Brycen's latest happenings!

A few things to update from the last week or so...

1. Brycen is doing GREAT with his trial device! He knows how to navigate from page to page, how to clear the words, and how to turn it on/off. He uses it at home every day, has used it at a few speech therapy appointments, in the community a couple of times, and at school during Kindergarten round-up last week. I am also sending it to school with him this week as it is our last week of the trial and I think he is ready for it. The teacher and associates are just as enthusiastic about giving him a voice in place of the basic PECS cards he chooses from. I programmed in a few of their circle time activities so he can just push the button to tell them what "job" he wants for the day and what kind of milk he chooses for snack. Next Monday is his last day with the device and then we just sit & wait while people that don't even know Brycen make a decision on if this is the right device for him, will it benefit him in the long run, and will they pay for it. Very scary to think it's a possibility that it could be denied:(

2. We had a conference on Monday to discuss options for Kindergarten. It was agreed upon that Brycen will attend the every day/all day kindergarten class next year. While he cannot do all the things that the typical child going into kindergarten can do, he needs that consistency of all day/every day to make progress and keep his routine in place. His "score" on the kindergarten testing was actually a 22. When his teacher showed me the rating scale, the lowest category was 25 which was the bottom part of the 3 1/2 yr old level. While you would think this would upset me to see his score not even be on the chart, it actually reassured me that we know exactly where he is developmentally. 1 1/2 years ago at U of I, he was at a 16 month old level with communication...last summer at his first speech evaluation, he was at an 18 month old level...and now it seems like we may be getting closer to the 2 yr old level. While his actual speaking is not at this level, his other ways of communicating and understanding what is being asked of him is progressing him along. The discussion will continue over the next few months and through his IEP meeting in May about having a 1:1 associate with him. The feedback so far is that it is very important to do this to set him up for success!
In addition to all of this great news, we also learned that Brycen DOES qualify for Extended School Year! Last year, the old school district was very adamant that he had to show regression following an extended break from school before he could be approved...but this district says he meets other standards that qualify him. Mike and I hadn't even asked about this yet and were very surprised when his teacher pulled us aside in the hallway to let us know they discussed it. This is just one more thing that proves this school is very good at advocating and supporting special needs. He doesn't need to be in a secluded special needs school to get the support he deserves if he is here! We aren't sure of the dates yet, but I believe it is spread out over the summer over a few weeks. It'll be so beneficial to him to keep that "foot in the door" so to speak. As a parent, I will do anything in my power to prevent regression again. We've "been there, done that" when he was 2 years old, and when the district told us this last year, I was on a quest to get other services to keep him going (which is when we started speech and OT at the old hospital clinic). I don't care if that would have prevented him from qualifying then, but I would rather him be home all summer and me have to work my tail off to help him stay at his level, than to risk him going backwards again.

3. On a not so good note, Brycen did one thing yesterday that I have been dreading. When I had my back turned to him while putting on my shoes, he opened the front door on his own. We have been lucky in that his fine motor skills have not allowed him to do this before, but I guess he has now figured it out. As you recall, we recently started having him wear an identification bracelet for when times like this would come. He does not understand the lock on the knob yet, so we are safe for the time being as long as we remember to keep it locked. He is also very cautious about being away from us still, so hopefully that will be in our favor with this newfound skill. It's just really one of those moments that scared me and made me realize how important it is for us to be one-step ahead of his progress. I think we are doing pretty good so far and hoping we can continue to do that in the future as he gains more "skills."

4. Brycen has been consistently taking his new medication for the past 2 1/2 weeks. After some trial and error, we found we have to mix it with chocolate milk to hide the bitter taste. While we haven't noticed any improvements in his OCD behavior and anxiety, we have not noticed any side effects either. She did say it takes up to 4-6 weeks to see results and because he is on such a low dose, we have the ability to increase it too. We return to see her the first week of April to evaluate.

4. Here is the link to Brycen's team page for the Iowa Walk Now for Autism Speaks that takes place on Saturday, June 11 in West Des Moines. We have 23 walkers signed up already and would love to have even more come out and support him during this special day. We are also asking that everybody consider a donation to the team. No matter how big or small, every dollar counts towards research and support of those diagnosed. The statistics keep rising and it's very scary to see that...and we need all the help we can get to the bottom of this disorder! We NEED your help!
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=447324&lis=1&kntae447324=3DB34045D82E43CB8B00563398FA3B7A&team=4010797&tlteam=0