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Health & Fitness

Autism-Tantrums, Toe-Walking, & Sleep Deprivation

"Most of our son's rage was frustration. He couldn't communicate what he wanted and would look at us with such helplessness. We felt so guilty that we couldn't understand him. He had lost his words...

This blog is the sixth in a series about a Lake Elsinore mom's personal challenges and triumphs  ...

The years between 3 and 5 years old were probably the worst, as far as dealing with this Autism thing. My son was very unhappy most of this time. We talked to other parents, our doctor and behavioral therapists through the Regional Center. We tried the no-dairy/wheat diets (this was before the GFCF- Gluten/Casein Free diet was the rage), gave him many supplements (B6/Magnesium, DMG (Dimethol Gyceine and others), but nothing was working.

Most of our son's rage was frustration. He couldn't communicate what he wanted and would look at us with such helplessness. We felt so guilty that we couldn't understand him. He had lost his words and had a language all his own. A sort of gibberish that meant something to him, but we couldn't understand it. Sometimes he looked at us like he was trying to say "Why aren't you listening to me?" We spent hours saying "What's wrong son?" but it just made him more frustrated. 

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We noticed him toe-walking a lot also. His sensory issues were on high. Touch, smell, texture, sounds, you name it, he couldn't handle any of  it. My son toe-walked for a couple years, until he was desensitized to allow his full feet to touch the ground.  I read somewhere that they are claiming "toe-walking" is diminished by being on the GFCF diet.  Not so in my son's case, since he stopped doing it on his own as he got a bit older (and he was not on any diet at the time).

Sleeping was something of a rarity for many years. My son could stay up for days at a time without skipping a beat. I couldn't keep up with his sleep habits and, after a few years, it starts to take a toll on you. The "energizer bunny" had nothing on my son, that's for sure! We tried all kinds of things to help him sleep. When I attended one of many advocacy trainings, one of the other parent's was talking about the sleep problem. She announced to the group that she had the answer to this. We all couldn't wait to talk to her and see what she was doing. What could be the magic answer? She said a shot of liquid Benedryl did it. I gave it a try and for my son it worked. He slept like a baby and so did his mom. Later on we also tried Melatonin for a while. That worked too and made sense to me because it is used for jet lag and it is a natural hormone most people with Autism lack. My son doesn't need anything anymore to help him sleep. Most of the time he just listens to relaxation music and it soothes him. Now, when he has those nights that he doesn't sleep well (which is usually when the moon is full), I don't have to stay up with him all night. He is able to find things to occupy his time. I do, however,  keep my ears open to listen for any thing crashing or breaking. :)

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Giving my son the Benedryl and the Melatonin was fine with me, because they weren't a prescribed sleeping pill, like some kids were on. I have never given my son any prescribed drugs, after a very scary incident when he was 2. A doctor prescribed Melleril for him. It calmed him down all right--he was a zombie! I much rather would have had him being the "energizer bunny" than some zombie, sitting, drooling with his head down. I tried lots of natural things with him and some worked, some didn't. The bottom line is there is no known magic pill for Autism. Some kids do well on drugs and some NEED the drugs to maintain. My son got though all those years without having to be drugged (although, I'm sure some people would have loved to see him drugged). Luckily, I had doctors that listened to me instead of the other way around. After all, who knows your child better than you? 

I can remember a particular tantrum that he had that lasted for eight hours! We video taped much of it and I showed it to the behaviourist when she came for our home visit. I told her "watch how out of control my son was" and she replied, "No, watch your reaction to what he was doing." I was shocked to see how I was feeding his tantrum by not ignoring his behavior. The more I intervened, the more the tantrum escalated. From that day forward, I used the "Ignore the bad behavior, reward the good behavior." It still works today if he has a meltdown. He has learned over the years to self-regulate his meltdowns. It has made a huge difference in all of our lives.

 The most "popular" therapies going around the Autism circuit at the time were, Mega-Vitamins, Facilitated Communication, Adversive Behavior Therapy (the original Lovvass method of Applied Behavior Analysis), Sheep Urine Injection (from Mexico--I actually had a parent in our group that was going to try this), and something called Auditory Training was beginning to get popular. Most of the parents in our ASA group tried these therapies, but no one really saw a lot of difference in their child. The children in our group ranged from severe to mild, so it wasn't just higher functioning kids that were trying these methods. Maybe we didn't see a difference because we weren't looking to fix them. We had already accepted and love them for who they were. We did notice, though, that a lot of the kids basically outgrew their behaviours and tantrums as they aged. Just like your "standard issue" kids do, except it took them longer. That told us a lot about our kids and Autism.

The only true therapy that has been proven to make a difference is ABA (Applied Behavior Analyisis). All the others, Hyperberic Oxygen Chamber, GFCF diets, Sheep Urine, Supplements, etc. -- the old  ones and the new ones -- are still not totally proven therapies. They are, however, making some people very rich, selling books, certain diet foods, and filling conferences with parents who want to fix their kids. But are these things really a cure or recovery from Autism? I recently was at a meeting where a doctor spoke to parents and said, "We need to catch the children early and do these therapies, so they don't become a burden." I was so upset by this doctor's statement! There is no way I would EVER have my child seen by someone that felt our kids are burdens! I looked around at some of these parents with newly diagnosed kids and wanted to cry for them. If someone is telling parents there are cures or that their child will end up a burden, without the magic therapy, I'd be very cautious. Don't you think that if there was a cure for true Autism, we ALL would have it for our kids and adults. For something to be a cure or that people can recover from, it should work for everyone. These therapies don't! One size doesn't fit ALL. I can still see Autism in the children whose parents are claiming they are recovered. Most haven't even hit puberty yet. That's another whole Journey!!

One of the most "recovered" Autistic adults is Dr. Temple Grandin.  She will tell you she is not recovered from Autism.  She is now in her late 50s. She has a Ph.D. and is known for her work with animals and her design of a calming machine for cattle before slaughter. She is STILL AUTISTIC....

*The opinions in this article are strictly mine. I am not telling others not to do whatever they feel they need to do. Do all you feel is right, to help you through this Autism Journey. I can only speak from my own experiences over the last 23 years, as a mom, who has tried it and lives it.

On my next journey I will go through the maze of public school and special education. Until next time....

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