Will He be Ok?

As I was drinking my coffee snuggled on the couch in my PJs this morning, I looked at my sweet little boy buzzing around collecting all of his wooden puzzle pieces in his upside down drum.

He noticed me watching and smiled for a split second before he went back to his “work“. I said to him, “I love you buddy.”

He replied in his broken word approximations, “ah uv too”. It still makes my heart melt.

Several months ago I wondered if I would ever hear those words from his mouth… even if they were broken and just word approximations, I longed to hear them.

Reid is four years old and has the diagnoses of ASD, focal epilepsy, apraxia, SPD, generalized disruptive behavior disorder and ADHD. Even writing all of that overwhelms me.

He had normal on time development until his seizures started right before he turned two. Then his development seemed to slow down dramatically and we started noticing things he was doing that was not typical.

Reid is spunky and is always into something he shouldn’t be. He’s got a great set of lungs and can make his presence known in the busiest of places.

He can be aggressive out of nowhere for no apparent reason.

He has given me a black eye on several occasions as well as me needing a root canal due to facial trauma (from him throwing large items at my head) and has drawn blood too many times to count.

He’s tall for his age and since he generally looks normal, many well-meaning friends and strangers offer unhelpful advice assuming it is just a discipline issue. We have had 2 1/2 years of intense behavior therapy that all has included parent training.

Plus, when I can’t sleep (which can be often), I research. I’m pretty sure I could train other people in behavior management at this point. It gets aggravating and embarrassing that we still have behavior issues.

We have taken Reid to several specialists for evaluations and had a difference in opinion on whether or not he was on the spectrum or if his behaviors were caused from a barrage of other neurological issues.

When he did receive the autism diagnosis it was delivered in an unprofessional way that left us pretty hopeless. It took me a full year before I could mutter “my son has autism” to perfect strangers we would never even see again.

Everyone who needed to know knew, but beyond that I couldn’t bear to say it out loud. I was filled with shame, guilt, and grief, somewhere between not wanting people’s pity and needing people to acknowledge how hard our lives were.

I was and l still am terrified about what this means for his future and how he will be able to learn enough to survive when we are gone. I can’t tell you how many times I’ve asked specialists if they thought Reid would be ok. If we would be ok.

Could we really survive all of this?

After a long time of frantically trying to catch Reid up to his peers as quickly as possible (I really believed that if we could get him to talk and communicate better so much of this would go away), I finally started to settle my mind and heart.

I have recognized that this is not going to be a quick sprint but more of a forever journey. I am working on letting go of my shame, guilt, and fear of the unknown.

I have a hard time understanding and explaining the shame part of it. I am not ashamed of my son, in fact he makes me more proud than I ever thought I could be. I suppose because so much of autism is unknown I feel like there must’ve been something that I ate or did or didn’t do or didn’t choose with his seizure medicine that I should have done differently.

I’m working on it and try to close my eyes and remind myself that I did the best I could with the knowledge that I had.  Everything I have done has been out of love for him.

In 2019 my focus is to be at peace and keep my head on the now.

I want to celebrate my son’s successes instead of immediately moving on to worrying about something else he “should” be doing already.

I want to fully embrace all of Reid’s endearing qualities instead of what makes him stand out as delayed or different.

He can be rough around the edges but more often than not he is happy, loving, and incredibly sweet. He’s a beautiful child and I can acknowledge that he brings joy to us and so many others.

There are days he wears me out and being his mom is totally exhausting, but I am grateful God provided us with a power team of people to support him and us. Reid is making steady progress and although he is still far behind his peers I see light in the darkness.

I am working to change my view on what it means to be “ok.”

Reid is happy, safe, loving, and making progress every day. The aggressive behavior has lessened and I am so grateful for the gains he has made in behavior and skills.

Every day I am going to try to take time to laugh and look for the joy even on the wildest days. When I slow down and live in the now I am able to see so much beauty in the chaos.

I can quiet the fear inside me enough to see that we really are and will continue to be ok.

 Written by, Jenn Fazzone Bio

I’m a mom of two beautiful boys, Nolan (6) and Reid (4) and have been married to Scott for 11 years.  I work full-time as a K-2 teacher and spend my evenings and weekends bouncing from therapies to being a hockey mom. Autism and Reid are teaching me everyday about patience and unconditional love.

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