Thursday, April 19, 2012

I'm a mom of 3 children with Fragile X Syndrome

So, many of you who have the wonderful privilege of knowing our children know them as, generally, good kids.

And they are...

a lot of the times...

that you see them.

But, at home, well, that is a different story.

Home is where the heart is.

Home is also where we let our hair down (so to speak).

In other words, after a day of overstimulating situations and expectations, our children feel "safe" at home and can fall apart or decompress. Often, decompressing can be just watching TV, coloring, or playing a game on the iPod. There are many times, though, that it can be very intense screaming, sensory seeking behavior or even all out tantrums.

Often these tantrums or as I, and many moms out there, call them melt-downs are because of a change in routine or a bump in scheduling.

We went to the building that our children usually attend respite care to participate in a online video chat that would help funding needs. Anyway they had asked our family to make a "cameo" appearance for that and our kids seemed very excited when we approached the building.

Now, mind you, I prepped them all the day before and the day of that it was only to talk to people on the computer and not for respite care. All was fine an dandy until...

well, actually I don't know what it was that set her off.

She just melted.

Actually melted would be too mild of a term for this situation.

Sister completely and totally went ballistic! Really. She began to flail herself against the walls. Running crazily through all the doors, and sometimes it looked as if she would try to run through a wall. She was hitting herself and trying to hit everyone else all while throwing whatever she could grab hold of. She was doing all this while screaming, "Where are my buddies!!!????" It was like a switch went on. She suddenly realized we were not here for the reason she wanted to be there for, nor the reason we are usually there.

Because she was hurting herself and attempting to hurt others I had to grab her and wrestle with her in order to hold her tight and try to give some sensory input to try to calm her down.

That takes a LOT of strength.

She's only 6.

She is still very strong.

Heaven help me when she is 16.

Well, this isn't the first time I have had to do this with one of my kids. Sad to say. But, honestly, it is part of our lives.


We wrestle for sensory input that gets them absolutely giggling.

And sometimes we wrestle just to get them under control.

Poor things.

I feel so sorry for them that they have no way of calming themselves. It's really quite a sad thing to watch. You have to become numb to it as a parent of children with these types of special needs. Sometimes, though, even being numb still lets the tears well up in your eyes.

That night my stomach really started hurting. It had a hurt a bit the day before but, I just thought I ate too much (tee hee). But that night, after mine and Sister's wrestling match, I really hurt and I felt a bump above my belly button.

I love GOOGLE.

I typed in, "bulge above belly button" and got all kinds of answers.

Then I went to the doctor the next day.

And GOOGLE was right. I have a hernia.

The doctor asked if I have a strenuous job or lift things a lot...

 "I'm a mom of 3 children with Fragile X Syndrome."

In a perfect world that's all I would have to say and the doctor would have nodded her head and said, "Oh, ya, 'nuff said."

So I'll go have the general surgeon the doctor recommended tell me what he thinks the solution will be.

I have to wait for Monday for that.

They said no lifting or strenuous work til they can decide what I need to do...

again, I have to say,

"I'm a mom of 3 children with Fragile X Syndrome..."

5 remarks:

Chad and Tina said...

I love reading your BLOG! I loved this post and believed it to be entertaining, but I you inspire me - ALWAYS have!

Bonnie@TheFragileXFiles said...

Oh goodness. That's not fun but at the same time I was thinking, I wonder, if they saw Sisters behavior on the video.... That might have helped get the funding, right? If you're going to have a meltdown, do it in front of people who have to decide how much funding you get.....

Ethington Family said...

I am so sorry! I hope it all works out quickly! Rachael, you are an amazing mom! You inspire me always to be kinder and more patient. Thank you for all you do and I wish you all the best!

Crystal said...

Oh my. I hear ya! I have a nearly seven year old 59 lb boy with severe autism who I lift and wrestle a lot... hope you're feeling better soon!

Helena said...

I know somebody who has three kids with Fragile X--two boys and a girl. The boys are pretty much grown up now.