Special needs parenting is a hard road, but whatever it takes, we must fight this battle for our kids and be their advocates.
I laid there on the ultrasound table waiting anxiously to find out if you were a boy or a girl.
When the tech said, “It’s a boy!”, I wept.
What was I going to do with a BOY?!
But the instant I saw you, sweet boy, you captured my heart.
That’s why when you turned 12 months old, I knew I had to fight for you. Whatever it took. I had to be your advocate because you didn’t have the words to tell us what you really thought. Those tricky words were in there. I could see them. I watched your little brain trying so hard to get your muscles to cooperate.
It was hard.
You took us by the hand and pointed to what you wanted. Most of the time we understood, but there were those moments when we were both in tears trying to communicate with each other. My was heart breaking because I wanted to fix it, but there was nothing I could do.
Speech therapy was our lifeline.
Those words came. So many words.
But we were
warned told that this wasn’t the end. That most children with childhood apraxia of speech have other issues too. We were to play a wait and see game.
I’ve never really been one to like games. I knew that I would advocate for you again. I wouldn’t leave you to fight on your own.
But I wasn’t prepared.
I thought I was. I wasn’t.
Can you really be prepared?
The signs were there.
- doesn’t like loud noises
- tags in clothing (affiliate link) were becoming more and more bothersome
- running into people and things on purpose
- stomping his feet when he walked
- standing on his head
- likes eating lemons
Things that to some extent were completely normal, but coupled with the rest meant only one thing. We were dealing with a sensory processing disorder.
The therapist came and sat next to me to talk about a treatment plan. It was very matter-of-fact and to the point. Tears ran down my face as I watched her lips move. Words were coming out of her mouth and I was asking questions, but it’s all a blur.
My heart sank.
I had flashbacks of the time we got your Childhood Apraxia of Speech diagnosis. My head was spinning. I couldn’t think about anything else. I knew we had to fix this. We had to find someone to help.
But it’s not that easy.
Nothing ever is.
To some extent therapy is wonderful.
It’s great to be around other parents who get it. If your children runs out the door and you have to leave your other kids in the lobby, they understand. They have been there. If your child is too rough and bear hugs another child or runs into them, knocking them to the floor, it’s okay. While I’m still embarrassed and apologize profusely, I am met with smiles, nods, and reassurance.
They get your life.
But then you have a false sense of security. Because in the real world, no one understands.
When you go to playdates, family birthday parties, or out to eat and your child is overstimulated, your sanity is out the window. You want to join your child under the table because the stares and whispers are suffocating.
To the outside world looking in, you’re a bad parent.
You aren’t consistent enough.
You need more structure.
You need to discipline more.
You aren’t good enough to parent your child, so why do you have four?
It’s not just the stares.
My son is 5. This year he asked for a little Lego Birthday Party. When I asked my husband what we were going to do for his birthday, I broke down. In the past I have skirted around the party and we’ve done something bigger as a family.
Because he doesn’t have friends.
I’ve heard their comments.
“Mom, what’s wrong with him?”
“Why do you do that? You’re not my friend. Go away.”
It breaks my heart.
But he doesn’t see it that way.
He usually sees the good.
Like Maggie, his “best friend.” At least once a week he begs to go play at her house. They have known each other since they were in the toddler class in the church nursery. He is oblivious to the fact that Maggie is friends with his sister and likes playing with her, not him. If you ask him who his friends are, he will tell you that Maggie is his best friend. He then mentions his sisters, brother, our friends in Florida, and his cousins.
My heart breaks. My eyes well up with tears.
I wonder where it all went wrong.
Where I went wrong.
And I feel like a failure.
So to the little boy who captured my heart and broke it in two,
You, sweet boy, are my hero. You have beat the odds. Yes, there are obstacles, but we can get over those together. You are my big helper as you hold open doors for your family and complete strangers. You are becoming quite the gentleman, bowing and asking your sister and I to dance.
We won’t give up. We will do everything in our power to help you process the world around you well.
I promise that I won’t leave you.
I love you to the moon and back, little buddy.
If you have read this and it resonates with you, know that you are not alone. It’s hard navigating this road. Some days just suck. But it helps to know that we are in this together. You aren’t on this journey alone.
Friday 24th of September 2021
Thank you so much for sharing. This journey feels so lonely so much of the time. Our son is 5 and we struggle with very similar issues that bubble up as behavior problems. As we navigate Kindergarten, this post is so helpful to see we’re not alone.
Sunday 8th of October 2017
I just cried like a baby reading this and I never cry. I begged for 10 years for someone to see what I see. My boy needs help! He kept being diagnosed with ADHD and I knew that wasn't it. They wanted to medicate him and I knew that wouldn't help. Finally finally someone listened to me and said he has SPD. He started OT and needs speech too, but our insurance decided to act like insurance and now he's getting no help and he needs it so badly. My poor, sweet, misunderstood boy.
Thursday 9th of February 2017
Thank you a million times over for writing this. I bawled as I read this because it was as if I was reading about my own son. We have just recently had these terms thrown out at us and I have struggled ever since (privately) with it. So again I thank you. Its made me feel less alone and more hopefully for my own son.
Whitney at Beauty in the Mess
Thursday 9th of February 2017
You aren't alone, Nichole. I hate that we all feel so alone in this. Because we aren't. I remember his diagnosis was so isolating. I didn't know anyone else who struggled with SPD or Childhood Apraxia of Speech. No one understood. I will say, that now in Kindergarten, he's thriving. I didn't think it would be possible, but he's doing amazingly well. Hugs, mama. You've got this. ❤
Wednesday 7th of September 2016
I knew there was something about you that was a kindred spirit. My boy also has SPD. He's 11 now and I can tell you that it gets better. I remember when he was so little and acting out and having crazy tantrums my mom saying "just spank him. He is begging to be spanked" and I refused. I knew that there was more to it than my lack of discipline. We SPD moms need to stick together! I still have to remind myself that he is trying to use his copping mechanisms and navigate this world a little differently than the rest of us, but it gets better. Hugs
Monday 2nd of May 2016
I am in tears reading this. I can 100% relate. SPD and my sons sensory seeking is so misunderstood and people around my just see his misbehavior. When I try to explain his sensory issues I feel so overwhelmed. He screams when he is emotional because he CANT process words unless coached and we TRY SO HARD but nothing sticks as of yet.Anyways, glad I'm not alone.;)