Tuesday, December 28, 2010

massaging, rubbing, rolling, squeezing, swinging, rocking, jumping, coping and a little whining...

No pictures for this one. ( I should get some though so that those of you who need this can get an idea of what we are doing here.)

Fragile X Syndrome brings on many challenges. Many that people around me don't really realize are dealt with on a daily or hourly basis. Most of the things that we deal with are here in the home so not a lot of people understand why I am so overwhelmed to be their mother.

is what I do for Baby's legs when she won't stop rocking. She needs some sensory input and massaging her legs helps her regulate and receive sensory input in another way.

I do that on Brother's back when he can't calm down from something that has been very exciting or overwhelming or when he can't stop worrying about how the covers are on his bed.

Also, massaging their hands seems to relieve them. They have a lot of sensitivity in their hands, I guess.

for Baby and Sister are needed to calm. Mostly I rub their back or their hands or cheeks.

is a very interesting technique in that you get a heavy blanket or rug and roll your child up in it... ya, I know, unless you have a child with autism or FXS this is a very strange thing to use to "help" children.

You lay them in the blanket/rug at the end and roll them up in it while putting pressure up and down their body as you roll them. Sister is the one that LOVES this. Brother likes to have his turn at it too, just because. I use this for Sister when she is aggressive or over-stimulated. (And, frankly, that is often.)

is usually what I do when in a public area, ie. store, mall, family party, movie theaters. I take Sister in my arms in a big bear hug and squeeze her comfortably tight for a minute or two until her muscles relax a bit. This gives her sensory input and helps her be aware of where she is in her space. Baby also enjoys a modified version of this where she likes to barry her head in my neck or shoulder and sqeeze me with her fingers.

is something that can be done several ways. I used to do this a lot with Brother but not now. Now it is with Sister a lot and sometimes with Baby.

We have set up a therapy room in the basement where we have set up a hammock hanging from the ceiling that wraps her up like a ball and swing and twist her when she is being agressive or has been over-stimulated. I also do this while out an about by taking her into my arms like a little seated swing and swing her like a pendulum. This is quite wearing when they get bigger but, well worth the results.

I remember, too, with Brother, we (His Occupational Therapist) and I would wrap him in stretchy nylon material and swing him. This gives the sensory input for vestibular and surroundings.

is what we do if the swinging doesn't work for Sister. A rocking horse works wonders.

comes at a time when strong sensory input is needed. Trampolines are great for this. We are looking to get a mini trampoline for our therapy room in the basement.

is something that I hope Sister will learn to be able to do one day on her own so that she can attend mainstream classes. Mainstream classes aren't going to have a swing, trampoline, or bouncy ball to help her transition or calm down from over-stimulation.

I am also hoping that I can continue to cope doing this all day long. I get extremely overwhelmed and physically and emotionally tired...

which leads to...

I won't do much of it.

Just a little.

Waaaaaaaa ahhhh aaaaah aaaaaaaaaahhhhhhh waaaaaaaaaaaaaa!!!

9 remarks:

Yo said...

Wow - I knew it was tough but I of course didn't fully understand nor still do. You are amazing and your children are very lucky to have you:)

Aaron said...

I love it! Knowing your children and how to help them is a measure of your love for them.

Bonnie@TheFragileXFiles said...

Awesome. I'm sharing this on FB. Well put, and great info.

Vicki Davis said...

This is a great summary of all the various things we do too, I still do the swinging on the blanket, but now I will have to try the arm one as you described. We do joint Compressions too which falls into the Squeezing, and also sometimes brushing. I have the same worries for Holly as you do for Sister, when she start's school, has brother learned to cope and self regulate?

Salt in Suburbia said...

Great post. I have asd twins and sometimes I don't think I pay enough attention to their need for sensory input, but I can relate to all those "in public" techniques :-)

Mariah said...

How time consuming your three sweet little ones are. You hold it together well, but falling apart sometimes is allowed too. Call me for an emergency Red Robin mud pie and all you can eat fries date. (Advance notice not necessary.) :)

The Richards Family said...

Rachael, Wow is all I can say. Your children are beautiful and you are amazing. They are lucky to have you as their mother! Hugs, Jamie

Rachael said...

Thank you for all of your lovely comments. I am definitely not the only mom out here that does this with her children everyday. Any mom with children on the autism spectrum, autism or fragile x or anything similar can certainly relate... Way to go moms!!!!

Julie said...

Thank you, Rachael, for teaching us what you have learned! I didn't realize those techniques helped so much. Some of them sound really fun! I want a therapy room in my house! Hammoks, swings, tramponlines! FUN!