So, it occured to me that it was going to take me a long time to get all my notes together and that the end result would be a very long post. I’ve therefore decided to share some of the tips, resources and information in a series of smaller posts.
Today is Resource No. 1 – Mouse and Tracy were asked about using “Time Out” for our kids. They directed everyone to this article from the April 2006 National Fragile X Foundation Quarterly. We’ve already altered how we use time-out as a result.
On Saturday, Duhdee and I attended a one day conference hosted by the Fragile X Society of Connecticut. The presenters were…Tracy and Mouse! The topic was “Hyperarousal, Sensory Integration and Motor Planning Issues: Day to Day Strategies for Home, School and Beyond.” It was the PERFECT conference at the PERFECT time.
We are sharing the materials and our notes with the team at the Wednesday meeting. The conference reinforced what Duhdee and I have known all along. Monkey is in the right type of classroom. It might not be the exact right integrated classroom but he is in the right setting. We are being beaten down by the team on this. I even told Duhdee late last week, “Maybe they’re right…” Of course, Duhdee has never waivered but I was loosing heart a bit. The opposition from certain team members seemed insurmountable.
They may still try to force us to put him in a substantially separate classroom but it’s going to mean going to arbitration because the conference has reinvigorated us. We were right last year and we are right again this year the integrated setting is non-negotiable.
If anyone would like a copy of the materials please e-mail me. I’ll share some of the highlights in another post as soon as I can get myself organized!
Not on our team. That’s about the nicest way I can describe the meeting. We go back for another meeting next Wednesday to discuss placement and finalize the IEP.
Last night we met with our special education advocate and today it has me thinking about how important team building is for our family.
We began the process of building a support team before we received our Fragile X diagnosis. Monkey began receiving early intervention services when he was 18 months old and the diagnosis was made 5 months later. It was not always a smooth relationship. In the beginning, I had a very hard time accepting all of these people into our lives. I did, at times, resent their suggestions. To be totally honest, I sometimes resented their very existence. It took a while for me to realize that it was OK for me to admit I didn’t know it all, that it was actually the smartest thing I could do. Once I came to that conclusion I was able to take advantage of all of the training and knowledge that they possessed. By the time Monkey was diagnosed we very comfortable with the team we had built.
After the diagnosis we had a period of time where we felt very much alone again. We still had our early intervention team but Fragile X was something new for all of us. We were all looking for direction again, wanting to be sure we were using the right approaches and targeting the right skills. We had, until that time, been working under the assumption that Monkey would catch up to his peers with therapy. The diagnosis, obviously, changed that.
So, we began the process of adding new experts to our team and seeking out new information. We were very fortunate to have two Fragile X clinics open in Boston in that first year of our diagnosis. We had the luxury of “trying on” both teams and picking who Monkey felt the most comfortable with. We had learned by then that if Monkey showed a preference for someone (or a distaste for someone) it was best to work with that and not try (in vain) to change his opinion. With the addition of the Fragile X team we began to feel as if we were on target again. Then Monkey had the audacity to turn 3.
We were now faced with the loss of half of our support network. The people we knew the best and who we relied upon the most were going away and now we were being sucked into a bureaucracy. We attended a “Basic Rights” workshop to get an idea (ha!) of what the laws were. We left feeling rather intimidated and we discussed hiring an advocate. Our EI coordinator, who had really stepped up and educated herself and the entire team about FX, vowed to be with us whenever she could in the process. We decided that with her support and the reports we solicited from our therapists that we could go to our first IEP meeting and work with the school. We really wanted to start off on the right foot and it had been suggested that hiring an advocate was unnecessarily adversarial.
We quickly realized that having someone to guide us was a very smart idea. The school had their experts and we needed an expert in the special education laws too. The laws can be complicated and they’re not very user friendly in my opinion. I’m used to reading legalese but I still felt at a loss. Not only did hiring an advocate lower our stress level since we were no longer the SOLE advocates for Monkey in the room but by introducing her right from the beginning meant that she was not perceived as an adversary. She was just part of our team. She comes to the meeting armed with an agenda and it is appreciated. She’s good at keeping everyone on track and minimizing the tangents. She’s also very good at helping them with the administrative aspects. Many of the people on the IEP team are focused on educating or providing service. They don’t want to worry about what type of meeting we need and what types of issues we can or can’t discuss.
So, to sum up. Teams are good. Get a team. Be prepared to add to the team, as needed. Advocates are good. Especially ours and if anyone in eastern MA is in the market for one, we will happily pass along her contact info.
