What they don’t see

The creation of this post started a little differently than the others. The title was easy, as it has become a statement I’ve found myself thinking more often lately as I observe others interacting with Caleb.

In my attempt to describe what this means I went online to find an article I read recently about the challenges of “high functioning” autism. The article was so relatable as it talked about having a child who doesn’t “look” disabled and the internal conflict of whether or not to explain certain behaviors. Do you just blurt out “he’s autistic” when kids his age are trying to hold conversations that he can’t have? Or when parents ask the question “how old is he?” Not because they want to know but because they want to figure out why he’s socially awkward. I couldn’t find the article that spoke to my soul but in scrolling through my Facebook one morning I saw this caption “People think we are over protective, over bearing and causing the problem. Yet they don’t know what we know. They don’t see what we see. #autism”

The caption alone had me yell out “Yaaaassss!” and as I read the blog attached it felt like I was reading my own story. My fellow autism mom talked about how other parents looked at her when she took her kiddos to the park to play. The way she hovered and kept close. She went on about watching kids and parents laugh at and/or walk away from her child leaving him isolated. The looks of “something’s wrong with that kid” but they can’t quiet understand it because he “looks normal”. Autism doesn’t have a look. Sometimes its the awkward elephant in the room attached to the “normal” looking devilishly handsome young boy who may want to play but doesn’t speak or doesn’t want you too too close just close enough. Autism may be hand flapping or random monologues from a cartoon he’s memorized. Autism peaks out when other 3 year olds are talking about trucks but your 3 year old can identify the difference between a bulldozers, excavators, cement truck and a crane.

I, too, am the mother that hovers when other kids are around. No it’s not because I’m over protective, it’s actually for the safety of the child. Caleb is not above pushing, pulling, hitting, hugging, grabbing any little person in his reach and the fact of the matter is if I’m not there intervene then you’d probably wish I was and then we may have a bigger problem.

Last weekend Caleb’s Barber, who we’ve been going to for a year, commented on how amazing he’s been doing. Until recently Caleb used to sit in my lap for his haircuts and he would scream at the sight of the cape. Sometimes he would cry through the entire appointment, other times he’d just fuss and squirm. Mr. O has always been consistent and patient. For two weeks now, Caleb has been sitting on his own in a booster seat and this past weekend he put on the cape, not a tear or hesitation. Just my big boy in the barber’s chair getting his haircut with his iPad. When Mr. O commented on his progress he said “what did they say he had?” I reminded him it was autism. He shared that he had a family member who was autistic and she seemed more severe than Caleb. THIS was one of those times that I thought to myself “it’s all the things you don’t see”.

Although Caleb has grown A LOT in the last year there is so much work still to be done. The fact is he has to actively work on his development. There are hours spent on behavioral and speech therapy 5 days a week, reinforcement at school and at home; everything is intentional as we work on his developmental delay and then there’s the managing of his SPD (sensory processing disorder).

What they don’t see is how exhausting and frustrating it can be for him. What they don’t see is the restless nights because his brain can be so overloaded he can’t seem to shut it off. What they don’t see is the meltdowns on days he has therapy and school because he’s working so hard that it can be overwhelming by the end of the day and he just needs to release. What they don’t see is a mother’s heartbreak while he fights through the emotions or her bruises, scars and busted lip from the really hard days.

Caleb’s chances of living a normal high functioning life with autism are great. Early intervention has been the key. He’s super smart and is the most beautiful boy in the world (in my humble opinion) so I pray he is successful and has a wonderful family in his future but the reality is that people won’t see how hard he worked to get there. My hope is that encounters more kindness than not along the way but in the meantime I will continue to advocate (and hover) because there’s so much that people just don’t see.

**For those of you interested and don’t know much about Autism Spectrum Disorder I’ve attached a really good link on the 3 levels of autism. Caleb’s official diagnosis was Moderate Level 2**

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