Author: Melissa

The 4th Annual Connecticut Fragile X Conference

Melissa

Once again Tammy and Andy Selinger are hard at work organizing their one-day Fragile X conference. This year the conference is on Saturday, November 19th at the UConn Health Center in Farmington, CT ((Very close to Hartford.)). The topic will be “Successful Transitions – Planning for the Education and Employment Years.”

Vickie Sudhalter, PhD and Laurie Yankowitz, Ed.D will be the presenters.

**So that’s the OFFICIAL information**

The following are the top TEN reasons I think you should attend:

  1. If you haven’t yet attended one of Dr. Sudhalter’s presentations, you simply must! We absolutely LOVED her presentation at the International Fragile X Conference in Detroit last year. We came home with a lot of very useful information we used to advocate for Monkey.
  2. We haven’t yet seen Dr. Yankowitz present, we’ve heard great things about her presentation in New York in June ((Which we missed, boo hiss for back surgery!)) and we are really looking forward to seeing her.
  3. Tammy and Andy do a great job making sure there is information for all ages, because they are awesome like that. It is always a day well spent.
  4. It always very reasonably priced.
  5. They provide lunch!
  6. In the past, Dr. Picker and/or Sharyn Lincoln from Children’s Hospital Boston have attended and presented.
  7. There’s always a Q&A session after, which is nice. It’s good to be able to pick the experts’ brains and you don’t have to strictly stay on topic so if you have a question…bring it.
  8. We have also bumped into folks from Seaside Therapeutics which is pretty thrilling…psht…I even got a hug last year.
  9. Because I said so.

and, finally,

10. I will be there ((Obvs, that should have been reason Number 1 but I did not want you to stop reading there.)).

I’m like a chipmunk.

Melissa

I have all these stories stored like nuts in my fat, little chipmunk cheeks and I think it’ time to share them or risk exploding and spraying chunks of chipmunk cheeks all over the place! Ewww, nice visual. Also, welcome back!

So…I now have so much to say I don’t even know where to start. Let’s start where I left off…the IEP.

We signed the hateful thing. We signed it so we could get Monkey into a classroom at a school that does inclusion well. They are the model for ASD inclusion in our district. There are a lot of things to love about the school. It has an extended day so Monkey will be squeezing an extra school day into each week. Because of the extended day, they are able to provide the kids with a lot more individualized support and a lot more enrichment activities. ((He will be getting extra gym, music, library, etc.)) Awesome. The school also has school uniforms. Not a big deal for Monkey, he will wear a collared shirt if we insist, but probably not awesome planning for some of the kids on the spectrum. Not our problem, I guess. I did at least raise the issue in a “what if this is a problem for a child” way, and I got two responses…one was, “Huh. I never thought about that!” ((And she was the school psychologist at the old school)) and the other response was, “Well, we won’t force them if it’s an issue.” ((Right, because the one thing our kids need is another reminder that they do not quite fit in with everyone else))

So all is set, the IEP we signed calls for them to provide us with all of their data every two weeks ((Any information they gather on his progress, the class has some ABA aspects so data collection is a big part of it.)) and a full team meeting every four weeks ((Fine, it says four to six, we are just going to pester them to set them up every four weeks.)). At one of our final meetings someone said that they aren’t used to parents who want to be so *pause* “involved,” I thought that was a nice way to communicate what royal pains in the @sses they think we are. 😉

Wait, did I say all is set? Oops…there is one little thing that is not quite settled. We received two letters yesterday. One from the transportation department offering us a bus for Monkey and the other from the district assigning Monkey to his 1st grade classroom. Both letters indicated that he would be attending a general education classroom at his old school. Nice.

I’m sure it’s all perfectly under control though ((Dang, I have missed my footnotes! Does it show?)).

What I want you to know about Fragile X Syndrome.

Melissa

Tomorrow, July 22nd, is Fragile X Awareness Day. I thought I’d take a minute to share what I wish the general public knew about Fragile X Syndrome.

  1. It exists.
  2. It may be in your family.
  3. You won’t know unless you’re tested.
  4. If you are planning to have a baby and you are offered genetic testing, you should ask about it. It isn’t a test a GYN will typically order.

