Clouds, May 2010

Clouds, May 2010

Thursday, January 31, 2013

a different perspective

This is an unsent letter to an old friend, who may or may not see this one day. I do not want to seem confrontational, or put someone on the defensive. I am just the quiet publisher for all of the "Haydens" out there who have ever been misunderstood.

Dear Friend,

The truth is, from the bottom of my heart, I enjoy seeing how happy you are. I mean that even though it sounds sappy (although I hope not fake), because in every aspect from your career to your beautiful family you have so much to be proud of.

I can imagine this is exactly what you hoped for when we were kids & that makes me smile inside. I DO know this is exactly what other people close to you hoped for, too. Even though you & I grew up in the same town, & we lived in nice homes, & we drove new cars, & we shared a lot of the same friends, & trendy clothes, & did all of the typical teenage stuff that teenagers do... I also know that the closer I got to certain people in my life, the more I realized how they may look the same part but be in a very different cast. For example, how someone "just like me" was actually dealing with a completely different family dynamic under their similar-looking roof.

At this stage of my life I have a much clearer perspective of the world around us, & when we were younger I was not spoiled in the traditional sense. I was spoiled the way some people assumed kids from Livingston were not: with love, more so than lavish. My weekly allowance was ten dollars & yeah, I had a nice purse to put it in, but I wasn't going out & buying a new one every week.

So allow me to reiterate... when I see you & your beautiful family, & how happy you are in your career, I can imagine this is exactly what you hoped for when we were kids & that truly does make me smile inside.

Gosh-- you & I had been out of touch for so many years now & until our recent reunion with mutual friends, I did not know when or if I might see you one day. I think we were all eager for a lot of catching up. We each know bits & pieces but for all of us, that book we see via social media certainly doesn't tell the whole story.

Well, part of Hayden's story is that his appearance is just like most other kids-- in height, shape, & every other way upon glancing at him. Ten fingers, ten toes, two eyes, two ears & a nose. But deep inside of him, on his X chromosome, there is a defect preventing his body from producing a specific kind of protein which we all need. This protein is not used in most parts of our body, but one of the organs that does need it, is the brain.

We do not expect everyone to know this so we explain it to them. I may never know exactly how you explained this, in some form, to your own children. But I do know you said something to your kids before they met my son. Because even when children realize there's something different with Hayden because of his speech or his behavior, I know they wouldn't realize exactly what it was. Heck-- there are brilliant doctors out there in the world who wouldn't know, either. Fragile x is still considered a rare condition. Even though it is the most common inherited cause of mental impairment, & the most common known cause of autism, it requires a constant building of awareness in a world where many diagnoses are simply misdiagnosed or undiagnosed altogether.

Being that you're a parent with a fair amount of experience in the field of education, I would have assumed that you knew what to say. But when your same-aged son was observing Hayden & then quite innocently made an unexpected comment to me, I knew he didn't come up with it on his own. He looked at me with sympathetic eyes & said, "It's so sad when they have that brain thing." I was unprepared for such a comment & the only reply that came out of my mouth was, "No it's not, it just means he's his own person." I barely finished the sentence when you walked over & quietly reminded him, "I said we don't talk about that". I pretended like I didn't hear you & we all acted like nothing happened. You were probably embarrassed, your son was probably feeling bad thinking he did something wrong, & I basically just felt uncomfortable.

Three things. First of all, your son did not do anything wrong.

Second of all, it wasn't until today that I realized what I wish I had said. I should not have simply answered that this just means Hayden is his own person. I should have accepted the curiosity & said, "Why do you think it's sad?"

Third of all, to that point, I beg your pardon but this is in fact something that we
do talk about. We need honest, productive conversations in order for people to even begin to understand Hayden. Do you know when someone asks me, "How's Hayden?" the first thing I answer is, "He's happy." This is the most accurate truth possible, because he does not know life any different. He literally wakes up happy. Every day of his life he is spoiled with nurture, which he so deserves, & he has arguably the most contagious smile in human existence. It is from a pure place, & it exudes real, heartfelt joy. These are the things that you should tell your son.

Hayden is an engaging child & you can tell your son that he loves school, & he loves his family, & cars, trucks, being active, playing with other kids, pretending to fix things, & cook. He also takes great notice of his environment-- the people, the conversations, everything-- even when you think he isn't paying attention. And actually, his intellectual capacity is far beyond perception because he has qualities we would not have been able to teach him. For example, he has a sense of humor & he's witty. He is also empathetic. So you should also tell your son that Hayden is very social, enjoys laughing with other children, & more importantly when they're not laughing he likes to make sure they're OK.

One of the differences with Hayden, is that sometimes he is in situations where there is too much stimuli. Sometimes he also has difficulty using his words. I am sure your son would understand that Hayden may feel overwhelmed, & this may cause difficult behaviors. Sometimes Hayden simply needs a break, because having fragile x makes it especially difficult for him to be in control all of the time.

Now that Hayden is in First Grade, this was my first year speaking with his classmates about Fragile X. I offered them a little rhyme. I said, "when Hayden is hungry he wants to eat; when he's tired he wants to sleep; when he's happy he wants to play; but if he's not feeling his best, he wants others to keep away." Just. Like. Them.

As parents when we have conversations with our children, we need to remember that what we say & how we say it can make all the difference. Since we usually have the most influence on their perspectives, we need to be responsible with this privilege. They are going to remember everything & they are going to think they are always right. For example, without even counting I bet any kid will tell you they have ten fingers... because that's what they were taught.

Well what if you said they really have 11? What if you told them to hold up one hand & count backwards from 10:
10 - 9 - 8 - 7 - 6 .

Six, plus their other hand which is 5, equals 11.

It's just a different perspective. And one that most kids, no doubt, would think is funny & clever. It's not sad that Hayden has a brain thing. He has something called Fragile X. It means that he learns at his own pace.

all have an opportunity to learn & to understand differences. The only potential sadness in this equation, are the people who do not recognize Hayden's potential.

I hope that I have provided you an opportunity to learn a different perspective, & more importantly, one that you pass on to your children.




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