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.

Wednesday, November 28, 2012

Holiday and Birthday, Same Time--Different States

I bet most of you didn't know that I spent Thanksgiving and Brother's 13th Birthday here at home while Marc and Brother were in visiting family 800 miles away!

Yes, the magic of blogging, you never truly know what really goes on behind the scenes... until I reveal them to you (sneaky smile inserted here).

It was all very last minute. I thought Marc needed to get away to see his brother and sister. He also really needed to see the beach—I think it rebuilds him each time he sees it and gets to breath in the sea air and walk on the shore. His parents were heading out for a couple of weeks and I thought it would be great for Marc to tag along.

Marc thought about it; missing Thanksgiving with me and the kids, missing Brother's 13th birthday.

But then, he thought, "hey, I could bring Brother with me..."

I was so excited for them to have a trip together. They have never done this before, so it was going to be a groundbreaking experience for both of them.

So, the Monday before Thanksgiving Marc arranged with his parents to only be gone for one week instead of two so that Brother didn't miss too much school, nor Marc too much work and then they were packing.

Brother was NOT excited about going away.

But, by now, you have all learned how that goes... he doesn't want to go, we strongly encourage him, he ends up having the time of his life.

So, I will spare you the details and just let you know that he got into the car on Tuesday morning at 5:30 am with only a small wimper and his horse blanket wrapped tightly around his body and over his head. (Thank goodness the L-family gave him his birthday gift early...)

I didn't quite know what to think of only me and the two girls at home...

Should I be sad?

Tee hee!

Nope I had fun! It's weird how, when you have 1 less child (2 if you count the hubby) how much easier it seems...

Notice I said "easier," not "easy."

Thanksgiving came and I was having a blast making apple turkeys and disguising turkeys with my family and the girls. I am glad I had that time to just have fun and not miss my boys. It was all a very good distraction.

This is a video of our Thanksgiving Fast Feast, one and a half hours of eating mashed into just under 2 minutes. I just thought it would be something fun, but, I must say I think my dad ends up being the main star of the show:
Music is from Mindy Gledhill. I love her music! And you can download a free song of Mindy's here.

We got pretty competitive with our Turkey creations. Check them out:

Above and Below are all the Disguised Turkeys we created, there were some VERY creative ones. You really need to get close to see them all. We were having so much fun that some of us did 3 or 4 of them.

These were a couple of my favorites: Aaron's astronaut and Sister's Fox... I love that sister even did spots for her Fox Turkey, so if that Turkey was dancing would you call it a Turkey Trot or a Fox Trot? ...

Here we are at Jessie's table with all our materials (andy and apples) to make our apple turkeys

I have to zoom in on my two favorite... mine (on the left) and Aaron's pig (on the right) -- he always has to be the different, more creative one...

Here are most of them.
And here are the turkeys that fell asleep while we had fun... can you tell they are related? (my dad and his brother) I kind of got a kick out of seeing the baby doll all cuddled up next to Uncle Jeff... yes, that is a doll.

While me and the girls had Thanksgiving fun, so did Marc and Brother:
Marc's brother, Aaron, and his wife, Julie whipping up something great for the feast.

Brother keeping busy

I was jealous, though, because Marc got to meet our new nephew, Nate, and our new niece, E. Poor little E broke her arm that week while rollerskating. And doesn't my new nephew look like Superman?

Here's Brother eating with his cousins at the "kid's" table. So cute. I totally remember those days as a kid.

Me and the girls slept at my mom's that night. My mom and I went to see what all the hubbub was about at the Black Friday Sales while my dad stayed with the sleeping girls.

We went.

Were overwhelmed.

We left.

When we got home I made my mom stay up with me and watch an episode of The Twilight Zone.

The next day we played outside while we watched others work. Then we ate my mom's yummy pizza.

Baby love's the baby mule

Joel and Uncle Jeff were the ones working the hardest.

Sister wasn't done partying so that night (Friday) we slept at Jessie's.

The next day on Brother's big 13th birthday I tried taking the girls to the movie with Lindsey's help. Baby lasted about 30 minutes and then I had to take her out in the hall and let her run. Baby escaped from me at one point and ran into and open movie theater door and ran all the way to the front of the theater before I could catch her. The crowd was laughing about her almost getting in because it was a rated R movie and they new this little preschooler wasn't supposed to be in that theater. A few people called out as I herded her back to the doorway, "She almost made it!" It was embarrassing and funny at the same time.

I finally took her out to the arcade where she had more fun on the pretend motorcycles and cars.

Sister soon joined us and I told Lindsey to go ahead and finish out the rest of the movie while the girls played. They didn't want to leave anyway.

Then we got home and I wrestled (literally) the girls the rest of the night until we were all in bed.

This is how Marc and Brother spent his 13th birthday:
This is the tree that we always get a picture on when we come to this beach, so Marc decided to keep the tradition.

Brother LOVES his cousins and was so happy to be at the beach with them for the day.

Marc wishes this would have been him. He did talk to the surfer afterwards though.
Someday we both want to try surfing!

Bree found a starfish and Brother couldn't have been happier

He really didn't want to let it go. He wanted to keep it for a pet.

They got to see the monarch's during their migration, those are all butterflies! Amazing!

Brother does not want to be 13 so he keeps telling everyone he is 12... or 21...
When they got back from the beach Marc's sister, Amber had pizza and a cake all ready for Brother's Birthday Party. Aw. So sweet. I was glad she had a party for him since I couldn't be there to do it. Thanks, Amber.

They even sang to him and did candles...

you can see that his little cousin, ended up helping him out with that:

Little Teddy was a big help while Brother hid under the pillow...

Happy Birthday my big 13!

Thursday, November 22, 2012

Today I am Thankful for...

Sister's ability to draw this sweet little turkey in her art class at school.

Sister's extreme love for cheese to the point of gnawing at the
whole block and then hiding it under her pillow. I am also thankful I found it.

And books. Lots and lots of books... everywhere in my house. I am thankful that I have become so proficient at putting them all back after Sister stacks, lines and piles them in various areas. I am also thankful that I think to take pictures of these things so that I can laugh about something later that wasn't so funny at the time. (This is actually after we had spent some time picking up.)

For neighborhood friends who play with our children.

For cooking lessons.

Brother's tracking sheet that comes home with the note saying he tried out for a solo in choir!

Friends who want to come spend time with our kids because they enjoy learning about Fragile X
and because they enjoy our children's company.

Free haircuts that Brother will only complain about for half of the time.
(And dads who think to take the picture)

The tradition my Grandma V started of making apple turkeys that my sister, Jessie continued on in our own family Thanksgiving Dinners.

photo by Pointe Digital Photography
And of course my family. My beautiful and endearing family.
Without them, I would have none of this to be thankful for.

Happy Thanksgiving!