Tuesday, April 10, 2012

W is for Wellness

Of all the words associated with autism spectrum disorders the word "wellness" tends to be a loaded  term. Honestly I don't truly understand why but it is. There are accepted medical practices which add to a person's wellness. There are known things that detract from a person's wellness. Why this has become a bruhaha I will never know. So let me tell you what follows in this post so if you disagree with my perceptions you can stop reading now:

Wellness means:
"The condition of good physical, mental and emotional health, especially when maintained by an appropriate diet, exercise, and other lifestyle modifications...."
"...a dynamic state of health in which an individual progresses toward a higher level of functioning, achieving an optimum balance between internal and external environments."

I do not follow any regime that has a chance to harm my children. I do not give them supplements, and diets that are not supervised by a doctor or approved by the FDA. I also do not give them medicines that have not been approved by the FDA and then have not been studied for decades. I do not allow anyone to tell me that they have a cure-all and the magic pill or therapy. If it sounds too good to be true..it is.

Point: If you think the government is in cahoots with big pharma to deprive your child of a cure. so they don't approve idiotic dangerous stupid crap like chelation, medical castration drugs, oxygen chamber therapy or some sick new form of modern lobotomy.you need to go else where. This post is not for you. Read The Thinking Person's Guide to Autism for information about all these therapies and their dangers. Also read TPGA  for information about therapies that do work too. (OT, PT , speech, ABA, Lovass, social skills, behavioral, CBT)

I keep my feet firmly planted on the ground and provide the boys with a balanced, nutrient rich diet. I insist that they exercise. I insist that they take their vitamins. I insist that they understand how their body works and what is best for them. I teach them about self-care, hygiene and responsibility. I teach them that if they expect to live a long life, they need to live a healthy life.

Now how to do this:

Food. Many of our children are on restricted diets either self-imposed or because of allergies. I do not hold that gluten and casein free actually is the way to go for every autistic person. In studies it only seems to have any kind of effect for about 30% of the population. But yes, I had the boys tested for wheat allergies. I had them tested for celiac. I had them tested to see if they are allergic to anything and everything. I even tried a modified gluten diet for a summer. Nothing, nada.

Remember there are necessary nutrients in food that contain gluten and casein. Remember that a growing child needs a different diet than an adult. Remember that if you are going to try diets you need to hire a doctor who understands  nutrition, oddly most  do not, or a really good nutritionist who will teach you how to supplement you child's deficiencies.

We tried one nutritionist who insisted that food was the cure all. Wackadoodle. As I told you stay away from those who think only they have the answer. We presently are actually going to a nutritionist associated with CM2's endocrine doctor's office. Balanced realistic approach to medical issues and a  healthy diet. You need to find someone who gets your family, and what your child needs. Also be careful... some try to sell you more garbage too. Avoid those individuals like they have the plague.

Please note that many of the meds that our children take also put weight on without even trying. It is important to take your child to a nutritionist before the weight issue gets too out of control. Also don't let the doctors tell you that some SSRIs do not put on weight. These just have less of a propensity than others. But they all, even zoloft, the gold-standard of nonwieght gaining SSRIs, can put weight on your child.

If your child is self-restricted...try to give them supplements. Talk to your doctor. When the boys were little we used to give them Carnation Instant Breakfast along with their meal in the morning. The pediatrician said that it was a good supplement. Today they actually have children directed liquid supplements for picky eaters. See which one the doctor and/or nutritionist thinks would work best for your child.

Do my boys take vitamins today? CM1 does, CM2 does not. CM2 probably should but he doesn't like vitamins. He won't take them. He does eat a balanced diet and so far he has no issues. The pediatrician says at this moment CM2 is fine. CM1 does not eat as well as his brother. He loads his life with more carbs and veggies and less with B and D enriched foods. So he supplements with a multivitamin, B12, vitamin C and L-carnatine because of his antiseizure meds.

If you can get your child to eat a regular diet, try picking as much fresh food as possible. The nutritionists tell you that when you enter the supermarket to shop on the corners. The fresh items are against the walls: the fruits, vegetables, the milks/soy substitutes, the meats. If you do not buy organic be sure to use a product akin to Veggie Wash to clean your products of pesticides. Yes some products come pre-washed. We use those. Also be careful with soy. Too much soy is not good for anyone especially males. 