Tonight I’m beginning another phase in my team building efforts. I’m going to a school committee meeting. I don’t really feel like I have anything to add right now since I’m such a newbie to the school system but I do have a lot to learn and it’s time I meet the people who can teach me about it.
Tell me, who is on YOUR team?
that school drop offs continue to improve! He’s still not quite getting to his classroom but he is walking to within 20 steps of the classroom door before he needs to be carried the rest of the way. We’re working at it, hopefully we’ll be in good shape within a week or two.
Of course, our IEP isn’t until Thursday and he may have to change classrooms after that meeting but…let’s not think about that right now!
Tonight we have a meeting with our advocate to prepare for the IEP. Tomorrow I will be attending a school committee meeting. Wednesday Monkey goes back to the toileting clinic for a follow up visit. Thursday is the IEP meeting. Friday Monkey goes to Maine to spend the weekend so that Duhdee and I can attend the Fragile X related conference in CT on Saturday. It is a jam packed FX/special ed. related week ahead and I’m surprisingly calm about it. Weird, but I’ll take it!
Last night Duhdee and I took my mom, dad and sister to a Red Sox game. It was so much fun! It was raining but we were under the roof. The game was delayed but we had plenty of time for people watching. Tim Wakefield was pitching but last night was one of the times when he was “on”. It was a fantastic time.
Monkey stayed home with a friend of ours and did just fine. The only thing I would change if I could was the 5:50 AM wake up…*yawn*
This is a very hot topic right now, you can read great pieces here and here. I just wanted to toss in my two cents.
I feel incredibly disappointed by the actions of American Express. I understand that tucked away in their FAQs they explained that voting was only going to matter for the final round but that is absolutely not how the project was presented publicly. “Your Ideas. Your Decision. Our Money,” seems pretty clear.
Our community worked so hard to spread the word and get out votes. We funneled so many people onto the American Express website to vote. Against the odds we were able to generate enough votes to put Cure Fragile X at the #5 spot out of 1,200 projects, only to be told it wasn’t good enough. No one on the advisory board knew what it was, there wasn’t enough “buzz.” I have to say any doctor on that board who didn’t know what it was and didn’t even bother to do a damned Google search, isn’t worth whatever he is being paid.
I’ll admit, Fragile X is not a “sexy” disorder. It f*cking sucks, to put it bluntly. But we all work so hard to help our kids day in and day out while we hope that some day it will get better for them and for us. To have a giant corporation wave this under our noses only to snatch it away after all the hard work we put into getting out the vote was like a giant middle finger from American Express and I, for one, will never forget it.
If anyone feels like contacting the company I suggest one of these executive officers. There are two variations for each e-mail because some people at the company have a middle initial in their address and some do not. I’m not certain these will work but it may be worth trying 😉
Chairman and Chief Executive Officer
Executive Vice President and Chief Financial Officer
Vice Chairman, American Express Company and Group CEO, Business-to-Business
President, American Express Company
Monkey said “Bear” several times. He’s been saying an approximation for some time, generally “Bee” or “Be-ah” but clear as a bell this morning we heard him saying “bear!” We excitedly told the teaching assistant and she went over to speak to him. He was, at that time, playing with blocks. When she asked him if he was playing with blocks, he repeated “block” to her. She then told us that yesterday, on their way to the park, she had told him not to drop the loop yet (the loop on the rope they hold when out walking off school grounds) and he replied “loop yet.”
Woot!
OK, not really…but I’ve been thinking lately about how good Monkey is, and always has been, at figuring out his own sensory needs. We tried a brushing program for a period of time when Monkey was two. We saw imediately that it helped and he saw immediately that it helped as well. He very quickly began running to grab the brush and then show us where he needed to be brushed (he’s always had a preference for his legs, this goes for deep pressure as well.) When he was done, he would tell us. It was pretty amazing. After about 6 weeks he stopped making requests and would let us know that he didn’t need it.
He also created his own body sock. Duhdee has a shirt he wore for soccer practice when he was younger. Monkey has claimed it. He will strip to his diaper (sometimes further, lol) and pull the shirt on. He enjoys the silky fabric and he will get his feet in the hem of the shirt and stretch. The shirt provides the same sort of resistance/deep pressure input that the body sock does and he figured this out all on his own. If he can’t find the shirt when he needs it he will ask for help. It truly does allow him to relax as this picture shows (yes, he is asleep, lol.)
