Clouds, May 2010

Clouds, May 2010

Wednesday, February 11, 2015

a knock at the door

Many parents within the fragile x community have truly incredible blogs. Reading some of them is almost as compelling as watching a show you're hooked on, only they're not acting.

A couple of friends recently shared blog posts which stirred familiar thoughts in me. And furthermore, relatable challenges which have been on the forefront of my mind lately (funny how that happens).

Holly is a mom of two from Illinois, & here is her most recent update :)
Cindi is also a mom of two & she is from Colorado. This is her latest blog post :)

While one is a present challenge & another is a recollection from the past, both experiences are insightful, educational, & brave. I would encourage anyone to read them. Their words help shape assumptions into understanding.

I was going to discuss that it's no surprise how maintaining schedules & adhering to routine are definitely near the top of the list of priorities for most kids with fragile x syndrome. I have been working on this blog post on & off for a couple of weeks now (literally). Partly revising the draft because there are so many different points I wish to emphasize, & partly just a side effect of recent computer issues. But one thing rings predominantly true-- that many of the challenges we have, carry over to aspects of life that I wouldn't have expected them to.

Most of the time the routine of the day is mutually comforting because we all know it works. But that being said, there is not any one approach that will always be successful for any one challenge. It may depend on the day, the hour, the mood, the environment... as with any person.

Possibly amplified with a child who has fragile x.

But after an occurrence from just last night, I have one incident in particular that I wish to share. This happened to someone we know-- for real, not in quotations-- but the family experienced a situation that COULD happen to any one of us.

With respect to privacy I am not going to specify friend, relative, near, or far--
but I will say, it's a family with two children. I won't even mention son, daughter, both of one, or one of each. I will only tell you that the younger child is Hayden's age, has autism, but is high functioning. The older sibling is in middle school & has some behavioral challenges.

It was that sibling who happened to have a behavior episode at home last night, & long story short around 7- 7:30PM the family was startled by sudden, strong knocks at their door. A male voice exclaimed, "This is the police." The homeowners responded immediately & found two officers standing on their doorstep.

Dan & I have often admitted amongst ourselves that if anyone ever heard what goes on in our house when we are trying to trim Hayden's nails, one might suspect a murder scene. I don't believe we would ever be able to live in any type of building that has a shared wall (or walls) with others. And that's just nail trimming-- which by the way when we're done, is like an off-switch. H simply returns to a completely unphased state, immediately after the last clip of the clippers. I don't even want to help you imagine what it's like when he has a meltdown over something less controlled.

What ultimately happened with this family with the two children, is that someone down the street from them called for help because they suspected a domestic violence dispute-- this is as much as the police told them.

We should all be so lucky to live near at least one person who wouldn't ignore unusual signs or signs of a struggle. At the same time it's very difficult to be thankful for such neighbors during this type of instance-- who were hopefully just concerned & not disguising a noise complaint.

The officers were kind & understanding, but the humiliation & invasion of privacy during a vulnerable moment will leave its mark. The mom said the scene the officers walked into, was similar to something on a reality cop show-- one child reeling from their meltdown & the other running around in nothing but underwear, with two devastated & drained parents at arm's length.

But this is why I insist on talking about difficult subjects-- not only because sometimes we need to see both sides to gain a better understanding, but also because the only thing worse than our absolute toughest days would be feeling as if we're going through them alone.

Please keep the conversation going. And when appropriate please offer support, or even just an ear, to those who need it.

A tad different hearing a knock at the door & seeing a friend on the other side.

Thank you.


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