I have a couple more things to add for those of you related to me on my maternal side (Coles, Gerrishes)

  1. It is in your family.
  2. There are 2 boys with the full mutation and at least 6 carriers spread through 5 generations.
  3. If your grandfather or grandmother was diagnosed with Parkinson’s (and I know some of them were) there’s a chance that it is (or was) Fragile X Associated Tremor/Ataxia Syndrome or FXTAS and you should be tested.
  4. You should be tested even if your kids don’t show any symptoms.
  5. You don’t want to wait until it shows up in your grandkids or great grandkids, it will rip your heart out.
  6. I can help you walk through the family tree if you are still not sure.
  7. I love you all 🙂

 

Visit the National Fragile X Foundation for more information.

Almost a month?? *blush*

Melissa

I’ve been reading blogs for a long time. I started with design blogs and then added mommy blogs, special needs blogs, fragile x blogs and adoption blogs…you can see the evolution of the last 7+ years of my life in my blog feed. Inevitably some bloggers begin posting erratically and then disappear. Sometimes they’ll come back months down the line to explain. Sometimes the blog just goes offline and you never know what happened. Either way it drives me nutty. I mean, honestly, how hard is it to cough up a few words once or twice a week??

I’m now getting a taste of just how hard that really can be. I’d love to explain what’s going on but I’m mystified. I can’t even bring myself to look at this blog right now. Duhdee keeps saying that it’s my new (ZOMG PINK) iPad but I could blog on it, there is an app for that. I just don’t. I don’t want to stop blogging, I get so much from it…from you all…hopefully this is a passing phase and it becomes fun again. Soon **pretty please?**

I feel badly for leaving so much hanging out there so let us have a quick update type post…

  1. Niece = lucky = mostly healed
  2. IEP = pure misery in written form = probably going to reject the re-write and exercise stay put (unless the school has had an epiphany in the last week *insert hysterical laughter and a coughing fit*…honestly I’m not sure which part of “We won’t ever agree to that.” they aren’t understanding)
  3. Vacation = pure bliss = a week in Maine with my parents. Auntie let me sleep in several mornings and Monkey went out on the boat with Grampa and Duhdee several times giving me some total “Me” time.

Good enough? Good.

I also feel badly for abandoning this blog even though I can’t stand to look at it (conflicted much?) so let us have a cute Monkey story to make everyone forgive my rudeness…

Monkey has begun to pretend to call people on my phone every morning in lieu of playing Angry Birds. His favorite place to “call” is the local pizza place an order for pick up for two large cheese pizzas. SO cute. Even cuter is when he pretends he’s talking about *ME* It melts my heart when I hear him saying “Pick up Money? Bye sweetheart!” Duhdee didn’t even realize that he calls me sweetheart until Monkey started mimicking him, lol.

OH! And how about I say something nice about school too or would that be going too far? I’ll risk it.

Today, Monkey’s summer school teacher told us that Monkey is the most “intriguing” student in her class. She said she can see that there is just so *MUCH* in there that she needs to figure out how to get out of him. It’s awfully nice to hear someone at the school say precisely what we’ve always said.

AND…

At the school meeting we asked about sight word programs vs. phonics programs and the school administrator said they had Edmark and that we could switch it in the IEP. The next day (Friday) we told the teacher that we were going to change it in the IEP and asked if she could get him set up over the summer and by the next Tuesday she had it set up with the reading specialist! Monkey is working on it 3 days a week. Color me amazed.

Too bad she can’t be his teacher next year 🙁

A whine and a smile…

Melissa

***Commence Whining**

Last night Duhdee and I had to finish all those forms you get at an evaluation for a child with special needs. You know the ones that are for ages 5-21, please circle O – Not able, N – Never, S – Sometimes, A – Always, or whatever.

Here is the whine in two parts:

  1. WHY do they seem to ask the same questions eight different ways?
  2. WHY do they not have a smaller age range? Fine, I get that he should not be expected to be able to handle small home repair projects at this age but every time I have to check off NOT ABLE makes my heart hurt…it feels so negative.

***End Whining***

***Commence Heart Warming Story***

This morning Duhdee and Monkey drove me to work, I had to run back in the house to grab my wedding ring while they got in the truck. While I was inside I grabbed these bangles that I bought recently as well.

