JOURNAL

Do you have a 'very Special Child'?
Then you might be interested in my
TAILS!!


I created TAILS on Suzy's SHIRTS.
It works for us ~ maybe it will work for you, too.

Remember when your kids were babies?
And they all wore ONESIES?
I loved onesies for all 3 of my babies -
the shirts stayed tucked into the pants,
their tummies stayed covered, and warm, and protected,
the onesie kept the shirt from "bunching all up in the back" when the baby was in a stroller or carseat,
there wasnt' a bunch of material gathered around their boobies when they were rolling on the floor,
they just looked neater.

Suzy is pretty much still like a baby - AT AGE 5 - and STiLL NEEDS ONESIES.
So, I created a way to make EVERY SHIRT SHE WEARS A ONESIE by sewing on a TAIL!!

I have done this for 2 years, to every shirt she has, and it's very easy!!!

For every shirt, you need one baby onesie. Cut the bottom 1/3 off the onesie, cut off the sides, and sew it onto the bottom of the shirt.

Click here for DETAILS and PICTURES.


http://www.babyjellybeans.com/web/do/site/photo?ID=723096





   

   
   

progress report November 29, 2010




The girls all received report cards last week.
Gracie and Maggie did great. I am proud of them. But they always get good grades - they work hard, and school comes fairly easy for them.

Suzy's is the one that surprised me! Yes, she receives a report card in preschool (IEP policy).

Her report is set up by stating the goal they are working on, and then sharing the progress.

Here are some of her shining moments:regular_smile

1.  Goal in Receptive Language: Suzy will demonstrate an understanding of the word "more"
    Progress 11/10/10:  Suzy lets us know she wants "more" by using eye gaze!

2.  Goal in Expressive Language: Suzy will activate a switch to make a choice.
   Progress 11/10/10: Suzy is purposefully activating a switch to request snacks and to greet her friends.

3. Goal in Expressive Language: Suzy will activate a switch to indicate needs and wants.
   Progress 11/10/10: Suzy has mastered this skill. She is activiating a switch to make requests.

4. Goal in Fine Motor: Suzy will bring her head/eyes down to look at a person or object with verbal prompting.
   Progress 11/11/10: Suzy has mastered this skill!

5. Goal in Fine Motor: Suzy will use her hand to activiate a switch toy.
   Progress 11/11/10: Suzy has mastered this skill!!

6. Goal in Gross Motor: Suzy will prop-sit independently for increasing time and begin to use one arm to reach out for an object.
   Progress 11/10/10: Suzy is making excellent progress with sitting!


7. Goal in Gross Motor: Suzy will stand with assistance at a preschool table for 30 seconds while engaged in classroom activities.
   Progress 11/10/10: Suzy is standing with assistance for 30 seconds!! 

She has 15 total goals this year. The goals not mentioned here have a progress note as either -"not yet introduced" or "progressing" (which is a nice way to say "still working on it"!)

We are so so so so so proud of her. Who knew?

Hope you all had a great Thanksgiving weekend.
Peace,
Whitney
November 14, 2010







Gracie and Maggie were happily playing at Nana'a house.
Chris is out of town.
So, Suzy and I went shopping.

First we went to the furniture store.
A boy was bouncing on a sofa.
His mom said, "Ben, why can't you sit quietly like that nice girl?"  and pointed to Suzy.

Seriously?
She  used my disabled, non-verbal child buckled into a wheelchair as an example of how her active, excited 3 year old should act??............

Off to Wal-Mart.
I had a brainstorm of an idea!! I removed the seat  of Suzy's wheelchair from it's base, and put it INSIDE a grocery cart!  PERFECT
(Usually at a grocery store I push Suzy in her chair, and pull a cart.)
She smiled and felt like a BIG girl; and I only had one 'vehicle' to contend with. We were HAPPY.

Then we hit the yogurt area.
There was a man, woman and their 2 children.
The man saw Suzy, then asked me,
"What...did ya' strap her in so she would sit still and not run all over the place? ha. ha.ha."

Once again...SERIOUSLY?

I just smiled and said, "She has CP and can't sit up; much less run around."

He looked confused.

We continued on.

...sigh.....the general public never ceases
to amuse me....

(He didn't ruin my mood. 
Things were going too well.)

Hope you all had a great weekend.regular_smile
November 11, 2010
 



I’ve been feeling frustrated…….(O.K. – what else is new, right?).
It’s the same old story.
I’m not frustrated at Suzy – she is doing her best. She continues to try hard every day.
I’m frustrated with the whole ‘process’! I can’t seem to figure out the best things to do for her. I just can’t get a handle on what works, and what doesn’t. And what’s a waste of time and money, and what I shouldn’t give up on. And there is NO BOOK telling me what to do. There isn’t an EXPERT who will advise me. There isn’t an INSTRUCTION MANUEL for helping your brain injured child!  And that really pisses me off!!!!
I have thrown hundreds of thousands of dollars into her brain.
I have spent countless hours traveling the country.
I have prayed, and pleaded and cried.
 
