What’s next?

What to do, when what you want to do is not possible? And is it really not possible? This blog post has no answers. If you have suggestions, by all means, as long as they are respectful and you have even had experience with them, I’m all ears. This is more a bit of an insight into the ongoing challenge it presents when you have a child with autism, and trying to figure out what to do next.

We have seen amazing outcomes in running a son-rise program, and I’m confident that had we been able to run it right when we got here, with the financial help we get now, it would have led to total recovery. As it was, we had to modify it and run it on a very limited basis. One of the major challenges is that the Dutch are a very hard-working and honest people, but volunteering is also paid (?!). So when you hire the people who really want to work with autistic children here through what is called the PGB fund, they a) think they are the experts and know everything and b) they work hard for their money and try to “make results happen” instead of joining, so obviously that is exactly the opposite of the Son-Rise philosophy. Even the Autism Treatment Center says that it works best when run full time (so on a 40-70 hours a week basis), but of course a little is still better than nothing.

Now we are  wondering how to continue. We are legally required to send him to school, and when he comes home he is totally exhausted. I know the person responsible in our community for placing children in school will not allow for him to be taken out. At the same, time being in a highly overstimulating environment with noisy kids who have their own behavioral challenges, having to take the Taxi to school for at least 1.5 hours each day and being forced to cede control to an imposed schedule are certainly the cause for a lot of behavior we have been seeing, such as aggression, inflexibility, rigidity and repetitious behavior which currently is verbal obsession about numbers and especially the schedule/time. He is also still not sleeping well and waking up early and during the night.

His psychologist suggested the use of a certain medication which is an atypical anti-psychotic called Risperdal which helps with just the above symptoms. She is not the first to suggest it, so have his pediatrician and his psychiatrist. How far do we trust our medically trained people is often the question. They all pointed out that generally they see very good results in the majority of children. However just  about every medication when researched online you find all the bad things that can happen. So here is the scary list of potential side effects.

The severity of adverse effects often depends on the dosage. Risperidone has been associated with weight gain.[10] Other common side effects include akathisiasedationdysphoriainsomniaelevated prolactin level, low blood pressure, high blood pressure,muscle stiffness, muscle pain, tremorshypersalivationconstipation, and stuffy nose. In addition, risperidone treatment causesphotosensitivity, and patients should be warned to avoid prolonged exposure to the sun or to use effective sunscreen (SPF 15+). Other skin conditions have also been reported, including rash, xerosis (dry skin), acne vulgarisalopecia (hair loss), and seborrhea. At high doses, skin hyperpigmentation may also occur.[11] Irritabilityaggressionsleep disorders and eating disorders are also common due to the blocking action of serotonin and dopamine that risperidone produces. Also heart arrythmia, bradycardia and heart palpitations often occur.

Many antipsychotics are known to cause hyperprolactinemia, which may lead to hypogonadism-induced osteoporosisgalactorrhoea(unexpected female breast-milk production), gynaecomastia (male breast development), irregular menstruation and sexual dysfunction.

Neuroleptic malignant syndrome has been reported with risperidone, with at least two fatal cases reported. Tardive dyskinesia, an irreversible movement disorder, has also been reported with risperidone.[12]

So we can’t really run a full-time son-rise program here in the NL. We can’t really go back to the States because Aaron is finishing his  PHD here for another year. The diet we did with him helped but didn’t cure and now he is even more controlling about food. He eats pretty healthy though and does get a good amount of fruits, beans, veggies and good grains. The Neurofeedback we would like to do with him is hard to do because I still have a hard time figuring out exactly where to put the sensors. The integrated Listening system is a challenge because of his very limited attention span and being totally exhausted at the end of the day. So giving him medication is an option, but then we risk these gruesome side effects. Not giving him medication and we risk him missing several years of school because he can’t pay attention for more than 20 seconds. I still think that his ADHD problems are almost more dominant. And almost all of the medications for ADHD say…well it could either make the very symptoms you’re treating much worse, or it could totally help them go away. 50/50 chance?! And then I have this bone to pick with medications in general in that they treat the symptoms, not the problems. More interesting is WHY is he doing what he is doing, and then can we address that? But research is so very inconclusive on the matter and we are still left with having to help him as best we can from day to day NOW, not in ten-twenty years.

So what to do from here on out. If any of you have tried Risperdal successfully I’d love to hear from you, and likewise those who have had negative experiences, please tell me. What other option am  I missing here?

 

 

One thought on “What’s next?

  1. Hai vanessa,
    Just today i read about the son-rise program for the first time. i’m a mum of 3 wonderfull children living in the close nabourhood of zwolle, netherlands. My eldest daughter (10yrs) is diagnosed with asperger syndrome last year, althought i always knew she was a special child. After reading about the son rise program for the first time, i couldn’t stop searching for more information today because i’m really impressed by it. How is it working for ezra at the moment? I’m curious if you put him on risperdal after this post. My daughters psychiatrist did advise this for her as well some weeks ago. Medicines will be our last option but since eastern she’s getting LTO3, a nutritional-supplement. In canada it’s subscribed to children with adhd, but also it has good results with children diagnosed with ASS. It’s to early to draw a conclusion, but it looks like she’s getting a little more tolerant. Maybe LTO3 will be an alternative for ezra.

    Wish you the best,
    Groeten
    Annette

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