When I got in the truck Duhdee told me that when I stepped out the door Monkey said, “Woah!” Then he wanted to try on my bracelets, lol.

God I love that kid…

***End Heart Warming Story***

 

Well, this is new.

Melissa

Duhdee, Monkey and I just finished an evaluation and I’m in a good mood. That never happens! Generally I leave the evaluations with a headache and a sick feeling in my stomach. I leave with all these reminders that our lives are not normal, we’re not even close but today…wow. I’d go back to visit this Dr. every day if I could, she made us feel so good about where Monkey is and where he is headed.

We heard things like…

  • “He’s so bright!“
  • “He finished all of the puzzles!”
  • “He definitely has kindergarten level skills.”
  • “He nailed all of his letters and numbers.” (Funny story there, the school says he doesn’t know them…we say he does…huh. Anyway, he was so into the numbers part that he kept naming every number he saw through out the eval and then in the elevator and then in the parking garage, lol.)
  • “He’s ready to read.”
  • “He’s so happy!”

Basically, everything we’ve been saying, I guess it’s not a surprise that I’m happy about it.

She did say that he is on the spectrum. He is not autistic but there are certain things, social activities and language skills that he is missing. He has some great skills but he’s one of those kids who is going to have to be taught every step of these interactions. She also said that it’s clear that we’ve been teaching him this stuff all along and just didn’t realize it. She also added that he WILL get it, she is 100% confident that he can master the skills.

So…not all roses…we wouldn’t have believed her if she had tried that on us anyway…but she listened to what we want for him educationally and she said she can definitely support that. Yay!

And when I got back to my office I had a message from the Assistant Director…we’ll have a meeting in two weeks to see what we can work out. I let her know that we feel like we’re pretty close which perked her up. I guess she was expecting someone unreasonable to call. I’m really glad I’ve been working on FRIENDLY thoughts these last few days. OH! And! It turns out our team leader IS available this summer depending on who asks *ahem*

Lack of words isn’t the problem.

Melissa

I have so many thoughts that my noodle resembles a Gordian Knot. I’m trying to both keep a decent working relationship with Monkey’s school district and serve his best interests. I’m not sure it it possible to do both now.

Let me first acknowledge my role in this current situation. I antagonized the team leader. She disliked me before we ever met face to face and that was my fault. I let my temper and my distrust and my anxiety get the better of me and, in one disastrous phone call, set the path of this year’s IEP into a downward spiral. I’m not letting her or the rest of the team off the hook but I want to be clear that the relationship did not become so fraught simply because of the district’s actions. My reaction certainly played a role in where we stand right now.

I have a lot of reasons why I reacted as I did, we do have a history of difficult IEP meetings, but I should have treated this year’s IEP as a new process not a continuation of the past. We had an entirely new team and they did not have any knowledge of our past experiences. I still feel that they handled the request for this year’s evaluations poorly, they should not have ever thought it was OK, under any circumstances, to ask for a blank check reevaluation. They should have followed the law and included in the request the specific evaluations they wanted to perform. Failing that they should have answered my questions when I inquired about the specific evaluations they wanted to perform. They should not have ignored my question and then pressured my husband to sign the form with vague threats that we were running out of time because IEPs had to be completed in April.

Even given all of that, I should have kept a tighter reign on my temper. I should not have talked down to the team leader. I should not have even argued the technicalities of the law with her even if I knew I was right. I know I was TECHNICALLY right. They were WRONG…but still…maintaining the relationship should have been more important. I’m not saying I should have done as they asked but I could have handled it better. I know this and I have regrets to be sure.

So where are we? School has ended. The district has closed up shop, the teachers, therapists and the team leader are all gone until a few days before school starts…and we don’t have a placement for Monkey. The team leader has washed her hands of us and left us with very few options. We can reject the IEP in part or we can reject it in it’s entirety per her final e-mail to us. I know that this is not in any one’s best interests. The district cannot adequately plan for next year and neither can we unless we first know where he will be. If left as it stands, Monkey will return to kindergarten in September and we will have to start over with a new team. No matter what happens, our next IEP meeting will be with a completely new team. Given that, I decided I could not make things much worse by…going over the team leader’s head. *Sigh* I know.

