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.

think first, share second

Parents of a child with special needs never need to be reminded of everything they have to worry about.

The most prevalent concern is their child's future. Other challenges will come and go, but the future available to their son or daughter may forever haunt them until the day they leave this earth.

I refuse to believe that the best my son has to look forward to is a lonely life in his golden years. If I went around focusing on that, I'd have to medicate myself to numb the pain.

I do accept that my son will have a happy, fulfilling life. People like Hayden, and Hayden likes people. That will never change.

I wish that the other people-- the ones who don't think before they share depressing, unproductive thoughts-- kept their thoughts where no one else can hear them.
I am sharing mine because they're worth listening to.

You have a tough day? Vent. I do. It's healthy. But don't go around making definitive statements that circumstances will never change. It's one thing to raise awareness, and another to raise fear.

Do you really think society would have come this far if we focused on the latter?

We are all in a much more optimistic place than any generation before us. And our children have reason to be, too. In the meantime, while we spend our waking hours advocating, thinking, preparing, and so forth... I hope we all agree on the end goal.

Our children will have unprecedented opportunities.

the "c" word

We arrived at the principal's office on Thursday afternoon to resolve our questions regarding this new Multiply Disabled (MD) program.

He is a nice man. He stood as we entered his office, smiled, and extended his hand. The Child Study Team (CST) lead was there as well, and it wasn't until the start of our meeting that we learned the case manager was in fact joining us.

Communication. Information is useless without it.

So there we were assembled around the meeting table in the Principal's office, with Dan on my right.

I know the woman to my left (case manager) is on the defensive for feeling like I went over her head. Which I did.
I know the woman to her left (her superior) is all too aware of the fact that the principal shouldn't have to be involved in these types of discussions. Which he shouldn't be.
And I know the man to her left, is in agreement.

But when I've repeatedly asked our Case Manager the very same questions I posed to the Principal, her responses were vague and often contained, "I'm not necessarily privy to the same information on an administrative level."

And when I've repeatedly asked her superior, the CST lead, her responses were centered around staffing the MD program (which still doesn't tell me about the program itself), and often contained an impatient, pushy, and quite confusing summary of why this new program would supposedly meet Hayden's needs vs the current one.

I don't want us to ever be "those parents" that the school begins to resent (for lack of a better word). But the fact is before the CST was suddenly outsourced as of a couple years ago, due to budget cuts, we never experienced this sort of miscommunication. Not to mention the fact that the whole economic climate also contributed to our question of funding this MD program, and nearly made us suspicious of some sort of hidden agenda.

The Principal spoke first and maintained that the current Language Learning Disabled (LLD) class Hayden is in, in the morning, has been functioning as both an LLD and MD class. And that the LLD class is going to grow, and there would still be a need for an MD program.

In short, the administrators agreed there was an academic need for this MD classroom and money became available to create it. In the words of the principal, when we asked why the urgency (mid-year) we were now being told it was a simple opportunity "to strike while the iron was hot". To translate, it is realistic that there may be more fiscal cuts any given year. So if their central office is suddenly telling them they can budget the money now... spend it.

There are legitimate plans for the program to grow, and in the meantime they may combine with the LLD class for certain activities. So to calm one of my fears, no, this MD room is not an indefinite class of two. 

But when the only comfort that Hayden's case manager could previously offer us as far as the program growing, had something to do with the idea of a child possibly moving into the district at any give time? Well that's fascinating. We've been trying to sell, and buy, in this exact district for more than a year now. Our own Realtor told us that over a recent 12-month period, a whopping 13 homes sold in this immediate area. But hey who's to say that a bunch of kids won't suddenly move here and all of them be age-appropriate, and have the need for, this exact new program.

The fact is, I do appreciate where they are coming from (both the case manager and the CST lead). The case manager was simply hired by the district (less than one year ago), already the second new staff change since the recent budget slash, and forced to get up-to-speed on her own new case load in a very short amount of time. To add insult to injury, she's also working with a CST lead who was basically dragged back into this situation after already having one foot in retirement.

All this because our governor mandated the most drastic (needless to say, unprecedented) cuts, which basically forced the education administrators between a rock and a hard place. And all staff members were in danger of that chopping block, including the ones that were hired to accommodate children with special needs. "Politics" is as much a four-letter word as any of the others.

