Life with Fragile X Syndrome

This one isn’t about fragile X, it’s about respect.

Melissa

I’m not even sure where to start with this one. I’m sitting at my desk, surrounded by glass and curious co-workers, crying. There are a lot of days when I am brought to tears by one thing or another but it’s rare for me to be so upset that I cry at work. This, though…this…

Yesterday, on Facebook, I began seeing some of my FX friends sharing a news story. The headlines varied a bit depending on the source, but it all came down to a key point: a father in New Jersey sent his 10 year old son, who is non-verbal and has autism, to school wearing a wire and recorded his son being verbally abused and bullied. Not by other students…but by his teacher, his classroom aid and other staff members. I couldn’t bring myself to click on those stories to read the details.

I can so easily put Caleb in that story, too easily. He’s 8, he has fragile x and he can communicate but he’s not capable of telling us what he experiences at school. Every day we take him to the door of his classroom and hand him over to people we don’t truly know and we have to trust them to care for him and educate him and to show him the respect that he…that every child…deserves.

I’m not sure that other parents, parents of verbal children, of typical children, can even imagine the fear in our hearts that never, ever, ever, ever goes away. We live with that fear every single day, every single moment he’s out of our sight. I’m not sure that you can imagine the level of trust we have to show in people to simply be decent fucking human beings.

Special education teachers, aids and other staff members don’t have it easy. I could not do what they do, I struggle at times with caring for just one child, my child, and his challenges, but that is exactly why I’m NOT a teacher, an aid or another staff member!

Monkey is a pretty easy kid in most respects but he’s one of several and when you add his quirks to other kids’ quirks, to the need to balance the requirements of multiple IEPs and the pressure they’re under to teach these kids what they need to know…it’s not easy. And, they don’t get paid NEARLY enough for what they do. Srsly, our teacher is essentially teaching five classes simultaneously. FIVE. One for each of the four boys tailored to their specific needs PLUS the general curriculum that the typical students follow that they need to conform to in every other way, except for the additional requirements under the IEPs.

It takes a special person to do what they do day after day after day. But it doesn’t take a special person to treat these children with the respect they deserve. If you cannot treat a disabled child with respect you are…not just an awful teacher/aid/staff member, but you are an AWFUL fucking person.

So, clearly, today I finally clicked on one of those headlines and it was just as awful as I had imagined. This 10 year old child was humiliated, berated and demeaned by the very people who his father entrusted his care to each day. People who, for 6 months, complained because this child was acting out and violent…suddenly violent…after so many years. People who brought in a behavior specialist to try create a plan to address this child’s behavior when all they needed to do was stop being total…I cannot use the word I want to…fucking assholes ((Yeah, it was way worse than that.)).

And these people, with one exception, still have their jobs even though the father took this tape to the school. It’s entirely possible that some of the people on the tape…people who made fun of his child, made him cry, upset him to the point that he had a meltdown…are still working with his son because the school won’t identify them. How fucked up is that?

Please, watch the video and share it. This…it cannot be allowed to happen, to be hushed up and hidden…

**UPDATED TO ADD**

There is a petition on Change.org asking that the teacher…the person who should be held *MOST* responsible for what happens in the classroom, who was simply sent to another school in the district, be fired.

Cherry Hill School District: Fire Kelly Altenburg

 

IEPs and the fear of the unknown.

Melissa

It seems to be human nature to fear what we don’t know…I know it’s certainly true for me!  I’ve said before ((and most likely several times)) that the hardest part of fragile X is the not knowing. No one can tell you what comes next, no one can tell you that you will live happily ever after and I really, really, really needed to hear that. Not that I would have believed it for a second but it would have been nice to hear at least once.

When Monkey was 2 1/2 we had to start talking about moving from the warm and fuzzy world of early intervention into the dog eat dog world of public schools…and I was terrified. I was so scared of these “IEPs” and these heartless school administrators who were going to snatch my beautiful child from my arms and stuff him into a classroom the size of a closet with no friends. Oy vey! Melodramatic much??

But the thing of it was, I simply did not know what the process was. I didn’t understand the law, it all felt fuzzy and out of reach and I’m a freaking paralegal, I can and do read statutes! Frequently. But this was my child, my heart, the stakes felt so much higher and that terrified me. When I get scared, I get angry. So, clearly, I was going to be a joy to deal with.

