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!

Equestrian Therapy - week 1

Zane started horse therapy last week and absolutely loves it! Now, this is a kid who doesn't like to be around animals too much and is aversive to them the majority of the time... excepting our cat, Matisow, who pretty much forces himself on everyone... and Zane has finally stopped trying to push him away.

I found out about Hoofbeats to Healing through a chiropractor in the valley, Dr. Troy Frazier. My cousin Paul referred him to me after learning his biofeedback machine wasn't giving accurate readings. Dr. Frazier has one of those machines and works with autism. We have an appointment to see Dr. Frazier this week and hope to learn some new strategies to help Zane.

I learned about Tami Tanner, the horse trainer, through Dr. Frazier's website... after poking around a bit. She works with all kinds of special needs and brain injuries. She uses only Missouri Foxtrotters... horses that are bred for their unusual gait. They walk much like a giraffe, with the side legs coming together. They are very smooth, especially when galloping, and their movement mimics what crawling does for infants for the brain.

Infants learn proprioception, hand-eye coordination, right and left lobe interaction, vestibular development, and a horde of other developmental markers through crawling. Most kids with autism never crawled. Zane didn't. Well... he crawled, literally, for one day. I chalked it up to his superior development. Had I known, I would have spent much more time working with him this way.

Zane rode bareback for his initial consultation. He lasted three laps around the arena before "wilting." Wilting is when the body gives out and can no longer support itself through the horse's movements. The only option when that happens is to take a break or quit for the day.

Zane responded very well to that initial consult. He was quiet all the way home... usually I have an ear full of eeeee's. :) He was compliant when we ran errands before returning home, when usually he complains. Zane has had terrible mood swings for a couple years. I think mostly due to his inability to communicate or whatever anxiety/stress his autism causes. After this ride, he was even-keel the rest of the night and slept soundly in his bed.

We returned the next day for a full session. One and a half hours, in a soft saddle, around the arena and we couldn't get him off the horse to take a break. He would fake giving high fives when the girls reached for him to get down. And finally, patted the horse's neck and asked, "please?" So he got an extra lap around!

That night, there was no fussing, no screaming, no hitting, biting himself, throwing himself down on the ground and hitting his head on the floor, no meltdowns, no tears whatsoever. He also wasn't bouncing off the walls with hyperactivity, humming "eeeeee" all over the house at annoying levels, running everywhere, waving the preferred toothbrush in front of his eyes constantly, or smothering me with choke-hold hugs. In fact, he was more even keeled than I've ever seen him.

The following day, the same even temperament followed us around all day. I kept waiting for an explosion, but it never came. My mother watched him for a couple hours that afternoon and observed the following.

"I tended Zane today. He was enjoying himself in the front room while I was Upholstering a chair. I sneezed twice. He turned and looked me in the eyes and said, "Ah-choo, ah-choo."

"He came up from the basement with a DVD cover in his hand and gave it to me - wanting me to change his movie on the TV downstairs. I picked up two other movie covers from a chair that he had brought up earlier and took all three downstairs with me. When we got to the hallway, Zane said, "Let me do it," He took the first one out of my hand and ran ahead with it to the TV."

By Sunday, three days after his first session, his humming started coming back a little... some 'eeee's here and there but mostly his humming sounds like actual humming - with lips closed. He had an even temperament most of the day - again, no meltdowns, screaming or tantruming. Towards bedtime, however, he started getting more hyperactive and his eeee's began to come back... probably due to being tired.

We came back for session #2 today, Monday, and Zane rode this gray horse, a level 5. This level is the highest level, which horse gives the most impact. We are bombarding Zane with input for the first few weeks by putting him on a horse like this. In Session #1, Zane rode Marquis... another level 5, but different within the level. Zane could ride Marquis for the entire session... but this gray horse Zane had to take several breaks. He cried a little and screamed a little here and there. After one lap around the arena, Zane was already wilting to the left - which means his right brain was dominating.

He didn't seem to like this horse very much and was upset periodically through the session. He only rode for 45 min. The last go around, Zane screamed and reached out to the boy in the purple shirt to get him down... he must have meant it to reach for a stranger like that. Tami told me to watch him the rest of the night. He has been very pleasant... noisy, with his humming, (the lips closed kind, not the eeees), and stayed by my side as we went into the grocery store. Usually he runs off and I have to chase him down. He is happily playing with his iPod and has finally decided to explore the new games I put on there several weeks ago.

