Autism Awareness Month

IMG_2038I think Cooper falls in a really weird place on the autism spectrum. In some ways he is severe. He doesn’t speak. He has zero self-care.  And hardest of all he has no self-awareness. Cooper doesn’t know he is autistic. He doesn’t know he is different. He doesn’t know that he has no friends…He most likely doesn’t know what a friend is.

But on the opposite side he isn’t violent. He isn’t mean. He is easy to care for. He smiles and laughs and requests hugs and kisses. And I am so thankful for these traits. He is sweet and adorable.

But, nevertheless, we are in a really weird spot on the spectrum.

I was waiting at Fraser yesterday and I was observing a little boy playing in the waiting room. Every so often he would ask his mom a question. He seemed so normal. He was sitting still. He was playing and he was talking. MIND BLOWN. Then he said to his mom, ‘remember when we came here last year mom and they said I learned different?’ And this mom didn’t even look up. She was on her phone. The little boy went onto say, ‘am I really different mom? I don’t feel different.’ I could not stop staring. I wanted to shake this mom and say ‘Pay attention to your damn child!! He cares that he is autistic. Talk to him about it. Please!!’ But she never looked up.

I am jealous of the parents that have higher functioning autistic kids. That’s a riot right! I am no longer jealous of the parents with ‘normal’ kids. I am now jealous of the autistic kids…but the more typical ones. The children that talk. Or play. Or try. Or most of all the ones that know they have a disability.

I feel like I was robbed yet again.

So, on this 5th year of our autism awareness journey I am mostly just pissed.

11058760_1083232848353841_1550779738546489413_nLast year we chose to go on an Autism Walk. It should have been a nice event. We walked around this beautiful lake. We invited Cooper’s grandparents. It was a beautiful day. Except that our autistic son did not get the agenda for the day. Or the purpose. Nor did he want to be there.

So, out of the 1000+ people participating in the event…we once again had the most autistic child there. He didn’t participate. He didn’t walk. He didn’t ride in the stroller. What he did do was run and dart and roll and scream and throw. He made the event miserable for Jamie and I. It was a 5K and one of us carried Cooper the whole time. We ended up quitting early and fighting our way back to the car and vowing to never do it again. Like most events we participate in with Cooper it ended up being a nightmare.

It almost makes me chuckle. I have the only autistic kid that can’t participate in the autism walk.

There is no real purpose of this post I guess. No bigger deeper meaning. I’m just at a mad point in the journey. I have been posting pictures on Facebook that show what autism looks like to me. It’s been emotional and uplifting and I love that I am spreading awareness, but pictures don’t show what it feels like to be an autism parent.

There are pictures of objects lined up, beds torn apart and messes that Cooper has made. But there are no pictures of what it feels like to have a child that doesn’t speak to you. Or play with you. Or live in your world.

Pictures cannot show the pain I feel in my stomach when I hear about a parent registering their child for kindergarten. Or just seeing the kindergarten pamphlet in my mailbox. Or having a doctor ask me if Cooper has any loose teeth…knowing that I have no idea and he would never tell me anyways. There will be no Tooth Fairy. There will be no magic for us.  Or when I hear about a child joining a sport. Or going to birthday party. Or having play dates. Or saying the cutest things.

At this point we still have none of it. And it used to be really heartbreaking. Now it’s just an empty spot.

So, on this Autism Awareness month, I have to hold back saying what I really think and feel because I don’t know how to be honest about it. I can try to tell people about the loneliness….I can even share pictures of the heartbreak….but I have absolutely no way to truly describe what it feels like to be the parent of a nonverbal autistic child. It’s too hard.




14 thoughts on “Autism Awareness Month

  1. I’m going to be honest with you. And this is coming from a fellow mother of an autistic child. Don’t fall into the trap of high and low functioning. There isn’t such a thing. Yes we hear these words day in day out and it’s like a slap to our face. A knife through our heart. But your kid and mine, they don’t talk but they do think. They don’t misbehave, but they do love. And love us in the truest and purest form there is. Never underestimate. I may be in la la land. I may have a hope that I probably will never reach, but it’s there. And that’s what we have. And yes it’s tough and yes it’s heartbreaking and yes I do know how it feels to see the other autistic kids that talk and have friends etc etc etc I was there in that same place you were. And I moved on. And it’s been great once I saw the true potential my son has. You will too. With time…