Early on I realized that I felt better, more in control, when we had a professional helping us. We hired an amazing advocate, who happened to be a mother of a child with special needs, and we muddled along. You won’t have to read too far back to know that the process still wasn’t easy but there were never any screaming matches and I never once punch anyone in the head ((though there were times when I really, really, really wanted to punch somebody in the fucking head.)). I call that a win not losing.

Then something terrible happened. My advocate…had a baby. OMG.

Once again we were right back in that terrifying position of not knowing. This time, at least, we knew the process because we had been paying attention to our advocate. The real problem was that we still didn’t know the law. We knew that when we met with the district they would tell us…stuff…and we wouldn’t like this “stuff” but we didn’t know what to do about that. We didn’t know what to say to convince them that they were wrong about the “stuff” and that they should do what we wanted. See? Totally lost.

We finished Monkey’s last annual IEP solo and, though we stood our ground, we were still unable to convince the district that their “stuff” was actually “shit” and that they had no legal basis for pulling this shit on us. We got more of what we wanted than they wanted to give, just enough to leave us all unhappy, I think.

Now, obviously, C’s placement is awesome. We love his school, his principal, his teachers, his aids, his friends…everything. Love them. They rock. BUT, the fact remains…they…the district…the people on his previous “team” had no legal right to put him there, they had no legal right to take away things we had fought so hard, for years, to get for him. This still rankles. It still makes me think, I failed him. I failed to learn what I needed to learn in order to be a better advocate for him.

Last week, I took the first step in fixing that. I attended a Wrightslaw bootcamp and learned…not a lot…just what I needed to know to find what I need, when I need it, and keep this from happening ever again. I still have a ways to go, I need to read, read, read but I at least know where to start now.

I have a couple suggestions to share for any of you who are also blessed to have an IEP team…

  1. Bookmark this website: www.wrightslaw.com
  2. Look at the top left corner of the site and subscribe to their newsletter
  3. Attend one of their conferences, if this isn’t possible…
  4. Buy these books:
    1. Special Education Law
    2. From Emotion to Advocacy
    3. All About IEPs

If you are going to one of their conferences, don’t buy the books…they run the ENTIRE conference out of the book. There are no slides, no notes. EVERYTHING you need is in those books.

It’s rather nice to be regaining a little feeling of control over all of this…

Oh my gosh!*

Melissa

So the other day I posted about the scholarship fund and I was just told that you all are actually donating money for this! That blows my mind and makes me so, so, so thankful for all of you who have stepped up to help make this a reality for families who could not otherwise go! Since I am asking for non-FX friends to donate too I thought perhaps I should share a little bit more about what going to my first International Conference has meant to me.

Let me start with this, going to the conference in 2010 was completely and solely my idea. Please don’t mistake this for bragging or minimizing Eric’s involvement in any way. He is going to be thrilled that I am accepting the sole responsibility for that decision because it also means that I’m responsible for the avalanche of changes that have taken place in our lives during the last two years. I will no longer be able to tell him that it’s all his fault when I find myself having to step outside my comfort zone, yet again. And, trust me, that’s pretty much all he has heard from me since we returned from the conference!

So, fine. It’s my fault. Happy E?

When Eric and I received the diagnosis in 2006, we tried very, very hard to pretend that our lives had not just been derailed. Of course, there were realities that we couldn’t ignore but we would look at each other frequently and say, nothing has changed. He was still our little Monkey, we were still who we had always been. Nothing had changed.

We went to one local fragile X event and while we were astounded at being in a room with other parents, once we left, we went back to defensively insisting that we were not those people. We didn’t have anything in common with those people, the ones who’s lives were centered on fragile X. No, we were just a normal family that just happened to have this thing blowing the roof off our lives. Nothing had changed.

For four years we stubbornly held this line. Fine, when it came to school fragile X ruled but, outside of that, we were just your average family with a child who couldn’t talk, who wasn’t potty trained, who didn’t sleep. Just your typical family. When people said that they didn’t know how we did it, we didn’t know how to respond. Honestly, we weren’t any different from any other parents, right? Right! They’re nuts, what is wrong with them? Nothing had changed!

I don’t know why I decided that the International Conference would be a good idea but I did and pestered poor Eric until he had us signed up. He was humoring me, there wasn’t going to be anything for us there. I was afraid he was right, not that I ever admitted it. This was going to be one expensive waste of time, energy and money. We knew everything we needed to know already. Nothing had changed.

What can I say, we were a little slow to the party. Every bit of our lives as we knew it, every bit of our future as we had planned it…everything. Everything had changed.

