Friday, November 30, 2012

This is NOT What I Expected

Have you ever wanted to try a new hairstyle because you see everyone else doing it and you think, "hey, that looks so cute and so easy." When you picture yourself with your new "do" you picture yourself looking like this:

But, instead, you look like this:

Eeeeeesssshhhhh!!! Not what I expected...

Tonight I could hear Baby and Sister giggling together. Marc went to check on them...

Aaaww... Cute. Right?

Not if you see where they are...

On the VERY top shelf of Sister's Cubby! I am not quite sure how they both got there but, there they were.

Again, NOT what I expected.

Sister has been having an exceptionally hard time this last month with stimming. It has gotten to a point of completely taking over her life at home. She can't eat without flopping backwards on the couch, she can't watch a movie without running from one wall to the other and she can't live through a day without lining and stacking and piling books.

She's done really well at school, but she releases it all at home.

I thought maybe she needed a change in meds so we called her doctor and he got her in as soon as possible so that we could help her with the problems she was facing at home.

After two hours with the doctor explaining all the issues she was having at home although she was doing well at school he explained to me that all these issues are just how she deals with life. This is her way of living in the world we take for grantid every day.

He talked about increasing some of her meds but suggested trying to do a LOT more sensory input for her when she gets home from school. Things like rolling and bouncing on an exercise ball, swinging, pressure rolling on the floor or with a ball and jumping and running together. Also to incorporate more routine in our after school agenda.

I was very relieved to not have to worry about doing new meds or starting all over with that stuff, but, it was NOT what I was expecting.

How do I do sensory input activities with both of my girls all day long.

We came home from her appointment that day and I did gross motor sensory with her on the exercise ball in between swinging Baby in the swing because she needed her sensory too. And Brother decided that he benefits from sensory so then he and Sister started kicking and teasing each other for control of me and the ball.

Not what I expected.

However, the rest of that day Sister did not flop over the couch or stack books all night and she even ate all her dinner!

Just what I had hoped...
not what I expected.

Brother even seemed more involved with the family instead of isolating himself.

Not what I expected.

I am still in the process of trying to get financial help for our kids through the Department of Services for People with Disabilities (DSPD). Sister has been on the waiting list for almost 5 years, while Brother had been denied so I am filing for Brother and Baby.

Yesterday was our intake interview.

I brought all three of my kids, all by myself to the Government building.

I wanted them to see, for real, what life is like with 3 kids who have FXS including 2 that have Autism Spectrum Disorder.

I don't think it is what he (our case worker) expected.

Brother was hitting, pushing, and pinching me under pressure of answering questions, Sister was screaming at the top of her lungs and ripping up and throwing paper all over the floor while trying to punch anyone in her way, Brother dumped the two laundry baskets of toys on top of Baby, Sister ran out of the room and to the other side of the building all while I was chasing her down and our caseworker was in the room with the other two kids, and (are you tired or laughing yet) Baby had a stinky diaper that left it's mark in the air.

This was what I expected.

What I didn't expect was that the caseworker then said that we had no documentation of Brother being mentally impaired.


...  ...


There was the results of the blood test right in front of him proving that he has Fragile X Syndrome! That is the definition of Fragile X Syndrome.

Fragile X Syndrome is the leading cause of inherited mental impairment...


Sometimes I feel like all our advocacy for FXS is in vain when I talk to "professionals" like this.

I explained it to him again and I am not quite sure if he got it.

He was very nice.

Very sweet to my kids.

I just wish he knew more about Fragile X.

And I was just too darned flustered to explain everything to him.

Then Sister started freaking out and Baby started throwing things at me and him, ripping everything she could get out of my purse, rolling and writhing on the floor and I just started to laugh and said to him, "You're lucky I'm on Prozac, because I really shouldn't be laughing."

I don't think he expected that either.

After 2 long hours he was finally able to collect the 30 minutes worth of interview material he needed.

As I sat in there crawling around on my hands and knees cleaning up all the toys and torn paper he calmly asked,

"So these 3 are your only children?"



Let's hope that he got a full dose of what Our Life can be like and can push forward and getting us some help.

2 remarks:

Anonymous said...

My thoughts and prayers go out to you. You do have your hands full. I was laughing out loud when picturing the ordeal with the social worker.....I can understand. Goodluck to you!

Kari said...

I am so glad you blog! This post hit me exactly where we are at with Landon! He is the same way...fine at school and then lashes out at home. We have really reinforced the sensory right after school as well as the schedule of course. It has helped. You just never know what will trigger it. I actually feel so much better after reading this and can calm down a little! :-)