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  • Writer's pictureHeidi Renee

Sunday Night Raw


Sensory Integration Dysfunction, also called SID, is our most recent enemy. AJ has had a remarkably bad weekend, full of sensory overload. I haven't seen him like this since the fun hotel kiddie pool last summer. Although, this weekend was far worse.


The worse thing about it, is there is nothing we can do. We all know Jer and I don't play that game. Very Well. Ok, not at ALL. Nothing to do but sit and wait until he calms himself. Sometimes it is difficult to gauge whether its sensory or a typical tantrum. Then you feel like the worse parent ever because you got it all wrong. It isn't a tantrum. He can't stop.


The trigger? Our vacuum. He's always enjoyed the vacuum. Sitting next to it, the vibration, and even the sound. Yesterday turning it off caused a full on sensory meltdown. I mean screaming at the top of his lungs with no end in sight. So today, we devised a strategy where I would play with AJ in his room while Dad vacuumed. I knew he could hear the vacuum from his room, but we continued to play. If you think I'm going to take off his coil every time we vacuum, you're crazy. Usually "No" works, but given yesterday's episode, we thought a safe distance would be good. I thought we should read a few books, so I went in the living room to grab his new reading bench and an assortment of books. He merely saw the vacuum. When we returned to his room his meltdown had started. Yep, dumb move Mom.


I tried to keep reading to him, keep him engaged and he.was.done. I'd say I tried for 15 minutes before I had to let him be. I took off his implant and put him to bed. He ended up passing out in his bed about 20 minutes later. After banging his head against the mattress-which he still does now and then to fall asleep.


He slept for three hours. He's been taking unexpected naps a lot. Something is going on. Growing, I suspect. He's been eating and drinking like a horse. Seriously. I don't know where he puts it all. He's still teething. The child is almost 4. Enough with the teething! Its also continuing to hinder his biting and chewing, which is bugging me. His molars are ready to pop at any second. But that's the thing-they don't!


He had his left ear testing last week. All went well. They will submit to insurance after we meet the surgeon in late March. Oh, but there's a catch. One we didn't know about. I'll get to that.


AJ also had his speech evaluation last week-on the same day as his left ear testing. It went extremely well. We are sitting tight until he sees the world renowned SLP this week. Once we get her feedback, we'll be devising a plan of action. His PT sat in with our new SLP to view his posture, etc. while eating. 30 seconds later she had Thera-band around his feet and knees to kick in his butt muscles and had his chair tipped forward. Oh, and I'm banding him at home and tipping his chair with phone books under the two back chair legs. He's going to need something else to sit in, I can tell already. I'm hoping I can get them both to stop by sometime soon to look at our set-up and how we can adapt it to his needs. I do know that they want to do VitalStim on AJ. Great, now my kid's getting zapped. It's really not that big a deal, its just one.more.thing.


Oh, and his eyeballs. Earlier this week AJ's teacher sent home an "Ocular Report for Known or Suspected Visual Impairment" for his ophthalmologist to fill out. I freaked out. All this time we had been talking about doing certain things to help AJ visually attend better to things (example: placing a bright color of construction paper over the left side of a book so he can focus on the right side). Never thinking it was because they were suspect of an actual visual impairment. One.more.thing.


We had his appointment last week and his ophthalmologist took a look at his eyes. 9-months post-surgery and they still look good. The alignment seems to be holding. Around 1 year post-surgery is when we will really know if the alignment will hold for good. She didn't just suggest the glasses this time, she told us to get them. AJ is a bit near-sighted due to his astigmatism. She didn't see anything else. Whewwwwww. She also shared that AJ's T19 will cover his glasses. We didn't know. We stopped yesterday to order his glasses. No such luck. One kit of the Miraflex frames is shared by 9 stores, so the clerk has to order the kit, then call us to come in, then order the glasses. Sigh. We can go to another optical store, where they have the glasses in stock and ready for purchase, but we'd have to pay out of pocket. Decisions.


I am sad AJ needs glasses. Like he needs another thing on his head. Like he needs another thing, period. Not only that, but I remember being teased as a kid-A LOT-because I had glasses. We might be lucky though. AJ has and continued to love any type of glasses you put on him. From Auntie Jodi's sunglasses to the silly clown glasses we just found for his class "Circus" theme. He cries when they fall off and wants you to put them back on immediately. We can only hope.


Jumping back to his left ear testing appointment...I was informed that T19 is not paying for ANY 2nd (sequential) bilateral implants. A few were approved a 2-3 years ago, but after that, T19 caught on. Of course they won't deny quickly. They, apparently, send back requests for more information and then take the full 60 days or more (sound familiar?!) to deny. While we are confident our primary will approve AJ's 2nd implant, this puts even more pressure on the very idea of them approving or denying this. It also makes us panic regarding how in blazes we are going to pay a co-pay or deductible on a surgery. This information certainly changes things.


And we're still working on moving. We did some furniture rearranging and fixing of the dryer-again-today. Other than that, we are becoming pro's at making more of a mess while you are cleaning things out. With this 2nd implant stuff, and car stuff, who knows what's going to happen. If we don't move we face another IEP with our home school district. Which makes me anxious just thinking about it.


And yes, I miss Gram. So much I don't even want to write about it tonight.


I just feel raw. Stripped bare. Raw with numbness, if that makes any sense. It's one of those nights that is so overwhelming I can't breathe. I can't eat. I can't think about tomorrow. I can't think about anything except that fact that it is simply too much. When do we get to say enough is enough? Someone just said to me, "Geez, you guys don't ever get a break." Ya think?


We've always been good with coming up with things that we don't want to hear from people. Yet, I could never come up with what I wanted them to say. Until someone said, "It Sucks. I'm Sorry." And that was it. That is what healed a little piece of my heart.


Sometimes, I don't want to hear that we're the best thing that happened to AJ. Sometimes. I don't want to hear this was God's plan. A lot of the time I don't want to hear God will never give you more than you can handle. Because really, I've had enough and I've told him that several times. Sometimes, I don't want to hear that I'm a supermom or so wonderful. Sometimes, I want people to stop making excuses about our situation and just acknowledge reality. A lot of the time, we don't want to hear there is reason for everything. I believe this, to a certain point. I know there are positives. There are also negatives. I am thankful every day that AJ is a happy, loving, go-lucky little guy and has no idea he's different. I am angry with how hard our situation is on Jeremy and I. How it has changed both of us, our relationship with each other, our families, and our friends. We're done with rush hour. Oh how we'd love cruise control. Just for a little while.


As if all of this wasn't raw enough...AJ picked up an infertility brochure I had sitting on the end table in the living room. (I've been sorting through our files). Out of all the paperwork sitting on the table, he picks that to walk around with and bring to me. Insert massive tears.


Another special needs mom told me that these years are the hardest, but that we'd start to see the light at the end of this very very long tunnel.


I hope so.

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