do they ever know they have fragile x?

The latest issue of the Quarterly arrived the other day. I went to put it in the magazine rack on the end table in our family room, and Hayden said he wanted a copy. (I must have accidentally renewed our membership more than once, so for some reason we do receive an additional copy or two.)

I gave him a copy but I told him it might be boring for him because there are no cars in there. I told him it's a small book about fragile x, and that he has fragile x. I have said this to him many times before, but he does not know what it means.

Since he was in one of his listening moods, I decided to attempt some sort of an explanation.

I spoke to him about his aides at school, and explained that the other students in kindergarten do not have someone helping them during the day. I told him this is because he has fragile x.

Then I offered my license plates as an example, because he realizes it has something to do with him but he doesn't know why. I said, "your fragile x is the reason my truck says CUREFXS. Because I want people to know about fragile x. People can change their license plate to say something, and that's what I changed mine to say. Cure FXS, because cure means to make it better and FXS is fragile x syndrome. Aunt Jenna did the same thing. We all want someone to fix fragile x one day. Then you can do more stuff by yourself and you won't need someone to help you."

"Fix blazer?" he said.

I brushed his hair from his forehead, and kissed his face. "The blazer is fine. It just has new license plates."

back to square one

So we recently learned that the trial we have been waiting to enroll Hayden in, for an entire year now, is finally underway. The clinic has approval to begin evaluating prospective study participants for inclusion.

Just last night I received a call from one of the Dr's in the study, and over the phone I answered a bunch of evaluation questions. As far as I was concerned, it was an exciting first part of the process and I was thrilled to get the ball rolling.

I grew somewhat confused as he's asking me about Hayden's reaction to certain situations, and I'm supposed to tell him a number from zero to three (three being the most severe). Question after question I'm responding, "no, that's not like Hayden," and "zero", and "zero" again, and "no he's the complete opposite of that..."
Until finally the doctor told me something I was not expecting to hear.

Hayden just doesn't fit the study criteria-- he does not even come close.

For this particular trial, the focus is apparently on people with FX who exhibit autistic-like characteristics vs ADHD characteristics; the latter being a much more accurate description of H.

After approximately eleven months of anxiously waiting, and investing so much hope, this was an extremely difficult truth to hear. Although I understand, and I would never support H participating in anything that is not appropriate for him, it is still terribly disappointing.

We will make an appointment to meet with the geneticist at the FX clinic again, and revisit other options. (Sometimes this journey feels particularly exhausting, already, and he is only a young child.)

Well, this afternoon Hayden saw a kindergarten classmate taking a walk up the road with her dad. He yelled out to her from the trampoline and luckily they had a few minutes to stop and join in the jumping.

And as I'm enjoying the sound of the endless laughter that comes from a couple of children bouncing away happily, I realize maybe I shouldn't be disappointed that H can not participate in the study after all. He has his fair share of fragile x challenges, but the fact is they do not include social withdrawal.
I hope the clinical study drug will benefit the other children allowing them to blossom socially as well. Underneath all of the fragile x "stuff" that gets in the way, they are all endearing.

We will have to figure out a different plan to help with Hayden's ADHD, anxiety, and other challenging behaviors. But in the meantime I'm going to enjoy watching that shining personality of his, and remain thankful that other kids who know him do enjoy being around him and the feeling is absolutely mutual. 

we should be handed only what we can handle?

I don't know if anyone else admits this but when you are a parent of a child with special needs, even though you know they have special needs & most of the challenges are a result of that...

sometimes, on some days, it's indescribably difficult to not feel as if you've failed at parenting.

When you have a child who is capable of understanding, and learning, and communicating-- even if on a different scale than a typical peer-- yet all these things that you have tried to make them understand, and help them learn, and speak with them about just simply fall flat, it feels as if you're a failure.

Of all people in the universe, if anyone can get through to your own child, shouldn't it be the parents?

the severe in perseverative

The other day one of those dreaded notes came home from school. H used the word "hate" in class. And even worse it was attached to names, so naturally some of the kindergarteners were upset.

We have heard that come out of his mouth in recent months, and have been working on trying to correct him. Sometimes his perseverative language is nothing hurtful at all, and sometimes it's even silly. But this time it is not.

I had such a lump in my throat when I read it, especially when the teacher offered one of the students names. A sweet boy whose birthday party H recently went to, and they even had a play date a couple weeks ago.

Fearing I would become too emotional if I tried to call the mom, I decided to email her instead to do some sort of damage control. I was also reminded of a book I once purchased, which addresses the ideas of acceptance: 'Special People, Special Ways' by A. Maguire. I have reached out to the kindergarten teacher to ask her to share with the class. As far as my message to the other mom, here are some excerpts:
"...[the teacher] mentioned to me that the word "hate" has been coming out of Hayden a bit much lately. There may have been an instance when he used it in E's presence. I know that Hayden genuinely likes E and does not mean some of the things that are blurted out of his own mouth. I am terrified at the thought of E's feelings being hurt."

"Sometimes Hayden tends to get stuck on words or phrases and repeat them for a period of time. When he is frustrated or just having one of those "off" days, he may use a word attached to someone's name even though he does not mean anything bad by it. We believe as his speech is still developing, so is his personal control of words and understanding of them."

"I wanted you to hopefully hear it from me first, heaven forbid E should come home from school one day and say that something happened. I know Hayden thinks that E is a fun kid..."

This angel of a mom saw my note, and responded that her son did mention that Hayden said something mean to him, that he hates him. She explained that Hayden didn't mean it and not to worry about it. She even told me not to worry, and added that as long as Hayden is up for it E would love to get together again.

As I sit here with welling eyes, I think most of the time parents of kids with FX focus their energy on helping them and also raising awareness. And perhaps they even begin to embrace the challenge as an opportunity to not only advocate for their child, but educate others. And of course keep hoping for a cure.

And I do feel that way most of the time.

But sometimes that 'hate' word, is the only damn word I can think of when I think of Fragile X.