Thursday, July 7, 2011

How do you win a fight?

First, you go for the eyes with all ten fingers.

Then, grab the face with a fingernailed death grip and bring the opponents nose to your sharp toothed mouth and clamp down.

While your opponent wipes away the tears go for the hair.

Don't just pull the hair.

Wrap your fingers near the roots of the hair, wind fingers around and yank the head forward while drooling  and biting on the scalp and hair.

Allow your drool to run down in the eyes of your opponent and then, when they are blinded, you go in for the full face scratch.

How do I know all these techniques?

You take tips from a tired 20 month old with Fragile X Syndrome...

I know, because I just lost a battle with mine.

It really hurts. Only those who have experienced this from children with disabilities can fully understand the intensity in these battles.

How can such a small, happy child beat up her 34-year-old mother?

I try my best to be calm and not rip her off my head (this is all while I am carrying her to her crib) because I don't want to further her intensity by adding to the anxiety and over-stimulation.

If I didn't know she had FXS I would probably not handle the situation very well at all.

But, because I know she has FXS I am empowered to overcome my human reaction to being beat up. I can handle it with patience and understanding.

What if I didn't know she had FXS?

What if I didn't know any of my children had FXS?

What if I were still looking for answers, or worse, getting the wrong ones?

How many mothers out there are fighting a blind battle?

This month is Fragile X Awareness Month with the Awareness Day on July 22nd.

PLEASE help me spread the word so that others can understand their children fully.

I created this flyer for all of you to utilize.

Hang it in your windows or in your car. 

Hang it at your church or at your work.

Email it to all your friends.

Post it on Facebook.

Twitter it.

Send people to my blog.

Tell people about it.

Hand out these flyers at a local grocery store.

Let's help raise awareness of Fragile X Syndrome and win the fight against the unknown.

Please download this flyer image and use it to distribute and raise awareness. 
(You should be able to right click and save the image to your desktop.)

3 remarks:

Anonymous said...

How does this compare to "normal" 2 -year-old tantrums? My 2-year old doesn't suffer from a disability, but they have thrown quite the tantrum that included clawing my face and pulling my hair, not letting go until I could rip their hand away. Does it happen more often with FXS or does it seem more intense? I'm curious as to how "normal" this actually might be or if they happen with both, but with differing degrees. I would be interested in any insight you might have with this.

Marc and Rachael said...

Dear Anonymous,
Yes, 2-year-olds have tantrums... all moms can relate. That is why I want to get the word out about FXS because you would handle the situations differently. Here is the difference. With a child with FX it is not always because they don't get something they want or are tired, it can be from being hyper-aroused or over stimulated so these attacks can seem "out of the blue" to parents. They are very intense and can be often... in my house with just my 2-year-old it is at least 2 times a day if I am staying on top of things. She doesn't stop just because I am saying "no" or pulling her hand away, she goes harder and faster. Hyper-arousal is a fight or flight type of thing and she is a fighter.

Anonymous said...

Hi, Great blog by the way. I also wanted to add re the tantrums, my son has FXS and his nursery rang me when he was about 2 1/2 to say they'd never seen a tantrum like the one he was having in terms of intensity or duration and asked me what to do. For us it's the fact that the tantrum itself causes more anxiety (often the cause of the original tantrum) and so it's a spiralling loss of control which he can't find a way out of. The pitch of the scream is also a bit more intense than with most typical children when he has really lost it! If we didn't have a diagnosis I would find him very difficult to deal with.