Navigating the ASD Waters 

I admit it, willingly. I am an open book.  I’m a TMI woman (for me that means random goofiness with a hint of inappropriateness) and most days I own up to it with an odd sense of pride. But I will say, this past month has been challenging.

We are hitting the one month since J was diagnosed with ASD and global development delay and speech impairment. I made a personal goal for myself to blog three times a week when I first started this blog but, per the usual, I set my bar too high for myself. I mean, some weeks I could do it but I’m one of those that prefers to let the creativity flow naturally.

Sometimes I have to force myself into a creative cycle at work and so when it comes to personal work, I don’t want to force anything. Some weeks I will have tons I feel like sharing and sometimes like this month, I don’t know where to begin.

When it come to J’s diagnosis,  I am so thankful we have a direction but the more I read and educate myself, the more questions and uncertainties I have. But I think it’s normal and expected to feel this way. Millions walk the special needs path but our journey with J is very much our own. The things we do have in common with our special needs families is the bond of perseverance, strength, hope and love.

On the paperwork side of things, 25 pages of medical jargon were sent to our insurance, which they accepted and approved. Getting all the proper forms filled out and faxed was more stressful that I thought, but it was done and approved. Praise God for his gentle reminders to just breathe and be still. J was put on a waiting list for a ABA therapist last week. The case worker our insurance assigned to us told me we only had 24 hours to find a therapist — lovely, right? Well, actually we did it. We freaking did it. Well, she did it through her contacts. I probably shouldn’t have scoffed at her plan to find him someone so soon — she showed me, and she was nice about it, too. I wasn’t rude to her by any means but in my head I didn’t think it was possible. I made a few phone calls and while the therapist did the services in the home, which is a must with our crazy schedules, they did not take our insurance.

Every door I tried to open lead to a wall, I wasn’t getting anywhere. A few tears and some deep breaths later, I was determined to hit the ground running the next day. I was going to call our caseworker and form TEAM JAR (our son’s initials) and get this in the bag by 5 p.m.

By 10 a.m., I could feel the tension in my shoulders releasing. Our case worker had found someone to come into our home and takes our insurance. She’s also HIPAA compliant. Check, check and check. No need for me to hound her on the proper paperwork for insurance, she’s already a pro at it. Our insurance basically needs an education plan sent to them every six months to see how J is doing in his behavioral therapy.

His physical, occupational and speech is covered in his free special school — praise the Lord — and all this meant that adding one more therapy would change our family structure but not exactly tip it on its head. His evaluation will be in January; we have until Valentine’s Day or an extension will need to be filed. Our case worker assures this is all going to go smoothly — I trust her a little bit more now.  Once he’s assessed we will know how many hours a week of behavioral therapy he will need. I’m relieved it starts in January with the holidays in full-swing.

So while I was waiting for all this to come together with the insurance,  I have spent most of my free time this month reading about J’s diagnosis  (ASD, level 2, with global development delay and speech impairment) instead of personally writing. The list of books to check out at the library continues to grow.

I’ve been schooling myself on ASD and I’ve only touched the tip of the iceberg. Granted, it all needs to be taken with a grain of salt. What works for one child may not work for J but I’m willing to try.

To start, we are trying a weighted blanket. Children’s mercy sent us the lining of one and we filled it with old sheets rolled up; the total weight is a small percentage of his body weight (the amount was recommended by his OT).

Next, finding sensory friendly activities (thank you Pinterest) and keeping track of his sensory issues and repetitiveness so we can identify triggers.

And third, finding a decent way to share with family and friends (especially over the holiday breaks coming up). Practice makes perfect, maybe?

Our oldest knows, and we have found great resources on what to say and what not to say. We shared how J’s brain just processes sights, sounds, etc. differently. And how J may take longer to understand a request or respond so we must be kind and patient. I didn’t use the word special for fear that our other two will think they are getting the short stick. H is doing decent so far. It’s compassion we are teaching, even for the silent conditions and illnesses.

What was interesting over the long Thanksgiving weekend was that I found myself telling complete strangers with ease, more freely than to family. At first, I wondered if it was as if I was searching for some sort of sympathy but that lie was short-lived (thank you self-awareness). I then remembered, God made me one of those who has to talk things out. Writing is therapeutic for me, yes, but for someone who is caught up in her own thoughts often, sharing them to a listening ear feels good, too.

Maybe this stranger will have a nugget of perspective waiting for me. Or maybe this stranger will have a cousin, brother or sister on the spectrum – heck, maybe they are on the spectrum. Or maybe not. What if I share J’s story and I open their mind a little bit? What if this stranger gains a whole new outlook and decides to become an activist? Okay, maybe not. But I don’t think we should underestimate our ability to change things with something small.

And so while I waited for an hour and a half (yes, you read that correctly) to snag a small trampoline for J to use inside for a ridiculously cheap price Thanksgiving night, I shared with strangers a little about why this trampoline means so much. It’s going to save my furniture from J’s repetitive jumping, to be honest, but mainly it’s to allow him to jump and rock, and release his extra energy somewhere safe. Safe – I didn’t think that word could have a stronger presence, meaning to me as a parent, but I think it’s starting.

So dear bargain-hunter at Target, dear Price Chopper employee scanning my delicious birthday cake-flavored Oreos, dear anitque-lover, penny-pincher waiting in line with me at the local thrift store, be prepared for an earful. I’m sure once the “newness” wears off , I’ll be less apt to share with complete strangers. But maybe, just maybe, God will use me to drop a polite but awakening truth bomb that will ignite a fire in someone’s belly. Maybe I’ll give some perspective to someone.Yeah … maybe.



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