Autism Awareness Month is every day for me

April is National Autism Awareness month and while I celebrate Autism Awareness every day, I thought it would be nice to share with all of you what Autism means to my family.

My son, Jamie, is almost 16 years old. He was born 5.5 weeks early and was pretty delayed from the start. Our pediatrician was my pediatrician when I was a kid and while I’m sure he was up on his training, he was also ready for retirement. Luckily, he spotted something that wasn’t quite right within months of our son’s birth and sent us off for testing at the major children’s hospital in our area.

We spent 4 days in the hospital that trip, on what they liked to call “observation” which is hospital speak for Utter Hell. There is no emergency. There is no real reason to be there other than they aren’t sure what’s going on with you so they’re using it as a teaching moment for their interns, and you’re supposedly getting faster testing and care because you’re in their face every morning for rounds.

Waking up to a room full of what look like prepubescent children who think they know more about your kid than you do because they have a medical degree is not super fun. Especially when you’ve not even had your coffee yet. I digress.

The first diagnosis

Jamie at birth, 5.5 weeks early. 7 lbs 14 oz, 20.5″ long.

We went on the merry go round of testing to find out that Jamie has Cerebral Palsy and hypothyroidism. We were then on the neurology program and every 6 months we would check in with our neurologist. We moved to Kentucky when Jamie was 6 and signed up for a brand new doctor. Normally, I would hate change, but when your child has special needs, it’s sometimes nice to get a second opinion. Okay, this was more like a fourth opinion as we had already seen every specialty we could think of. None of our doctors were willing to diagnose Jamie with autism, even though he had several behaviors that indicated, at least to me, that he was on the spectrum.

At the time, I think it would have killed us to find out our child had Autism. We would ask with bated breath and when they would say, “No, he doesn’t have autism. He’ll let you hold him. He looks into your eyes.” we would release that big sigh of relief and go on about our day because, thank GOD, he doesn’t have autism!

Little did we know, we would relish this diagnosis as Jamie got older. What happens when you have a blanket diagnosis like CP is that your insurance won’t pay for the therapies your child actually needs. We were told our insurance would pay for 100 therapies a year. I’m literally LOLing over here because we ALL know that is not nearly enough. That’s like 6 months of therapy, and then you just don’t get any after that until the calendar rolls over to January again. Happy New Year and oh yeah, here are another 6 months of therapies!

The second diagnosis

Jamie, 10 years old.

When Jamie was 10 and we were at his yearly neurology check-up appointment, I asked again. “Does Jamie have autism. Look at him! He’s stimming. He’s rocking and flapping his hands. He’s nonverbal.” The doctor looked at him and said, “Yeah, he’s probably on the spectrum somewhere.” very dismissively. I demanded that he put that in Jamie’s chart as a diagnosis so that we could move on and get more therapies.

Jamie’s behavioral aspects are that he sometimes hits things. Not hard, and not to injure anyone but he does end up splitting his knuckles sometimes if he hits a brick wall or a corner of a cupboard. He sort of “taps” it but a little harder than I would like. He’s just trying to get attention and probably some feedback into his hands.

He screams loudly when he’s happy! Our neighbors are probably wondering what in the world is going on in our house. Sometimes he sounds like one of those annoying birds (forgive me if you have one), the cockatoo. He will scream loudly when we walk into a restaurant, a grocery store, and his grandmother’s house – effectively scaring all of the older ladies into clutching their pearls. He screams so loudly and high-pitched that we call it the brown note. It makes the handicap handrails in the bathrooms vibrate. It’ll bring you to your knees. And maybe poop your pants.

Autism in our home means that Jamie is nonverbal. He uses an iPad and signing to communicate. He doesn’t do it well so it’s a struggle but as his mom, I usually know what he wants or needs. He’s fairly decent at choosing things or saying yes to a question so we stick with that kind of communication.

Jamie has some behaviors that are clearly autistic. But as all moms of kids with special needs know, he is more than his diagnoses.

Jamie and Dad on a bike ride.

Autism has stunted his development but not his big heart

Jamie loves Dr. Seuss books, Laurie Berkner music, and The Backyardigans. Autism has kept him at a toddler’s level. His younger sister bypassed him years ago in the development department. Jamie is still into preschool activities and we listen to the same music, read the same books, and watch the same movies over and over every day. It’s what makes him happy. What kind of life is it if you aren’t doing the things you love?

Jamie is unable to do any self-care so every aspect of his life is overseen by one of us. Toileting, eating, getting dressed, brushing his teeth, taking his meds, fixing his meals, etc. He cannot be alone for any length of time and needs constant supervision. He’s not a loper simply because he can’t open the front door and get out on his own. He is a fall risk.

My husband and I get up with him two or three times a night to use the toilet because if we don’t, he wets the bed. During the day he stays dry for the most part with occasional accidents, but we take him to the bathroom just about every 30-45 minutes. Do you know what it’s like to take a grown-sized boy to the bathroom that often? You can’t focus for very long before you’re needing to do another bathroom run for him. Throw in your own potty trips and half your day is spent in the bathroom.

Because we get up so often in the night and it takes a while to fall back to sleep, we are sleep-deprived often. I laugh when my physician asks me if I’m sleeping well. Because, no. My husband and I are like zombie parents. It’s been like this since the day Jamie was born. It’s like having a newborn baby for 16 years. Constant. Supervision. Nighttime toileting. We require naps some days to make it through.

Jamie and me at church.

And while I hate focusing on the bad side of Jamie’s disabilities it is a necessary evil. Telling our caseworker all of this and more about our daily life with Jamie is what helps us pay for care for him. Without our weekend and summertime PCA, I would go crazy. I come home from work every day to be here with him and his sister when they’re home from school. But we get help on the weekends so my husband and I can either get work done around the house, spend time together, or spend time with his sister one-on-one. And then in the summer when he’s out of school, we have a daily PCA so that I can work a bit.

He’s a happy Big Guy!

I don’t like to focus on what he can’t do. I like to talk about what Jamie can do. He brightens the room with his smile and enthusiasm. He laughs and his eyes crinkle up. He loves his sister. Jamie gives the best hugs and snuggles. He enjoys going for bike rides and has even learned to pedal on his own. He is a lot of fun to be with and likes to be outside in his walker or stroller. Jamie picks up on other people’s emotions quite easily. He doesn’t like it when anyone is sad. Jamie is pure love.

And so, that’s what autism is like in our house. Jamie has a happy life and brings so much joy to those around him. He gets to go on lots of fun adventures with us. It may not look like autism in your house, but that’s what makes life so interesting.

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