurologues qui ne font pas entrer en ligne de compte la force de l’amour
      La prochaine fois pour le lac, systèmatiquement une brassière de sauvetage intégrée dans le vêtement et le laisser aller…
      Bon courage à vous

      • Reply
        The Autism Cafe
        2017-08-22 at 8:03 PM

        Merci beaucoup Charles pour votre commentaire. Cela me donne de l’espoir. Je suis heureuse d’entendre que votre fils a réussi. Bon courage a vous et merci encore!

    • Reply
      The Autism Cafe
      2017-08-22 at 8:04 PM

      Thank you so much for reading the blog and taking the time to leave a comment. It means so much to me. We are not alone, definitely not. Best of luck to you.

      • Reply
        mildred aspero
        2017-09-07 at 1:08 AM

        Thank you for this!

        I cried a lot reading your blog. I feel the same way too. That feelings of yours, the longing that someday, one of these beautiful days our little jacob will able to call us mama & papa.

        God bless 🙂

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