Those freaking IEPs.

I think one of the most stressful parts of having a child with fragile X is the whole IEP process. Obviously, we invest a lot of emotion in this process because these are our babies, our prides and joy and we want nothing but the best for them. Then we are thrown into this mysterious and bureaucratic process where we are being asked to trust total strangers to determine the educational fate of our children. We are turning over our kids to this *machine* for 18 years in many cases. It is asking way too much of a parent in my opinion but it is what it is.

There are ways to make this process less mysterious and I firmly believe that gaining a sense of understanding of the process, if not control over it exactly, can go a long way in making a family’s life better.

Since I’m a fan of lists, I’m going to list off the things I think you should do RIGHT NOW if you haven’t already. OK?

  1. Buy this book: Wrightslaw: From Emotions to Advocacy.
  2. Read it. Put AWAY the highlighter and resist the urge to fold down pages or take notes. Just read it. It may trigger lots of emotions. I found myself getting absolutely furious with the school district over all the NEW ways I was now aware of how they had screwed with us.
  3. If you find yourself getting absolutely furious, get over it.
  4. If you can’t get over it, consider hiring an education advocate. You need someone who is going to reign in the emotions from here on out.
  5. Read it again. I’m serious here, you need repetition to learn…everyone does! I know you’re thinking that you don’t have time to read this even once, never mind twice, but you need to make time for it. It’s important. This time highlight/fold pages/take notes to your heart’s content.
  6. Review point #3.
  7. Develop a vision for your child. I blogged about this for the National Fragile X Foundation. Create a vision statement for your child’s life…think long and short term. You can see our vision statement on the Foundation’s blog: A Vision.
  8. Develop a Positive Student Profile for your child that fits your vision statement. There are a number of samples on that same blog on the Foundation’s website, Caleb’s is here: PSP-1.
  9. Save this file: Learning Styles (this has a page for boys and one for girls.) At least two days before your next IEP, meeting forward it to the entire team and tell them you would like the “Accommodations” to take your child’s learning style into account. We have encouraged them to copy and paste the language right into the document!
  10. Arguably, this point isn’t directly IEP related but I am guessing that at least ONE of your child’s goals involves social skills. Am I right? Yes? Good. So I want you to go to the Foundations’ blog again and read this: Finding Hope in My Children, by Holly Roos.
  11. Look at the slides.
  12. Listen to the podcast.
  13. Ask your child’s teacher on day 1 (or tomorrow if you’ve already started school) if you can give this talk to his or her friends. No one else can do this for your child, no one else knows your child the way you do and, at least in my district, staff are not allowed to give any specifics because of privacy rules so they cannot answer many of the questions that students may have. You have to do this. Next Tuesday, I’ll be making the request of Monkey’s new teacher and I want to puke…so I know how terrifying it is. But really, if you want the best for your kid…and I know you do…you have to do this.

 

We are at 1/4 dose and…it’s not awful!

When we decided to take Monkey off Celexa, hoping that he might qualify for the STX 209 trial, you might remember I was a little apprehensive. OK, maybe more than a “little.”

Hope, it isn’t always pretty.

I’ll be totally honest, I’m still waiting for the $hit to hit the fan but so far, so good1.

We’ve tried to continue pushing Monkey a bit, while also keeping in mind that he’s dealing with a cwap load more anxiety than he has been for the last 18+ months, and he continues to impress us. We took him to the zoo this past weekend with his Grammy & Grampy Welin and he did awesome.

The Franklin Park Zoo is pretty large and open and it’s familiar so it was a good choice but it was exceptionally crowded for a few reasons:

  1. It was a beautiful sunny day.
  2. It was a beautiful sunny SATURDAY.
  3. The 39th Caribbean Festival was taking place (literally THOUSANDS of attendees, loud music (the bass could be heard very clearly at all times) and very slow traffic/weird traffic patterns.)

There were moments when he was less than thrilled but it was a typical toddler who won the award for going into “Bat$hit Crazy Meltdown” mode2.

He walked through a “jungle” looking at animatronic dinosaurs (moving and randomly making loud roars) very, very happily…he was enthralled, even. He visited just about every exhibit in the zoo. He played on the ridiculously huge and very crowded playground. He even went into the Tropical Forest exhibit which is inside, dark, humid and a little stinky which he never does3!

