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?

9 thoughts on “Who is on your team?

  • September 17, 2008 at 2:53 am

    Thank you so much for posting this. I am sure I am going to sound like I am obsessed, as Holly is olny 6 months old, but I am already worried about this transition, and have already asked her PT and her IDS/OT about this. They think I’m a bit crazy to be thinking about something 2 years away, but like you, I have created this team, with my Pediatrician, my OT/IDS, PT, Regional Center, and UC David Mind Institute. They are my safe cosy little support family.

    This is what I just can’t wrap my head around. Holly is in Daycare. I pay 1300$ a month for this. When she is 1.5 ish she goes to the Wobbler room, 2-2.5 toddler room, and at 3-5 the preschool room. Her daycare, eventually pre-school has nothing to do with her services. Her therapy is done at my home, mornings, lunch, evening, weekend. Ocassionally at the daycare with me. But these are all provided as Early intervention through the regional center.

    In MY mind, SCHOOL is when she goes to kindergarten, at 5ish. So I am not sure how the school system can even be responcible for providing services for her when she is 3-5, but I have been told, she ages out of her current services, and she can no longer see her IDS/OT.

    Does this mean she has to “change schools” go to a special school? aare there schools for 3-5 year olds that are free? does her private daycare have to provide service (they don’t even provide lunch)

    and then there is the fear of, what if she is doing well, becasue of early intervention, will she loose service, and then begin to fall behind, without it?? All these unanswered questions, and she is only 6 months old….

    So thank you for your advice, i didn;t even know an advocate existed, how much does something like that cost.

    Then thereis the question about insurance, my insurance covers like 20 PT visits, Do? people use medical insurance for these types of services?

    This is a whole new world, and it is scary out there…

    I just want to stay in my happy little support circle, but the thing I think that is bringing this up, is that 6 months went by and slapped me in the face, and my god i am back to work, and i don;t know where the time went, and it is only going faster by each day.. So it will be 2 years by the time i snap my finger… Yikes!

  • September 17, 2008 at 10:04 am

    If I had known what we were dealing with when Monkey was 6 months old, I would have been worrying about it too! I am not a fan of the unknown!

    What happens in that 3-5 year old range depends on your school system. Our school system has a variety of free public preschool classrooms for kids on IEPs, there are a number of neighborhood kids who also attend as peer models.

    If your school system does not have a classroom for preschool aged children then she may very well go to the same school that’s she’s at now and the school system will have to pay for it and whatever services she qualifies for.

    When she is 2.5 you’ll have to request that the school evaluate her. They’ll send their own PT, OT, ST and behaivor specialists to see her. They’ll visit with you and hopefully take into account any reports you can get from your current providers (but they do not have to.) They will write reports and at your first IEP meeting they will determine if she is eligible and what she is eligible for. Maybe she’ll only need OT or ST, maybe she will still need all services…it all depends on where she is at that time developmentally.

    Here the range for advocates is $50-$90/hour. We pay $60/hour I believe but my husband pays the bills, lol.

    We use our private insurance to cover visits to the Fragile X clinic and other evaluations. We have also used private insurance to cover visits to a psychologist when we had some behavior issues that the school was not helpful with.

    My insurance doesn’t cover OT (except for short term rehabilitation) but that is what I would use it for mostly if I had the option. The OT the school provides is adequate but does not deal very well with sensory issues which is a big part of Monkey’s struggles.

    Since PT is one of Monkey’s relative strengths we don’t use insurance to add services there but we could if he needed it and we may in the future.

