What I Want People To Know About Raising A Child With Special Needs

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What I Want People To Know About Raising A Child With Special Needs

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At nine months old, I knew there was something different about Zachary. At 17 months old, I took it upon myself to get him started in feeding therapy, and then shortly after early intervention. At that early point in Zachary’s life everyone tells you, “He is fine” or “He is a boy, they take longer to do certain things” and all that extra fluff.  As a nurse I knew differently, and as a mom, I knew in my heart.

Zachary will be 4-years-old in April, which also means I have been a mom for that long as well! However, my journey with autism and Zachary is shorter; he was diagnosed a little after his second birthday. So, by no means am I veteran mom in the world of special needs. However, I do like to think I know a thing or two.

My family and I have made this life together to rest on top of four pillars. It is our foundation and we all grow, learn, and love from that foundation.

1. Breathe

It’s funny how you are always told to breathe. During labor you are told to breathe and then this precious child is delivered into the world and we wait to hear their first breath.

Now you have received your child’s diagnosis of autism.

Breathe. Cry. Breathe again. Cry some more. Do whatever you need to do once you get a diagnosis for your child. Grieve for however long or whatever way you need to. There are still times in this journey that I’m grieving in some sort of way.

We have a neurotypical 2-year-old son too. I see this child hitting all his milestones flawlessly, and sometimes I can’t celebrate those special moments because I’m grieving about Zachary. Not because his life or our life is sad, but because life for him will always be harder. I breathe through those moments.

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2. However hard autism is for me, it is harder for my son.

He is non-verbal, and has a hard time communicating his needs. Here I am as his mother, getting frustrated that I have to guess what he is trying to communicate in a non-verbal way. As I’m writing this, I’m embarrassed to have gotten upset about that. I can’t even imagine how frustrating it must be for Zachary not to be able to get his needs across.

That meltdown that made me lose the last ounce of patience I had; I wasn’t the one that was actually going through it.  I wasn’t over-tired, over-stimulated, sensory-seeking, and frustrated that I couldn’t communicate any of that. Zachary is going through all of this and all at once.

Zachary has autism. I don’t.

3. Everything is a process.

Just know that every part of this journey is a process. It’s a process to get your child evaluated. It’s a process to be put on a waitlist and then finally receive services. Watching your child learn and grow is a process. Go with the process; it makes it easier on you.

A mother recently asked me advice about feeding therapy. As a proud mom, Zachary is a graduate of feeding therapy. However, my advice to that mom is that it’s a process. Zachary did about two years of feeding therapy. He wouldn’t progress from stage 1 baby food. At 17 months, it became a behavioral issue, where he would see food, gag, and make himself sick. Now my child can go to a birthday party and eat pizza and cake with all the other kids. To this day, when I see him sitting at the table with us eating dinner together, my heart could burst from joy.

The point is though, that we didn’t get here without going through this process.

4. Enjoy being a parent to your child.

Sometimes I feel like I’m on the boat with Willy Wonka, on the chocolate river in the beginning of the tour of his factory. They are going through that dark tunnel, and things start flashing everywhere. Honestly, it’s a terrifying scene.

I feel like I go through this dark tunnel of autism, and different things for Zachary flash through this tunnel. ABA, speech, OT, PT, what vitamins should he take, should he be on a special diet, and so many other autism-related things.

I miss out on being a parent. I miss out on being in the moment.  It’s so hard to get out of that tunnel. You want to do everything for your child.

Then there are moments where our two children are really playing together and laughing together. Those are moments that I crave for. I refuse to miss those moments anymore, because I’m preoccupied if I made Zachary’s appointment for his millionth evaluation.

My day ends where it all began. Breathing.  I listen to Zachary breathe while he sleeps. I’m in the moment. His chest rises and then falls again.  Then I breathe, as well, and wonder what he dreams about.