Going to the conference didn’t suddenly open our eyes to what had happened to us. In many ways, I’m still figuring it out. What it did was give us the knowledge and the support structure we needed to survive when we could no longer deny that everything had, suddenly and irrevocably, changed.

These past two years have not been easy, not by any stretch of the imagination. Anyone who’s been subjected to this blog for any period of time knows it was bad. Sometimes it was way worse than I could even allow myself to convey here. Dark, angry days. Cold, shut off days. Never-ending, bleak days. Give up and go back to bed days.

But, I didn’t give up. The dark, angry, cold, shut off days passed. I kept getting up in the morning and putting one foot in front of the other because I love my son and my husband and because I had this group of parents who had it as bad, maybe worse, than I did who kept getting up and kept moving forward.

Not only did they keep moving but they were determinedly dragging me and every other struggling parent along with them. These people, that I was half convinced were superheroes in disguise, put together conferences, raised money, raised awareness. These are people that I had put up on a pedestal and convinced myself I could never be one of them. I would have continued thinking that if not for that conference. If not for the shared drinks, the shared tears, the shared laughs. I met them and loved them and discovered they’re as messed up as I am and they keep going and they keep dragging others forward with them.

How on earth could I look at these people, my friends…some of the best friends I have ever had…and not stand up? How could I go on being deadweight and be OK with that? I couldn’t.

They brought me forward to the point where I can say, “Yes, everything has changed. My life is not what I expected.” And be OK with that. They’ve taken me under their wings, into their hearts, into their lives and shown me that they’re human…amazing, driven and determined…but still just human. They’ve shown me in ways both subtle and not so subtle that I could be like them. I could do things to help other people.

Within days of getting back from the conference we took the first, small step in that direction. Each day we get a little more comfortable and feel a little more capable…all because of that conference. Starting the LINKS group, going to Advocacy Day, testifying at the State House, hosting our own conference…every single bit of it…because of that conference.

I’m so grateful that we can afford to do this. I don’t “deserve” to go, I’m blessed to go and I know it. Every one of the families depending on scholarships to put this conference within reach deserves to be there, needs to be there. Please help them get there.

You can donate directly to the NFXF (it’s tax deductible!) by going here:

Any amount will help, a lot of small donations will do great things. Please put “Scholarship Fund” in the acknowledgement section to direct your gift.

*The title is one of C’s favorite sayings at the moment. It’s stinking cute.

 

Excitement and disappointment.

Melissa

In July, in Miami, there is this little shindig planned. I think you may have heard of it, it’s the International Fragile X Conference.

If you are new to the fragile X world, it is pretty much the place to be as a parent of a child with fragile X. It’s five intense days of presentations on just about any aspect of fragile X that you can imagine and it happens every two years. The top researchers are there discussing their work, fragile X experts are there sharing tips and best practices and parents are there sharing…pretty much everything. There is a lot of learning and a lot of fun to be experienced.

If you’ve been newly diagnosed, don’t worry if you’re not ready to go just yet. We skipped the first two after our diagnosis and I nearly had to beat poor Eric to death ((Lovingly, of course.)) to get him to go in 2010. It is mentally and emotionally exhausting and, yet, oddly rejuvenating. When the time is right for you, you will be amazed by what you can get out of the experience. You will most likely move heaven and earth to be sure to attend every one after that as well.

That said…it’s not cheap. The registration fees are expensive then you have flights and hotels and food…it adds up really, really fast. One of the many terrific things that the National Fragile X Foundation does is offer scholarships to cover the cost of the registration fees to help ease some of the expense. BUT, they can only give back what has been given to them and when they have more need than funds…they have to make really difficult decisions.

The scholarship fund this year received an unprecedented number of requests, the Foundation was forced to close the application period early because they far exceeded the funds available. When you have been in a position for many, many years to say “yes” to everyone who asked, it’s very disappointing to find yourself having to say “no” to so many families. When you, as a family member, need that help in order to attend to learn what you can to help your child, it’s heartbreaking, I’m sure, to be told “no.”

I feel like a dipship for not doing this earlier but I guess I didn’t really understand what this fund meant to people, what the hope of going to the conference gave to people until I saw the reactions. So, I’m on a crusade. The early registration period for the conference ends May 15th and then the costs start to escalate. Between now and then I’m going to ask you all, FX related or not, to donate to the scholarship fund and turn some of those “no”  responses into “yes'” responses. Eric and I, through the LINKS group, are funding two more.