  • September 17, 2008 at 5:59 pm

    I’ve never really had a “team.” Actually, when the boys were younger, I felt comfortable with the decisions that the school and I made together. Granted, at that time, I didn’t have as much knowledge as I do now, but overall, I think the decisions that were made were good ones!
    BUT, now that Matt is older, I wish I had some support. They just don’t seeM to “get it.” I’ve made it quite clear that although I want him in these resource rooms (where the work is a little above him), I only want him to be responsible for a small portion of what is being taught. He’s NOT on track to receive a diploma, so it doesn’t matter if he is doing all the work that is required for graduation. Yeah, that sounds simple enough…at least that’s what I thought. But no, I’m still seeing 3 pages of info come home, when really, 1 page (or even half a page) is all that he can handle. What does that do to his self-esteem to constantly see F’s, which is what he had for two of his assignments. Well, duh, give him more than he can handle, and yes he will not be able to do it. I would much rather they lighten his load, make him responsible for learning a small amount of info instead of overwhelming him, and then he might possibly get to feel a bit successful. In his IEP, the word “modify” is used, but there is no specific plan for the modifying. MODIFYING IS NOT TAKING THE SAME MULTIPLE CHOICE TEST AND JUST CROSSING OUT TWO OF THE FOUR POSSIBILITIES SO HE HAS A BETTER CHANCE OF GUESSING.
    We will be having their IEPs within the next couple of weeks…I’ll update.

  • September 18, 2008 at 12:11 am

    It’s funny, sometimes the things that seem the simplest turn out to be the big issues. For instance, we had a sensory diet in Monkey’s IEP last year. The school was supposed to develop and implement one. Simple, right? Eh, not so much. We’re going to have to ask for one again this year a bit more *forcefully* they considered allowing him to use a chewy tube as needed (not really optional he eats his clothes otherwise!) a sensory diet. Erm. No.

  • September 18, 2008 at 12:28 pm

    I don’t know who is on my team yet. IEP is at 1:20 MST. I think I will learn then. They better not try to push my buttons cuz I’m one stressed out raging momma!!

  • September 18, 2008 at 4:06 pm

    As far as a “team” goes it’s basically myself and the school professionals. My son doesn’t have any outside therapy or intervention. We don’t have an advocate go to the IEP’s my husband doesn’t even go to those, most everything is on my plater or the schools.

  • September 20, 2008 at 10:28 pm

    Wooooh, I’m exhausted just from reading all this! I’m with Holly’s Mom…I stress way early because the time just flies by and the next thing I know I’m not prepared for anything. I also wanted to suggest SSI. Have you heard of it? It’s based mostly on income, so if your family makes a lot, you can pretty much forget it. We have a one income family…teacher income, no less. It stands for Supplementary Security Income. One of the perks of it is Medicaid. Downside is since it’s income based, if we lose SSI, we lose Medicaid. But we have 2 of 3 kids on the list for CLASS and other Disability lists. I’m not sure if they’re are called the same things in other states, but those organizations are Medicaid waiver. Problem is, here the lists are 7-10 years long! I just ran into a an aquaintance of mine that has a special needs child and over the years she has learned much and is now an advocate that goes to ARD/IEP meetings. I’m not sure if she charges, but I’m going to talk to her more about it. With Ian, he’s on his 3rd year of PPCD. So, I’ve nooooo clue what we’re going to plan for next year. He probably won’t be potty trained and he can’t enter kindergarten that way. I know the school has to provide something, but my husband and I will live under a bridge before we see Ian end up in some of the ‘programs’ he would probably get stuck in. One thing we have going for us at his school is that it’s the same school where my husband teaches, so I have a hard time seeing them putting him in a PASS class for behavior. So, this is where I need help. What to do for next year. I absolutely feel privileged to be able to hear and learn from all of you all. So just know that it’s not a waste. You all spur me on!

  • September 22, 2008 at 2:32 pm

    We unfortuately don’t qualify for SSI or any of the other programs in our state for supplemental insurance. It’s really too bad b/c my private insurance leaves large gaps in services (OT in particular which is the truly vital area for Monkey.) I’m actually contemplating leaving my job to find another with better insurance which is just silly to me but that’s the only solution I can come up with. Paying $75/15 minute session for OT is just not feasible. That would be $1,200/month for OT alone. Eep.

    I don’t think kids on IEPs can be held out of kindergarten for lack of potty training. I know they can’t here. It becomes one of their “accomodations” on the IEP. There would be some kids who’d never be able to go to school if that were the case.

  • September 22, 2008 at 2:34 pm

    Bethany, that’s really a tough situation, I don’t think I would survive those meetings alone! Do you at least have a receptive team at school?

    I’d totally dump the advocate if I trusted the school to do the right thing 🙂


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