If I have to decide between being friendly or being right I need to come down more firmly on the friendly side in the future but if the only option left to me is being friendly or doing what it takes to fix the situation…I’m going to come down on the what it takes side. My e-mail to the Assistant Director received a response today, we’re going to chat to discuss my “concerns.” Now is when I start reminding myself over and over and over…FRIENDLY, we’re being FRIENDLY now. It pretty much means I have to leave aside all of my (legitimate) grievances and see what we can work out. I dislike it strongly when my head and my heart are on such completely different sides of a situation. Wish me luck, I’m going to need it.

What I really wanted to talk about.

Melissa

I felt compelled to update on the IEP progress, I felt badly for leaving it hanging. We have family and friends who read here and rely on it to get all the details of our painstakingly slow progress but my heart isn’t in it right now…my heart is with a little girl (Fine she’s nearly…17? That can’t be right! Regardless, she’s still a little girl to me!) who is laying in a hospital bed back home.

My niece was in a terrible, terrible car accident last Friday night. A car accident that could have and, if the State Trooper was right, perhaps should have…I can’t go there. It didn’t. She and her friend got themselves out of the car and climbed up an embankment to wait for help. She has a lot of healing to do but she is healing.

We took a drive to see her on Sunday, once we knew she was in a regular room and not special care. I had been so tense and upset, though I didn’t recognize how much until she opened her eyes and saw me. I have no words for the flood of emotions I felt at that moment, I told a friend yesterday that if this the only miracle I ever see in my life…it’s enough.

P.S. –  If you could spare some positive healing thoughts/prayers for her damaged liver, they would certainly be appreciated…she has a rather important exam today and she deserves some good news.

Our amazing IEP progres update!

Melissa

I know I’ve been quiet, I haven’t even visited the blog myself since that last post. I told Duhdee that it just really sucks when all the things you want to say, shouldn’t be said.

But, here I am to give you the latest and greatest report on our latest IEP. The last day of school is now 9 days away and we have met with the team twice and exchanged several e-mails and we have decided…ready for this?

N.O.T.H.I.N.G.

We are no closer today than we were when we walked into the first IEP meeting. OK, that’s not precisely true, the team leader has at least acknowledged that not only are we, his parents, part of the team but we are the ones who make the ultimate decision. So! That is progress, right?

We have also accepted placement in a summer program with a wrap around camp. Monkey will attend the school program for 3 weeks (we miss one week because of vacation plans) from 8 – 12:30 and then at 12:30 he will go to the camp portion where he will swim and take field trips and make art projects until 3.  Basically he’ll have 3 weeks of full days instead of 3 weeks of 1/2 days. We’re pleased…we can also send him for an additional week of camp if we choose…I suspect we will. There is more progress!

Look at me talking myself down off the cliff, aren’t you proud?

All that we have to do now is…find a classroom for the fall! Easy! Except it doesn’t exist in our district. Oops? We’re going to tour the substantially separate class they had already picked for him (before we ever discussed progress or goals…AHEM!). They are still stuck on lunch, recess and specials (art, music, gym) even though I told them point blank at the last meeting that we won’t ever sign off on that…not when he continues to make progress in an integrated class. The team leader very enthusiastically told us she would have our IEP to us no later than…yesterday. They say they don’t want to go to mediation (for good reason) and yet they’re going to send us an IEP that we will have to reject, at least in part. I guess that buys them a little more time to try to wear us down.

A fundamental problem here is that they want us to trust them to do the right thing by Monkey and we are unable to do that. They are unable to understand why we don’t trust them and yet continue to do things like…plan an IEP meeting knowing that the OT won’t be there. It is not OK for the OT to miss an IEP meeting for a child with Fragile X and it’s not OK to schedule the meeting knowing that the OT would miss it and not tell us.

At some time in the next week they will have his teacher hand us a form to sign excusing the OTs abscense. It’s just a formality she’ll say, as she did the last time someone missed a meeting. Of course, it won’t be just a formality when we refuse to sign it. Then it will be one more violation in a long list of violations of federal law. See why they don’t want to go to mediation? 😉