Donate directly to the NFXF (it’s tax deductible!) by going here:

Any amount will help, a lot of small donations will do great things. Please put “Scholarship Fund” in the acknowledgement section to direct your gift.

Now, about those happy stories.

Melissa

Who needs a few funny Monkey stories? I do, I do! Glad we all agree…

So, the fragile x sense of humor is strong in this child. I’ve said many, many times that he will do anything, anything, to get me to laugh. In fact, when he had the whole dentist visit in February, he put on the hospital scrubs because he saw Money do it and she laughed at herself, then she laughed even harder at Honey ((Who did look truly ridiculous, they do not make scrubs in size giant, FYI.)). In fact, Monkey demanded that they be put on him and, when I moved too slowly, he tried to stuff himself sausage-like into the infant pair he found laying around. Then he wanted me to laugh at him…so I did.

So, what does Monkey deem funny these days?

  1. Burping (a real one is best but he’ll fake it if he has too.)
  2. Making Money say “gross!” (he’s a nearly 8 year old boy, he doesn’t have to fake this one. Ever. He is gross. Boys are gross.)
  3. Tickling. (He needs to work on his technique, right now we’re somewhere between “Ouch!” and “What Are You Trying to Do?” Which is a huge improvement over “OMG Leave a LITTLE Skin Behind!” or “Are Those Nails or Daggers?”)
  4. Telling Money that he is “so cute!” (Well, duh, right? He is freaking adorable.) This is downright hysterical and he will launch into peels of laughter, which makes me laugh, which makes him laugh, which makes me laugh harder which leads to…
  5. Making Money laugh so hard she snorts. In the very rare instances that he can’t get me to snort organically he will begin snorting while he laughs which is guaranteed to result in the desired outcome *sigh*.

Beyond being a barrel of laughs, he’s also the sweetest little boy ever. No exaggeration. We are ((STILL, OMFG!!)) in the process of redecorating his bedroom and he will plant himself next to Eric and chirp ((I kid you not, the boy has chirp down pat!)), “Hi Daddy!” in the sweetest voice imaginable. So, fine, he does it 80-billion times in 30 minutes but it’s still cute…mostly because he’s not saying it to me. He also greets me with hugs and will say, “Hi Money, how you?” when I get home from work. It turns me into a puddle of goo every time.

Speaking of puddles…he’s also the smartest little boy ever. He knows where every puddle in Cambridge and Boston forms after even the slightest bit of rain and will direct us to  “turn right, find a puddle” or “turn weft, I see a puddle!” as appropriate. Even cuter is that he will announce “I see a green puddle.” on a perfectly dry day and when I ask him where he will wave his hand and gesture vaguely in one direction or another and say “Over ‘der!” expecting his minions to make it so. And when Monkey finds a puddle and Eric doesn’t drive through it for some strange reason, like it’s on the sidewalk, he will helpfully inform Eric, “You mit it!” with just the right amount of exasperation in his voice.

Ahh, I feel better now. You? 😉

 

Fragile X Syndrome, I’m scared

Melissa

There are some days when I log in here to write and I see something in my search terms that just sucks the wind right out of my sails. For instance, today I fully intended to come and share some happy, funny little anecdotes about my little Monkey and what is the first thing I see?

fragile x syndrome i’m scared

I just want to reach out through the internets and give you a big hug and I’m not a hugger, typically…but I know you really, really need one right now. Fragile X is one scary MoFo. Even after living with it for all these years, there are times when I am absolutely paralyzed with fear over what the future holds for Monkey and for me…

The only words of wisdom I can scrape together today are these…there really, really, really are happy days coming, even if it doesn’t feel like that right now and….it’s less scary when you aren’t alone.

My monthly dinner with my lovely FX mamas is this coming Wednesday and I know right now I’m going to feel so much better at 7PM when I sit down with them. I’ll feel even better 30 minutes later with a glass of wine in my hand as I snort with laughter over some ridiculousness fragile X has brought into our lives.

If you don’t already have someone to talk to, even if you don’t even know what you’d say, call me…e-mail me…leave a comment…whatever you’re comfortable with. My e-mail is melissa@fragilexma.org and my phone numbers are listed here: www.fragilexma.org. You aren’t in this alone.

Bending without breaking.

Melissa

It seems to me, at times, that a good portion of my life in the last 6 years has been spent exploring the question of just how far I can bend without breaking. I’d like to say I have an answer but the experiment is still in progress. Please stay tuned.