We also met with Dr. Frazier today.... who is recommending some different therapies for Zane, but we won't know exactly what protocol to follow until we have him computer tested this Wednesday. He will be able to tell what is going on with Zane, from food allergies, to metal toxins, to neurotransmitters not working properly. I am very excited to work with him. He currently has 3 or 4 autistic patients who they hope will lose their diagnoses this year. Below is a video of his horse riding.... kind of boring, but it is interesting to note his posture with each lap.

Tulsa Trip - August 2009

Aaaaahhhh.... summertime. A time to relax... and a time for lots of naps! Zane loves Nonni's big tub and climbed in one afternoon with a pillow from her bed and fell asleep watching his iPod.

Grandpa Comish wasn't too happy to see his pillow in the tub and playfully teases about Zane frequently crawling into his side of the bed to get snuggled and cozy while he watches his movies. Today he just happened to find the tub a suitable bed. Sometimes when things get a little too quiet, we wonder what happened to Zane.... then we think to check Nonni and Grandpa's bed and.... yep! There he is! All snuggled in for a cozy nap. :)

Our little kitten, Matisow ("Matty") is a real curious cat and loves to be right in the middle of all the action! He follows Zane everywhere and tries to do what Zane does... even jumps into his hammock swing to play. Zane fell asleep on the floor and as usual... Matty is right by his side.

During our visit to Tulsa to see Todd, we found a really fun kids park with neat water activities, fountains, falls, etc. Zane really enjoyed that and Todd is so great with Zane and helping him figure out how to get in and get dirty!

This park is really smartly designed with little man-made hills covered in artificial grass that act as an enclosure/seating area. It is really perfect for parents who can then see their child from any area of the park they are in and for a kids like Zane, who tends to run off, it provides a boundary area that makes sense to him.

Todd is such a great dad to Zane... he knows just what to do to get Zane to respond to his surroundings and Zane always gets more verbal when he is around. At the park, Todd showed Zane what the other kids were doing by sitting him down in the water and getting him all wet and helped him chase the water in the various fountains. After that, Zane had no problem investigating the fun on his own!

I wish we had parks like this in Utah... the kids have so much fun and there are different sensory experiences there for kids like Zane.

Sweet daddy brought all of us to the zoo in Tulsa and we had so much fun! I rented a little push cart for Zane to ride in, which saved us all from having to carry him everywhere. He had a great time riding to each exhibit then jumping out to investigate and hopping back into his little car to move on to the next stop.

We took a camel ride and Zane kept looking down and around the camel trying to figure out how this thing worked. You could see the expression on his face that said: What's moving this thing? :)

Zane's favorite exhibit was the wetlands which was really neat. We walked through a jungle and saw several small aquariums that looked like a cross-section, seeing above the water and the bottom of the water at the same time and all right at Zane's level. I think we could have spend hours there.

He did so great at the zoo... I am very proud of him. It was a long, hot day and he stayed interested and happy the whole time!

Todd also brought us to see the aquarium while PawPaw and Granny were there to visit and spend time with Zane. Another great activity idea for Zane, although it didn't hold the same interest as the zoo but I believe that is because the zoo is so spread out - not so many visuals in one place to cause distraction to him. He loves the fish and especially the jellyfish. We also went under the shark exhibit where you walk through a tunnel and watch all the scary sharks swim over your head! Zane was fascinated!!

Most of Zane's interest was caught up in the smaller aquariums were he could find the little fish and follow the bubbles that the smaller tanks filters made.

He had a hard time adjusting to a new place and unknown schedule for the first two days. Todd and I decided that next time we would wait for Zane to adjust before bringing him to these activities, hoping he would handle the overwhelming input a little easier.... but he still did pretty well.

We had such a fun time with all of us together again. Todd was wonderful to buy Zane a hammock swing for his apartment which made Zane feel more on his normal schedule and surroundings. It really helped him sleep better at night - he would swing until he started to get tired and then go and put himself to bed... little sweetheart.

It was hard to leave, but we needed to come home and get ready for school to start. Zane slept almost the entire plane ride and was happy to get in his own bed that night.