As some may be aware, we've signed Charlie up for some intense, one on one therapy. He now attends a 'school' called (Autism Journeys). It is a therapy group dedicated to helping Autistic kids here in Utah. We've wanted to enroll him in therapy at this level for some time, but due to circumstances have not been able to until now. Our families have stepped in and for their help we are and will be forever grateful.
Last week was Charlie's first day. I wanted to post this to set the stage, and then we'll try to keep updates coming on the therapy and how it is working out.
The first day was a little rough. He cried a lot which was expected. I think he thought he was in Nursery or something because we went in a room with toys and shut the door and he threw a fit. We tried to calm him and I gave him hugs but we eventually found that just ignoring him was the only way to stop the tantrum.
It was more of an introductory day for the director to see Charlie's personality and problems firsthand so she could decide what treatments to start with and what methods would work best for him. I think she learned a lot and I was able to share a lot of information with her (it felt good to talk!) that really helped.
I told her some of the biggest problems we are having now like the running away, the hitting, the tantrums, lack of speech, the very short attention span and the destructive behavior at home and anywhere we go. Okay, that was more than a few but I laid a lot of it out on the table. :) She gave me some awesome techniques I can start using immediately and demonstrated how to do them firsthand. It's going to take a lot of energy (which I totally have plenty of) and time but I think the things she showed me are really going to work and will make a huge difference for our family.
The funniest (in a demented sort of way) thing she is thinking about is a helmet for Charlie that we will need to put on him every time he hits himself. He has a big problem with hitting himself in the head and biting himself and I guess the helmet is one of the methods they use to stop that. I don't feel like I'm a mean person but Matt and I had a big laugh at the idea of Charlie wearing a helmet around. I guess one of those laugh or cry things right?
Anyway, we nailed down some things he needs the most in the beginning like working on sitting in a chair and increasing his attention span so that the things like speech therapy will be more beneficial later. I feel really good about it and even though I'm sure everything is going to be exhausting, I think it is going to make a big difference for Charlie...and us. Thank you so much Melissa for telling us about this place.
We are also strongly considering starting Charlie on the Ketogenic Diet. I am really scared but it seems to be our best option right now and our Neurologist is really pushing for it. Here is a little info about it...
"The diet starts in the hospital.
The child is placed on a 24-hour fast and is closely watched to be sure he or she is handling the very real stress of not getting any food during that time.
Once the child begins burning fat for energy instead of glucose (a state called ketosis), the doctors gradually introduce the foods that are part of the diet in amounts that are right for that child.
When the child goes home, the parents continue to carry out the diet at home, weighing every item and making sure that the balance between fat and other nutritional elements is maintained. Doctors and dietitians follow children closely to make sure they're getting enough nutrition and are growing.
Each portion of food must be prepared very carefully by the parents, who often use a gram scale to weigh items exactly.
That's because a tiny mistake in weighing and measuring foods (or if a child finds and eats a few cookie crumbs, or puts anything containing sugar -- including medicines and toothpaste -- in her mouth), can break the diet's effects -- and cause a seizure.
Parents of children on the diet use special paper strips to check the ketone level in the child's urine.
Ketones are the chemicals that the body produces when it burns fat. Parents also test urine weekly for blood, which could be an early sign of kidney stones, a possible side effect of the diet."
You can read more about it at http://http://www.epilepsyfoundation.org/about/treatment/ketogenicdiet/
There is a one in three chance the diet will stop the seizures, a one in three chance it will reduce the seizures and a one in three chance that it will do jack squat. The Dr. said they will not do the diet longer than three years on a child because it is not very good for the body.
The good news is that if it does eliminate the seizures, the brain forgets how to have a seizure after a certain period of time (a year or two) and in some cases, you can wean the child off the diet and be seizure free for the rest of thier life. This would be best case scenario and there is about a 1 in 3 chance of this happening. The best odds we've heard in a while. We will probably have to drop off the face of the planet and stay mostly in and around our home to prevent him from accidentally getting a hold of some little piece of food that would blow the diet and we would have to start all over again. The good news is that we aren't able to have much of a social life with the situation now so it won't be that big of a loss. ;)
So there is the full story. We appreciate all of your support more than any of you can know. We love all of you and feel very blessed to have such wonderful family and friends to help us through all of this. Thanks so much for everything.
Steff and Matt