    • I completely agree… Hi and low functioning it’s all relative. Many autistics write about how in some things in life they have a hard time processing things and dealing with day-to-day activities and then other days they do a lot better. I like how you mention living in hope. My son was nonverbal for a long time and that’s all I hung onto. You have to stay positive and this is not an easy road and you tackle one thing and something else happens. But in the end hope is all we got:)

  2. The way I described the journey, and we are each on a unique one, was comparing it to the book/film The Road or to a show like The Walking Dead. That it sometimes felt post-apocalyptic. You move from thing to thing surviving….feeling sort of hollowed out. There were lots of folks in the community who could understand. Outside? Not so much.

      • That’s a hard place to be. And I want to be honest, at least with myself…a lot of us are not on a journey of change…where we have a child who will “graduate” to something that is drastically different from year to year. Instead we measure successes in terms of inchstones, and we do what we can to distance ourselves from those who would be considered “normal”, simply because the pains of comparison are too great.

        That isn’t to say that joy can’t be found, it can. That isn’t to say that hope doesn’t exist, it does. The truth is that the real battle is internal. It is one of acceptance that this is my life, and how can I live it that will work out best for my typical son and my disabled son? And can I find a way to have a little life for me too?

        That was my thought process for a long long time, and I still struggle here, six plus years in. It’s the journey. It’s the Road.

        You’re doing just fine…IMHO. 😉

  3. We have the same child, I swear! I say this to my husband about once a week! I believe that if my son could talk, he would be fine…ugh!

    Sent from my iPhone


  4. I remember when I would sit in parent training classes and listen to other parents sharing about their kids and I was so full of envy. My son could not talk. I had no idea if he would ever. Then there’s all the times we would go for different assessments and he would empty every been filled with toys and dump them all over the assessment room. I would then be told he had no play skills and people would talk around me as if he didn’t understand thing was happening. I’m mentioning this to you because I remember how desperate and frustrated I felt. I couldn’t even look at my son’s baby pictures because I would just cry. This wasn’t what I wanted for him and what I didn’t want this for our family.

    My son is nearly 9 and things of changed a lot. There is no magic no such thing that I could put my finger on except to say a lot of hard work on his part and meeting professions that “got him” which motivated him. What I had to really learn about the was the whole sensory regulation piece. Is just so huge. Being in very busy places lots of stimuli would turn him upside down and he tells me now it was just too hard for him. Over the years he has slowly built resistance but at times it just is still too much. So after reading your post about Cooper I think one of the hard things is trying to figure out how to regulate him.

    The other thing is don’t get caught up in severe high low etc of spectrum because my son has become more functioning but he can still fall apart. People will assume that he’s high functioning about everything and he is not.

    I am worried for you that you feel hollow inside. Hugs take care of yourself.

  5. We’re going through the same feelings with our 3 year old. Your last paragraph. Exactly, spot on. I think your post has plenty of purpose. There are people feeling the same way.

    Oh, the best thing for our son for walks is a 3 wheel scooter. We started with him just standing on it and our hand on our son’s back lightly pushing him along. The wheels roll so smoothly and we just walk along at the pace we like. Plus with a scooter you tend to travel in a straight line. Perfect, no random change of direction! 🙂

    Now he has mastered it and my wife and I are often left jogging after him. But the scooter is great because if our Son gets tired he can just stand on it and be pushed (running & pushing him is fun, he loves speeding along!). Plus scooters are easy to take anywhere into shopping centres and supermarkets (parent holding it I mean).

    Love your blog. 🙂

  6. I am the mother of a 5 year old nonverbal autistic boy. I read a lot of your posts. You are spot on with the way I feel every single day. Is Cooper hyper? I don’t know if this will make you feel any better but my son is very hyper, always moving around, NEVER sits still. I know this sounds crazy but I wish my son was a nonverbal autistic who wasn’t hyper!

  7. I stumbled upon your blog and please know you are not alone in your journey. We see you. If you haven’t looked into the blog Ido in Autismland, please do! He is a nonverbal that found his voice thru RPM and blogs about it extensively. It is a game changer for 1000’s of non-verbals. Your son is in there and just needs help getting his voice out. He can do this. This will also restore your hope and faith. Nonverbals need our help getting their voices out. Go Mama! You got this!

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