Overall it was a great day and he ended his day by coming home and cuddling on the couch with Grampy. Does it get any better? Grampy, for sure, would say no 😉

The real test, most likely, will be school. Which starts next Tuesday…which also just happens to be his first day with no Celexa at all. Perfect planning, eh?

  1. And, yes, I did probably just curse us! Thank you for noticing and please send wine. Lots and LOTS of wine. Just in case. []
  2. She was tiny and she had both parents struggling and racing for an exit. They could not even physically get her into her stroller. I felt really bad for them and really, REALLY glad it was not my kid! []
  3. We did bribe him with Ms but still, you canNOT bribe a child with FX into doing anything if they are struggling. Cold hard truth right there that so many people do not grasp. []

Things I wish I had known when Monkey was diagnosed.

Every once in a while I’ll skim through some of my older posts and find myself shaking my head over some of what I wrote. Perhaps it’s just wishful thinking but it seems to me that there was an awful lot of hysteria and near hysteria back in those early days that I just don’t feel any more. It started me thinking, what do I know now that I wish I had known as a newly diagnosed parent?

  1. There is no magic therapy/medication/supplement that will fix this and he will only be little once. Don’t lose those moments to fruitless searches.
  2. This is not my fault. Yes, they are my genes but I DID NOT KNOW and I deserve a little slack.
  3. There are going to be stupid people who say stupid things, who do stupid things, don’t let them ruin your day.
  4. There are going to be mean people who say mean things, who do mean things, don’t take it. Stand up for yourself, for your child.
  5. If it is working, you are doing it right. Forget the book, forget what your neighbor’s sister’s cousin thinks…you are doing it right.
  6. A day, a week, a month…it’s not a long time. It will be over in a heartbeat.
  7. You will be OK too, someday.1

I know there are a ton more. Are there things that you know now that you wish you had known then?

  1. I had to edit to add this because it is really true. You have to learn all of this in your own time but keep it in mind when you are feeling helpless or hopeless. []

Hope, it isn’t always pretty.

Last night, as I was getting Monkey ready for bed, he looked me right in the eye and his face lit up. It was one of those perfect moments when I just knew that he loves and trusts me implicitly. Naturally, I burst into tears and after putting him down for the night I spent hours crying. Why?

Today, after much agonizing, we are starting C’s Celexa washout period. And so it begins…3 weeks of gradually reduced anxiety medication, 4 weeks of no anxiety medication and then we see if we qualify for the STX209 trial. There is no guarantee that he will qualify. If he doesn’t, that is 7 weeks of heightened anxiety for no benefit to anyone. If he does qualify, it will mean 4 1/2 months of … well … we don’t know. Maybe placebo, maybe partial doses of the study drug, maybe a full dose.

Why are we doing this? Hope. Hope that this will help him more than the Celexa has. Hope that this will help a whole lot of other kids someday. Sometimes hope is a beautiful thing and sometimes hope is swollen eyes and an aching heart. Sometimes hope is a desperate decision to just do it, even when you aren’t sure you want to.

Right now the only thing I am sure of is that I am so fucking tired of having to make decisions like this.

If you want to read more details about what is involved in the STX209 trial, read this post from last September:

STX209 – You’ve heard of it, right?

 

We need a little Monkey funny, it’s been too long.

A few days ago, Eric and Monkey were driving me to work. As he often does, Monkey asked for “Donuts? Coolatta fipped cweam?” And, as he often does, Daddy cruised around the rotary and reversed direction to get to Dunkin’ Donuts. No, I did not complain.

A while back we introduced Monkey to breakfast sandwiches, specifically ham, egg and cheese on a croissant. Monkey was a fan. So, when we pulled in he piped up from the back, “Lunch?” Naturally…you eat sandwiches for lunch not breakfast normally, right? Eric went in and returned with 3 ham, egg and cheese croissants. Except they were on English Muffins. Crap. We didn’t have time to go back at that point so we ate the sandwiches. We all ate all of our sandwiches except for the egg in Monkey’s, which he graciously returned to me. Ew.

The next morning was the same. “Donuts?” This time I suggested we get Monkey just the ham and the cheese on a croissant because I’m smart like that. We all ate all of our sandwiches except for the cheese in Monkey’s, which he graciously returned to me. WTH?

