Equestrian Therapy - week 2

Zane started Kindergarten this week... his first day he was a little apprehensive but also excited. He fussed a little bit before going inside and didn't want to sit in the semi-circle for calendar time. He threw a big fit. His teachers wrapped him in a compression vest and that seemed to help him calm down fairly quickly. We went to get his hair cut last Saturday, which he hates... it's always a crying/screaming event. The dead hair that sticks to him after it falls from the scissors seems to freak him out. I tried the same technique - using my hands around his chest- and squeezed slightly... enough to let him feel I was there, but not restricting him so he couldn't breathe. He calmed down a little bit and let his hairstylist finish... although he was whimpering through the rest of it!

It is into our second full week of equestrian therapy and Zane seems to be doing well behaviorally, his tantrums are equally as desperate as before, yet there is something different about it - maybe a feeling we both have. It is very clear that he gets upset because he can't communicate he doesn't want to do something. This afternoon, Zane got upset and threw a fit (fit - meaning biting himself or being physically aggressive to someone else or himself while screaming at them) the last 20 minutes of school. The whole day he was as happy as could be.

In fact, this morning as I dropped him off, the toothbrush he carries with him everywhere (which is the preferred object he uses to wave in front of his eyes as a stimming thing) that I usually have to negotiate with him to hand over when he goes into the classroom (I don't let him go into class without giving it up) he got out of the car and promptly threw it in the backseat! Then he held out his arms to put on his backpack and we walked to his classroom. As soon as he saw the door, he dropped my hand and ran inside excitedly. So cute! I had to beg him for a goodbye kiss!

His teacher told me his whole day was just as happy and fun until the last 20 minutes... he wanted to go and couldn't go and couldn't tell anyone what he wanted and didn't want to do what they were telling him and he couldn't express that. Anyone would be so frustrated by that. He was very upset when I picked him up - with big tears streaming down his face and just sobbing. But he was fine once I put him in the car and figured he must just be very tired. We drove out to his horse therapy session and his crying fit started all over again. It lasted the almost the whole session.

This picture above is at Dr. Frazier's office - the naturopath chiropractor we will be working with. I have never seen Zane voluntarily entertain himself with books... first of all he would have to notice them under that little TV, and next he sorted through the ones he thought looked interesting. He sat there and jabbered as he turned each page. I wondered if he was telling himself the story!

He is still humming his "eeee" sound regularly - just as always... but it comes and goes. Some days are worse than others and usually those other days he is grinding his teeth in place of the humming. Either one is enough to hurt your ears. I worry so much over him. I wish for just one day where I didn't have to worry whether his teeth were whittling down to nothing, or his hearing going bad (ignoring me), or his toe-walking preventing him from ever walking normally or causing underdeveloped muscles, or his eyes going crossed sometimes, or the head cock to the side, or whether or not he will ever call me "mama," or be able to tell me his thoughts, or his hurts, or his needs and wants, or whether he's giving himself brain damage with each hit of his head to the ground that I can't prevent, whether he will be able to make friends, hold a pencil and write his name, use the toilet by himself, get himself dressed and brush his teeth by himself, or talk on the phone, or read a book, or... or...

No one knows what it means to be an autism mom unless you've been thrown into it yourself. Women worry about things - that's a given. We worry even more about our husbands and even more than that about our kids, then there's the state of affairs within our families, where we are headed in life and how we will get there, and how we will be able to obtain what we need in our lives possible, etc.

I rode the horses this week. Tami tells me the horses reveal everything that's going on inside of you. It's no secret, since emerging as a single mother ...of an autistic little boy... I'm scared to death about how to keep us going month to month - and it feels as though there were a trap door under my feet that at any moment could be opened and engulf me - and I'll lose everything I'm working so hard for, including myself. It is the worst feeling in the world to be dependent on other people or institutions, etc., but only in the sense that if for whatever reason that trap door opens and what you depend on is taken away - you don't have a replacement for it, or even the ability to replace it. You are at the mercy of that institution or SOL.

