Life with Fragile X Syndrome

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?

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.)

We’ve been talking to Monkey for the last few days about starting school.  We’d put it off because of the IEP meeting issue and not knowing what to prepare him for but, obviously, if we’re not meeting until the 2nd week of classes we needed to prepare him for starting in his previous class.  So, we’ve talked it up.  Duhdee took Monkey to the open house last Friday.  Now we just wait and see.

Hopefully he’s matured enough over the summer that we do not hear any more about the substantially separate classroom. After making so many good gains last year in the integrated classroom I’m incredibly frustrated and angry that this is even a topic of discussion.  I don’t think he did as well as he could have.  I’m an incurable optimist and I think there is always room for improvement but I think that means he should get more support where he is.  I do not think it’s appropriate to move him to a more restrictive environment.

I’m sorry his teacher and the classroom aides felt overwhelmed last year.  I also don’t think it was Monkey that was the cause.  They told us, more than once, that they had a very challenging group of kids.  Some of the “typically developing peers” were struggling and acting up.  They told us, more than once, that Monkey was one of the best behaved kids in the class.

The main issues were his eating of non-nutrative items, his distractability/high level of activity.  Monkey likes to eat bubbles, shaving cream and the water in the water table he does it here and he does it at school.  We’ve tried several ways of stopping this but with limited success.  Any ideas?

Monkey does not stay with a challenging or novel activity for more than a few seconds.  Except for a few favored activities (painting, water play and computer play primarily) he will sit for 5-10 seconds and then run off and wander the classroom until someone goes to retrieve him and bring him back.  He will play again for a while and then wander off again.  No one thinks he’s ready for medication, not his teacher (I asked over the summer), not the folks at the Fragile X clinic and not the psychiatrist we consulted with.  So…any ideas?

One thing we are insisting on this year is that they actually develop a sensory diet.  It was in his IEP last year and they blew it off.  Not this year.  It’s too important.  I’m hoping that will help.  Otherwise I’m just not sure.

I feel as though figuring these things out is their job, this is their chosen career.  They’re supposedly highly qualified to teach in special education classrooms.  But ultimately the responsibility for educating Monkey falls on us.  We’re his parents and we love him more than anything…I just wish I had a ton of experience and training to fall back on here.  I’m feeling a bit alone and overwhelmed here.

Great way to start off a new year, eh?

I stayed up too late.
I woke up in the middle of the night and did not fall right back to sleep.
I woke up late.
My favorite shirt, the one I had planned to wear today, had a mysterious hole in it.
I had to go to work.

So, it sounds like the start of another typical day, right? Right. And then…

I asked for a kiss from Monkey, and got a great one.
I got another kiss from Duhdee, also a great one.
I blew a kiss to Monkey and said “I love you!” He responded with a wave (typical) and “BYE-BYE” (a first).

Suddenly it doesn’t feel like just another day after all!