Welcome!! It sounds like you have a pretty full plate. One piece of advice that may seem strange but is CRUCIAL to the stability of your family is to make sure that you get some time each week to do something that is ONLY for you. It may seem selfish, you may even be told it is selfish. It is NOT. If you sweep all of your own needs under the rug and take care of the kids, the house, the husband, the medical stuff, and everything else you will never survive this journey. You MUST make having some "ME" time a top priority. Not days and days of it, but an hour or two a week where you don't have to deal with anything but recharging your batteries. If it means your husband must babysit and you lose a couple of hours of family time, it is still important. Your kids will actually benefit because it will give them a chance to build a relationship with Daddy with-o you there. I am NOT saying he doesn't spend whatever time he can with them, or that family time is not important.
It is just equally important to not burn out Mom. Very few marriages survive life with a special needs or difficult child. You have 2 kids who show signs of real problems. So if you want to be the best mom you can be, the best partner you can be, first you have to be the best YOU that you can be.
I strongly recommend reading The Explosive Child by Ross Greene. It is sort of our "parenting bible" around here. It will seem counter-intuitive, but it WORKS. The Early Childhood section of this site has a sticky about adapting TEC methods for very young children.
From what our neuropsychologist, Occupational Therapist (OT) and dev pediatrician have all told me, Sensory Integration Disorder is at one end of the autistic spectrum. It may not be widely stated that it is, but that is what I have been told. It is at the mildest end if there are no other symptoms of autism. Few schools will recognize it as a type of autism, but the "experts" are starting to.
For what it is worth, whey is a milk product and does not have gluten. Many people with autism are sensitive to not only gluten but also to dairy. The diet is often called the girlfriend/CF diet, or gluten free/casein free diet. Casein is a milk component that is used in all sorts of things, many of which you wouldn't think of as "dairy" items. This diet doesn't work for everyone, but it can be incredibly effective for some people. The diet is certainly worth a shot. I would ask the nutritionist about it.
Has anyone explored whether or not Michael knows what hunger feels like? His body may not be processing hunger signals in a typical way. Other problems might be that he feels hunger but does not know what it is, that his brain doesn't interpret the hunger message and even the physical signs of hunger (like stomach cramps and the aching feeling in the stomach). These can be HUGE problems to treat. It also may be that at some point he got so hungry his stomach started to hurt. When he finally ate his stomach was so sensitive and upset that he actually felt worse, maybe even like he was going to be sick. It is a very intense and awful feeling. People with autism are often very rigid about rules. They are not the rules others tell them, but are rules they figured out for themselves. If Michael got an upset stomach because he waited until his tummy hurt and then he ate (or maybe ate too much, or too fast or a food that further irritated his stomach) and he felt even worse or maybe even threw up, he might associate eating with that awful feeling. He may have an aversion to eating because that experience.
How do I know to suggest this? As a kid my brain did not process hunger signals properly. I NEVER felt hungry. I did, however, have times my stomach ached and burned and churned. If I ate qat that point I got really sick to my stomach. It truly was an awful feeling. I struggled with this until I got pregnant the first time.
You are doing an awesome job for your sons. You have already started finding specialists to help you and you are doing all you can to find out why your sons are having problems.
I do want to recommend a couple of other books that you might find helpful. The first two are The Out of Synch Child and The Out of Sync Child Has Fun, both by Kranowitz. The Has Fun book is packed with ideas to provide whatever sensory stimulation your child needs. It has lots of tips for how to make anything you need as cheaply as possible. The first one will tell you a whole lot of info about Sensory Integration Disorder (SID). If possible, let your son choose the activities that he would most enjoy. Many people with Sensory Integration Disorder (SID) gravitate to things that will provide whatever sensations they need. When my youngest was evaluated for sensory issues I was stunned to find that the items he truly LOVED to play with were almost all items that the Occupational Therapist (OT) was recommending to help the other issues.
Other books you may find helpful are What Your Explosive Child is Trying to Tell You by Dr. Doug Riley and Love and Logic Magic for Early Childhood. If bookstores don't have the L&L book you can order it from their website (
www.loveandlogic.com).
My last suggestion is for you to put together a Parent Report. It will help you keep all the info about the various problems in one place. There is a format on the FAQ/Board Help section in a thread titled "Parent Input/Multi-disciplinary Evaluation.
Once again, welcome to our board!!
Susie
