Saturday, March 13, 2010

Judge Not . . . . and an FM system

Judge Not

We recently completed Sam's MRI and it came back normal. It was nice to know that there are no obvious structural problems that will prevent Sam from developing.

The anti-seizure med has yielded unclear results. Sam seems to be making more direct and sustained eye-contact. His receptive language seems to have improved. Just yesterday he got upset that there was a hole in one of his socks so I told him to take them off and throw them away. He did it! That was huge since it was a multi-step process. His mood seems to be better as well. Since the gains are not dramatic, it is not clear whether the gains are due to the med or just development.

The neurologist has put Sam on an ultra-low dose of med number 2. I have been felt tremendous internal conflict over trying this medication. If you asked me a year ago about putting Sam on meds, I would have said certainly not - it would be a last resort. I have recently met a number of families with autistic children who have seen great gains on very low doses of medications. Many have mainstreamed completely by 10. The possibilities are seductive.

BUT, there is such a stigma attached to putting your child on certain medications. It is funny how no one says anything if your child is on asthma medication or allergy pills but as soon as it is for a learning or developmental disability, the judgements begin. Everytime I talk to someone about what is going on with Sam I feel like I have to make very clear that medication is something we are turing to after trying everything else - diets, supplement and tons of behavioral and speech therapy. Seriously, I feel like I have to justify the decisions I make as a parent - to people who don't have a clue what it means to parent a nearly non-verbal child with serious learning issues. I even felt guilty giving Sam Melatonin, a natural supplement, when I realized that he and I couldn't continue to function without sleep. I know that, as a society, we over-medicate. But I have tried not to let this societal truth affect my individual decision making process.

I do not move in this direction lightly or without thorough research. We are not giving up on other therapies but we have to look at Sam's quality of life. Obviously if he has a negative reaction to medication we will take him off of it but if will allow him to "tune in" and learn then he deserves that chance. We, also, deserve that chance. I accept that my life is now dedicated to being his caretaker but if a medication can make it safe for me to take Sam out in public now that he is outgrowing strollers and shopping carts then that is a good thing.

So, this is what we are trying now. I am going to try my best to ignore the slow nods and cautious questions that seem to occur when people are "shocked" at the idea of giving a child medication.

FM System
An additional therapy we are trying is an FM system Sam will try at school. It was recommened to me by another family with an autistic som who recently mainstreamed. Sam will wear a set of headphones and his teacher or aide, whoever he is woring with, will wear a mic so that background noise is filtered out and he can focus on the person working with him. Sam already wears headphones at home for "listening therapy" so that part won't be a problem. I am interested to see how he will respond the the teacher's voice. I brought up the idea to his speech therapist since she will need to oversee it and at first she felt he was too young - but she couldn't tell me why age matters for this type of modification. She spoke to the director and Sam's case manager and they both thought it was a good idea to try. A vendor is sending a sample for a 30 day trial. If we see any benefits the district will buy it for Sam to use at school. Hopefully it will arrive in the next week and we can find out if it helps.