In an ideal world my son would be voicing his opinions, making decisions, going out with his friends, learning to drive, furthering his education, managing his finances and hopefully turning into a well adjusted, sociable young adult. However, this is not an ideal world.
My son has autism.
He is almost eighteen years old and I wonder, like all mothers, what the future holds for him.
We're certainly not going to have long debates about anything because my son rarely speaks. When he does it's just the odd word or phrase and you have to be a good detective to appreciate his "clues". He does try hard though and also mimes, gestures and occasionally writes or shows you what he wants.
His language has deteriorated since he started to have seizures. We're not sure if it's the medication affecting his speech or the seizures themselves but either way his language is not as clear as it used to be. It means his audience has to try harder to understand.
Of course, as his mother I often know what he wants without him doing anything more than just glance in a particular direction or look at me. Other mothers will know what I mean. It's sort of a sixth sense, a special bond.
Jodi is settled in a wonderful school where he has been for almost fifteen years. The staff all know him and he knows them. It's comfortable but he can't stay there for ever.
He doesn't really have friends although he does have various groups of people whom he sees regularly. He's happy to spend time with them and the feeling is reciprocated.
One such group is Lantern Dance where he goes for weekly dance sessions. Jodi is made to feel very welcome amongst the integrated group consisting of mums, dads, fit young teenagers, supple adults, professional dancers and other special needs people. Music and dance seem to fit with his autism somehow as his whole life appears to be set to rhythm.
He also attends two special needs youth groups where he has the opportunity to do "normal" things like karaoke, pool, badminton, dancing, cinema trips, bowling, restaurants, trampolining, swimming, etc.
It's wonderful for him but he's still considered a child. At least he is until he's nineteen and then it all changes. Overnight he will be transferred into the hands of "adult" services and it's scary.
It's difficult enough to get the appropriate help as a child but it's much worse for adults. We've been lucky with Jodi so far but there are many parents who feel the needs of their child have not been properly met. With autism on the rise and a lack of resources things are unlikely to improve. Professionals, teachers, social workers all agree.
Unfortunately, autism isn't something people just grow out of. There are, of course, many interventions you can try to improve the quality of life for your child and we've tried many. Today I was told he's a "lovely young man" and a "credit" to me so obviously some, if not all of them worked.
Certainly we saw changes almost immediately with some things, others took much longer and you get to the stage where you are not sure if it's doing any good at all but you daren't stop it "just incase".
Our most recent and significant improvement for Jodi has been his diet. After years of eating a very self restricted, nutritionally useless, diet we introduced him to an amazing Probiotic formula called In-Liven and now he eats just about anything including fruit and vegetables. Best of all we don't have to concern ourselves with the gluten problem which has plagued him for years. This is common for people with autism and is the inability to break down the proteins found in wheat.
Jodi's diet used to consist entirely of acid forming foods which provided a wonderful breeding ground for pathogenic (bad) bacteria as they cannot live in a medium of less than pH 4.2.
The probiotic we use contains the full thirteen lactobacilli family found in nature and which have found to be beneficial against pathogenic bacteria, parasites and Candida ? again another big problem for people with autism.
Lactobacilli are rapid and effective colonisers and such prolific lactic acid producers they are soon able to lower the pH of the intestine making it inhospitable to pathogenic bacteria.
The body should have a bacteria ratio of 85% good bacteria to 15% bad bacteria. For most people it is the other way round. Only when the good bacteria have been re-established will intolerances go away and good health be restored.
Certainly Jodi is incredibly healthy now and hasn't suffered from the spots and acne associated with most teenagers. He's changed in many other ways too. Many people have made positive comments. They can't put their finger on exactly what it is just that he's different somehow. If you believe, as I do, that the gut is the second brain, then I'm sure the probiotic superfood he uses has much to do with it.
Complete with 26 certified organic living wholefoods and 18 amino acids, it has been pre-digested for three weeks prior to bottling so gives up its nutrients as soon as it enters the body. That's one of the biggest problems getting nutrients from food - time.
Although food takes about 72 hours to pass from your mouth to your anus it is only actually in your gut for about 12 hours so a lot of work needs to take place in a short amount of time.
Bacteria cover every available square inch of your intestinal tract and break down the food. I always envisaged them as having teeth and acting like a sort of mini Pac Man as in the very old video games. However, that's not the case.
Instead they produce enzymes and these are responsible for every metabolic process in your body ? all the building and all the repair. They are the molecules that digest food and deliver nutrients. Unfortunately the body cannot produce them and they have to be replenished.
You can find enzymes in raw food like fruit and vegetables but they get killed off at 116 degrees. Since my son never ate raw food and wouldn't touch fruit and vegetables he didn't get any natural enzymes. It's no wonder he struggled.
Now, however, he gets the enzymes from the probiotics and the nutrients from the wholefood culture they are grown in, as well as all the other vitamins, anti-oxidants and immune stimulators. It shows.
Next week we go to look at a possible semi residential placement for him. I don't want him to go but he has a need and a right to grow up and to make his own way in the world without having me with him all the time. I feel happier now his seizures are under control with medication and his diet has improved so much. My biggest fear whenever we went anywhere was that he would go hungry because he couldn't get the type of food he would eat. Invariably I took food with me and always our suitcases were much lighter on the return journey.
As for him going to a residential home I tell myself it will be like my "normal" son going off to university. He needs to have fun, to learn new skills and mix with people his own age. More importantly he needs to become more independent. After all I won't be around for ever. I know it doesn't always work out that way but in the normal scheme of things I should die long before he does. Then what? The earlier he learns to live without me the better.
I know it's for the best. It just doesn't feel that way. As I said, this is not an ideal world.
For information on the World's First probiotic super food certified organic to food standards see http://www.probioticsforhealth.com
Jean Shaw is the author of I'm Not Naughty - I'm Autistic - Jodi's Journey and Autism, Amalgam and Me - Jodi's Journey Continues see http://www.jeanshaw.com/
Labels: abilify_autism, acceptance_autism_book, activity_autism, adult_autism, america_autism_society