I have had this feeling for a while that my life is on the razor’s edge and that I must be very, very still and quiet or I will fall. But standing here, holding my breath, is still slicing me to shreds. There is no winning solution yet, that I can see, but I’m still looking. I have begun to think that the answer may be that I need to fall, that this place I’ve found myself is simply a dead end. I’m working up the courage to jump.

In the short term, my approach has been bury myself in work, in planning our conference, in making over Monkey’s room. Don’t knock it works! There isn’t space to ponder the bigger issues, the real issues, lurking beneath when you’re obsessing over just the precise hue of red to put on your 7 year old’s walls. Sure it comes across as being slightly obsessive and your friends might start poking fun at you but that is a small price to pay!

The problem is, I can see the end of all of my distractions and I’m starting to worry about what to do next ((Yes, I DO worry about what to worry about next. That is normal, right?)). I’m creating a mental list of “Things That Must Be Done” to stave off the inevitable ((in my mind)) slump that I will descend into as soon as I no longer have 80 gazillion things to ponder instead. I know I am not the only person who does this but, in what I like to believe is an improvement in my mental state, I can see how maybe this isn’t a good long term strategy…that maybe I should try to, you know, cope.

I would love to hear from anyone who has successfully stepped off this hamster wheel…

These things don’t just put themselves together?

Melissa

A year or so ago, Eric and I spoke with the Fragile X program at Children’s Hospital about putting on a conference geared towards professionals. After a few starts and stops, it stopped. It turns out it takes time and effort and more than one single brain cell ((all I’ve got to spare most days.)) to put together a conference! Are you surprised? No? Are you surprised that I was surprised? That’s what I thought.

Then Eric started thinking again, which never bodes well for me. A phone call and a couple e-mails later and TADA! We’re putting on a conference. I’m still wondering how the heck it happened but I’m also super, duper, wildly excited about it!

The very first conference we attended, about 6 months after our diagnosis, featured Tracy Murnan Stackhouse and Sarah Sharfenaker (better known as “Mouse”) and now we are bringing them back to New England for a one day conference. They are amazing presenters and, if you come, you will walk away with your head positively buzzing with ideas.

Plus, you can meet some of the coolest fragile X families around. We are doing catered boxed lunches to keep lines to a minimum and mingling time to a maximum, we really, really want the attendees to get to know each other a bit and make some connections!

This is the conference brochure with details: 2012 Fragile X Conference Brochure.

Please see the conference website for additional details: 2012 Fragile X Conference Website.

I REALLY hope we get to see you there!

 

 

I only show up when I need something!

Melissa

I’m not sure where my writer’s block is coming from, it’s incredibly frustrating to have so much to say and no way to get it from my brain to the screen. Perhaps more wine will help? Or perhaps less? HAHA! Ugh.

Anyway… I need something *SHOCKER*, I know.

I would like to ask each and everyone of you to go to the link below and take 30 seconds to fill it out. It will generate a letter to your members of Congress, asking them to keep the current funding, in the NIH, CDC and DoD budgets targeted at fragile X research, in place for another year.

This is the money that funds research towards a cure. Research, by the way, that is showing promise in treating Autism, Alzheimer’s and Parkinson’s. This is the money that keeps the National Fragile X Foundation operating so that when a family, like mine, has their world rocked to the core…there is someone to help them figure out how to find a new normal.

I’d like you to take one minute and look at your child. Imagine for a moment that he or she has Fragile X Syndrome. Imagine for one moment that you DID THAT to him or her. Imagine for one moment that there is absolutely NOTHING you can do to fix it. You can fight the school and insurance company for therapy and it will help, it will help a lot, but it won’t FIX IT. Nothing will fix it.

Now, tell me why, when we are getting close to medications that can FIX IT, you won’t send a letter telling them not to stop short of the goal line?

Send a Letter!

UPDATE! As of 11am we have…2,220 letters total (That’s up 175 letters from 9 AM!!) 82 Senators and 255 Reps (almost 60% of House) have heard from us. We need more letters especially in ID, LA, HI, UT, VT, MT (we only have 1 from each) and DE, AK, NV (we have 0 from these states).

Please write a letter even if your state isn’t listed here…we’re still missing some Senators and Reps from other states!

If you don’t know what to write for the Personal Statement you can say “I have friends who are affected by fragile X syndrome.“