We don't know what the answer is. Not to make light of it either. It has pretty much freaked me out. Is it pain? Is he frustrated because he cannot sleep? We've tried talking to him to get some feedback but but there's only so much we can uncover with yes and no answers or asking him to point to what's bothering him. It's like the most difficult game of charades you've ever played....except someone is gonna get hurt if you can't figure it out. I've tried meditation with him. I've bought toddler-size sleep sacks (Amazon.com is the best) so when his covers come off in the middle of the night he doesn't get cold. We've had to endure uncomfortable nights sleeping on the floor alongside his bed. We've kept his nightstand lamp on throughout the night in case he's become afraid of the dark. We've explained its ok if he cannot sleep but we can relax and lay in our bed quietly. He has a recorded button that calls for Mommy or Daddy attached to his bed. So why the headbanging, screaming and kicking? We're talking several hours in the middle of the night. Ssshh! We've even tried melatonin....
Clearly, he is trying to tell us something and we just are too slow to figure it out! This has to be the most upsetting thing in the world to me. If only we could figure it out...to hold him close to us...to not let ourselves, his own parents, be one more person in the world that can't understand him. So I called in for reinforcements on a solution to pad his walls so at least he doesn't end up with a brain hemorrhage! Didi and Bop helped put together a makeshift "Sleep Safe" bed until we can determine whether or not this child needs to wear a soft helmet and whether Medicaid will cover us for realz with this mac-daddy Sleep Safe bed as a permanent solution. Until then, we have protected him by using old memory foam stapled (staple guns are a great way to get out your frustrations with life) to leftover plywood and place against the walls surrounding his bed. Didi took some of my old curtain fabric and covered up the ugly foam to make it a little more attractive on the eye;) Thank you Didi and Bop!!
One sleep deprived day I took wheelchair matters into my own hands and tried to adjust it for LJ's growth. Hindsight's twenty twenty cause I shoulda let the professionals tweak the chair. Well, um, I ended up needing to go to urgent care for a coupla stitches in my finger. Silly finger wouldn't stop bleeding. I felt like such a wuss compared to how tough LJ is when he's in pain or has much bigger boo boos. Stupid wheelchair- couldn't see straight and massive headache-can't wait to get rid of you!
In the DIY department, Bop crafted this beauty seen below for the bathroom. LJ has a problem with most soap dispensers. So Bop took a Chinese take out container, a regular soap dispenser, and poured concrete around it. This gave it a sturdy base so that LJ wouldn't accidentally knock it over when he was trying to wash his hands. And its reusable- when its empty we slide out the soap bottle and insert a fresh one. Then he cut a circle out of wood to make the top a larger target for LJ's fine motor skills to be accommodated. Its got a metal bracket thingee to keep it in place so when you need to place it on a new bottle it swings out to release the top. LJ's right hand is still tight and usually balled up in a fist, so he uses his left hand on the pump and squirts some soap onto his right fist and then he internally says his ABCs until his hands are clean. (just kidding about that last part...I don't know what he's really saying. Could be swearing for all we know) Now, if I could just find some time to paint it or make it all matchy matchy with our bathroom decor we'll be all set!
LJ also has been completely obsessed with routines and schedules. Its been a challenge. We can't get through a meal period without him repeatedly wanting to know twenty questions. Who's coming? What's for breakfast? What's the order I will eat that muffin, applesauce and cereal? Will there be ice in my water? Who's picking me up today? What's tomorrow's school lunch? Who's picking me up tomorrow? What therapies are after school? When is Mommy teaching? Who is babysitting?
 |
| how ironic that I chose this routine given the first chapter of this blog post |
We recently found this fabulous app for his iPad called Good Karma. It has definitely improved the game. We used to do this with small, square, velcro Boardmaker images but it was extremely labor intensive and took up a lot of storage space. This app is convenient to have on the iPad or your phone, and you can use stock pictures or upload personal photos from your gallery. We've even had a little speech practice thrown in, involving LJ in the process. For each activity we put on the schedule, we let him try to record the audio label. He lights up when he hears himself.
When he starts getting anxious about his routine, we can access his Good Karma app, and all is good.
On a similar vein, our Cranio Sacral Massage (CST) therapist forwarded the link below. It is the fobityy shiziitty BOMB! Please check it out....it will surely become a valuable list of online vendors, research on typical SN topics from CVI, Communication and Equipment such as wheelchairs, gait trainers, etc.
Resources for Parents of Exceptional Children
Okay. Thank you for sticking with me to the end of this rambling post. I'm off to find out when the equipment people can come out to adjust LJ's hi-low chair (I'm not making the same mistake twice). They were supposed to call me back yesterday about setting up the appointment. So now I go chase them down. My work is never done.
