ASD

The “A” Word

If we are Facebook friends, if you’ve read my blog or know me personally, you know the journey we are on with our middle child – Jackson. For a quick recap (if that’s even possible for me), our J is delayed. He’s in a special education preschool and while we have seen some major strides just in the last few months, we have been on the path toward a diagnosis for months now. And now we finally have one.

Since January, J’s journey has revolved around assessments to into the school, paper work, tears, frustration, referrals to the Development and Behavioral Department at Children’s Mercy, more paper work, patience and whole lot of grace. We were on the waiting list for five months for the official assessment.

Well, the wait is over. J’s assessment with Children’s Mercy confirmed what I have known in my heart, my mommy gut for months. J is autistic. There I said. That “A” word that some people treat like it’s flipping Voldemort and others say it so often that if they were playing a drinking game and did a shot for every time they said “autism” – (excuse the language) but they would be drunk AF.

It’s not scary. Autism, Autism, Autism. See that’s not scary at all, is it?

I was in a bit of lull, probably the gloomiest one I have been in a while, days before the diagnosis. It was probably a combination of things but I was fatigued. I was not ready for our long day. The morning of the diagnosis, my anxiety went into overdrive and my physical symptoms were in full swing. I had to get it out, so I “ugly cried” for five minutes on the way to work. I know I am hard on myself and so I should have just let myself cry as much as I wanted. But, as mamas know, sometimes you just don’t have the time to break down like you want. So five minutes it was and surprisingly, it was enough.

My husband was able to met me at the doctor’s office. I took a long lunch since the hospital was only 10 minutes from my work. He came from home, a good 30-minute drive.

I admitted to the doctor I was anxious as if my rubbing my thighs and knees with my hands wasn’t obvious enough. My husband did what he does best in these situations – he impersonated a rock. And while I laugh about it, he is my opposite and my balance.

The doctor was coy (insert eye roll) and we started from the beginning and went over everything. Responses that J gave the doctor that he found “interesting,” and overall scores of specific assessment filled the air. But the word Autism was tip-toed around. I almost felt like the doctor was doing this on purpose after about 20 minutes in. So I decided to play it cool, throw on a bubbly smile and breathe deep.

Every thing we gave the doctor was helpful in J’s diagnosis, which he admitted was more difficult considering that J has a handful of the Autism red flags. His significant speech and cognitive delay (which is 18 months behind) and his fine and gross motor skills ranging closer to an early three-year-old (that a boy pushing four) on top of his repetitive behavior with speech, rocking, jumping and humming and his attention issues (he tested above the threshold for ADHD) are enough of a concern to diagnose him.

And I knew it. I knew it wasn’t just “second-child syndrome,” though I hoped and prayed for it to be. I politely went along with family and friends as they assured that J would catch up on his own. Something told me he wouldn’t.

I hope I don’t come off as selfish when I say that I’ve decided no matter what they “label” or diagnose our child with now or in the future, we will do what we can to make him more comfortable in his surroundings. However, I’m not wrapping him in bubble wrap and staying home every single night. I want our children to be able to be fully functioning adults some day with a sense of compassion for all walks of life. I want them to be open-minded and remember that there are more than two sides to every story and there really isn’t a right or wrong in many of life’s situations – it’s all gray.

For autism spectrum disorder, what I am reading so far is all over the place. If you have met one Autistic person, that’s all you have met. Each person has their own unique set of challenges and concerns. I am barely skimming the surface and trying not to overload myself just a day into the diagnosis but I can already tell that a plethora of research is out there. Nothing is set in stone as to why one in 64 kids are being diagnosed with Autism.

Many things I have skimmed over today say it’s a combination of environmental (such as lack of oxygen in the womb) and genetics. Blood work is also on the list of things to do but the doctor said there is no real rush. He doesn’t know me well … yet. We will be doing the blood work for the genetic testing the doctor asked for soon. I am just taking this one day at a time and I figure if I can do a little bit of research each day then it won’t be so overwhelming. The trick is not letting my journalist brain take over and I flood my mind with all kinds of information.

For a quick overview: Autism is broken down into three categories, though just a day in, I can see some flaws with this system. Level 1- requiring support, Level 2- requiring substantial support and Level 3 – requiring very substantial support. I hate to say it, but putting “very” in front of something, though it’s meant for emphasis, as a writer I know that it is just a lazy word. But then again, simplify the categories may be beneficial. J is at a Level 2 right now, needing substantial support. Once I know exactly what that means, I’ll share more.

The next step is to implement ABA Therapy. In a nutshell, ABA therapy is a form of behavioral therapy. ABA stands for applied behavioral analysis. I don’t know much about what is actually done during the therapy sessions but the overall consensus is that it is really beneficial for those with Autism. So I’m on board. Let’s do this. It’s the only thing they want to add to J’s plate as he already receives occupational therapy, physical therapy and speech at his preschool. Unfortunately, he can’t have ABA therapy at his preschool as he is only there for half-days, four days a week and there is no way to incorporate it in. Can you imagine having to cram in another therapy on top of three, four days a week? No wonder our boy is so exhausted some days. But I know we can do it. Establishing a routine or as close as we can get is important and I know we can do it.

Insurance is the next thing to go over and, as of right now, my understanding is that the ABA therapy will be covered. Fingers and toes crossed.

My husband is still impersonating a happy rock. He agrees with what I say about it and changes the subject. That’s typical and it doesn’t upset me. I know he has my back. I’m the researcher, the fact finder, the keeper of stats. I can provide enough emotional support for the both of us most days and he is the pillar, the voice of realism, common sense and simplicity. He wants things in life to be simple and drama free. I do, too, I just admit it just doesn’t always work out that way. The average reading level is eighth grade so I remind myself that if I can break it down to that reading level, then I know I have grasped the material enough to educate and create awareness.

But I admit, ASD is a whole new ballgame and I am Billy Madison – “Back to School” I go. I don’t think ASD parents have to be experts but I do feel like they should know enough to advocate for their child. I shared the news with a Facebook Live Video and it was well-received. I’m thinking the more I dive into this, the videos I will create.

I want them to be different, however. Many videos and blogs talk about the difficulties and while it’s important to be authentic, I want to share the positives. We celebrate every tiny new accomplishment with J, why not take everyone else with us? If it helps a parent muster up the courage to get their child assessed, then I know I am doing what God put me on this Earth to do (or at least I think that’s one reason why I am here).

For parents on the fence, I know exactly how you feel. We brushed this off as just a delay for most of J’s life so far. All I can say is pray about it and go with your gut. Family and friends, though trying to be helpful, will try to steer you away from it. Or they may encourage it. I had a very different outlook on Autism. I pegged all Autism into the stereotypical things we characterize with it – little to no eye contact, no desire to be social, severe ticks, rocking, humming, banging head on the floor or walls.

Our J makes eye contact, loves to be social but can’t carry a conversation beyond “Hi.” If you ask him his name, he won’t respond. He actually just learned to say his name a month ago. J rocks, hums and jumps but thankfully it’s not too disruptive and there is no self-harm involved. He does have the inattentiveness that is also common with Autism but it’s something we are going to monitor. He’s mentally two so the doctor says that is too young to diagnose with ADHD.

The more I research, the more I will share in videos and blogs. We can either use social media to harm others or build people up. The tools are right in front of me and I think the latter is a better use of such platforms. It’s the easiest and cheapest way to educate and advocate for any cause – and I think Autism is ours, as a family.

All in all, I know this could be much worse. I am thankful that God led us down this path and he obviously knew this was what J needs to succeed in life. And succeed and thrive, he will. I know it.

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