Who is on your team?

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?

I am happy to report…

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!

Red Sox!

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*

The American Express Member’s Project debacle.

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

Kenneth.I.Chenault@aexp.com

Kenneth.Chenault@aexp.com

 

Executive Vice President and Chief Financial Officer

Daniel.T.Henry@aexp.com

Daniel.Henry@aexp.com

 

Vice Chairman, American Express Company and Group CEO, Business-to-Business

Edward.P.Gilligan@aexp.com

Edward.Gilligan@aexp.com

 

President, American Express Company

Alfred.F.Kelly@aexp.com

Alfred.Kelly@aexp.com

 

So, you’ll never guess what I heard today!

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!

A sensory integration prodigy.

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.)

Two days in.

We all know you can predict absolutely nothing about the school year after only two days.  This is just a mere update.  I don’t consider any of this indicative of how things will progress, OK?  I’m still fully prepared for year two of unabating school hell*.

So.

Day 1.  Monkey refused to walk into the school.  One of the special education teachers, but not one of *his* teachers, violated the no morning greeting policy before we even made it to the door of the school.  Duhdee tried valiantly to get Monkey to put his feet on the ground but basically carried him by his arms into the classroom.  No number of M&Ms would convince him to do anything more than stand just long enough for a reward before he slithered back to the ground.  FUN!

So we entered the classroom all sorts of strung out.  Convinced Monkey to play in the sink for a bit (his transitionary activity from last year) and then to play at the water table.  We snuck off with our tails between our legs and Monkey went on to have the most AMAZING day EVER based on his teacher’s description.  Monkey was very happy, huggy and giggly at pick up so that may even be true.

Day 2.  Monkey took a few voluntary steps toward his classroom today.  Of course none of them were sequential.  Duhdee still largely had to carry him into the classroom.  There were no chipper greetings this morning.  Thank god. 

Monkey played with bubbles at the sink.  If neither Duhdee nor I were physically touching him he would stop what he was doing and grab for us.  There would be no sneaking away today.  He decided he was done with the bubbles and we set off to look for another activity.  He was not letting go of me yet.  We found playdough.  He sat and he used a toy rolling pin and pizza cutter to play with the dough.  Totally appropriate play.  He was at a table with 3 other children and an adult (we still have no idea who she is, we’re awful parents.)  He let me go.  Once I was satisfied that he was engaged I kissed his head and we waved good-bye.  He didn’t cry or try to catch us so I guess he was ready.  *Phew*  And he was set up for another AMAZING day per the teacher report.  He played with paint (red and blue, it’s on his shirt,) he sat for “focused activities” for longer periods than he did last year, he enjoyed circle time because he recognized the games.  Focused activities and circle time were two big trouble spots last year that were used as examples of him needing more supervision.

So that’s it.  Two days in and he’s done OK.

*I either need to consider some happy pills more seriously or I’m just trying to hold my optimistic side in check, you decide.

 

First day of school!

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?