I just have to say this. Special needs is expensive!! Granted Moo has her own private, unique little cocktail of conditions going on but the one that costs a bomb is Sensory Processing Disorder. It doesn’t help that I haven’t finished The Out of Sync Child, otherwise known as the parent’s SPD Bible. Between being a full time carer, mother, wife, house cleaner, pet owner (you wouldn’t believe how much time my two cats take up), administrator and slayer of the mammoth ironing mountain that never shrinks, I just haven’t had time to read it in full. Of course, Moo’s SPD doesn’t care about that. It is developing relentlessly and what it is doing now could make all of Moo’s other issues raise their ugly heads en masse. Basically, it won’t let her get to sleep. This is a child with a very limited energy resource and a strength of will that would have made Hercules baulk. So, what we have is a child whose mind thinks it can conquer the world continually and a body that can’t make it through the day. If she doesn’t get enough sleep, her body will crack up. There will be chest infections that could lead to hospitalisations, transient ischaemic attacks (TIAs) (that’s mini-strokes to you and me), headaches that make her scream in pain and, of course, the real evil monster lurking in the wings; the ever present chance of a major stroke.
And she’s not happy about it. We’ve had nights with tears when she just can’t get to sleep and she is so tired that all she can do is weep. Moo never cries so it is heartbreaking. We’ve had hours of playing in her bed, as fresh as a daisy in appearance. We, as parents, are very lucky. Once in bed, Moo just doesn’t get out, unless she needs a wee, thank goodness.
So we’ve tried a weighted blanket that I made, the beads cost a fair bit. It worked for the first week but things have moved on since then. It now works after she’s been up a couple of hours and I’ve given her a deep massage and then she only wants it on her legs and hips. Then we’ve bought the relaxing classical music, she likes it but it doesn’t relax her. I’ve bought a massage brush but it you do it too early, she loves it but it does jack to relax her. She’s taken to kicking her bedroom walls for the pressure feedback in her feet. It sounds like she’s having a party with a herd of elephants. Now I’ve ordered Lycra fabric to make a bed sock and a salt lamp. “What, pray tell, is a bed sock?” I hear you ask. It is exactly what it says on the tin. It’s a sock for your bed, well, mattress. Basically, you sew Lycra into a sock shape and slide it onto the mattress. It should be snug but not stretched too tight, a bit like a condom. The person climbs under it and it gives a deep pressure. The bed sock should give the right pressure feedback and the salt lamp should help with the orange glow to get her to relax but also the salt in the air will help her lungs.
All this on top of the private neuro assessment that we have booked with Hemispheres. I am hoping they will be able to tell me everything so I know what I am dealing with. At the moment, I deal with the obvious and hope I don’t make other stuff worse. It’s all a crap shoot.
And, yet, I still wouldn’t change a thing. This is the child that I took to London Zoo yesterday for the Special Children’s Day and let her loose in the shop. She was allowed to choose anything she wanted. There were books, girlie things, cups and saucers and what did Moo choose? She chose a very large, long, stuffed snake. No namby pamby pink teddy for her. No, sirree. She has a bright red and orange snake that is actually longer than her. With her bonus features, her desire to live life by her own rules, her medical puzzles; my kid rocks! God bless her.
Mutant, Mother, Wife 