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?