I spend so much of my energy and time caring for Zane - it is so easy to let my own needs slip away. (Me? have needs? .... what are those??) Tami pointed out my neck to me and what she told me really opened my eyes. She accused me of having a Dowager's hump. (a condition caused by osteoporosis that invokes little fractures at the base of the spine and causes the neck to compress and round, which creates a "lump"). I freaked out - not just about the unsightly hump on my back, but the impending fight with my health I was now up against.

But, researching it further myself, I realize.... I haven't been able to stand up straight for years. I physically can't do it. It hurts and I'm too tired all the time, and I don't straighten anymore. And, I don't have a Dowager's hump.... maybe a little more fat at the base of my neck than I wish I had, but that's just another testament of my lack of attention to myself.

I know people keep telling me to care for yourself first and I've been trying... but when you have a kid with such needs, spending money to care for myself feels like such a selfish act. I would go for a walk everyday, but i'd have to hire a babysitter.... He is too big for a stroller now or I'd just take him... I'd do a lot of things, if only I had the energy/strength/stamina for it. A kid like Zane exhausts you to the bone. At the end of the day when he is in bed and all is quiet, the last thing I want to do is hop on the treadmill... a hot bubble bath however might just help!

I took Zane off all of his meds (the Risperdal, and the Tenex - for ADHD) a week ago and I am amazed to report that he is sleeping through the night. I give him one 35mg (I think) of melatonin and one little dropper of Bach flower Rescue Remedy liquid solution. It comes in a spray as well, but I find the dropper works best at night. I've also given him a dropper for church and that seems to help him calm down a bit enough for Primary and all the kids.

The changes, subtle as they are, are changes nonetheless. Any parent of a special needs child will tell you how wonderful it is to celebrate the little victories. Like the fact that Zane and our cat, Matisow are little buddies now. Even a month ago Zane wouldn't want the cat near him, but since his horse training, Matty and Zane play together a lot.... mostly because Matty butts his way in. They swing together, and jump on the trampoline together, and Matty does his best to sleep next to Zane. It's so wonderful to see the interaction. Zane will look at me sometimes when Matty give him attention and laugh. Never thought I'd see that! And once in a while I'll catch Zane reaching out on his own to touch Matty.

Everyone always talks about how great dogs are for these kids, but this cat has been so much better for us than a dog.

Zane's bowels have been a horror/mystery to me since his birth. Even since that first week he has had horrible bowel movements. I mean horrible in the sense that he doesn't have a bowel movement for weeks.... yes, weeks... and when it finally comes - it is as hard as a rock - a compacted, fibrous, very dry rock. It's unbelievable.

Everytime I think I've got a handle on his bowels, I get thrown again. He passes this "rock" and then his bowels will return to normal - having normal bowel movements on a daily basis. And then weeks or months later, the problem returns. It is so confusing. And I've no idea what is causing it or why and with each time it gets harder and harder to treat.

I've tried prune juice, oils, extra doses of magnesium, Karo syrup, aloe, laxative teas, etc. What I haven't tried are suppositories, colonics, or something else of that nature.... although I'm leaning heavily that way. Zane also rubs his boy parts almost uncontrollably sometimes. Now, this doesn't happen on a daily basis, but sometimes it happens all day long for days and then it goes away. I think I've narrowed down the association between the rubbing and the bowel movements and I wonder if the rubbing gets worse because of the constipation he is feeling?

Food allergy is another possible culprit, but anyhow - the rubbing thing is basically out of control these last few days. It will be interesting to see if it goes away after this bowel movement has been passed.

As far as my health goes, I decided I would make a commitment to myself. While I may not have the energy to workout as hard as I once did when I was younger, I understand how important it is to keep me going and eating a healthy diet is equally as important. I've been off sugar for several days now - almost a week - and I can feel the difference. If I can keep in mind how necessary it is for me to have this energy, I can keep up the no sugar diet and maybe even gain the strength and energy to stand erect once again!