Life with Fragile X Syndrome

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.

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? 😉

Now I am going to talk about the IEP meeting…sort of.

Melissa

I’m not going to get into details because nothing was decided. The meeting ended up being a forum for the school to argue their case for Monkey’s placement for next year. We were not surprised by anything we heard. We had read the reports and could discern the direction they were leaning. Duhdee and I…disagreed with… their conclusions; conclusions they reached based on the district’s ((outdated)) special education philosophy and not targeted for Monkey specifically. That is to say, they are not picking on us. They are simply…misguided…in our oh so humble opinions ((Stop laughing!)).

There were a few things that were said that were rather upsetting ((UNDERSTATEMENT OF THE YEAR!)) and we are working on our counter arguments and, also, preparing our argument for the placement we believe is most appropriate for Monkey. This all sounds so civilized doesn’t it? Some of you know better 😉

SO. The details are unimportant right now because it’s an ongoing discussion. There is something very important I want to say about the last few days. I suppose I should start with my mindset going in to yesterday’s meeting. If you have a child with an intellectual or developmental disability, you will know exactly how upsetting these reports always are. Even when the reports are glowing in reference to the progress your child is making, they are devastating when they (necessarily) point out how far behind your child is. It is heartwrenching and it is disheartening.

Speaking for myself, they make me question every decision I make about Monkey. Would he be so far behind if we’d done more or made different decisions? I feel personally responsible for everything, right down to his very genetic make up, that has put us in this situation. I don’t blame myself ((Down Holly!)) but I do feel like I should have worked harder somehow. Self-doubt creeps in.

I left for that meeting with those awful, dark voices whispering in my head. I’m failing him. I have made the best decisions I could and it’s still not enough. Maybe they’re right. Maybe I just need to let them decide. Maybe they know best. Maybe Monkey would be leaps and bounds ahead if we’d just listened back when he was 3 and put him in a self-contained ASD classroom.

Fortunately for me I have this personality quirk…I’m allowed to question myself, to doubt myself, but no one…NO ONE…is allowed to talk down to me or question my intelligence. I am allowed to question whether I ((or you)) have done enough to bring out the best in Monkey but no one…NO ONE…is allowed to question his potential. To do either enrages me. To do both…not good.

Some of you picked up on how angry I was yesterday…and I was much more polite publicly ((Except for that unfortunate incident at the grocery store when they would not let Duhdee buy me the wine I had just spent 20 minutes choosing! Dicks.)) than I was in person. The texts I sent yesterday alone would probably win me a spot in hell 😉 It could have been really bad. I could have sent angry e-mails to the school. I could have continued in that useless spiral of anger but instead the most amazing thing happened.

You. You all lifted me up when I couldn’t see through the anger and hurt to do it myself. The support I received from other parents got me through that first rush of anger and despair so I could get to where I am now. Where Monkey needs me to be.

I have remembered why we have made all the decisions we have. I have remembered all of the inspirational stories you have shared about your perseverance and your kids’ resulting achievments. I have remembered that the only person with the power to hold Monkey back is *ME*. And I will be damned if I let that happen.

So, thanks to you all, we are re-committed to, and confident in, the course we chose 4 years ago. Monkey belongs. No matter how you phrase it, no matter how well meant it may be, you will not ever convince me that he doesn’t. I have the love and support of hundreds behind me…you will not win.

I am not going to talk about the IEP meeting.

Melissa

Traditionally when we have sucky IEP meetings we work it out over time so we’re happy. I’m going to have to assume that this will be the case again this time or I’m going to scream. Hmmm, wait, did that already. Perhaps I’ll text *someone* a string of expletives. Oh…wait, did that already too! I guess I’ll have to do something MUCH worse. I don’t know what but I’m sure it will come to me.

ANYWAY, what I’m going to share is how my little punk of a child continues to manipulate me and leave me HAPPY about it. We just had the following exchange (Scene, my bedroom, I’m lounging on the bed losing my shiznit on Facebook over wine nazis and school administrators who…wait…not going there…sigh):

Monkey: Money, birds?

Money: Go use your computer.

Monkey: Cold, Money. Cold. (Complete with fake shivering.)

Money (skeptically): You’re cold?

Monkey: Yes! Birds?

Money (even more sceptically): And playing birds will make you warmer?

Monkey: YES!!!

Money (grumbling) hands over the phone and then goes to brag to Duhdee how adorable her son is.