As we approached my office building, Monkey piped up from the back again. “Brrread? More? Brrread, Honey?” Eric and I exchanged looks. There IS a Dunkin’ Donuts in my building. We first looked for a place to park so we could run inside for another croissant but had to give up. We were not paying $19 to park so Monkey could have another croissant. So Eric dropped us off and Monkey and I went inside, grabbed a croissant from Au Bon Pain instead because OMG, YUM!! And then I returned Monkey to the truck so they could go home.

SO this morning! We hear, “Donuts?” again. Feeling very smug I told Eric to go inside and get Monkey two croissants…let’s skip right to the part he likes. Eric returned with two bags, one contained our ham, egg and cheese croissants and one contained Monkey’s TWO plain croissants. I handed the bag to Monkey expecting excitement (yes, I should know better!) and instead got rejected. “Nope. Too big!”

What?? “Sorry, dude. That’s yours.” He finally peeked in the bag (yes, he rejected it without looking…you are not surprised by that are you?) and I got a, “Thank you, honey!”

A few minutes later I looked back and he grinned at me around a mouthful of croissant. I relaxed, unwrapped my sandwich and hear. “Haaaaammm? Haaaammm, honey?”

I pretended not to hear him. I also pretended not to hear Eric snickering at me. SMH.

Everyone will think they know what this is about.

You will all be right.

At the conference, during a carrier workshop, I listened to Dr. Randi Hagerman talk about the many symptoms that carriers have in common. It was an eye opening session. It was a relief to know that these things that I’ve thought were just in my head are real and, more importantly, there is a reason for them. A reason that is not…me being a hypochondriac or me just simply being weak. It was also, to be honest, a bit terrifying to think of the possibilities that lay before me.

There are so many physical and mental symptoms that seem to come hand in hand with a status as a fragile X carrier, it’s overwhelming. It’s also frightening to think that these things, that may come to steal away the comfort of my body and mind, are not within my control…they are within my DNA. I don’t like not being in control1.

After the initial helpless feeling, I decided I needed to focus on what I can control. Specifically, there is one thing I know I can improve and I know that improving this will help even should the worst come about in the future. I can reduce my stress. Stress=cortisol in your brain and cortisol in your brain is toxic. It destroys brain cells, it destroys the building blocks that make me…me.

No, I cannot eliminate stress…life is stressful for everyone…life is extra stressful for those of us with children with special needs…but I can do better. I began thinking about the major stressors in my life…my job, uncertainty and fear over Caleb’s future (both short and long term) were the first obvious two that came to mind. I can do something about some of that and I’ve already taken a major step in one of those areas. I could feel some of the tension leaving my body when I realized I was doing what I could, I was succeeding already.

Then, as always happens with me, I got greedy. I started thinking about other stressors in my life. The ones that don’t occupy a lot of my time or thoughts but flair up suddenly, unexpectedly. The medical tests I should have done but am putting off, for example, will cross my mind and I can feel the adrenaline (another stress related hormone) course through my body and for a few hours I’ll be thinking about all the ways I might die because I’m too scared to make the appointments I need to make (I’m not going to die, promise, but my imagination gets carried away at times!).

Another one of those sudden, unexpected stressors is anger.

Anger is an acid that can do more harm to the vessel in which it is stored than to anything on which it is poured. — Mark Twain

Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned. — Buddha

We all get angry, some of us forgive easily and others forgive eventually. Depending on the transgression…I fit into both categories. There are times that a quick apology erases any hurt. There are times when an apology and time are needed to accomplish the same.

There is a special category, however, for those who have hurt people I love. For those who have taken advantage of people who were emotionally or physically vulnerable. Also, especially, for people who repeatedly do both of those things. This is where I am struggling. I cannot forgive people who have hurt the people I love. I cannot forgive a hurt that was not done to me directly, it’s simply not my hurt to forgive and my anger is deeper…it’s rooted in my heart.

I have been reading quotes and doing an awful lot of thinking over the last week about this and I simply cannot come to any conclusion. I am harboring anger that I don’t want. I understand that I am doing emotional and physical damage to myself…but I cannot forgive them. Is it possible to lose the anger without forgiving? Not so far for me.

So, I’ll keep thinking. I’ll keep working at it. I’ll keep looking for the answer I hope to find.

And, in the meantime…

When angry, count to four; when very angry, swear. — Mark Twain

Fair warning.

  1. I think this too might be a carrier trait! []