Clearly we are not oblivious to external circumstances, but obviously we can not just go about accepting whatever anyone suggests for our son. So when something unusual happens like an unexpected program popping up, mid-year no less, and every time we pose questions we are getting vague answers... we will never simply oblige. Truthfully I think the administrators should be more concerned if we did.

The woman who used to be our point person on the CST, prior to the "team" being outsourced (if you still want to use the word team), had her doctorate in child psychology. She was smart, caring, tough yet logical, and honestly just paid attention to all perspectives. She was our go-to for all things Hayden-related. Our first line of defense for seeking, or discussing, information. I only knew how unusual this was from the horror stories I'd learn from other parents of children with special needs, particularly within the community of those affected by fragile x. Each state has their own resources, some of their own laws, and certainly not every family is going to be so fortunate as to have the best team fall in their lap.

But when we were having our big-little meeting in the principal's office and the woman to my left finally chimes in to defend herself, I refuse to sit there like I don't know better. She is going to repeat the whole idea of not necessarily having all the information, vs the administrators (gesturing to the people to her left), and offering to define her role to me... no. She is not just a liaison. I know our resources and she best not suggest, especially right in front of these higher-ups, anything contrary.

I turned my head to address her directly and before I knew it my almost-shaking voice spoke (something to the effect of), "Actually, in the past our case manager was the person who held all this detailed information. So unless the role has changed, that is what we're accustomed to."

Fast-forward to the closing. We were all in agreement that H would continue to arrive to the LLD class in the morning for the remainder of this school year, and then a regular mainstream homeroom beginning in September. It is a big deal to us that he enter school and report to a room with other students (plural)... and have a sense of belonging... and have a typical place to put his bag and hang his coat.

Next week we will iron out a more detailed scheduled and sign on it, but it will look like the aforementioned. Then he will go to this MD room, but only during the morning when he's not in his individual therapies. The goal is to have the majority of his afternoon continue to be mainstream.

Oh... one other recent development...
camp.

The director from that day camp we're hoping H can attend, did go to the school to observe him. She was definitely optimistic upon meeting him so even though we have many more details to consider, I am trying to be optimistic as well.

She also told me a couple things I already know but will never tire of hearing: his teacher is fantastic, his personality is infectious... and that smile. 

exactly my point

I believe I mentioned something about the recent birthday party in my last post, for a boy in Hayden's (mainstream) kindergarten class. Dan and I were slightly concerned about the fact that it was a bowling party since the first time we tried that with him, it didn't go over very well. We took him bowling with my parents and he accepted wearing different shoes pretty well actually, but it's loud in there, a lot of people, lights etc, just an over-stimulating environment. Not to mention the waiting in between turns is not easy for H.

Well, at the birthday party his classmates were so happy to see him (the birthday boy even gave him a little hug), that we were optimistic this could go much better. Perhaps he would follow their lead and not be as affected by other factors.

Overall Hayden did very well, but he did become anxious and upset near the end of the first game. The break for a pizza lunch helped, but we could see H sort of having this internal struggle between wanting to be there but having a tough time handling it. A few of the other classmates were noticing, just glancing every now and then. Not mean or anything... they are somewhat accustomed to his occasional behaviors from school, so it's not different. But if I was in their shoes, I would notice too. Especially at that age.

There was a lesson for me in all of this aside from the fact that we need to keep including him, and the worst thing we could have done is kept H home just because we knew it might be difficult for him. So that wasn't even an option.

But the real learning experience...
I emailed some pictures to the birthday boy's mom. She sent a message back to thank me for sending them, and also replied, "I'm glad Hayden had a good time, [he] really likes him so if you want to ever get the boys together for a play date let me know."

I cried.

Granted I was just watching this episode of Parenthood where the character of the kid with autism has a play date with a classmate who is in a wheelchair... not to mention I'm nauseous with anxiousness over a meeting tomorrow... but still. This is exactly my point per my previous post. Hayden needs to be around other kids, and other kids do enjoy being around Hayden. They really do.

The first thing Hayden said to me when he woke up this morning, was, "Thank you for coming to my party"... as in valentine's party for the kindergarten class. Emphasis on the word class.

I hope I have something else positive to report on, following our meeting tomorrow to finally iron-out this MD program situation. We've been summoned to the principal's office to speak with him and a member of the CST.

I hope they've heard my point.