And what do I have?  Yep,  you guessed it – I still have a brain injured child. No surprise there. And yes, I have finally realized that I will ALWAYS have a brain injured child. And I’m finally “good with that.”
But, (don’t hold it against me) - I want to have the VERY. BEST. BRAIN. INJURED. CHILD. THAT. I. CAN. POSSIBLE. HAVE!
 
We have done ABM, MEDEK, HBOT, Stem Cell, & Traditional Therapy. We do PreSchool & Conductive Ed. Next week we start Vision Therapy.So is all of this working?
Some people  tell me she is an entirely different person than she was last year.  She has made wonderful progress.
However, the big picture says that she still hasn’t reached any major milestones.
 
Jenny noticed my discouragement. She had a fabulous idea. She asked, “What do you want to see the most?”
And I answered, “Progress!”
And she said, “Exactly!! That’s why we are going to start documenting her progress!! We know it’s small, so let’s start writing it down so we can praise all of the tiny accomplishments she makes.”
 
So, that’s what we’re doing, and it feels great. Jenny started timing Suzy sitting on her balance board. She wrote down 1.30 minutes last week. Then it was 2.0 minutes. Yesterday, I walked into the house and Jenny was BEAMING!!!!! Suzy had sat on her balance board WITHOUT falling over for 11.29 minutes.
 
How about holding herself up in a quadruped (crawl) position? Last year, there was no possible way she could do it. 6 months ago, she started keeping her arms in place and trying to hold the position.  Yesterday, Jenny timed her for 3 minutes before her arms collapsed!!
 
And what about holding something in her hands, and then bringing it to her mouth? It used to be that she could do it for 30 seconds - and we all jumped for joy. Then she started doing it for a minute -"God answers prayers", we said. Now, we just take it for granted. We put something into her hand, and she's good to go for a while!!

And... are you ready for this? She is very close to drinking from her own sippy cup!!! She can hold the cup, and she can bring the spout to her mouth. But, she just can't get her elbow to bend up to allow the juice to flow out. But, SHE WILL!!

For me, the most challenging part of raising a child with disabilities is dealing with the unknowns, the what-ifs, the what-nows, and the who-the-hell-knows?!!
But I am learing a huge lesson - to appreciate the little things. To thank God for the small steps. And to keep my heart and eyes open to the possibilities.

I posted pictures of Suzy holding a stick dipped in cool whip and having a ball. PHOTOS - Progress and Good Times!

Thank you for reading, and for sharing our life.

I LOVE reading your comments. Thank you for writing.

Love, Whitney

My Little Clown & I October 29, 2010



Yesterday, I had the pure pleasure of going to Suzy's preschool class for their Halloween Party and Trick-Or-Treat Parade.

Cry - I did not!  I wanted to cry. I wanted to be sad that all the other children in the world are running around in their costumes and saying 'twick oh treet!"  This is just another holiday where I am reminded that Suzy has so many disabililties and disadvantages.

However - I walked into her classroom at 10:00 and I just SMILED!  Big SMILES!teeth_smile
There were 10 children, dressed up in eveything from doctors, to ballerinas, to zebras; and sitting in the middle of all the chaos was my little clown. And she looked so happy, and so darn cute, and so very content with who she was and where she was.

Suzy was put into her "stander". The class was going around the school to trick-or-treat to different places/classrooms. (Remember, this is a "normal" elementary school. But this whole school works together to give the Special Ed preschool class a very special experience.) The kiddos went to the office, the clinic, the guidance counselors and a few classrooms. They had a ball.

Here's where I got a little choked up:

I stood at the end of a hallway, and I just looked at this "mass of confusion". -
There were 3 teachers, 4 moms, 3 beautiful children with autism, 4 adorable kids with Down Syndrome, 1 gorgeous boy with Developmental Delays, 1 really cute girl with cerebral palsy strapped into a stander, and a couple of other "special children" - and in the middle of it all I caught a glimpse of God.  HE was there. HE was at the heart of it all. HE was guiding these children and their care-givers.
  These are His SPECIAL CHILDREN, and HE will always be there for them.
heart And that makes me smile.

I posted pics under - "PHOTOS-PreSchool Halloween 2010"

Peace,
Whitney
October 12, 2010


Have I mentioned lately how much I LOVE Suzy's preschool? And how much I LOVE her teachers? This note came home  yesterday: (Life is Good!)


Hi Whitney,
Suzy had a fabulous day today and worked so hard!  I used a switch activated communication device during snack for her to request her pudding and animal crackers.  She loved it and really tried hard to activate it.  I placed it in the middle of her tray, so she could work on bringing her hands to midline.  
 Also, we worked on her tummy, and she held her head up in a prone position while activating a switch toy that makes animal noises. 
 
Attached is the IEP Modification we talked about last week.   Robin, Cindy, and I also updated her objectives under fine and gross motor to add some additional things we would like to work on with Suzy including: sitting in a cube chair at circle time, standing at the table to activate a switch toy,
and opening her hand upon request.  Please look over it, and let me know what questions you have.  
 
Thanks,
Beth


every child should have a teacher like Miss Beth and a place to go that fosters such amazing positivity.