Angelman Syndrome, Life as an Angel

Tuesday, August 28, 2007

Well we just got back from meeting with Brady's school,it went really well. We met with two of the special ed teachers there,one of which will be Brady's full time teacher. We also had his previous prek teacher there,and had the school nurse there as well. We looked at three possible options for Brady. The first option was in the Junior High dpt. They have a program set up there,that teaches life skills,washing clothes,cooking,feeding ones self,etc. But this program has mostly teens,so we decided at this point,Brady is just to young. As he gets older and matures,we think it will be a wonderful option for him.
The next option was to have him in a regular type classroom,lots of books for him to eat,sinks for him to play in the water,and all kinds of other tempting items. This room would be way to overly stimulating for Brady at this point.But he would be with other kids periodically.
The next option,the one that we chose. They have decided to transform the conference room to meet Brady's needs. They will be getting special plug covers to cover up any plugs,moving out anything that might be hazardous to Brady. His teacher and therapists will work with him in this room,and he will have other students come in from time to time,to interact with him. Our goal at this point is to avoid over stimulation,get him used to being away from us and with other adults as well as some children. We didn't want to throw him into a classroom full of kids,it would be to much of a distraction for him and he wouldn't be able to benefit at all. So I guess this way will be a sort of scheduled interaction. They were all very willing to meet Brady's needs and so very helpful. But I think before today,they didn't realise how extensive Brady's needs are at this point. We did explain to them that we are very flexible about most everything,except for treating and preventing his seizures. I did explain that there will be days when Brady hasn't slept,and we might not be there and they were very understanding. I think that they are really nervous,but at the same time anxious to get him there. We talked to the principal and she thinks its a great idea for me to remain on campus for as long as it takes,so that if anything happens,they can call me and I can give diastat or anything else he needs. The nurse is very knowledgeable about diastat and seizures as well,so that's a big relief. She will be there with me,if Brady does have to have diastat. They of course will call an ambulance right away if something happens. As I said though,I will be substituting or volunteering at all times,so I will only be a hop,skip and a jump away. I think in some ways its a relief to us, and the staff that will be working with Brady,so it works out good for everyone. Brady will go to begin with,2 days a week for an hour at the time. When we feel the time is appropriate,we will increase the hours and days. But with never having been away from us,with the latest seizure increase,and the change in meds,we just think its good to take baby steps to start off. But Brady will not start until he is completely on the new depakote,and off the lamictal,since we don't know how hes going to react to either.
As I said,they have been wonderful and really put our minds at ease. They have been more than accommodating and eager to work with us on everything. So Brady will be starting Sept 28 if nothing changes between now and then,and we are very excited. I will post updates as they come. Say a prayer for Brady,he just started his new meds today.

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What is Angelman Syndrome?

About Brady

Read Brady's Story Here

I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

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