Truly you cannot get rid of every kind of preservative or pesticide known to man. You can buy beef that is antibiotic and hormone free. You can buy free range chicken. You can buy fish that  is lower in mercury. But you cannot screen out everything. You can only do your best. And no I do not buy any of these forms of meat. (Well I do try to avoid the mercury laden fish.) I buy quite frankly what I can afford. That too is important.

Exercise. Get your child up and moving. Make sure they get exercise and I am not talking about the school prescribed gym class. I am talking about get them on a bike. Get them on a track. Get them to run around outside. Get them on a treadmill.

Many parents of autistic children are at a loss on how to help their children get moving. It has become so de rigueur in our society that the only exercise children get are if they join a sports team. We need to remember that back in the "olden" times children actually just played outside.

Honestly with autistic children this is harder done than said. I know. Not only do autistic children need constant supervision (for safety if for nothing else), they also need instruction on how to play outside. I know mine did. Heck they still do. If left to their own devises they will just sit and sit and sit. So we hired a personal trainer for them to teach them how to exercise. In the meantime try some of these activities with your child:

Play catch.
Play tag.
Play hopscotch.
Play on a jungle gym.
Ride a bike/four wheeler/tricycle/ two-wheeler.
Take a walk.
Walk up and down stairs.

When the boys were in elementary school the district had an aide who helped them during recess interact and play with other children. When left to their own devices in middle school they did nothing outside at recess. CM1 stayed in doors and played yugiyoh cards (no not much exercise in that). CM2 would just wonder around the playground doing nothing. It used to annoy me to no extent that noone seemed interested in teaching him how to interact on that level. They decided that as long as he was walking around, getting fresh air and seemed happy they would leave it alone. This was one of those times, by the way, that you have to make a decision whether to fight or to let it go. Since the district at this time seemed to be doing thievery else pretty OK, we left it alone.

Something we also do outside in the spring and summer is to have them help with the lawn/gardening/ weeding. Let older children mow the lawn. This of course only works well if organized chaos and cockeyed lawn mowing is to your liking.

Let them help around the house. Let them vacuum. Let them clean the bathrooms. Let them dust. Let them bring clothes back and forth from the laundry room. Yes we used to call these chores. But these activities are also a small form of exercise. Besides the fact that these are necessary self-care skills.

Hygiene. Many of our children are resistant to self-care. Either because of sensory issues or because of motor issues or simply becasue they don't understand the need for it.  You cannot let it go. CM1 went to school with a boy that refused to shower. His parents did not make him. I don't understand it to this day. Finally CM1 told him he smelled and needed to wash himself. The mother asked me what he said to her son to get him to bathe. My thought was where the heck were you all these years. If the boys did not do as they were supposed to as far as hygiene, there were consequences. And no it was not always easy.

Sensory issues made toothbrushing terribly arduous for CM2. But we finally found an electric/battery operated brush that helped. There are also fluoride washes they can use, but you need to be careful to make sure they know how to spit the liquid out and not swallow it. But until that time, we used to brush his teeth for him, well into elementary school. Also the dentist was visited every three months not every six. More expensive I know, but his teeth needed to be taken care of. Human beings only get one permanent set afterall.

Showers may actually cause those with SPD pain on their skin. See if a bath is better, or even a sponge bath when they are little. We used to have the boys play in very shallow water and over the years of course the bath got deeper and deeper until they turned into showers. Actually today they do a hybrid bath-shower. They love to laze in a bathtub at the end of a day. It calms them. It gives them time to regroup. Then in the end when they are ready to come out of the tub, they turn on the shower and wash.

CM2 did not like the water on his face, so he showered/bathed with goggles. This doesn't happen anymore. He doesn't mind it. But we still have those goggles in the bathroom, just in case he feels uncomfortable.

If the water hitting your child's skin hurts, try letting them wear a t-shirt when they are in the tub. Remember in centuries past people used to bathe fully dressed in a nightgown like covering.  So its not been unheard of. Listen there are always answers its just up to us to find them.

Anyway, these are some of my ideas for wellness and your child. Add some of your own ideas in the comments if you like. Share your experiences. Tell us what worked and what didn't.

Oh and remember, that "wellness" applies to you the parent too.

Until next time,