Rawr!

Melissa

Earlier today Monkey and I stepped out to escort the dogs to the facilities ((Helpfully provided by the city)). As we stood there, one of the little girls in the neighborhood, I would put her around 8 or 9 years old, walked past us. Monkey silently watched her approach, I was surprised that he wasn’t yelling “Hi! How you doin’?” at her the entire time she was in sight. Just as I decided he wasn’t going to flirt with her after all, Monkey threw his arms up, hands twisted into claws and yelled “RAWR!” at her. The poor girl just about turned inside out! I smiled and explained that it was his dinosaur impression…

Oh. Huh. I guess he’s a ladies man even when he’s in dino form.

Ten days, gone.

Melissa

I know I’ve been MIA here for a bit. Duhdee had back surgery and I took on all the household tasks for a while there. It’s not easy being two people, especially when you have a little Monkey who’s a little thrown off by all the changes in routine. Fortunately for me, we have an amazing network of family and friends, both near and far, who took very good care of us! I will never be able to thank them enough for all the kind words and prayers that they shared…or the cookies, meals and Monkey-sitting! The outpouring of love was…well, it still brings tears to my eyes.

THEN, Monkey had a birthday. He’s seven now. Seven. On the one hand, I am shocked beyond comprehension how we’ve gotten this far this fast. It doesn’t feel like it’s been seven years since I first held this little boy in my arms and fell head over heels in love with him. It feels like yesterday. Of course, part of that is the fact that he is so sweet and lovable that he makes me fall head over heels in love with him every day.

Then on the other hand, I feel every one of those years as a weight in my heart. I remember when Monkey turned two, we’d just gotten the Fragile X diagnosis and we were still in total shock. We felt like our lives had been completely and irrevocably destroyed. Every dream, every wish, every imagined life event…*poof*

There were two things that kept me going back then…my love for my husband and son and the hope that we’d have a cure. I decided that we would have a cure before Monkey turned eight. We had to have a cure by the time he turned eight or we would forever be stuck in this horrible world of Fragile X. Eight was so far away back then, surely it would happen. There was talk of a cure, there were treatments and exciting research just around the corner.

Eight isn’t so far away anymore.

A lot of things have changed for us since then, we no longer feel like we are stuck in any sort of nightmare world. We love the friends and family ((Because, yes, I now have a few new sisters and brothers I would not have otherwise met.)) that Fragile X has brought into our lives. We see the joy in having a child with special needs. I think we’ve experienced more pure joy in raising this little Monkey than many parents of “typical” children ever do.

Most parents of typical kids get to celebrate all those firsts…word, day of school, sleepover, driving, prom…but we celebrate every day. Every single word that passes his lips. Every block stacked. Every piece of train track assembled. Every question asked. Every answer given. Every single step forward that he takes makes my heart swell with pride and love. He takes my breath away. Daily.

So…what is the issue? Why is there still a weight in my heart? Apparently, some little part of my hindbrain is not with the program. There is this little tiny part of me that has, unbeknownst to me, been silently counting down the days to eight all this time. That little tiny part of me has started whispering…it’s almost too late…we’re never going to get away…we’re never going to wake up from this.

MOST of me is flipping that litte tiny part of me the bird and telling it to quit f*cking whining already. We’ve already woken up and we are exactly where we are supposed to be…we’re happy, dammit, what is your problem? The trouble is that while most of me can drown out the sound of that tiny little part of me…that tiny little part of me carries a blade. No matter how much I argue with the voice and win, it can still cut me and make me bleed.

My hope is that when we get to eight I can finally tell this little tiny part of me to suck it. It lost, we’re still here and we’re still happy. I’m just hoping that I don’t spend all of seven fighting this battle and missing out on the joy and love that surrounds me because seven is pretty f*ucking awesome and I don’t want to miss a second of it.

He always has his own twist!

Melissa

Earlier Duhdee asked Monkey to wish me a Happy Mother’s Day. Since Monkey doesn’t call me Mother or Mommy or any of those traditional names he put his own twist on his declaration.

“Happy! Money! DAY!”

And yes, I understand that’s totally improper punctuation but that is exactly how my boy talks. He lives his life in ALL CAPS and exclamation marks…I wish we were all so lucky.

**AND this should have been posted HOURS ago but someone (web server company) broke mah blawg!!** Jerks.