November 26, 2014

Thanksgiving 2014

When I was a little girl I was often asked “what do you want to be when you grow” and although my answer changed often and still does change many of my dreams for my future were realized.
When asked what Alex “wants to be when she grows up” she answers just like I did. She wants to have a husband, a job and lots of friends. She wants to play sports and participate in community activities, she wants to choose her own future and be a part of it. We will honor this.
But, for many of our young adults today choice has been compromised. I do not mean to offend anyone, but in my humble opinion our children’s’ future has not been compromised by families or individuals it has been compromised by the system and left families feeling depleted and scared.
When a child with a disability starts school an individualized education plan is set-up. This is generally a great thing and enables families, the child and the educators to put the right supports in place for the child to succeed in school and hopefully their rightful classroom. When the child gets older he/she is included in the planning (if done properly) and the “nothing about me, without me” strategy employed.
But an individualized education plan or program is just that..a plan or program. It is a snapshot in time that does not address the “what do you want to be when you grow up” question that is part of every child’s education.  When our children get to middle school the IEP plan sets a goal of "graduating" to the transition program.  Starting at age 14 our IEP stated that the family (not the child) has been advised to contact the local CCB (state funded agencies that provide services for people with disabilities) and be put on the very long wait list for adult services.
Alex was never asked if she wanted to go to college, never advised if she got the right number of credits she could graduate from high school with her peers.  Alex was never asked if she wanted to be in the school play or play sports, instead she asked, and her wishes have been honored.
Alex was never asked if she wanted to “graduate” to a segregated classroom with nine other people with disabilities and learn about cooking. She was never asked if she wanted to get on a bus with nine other people with disabilities and go to the bank to learn about money. This was all assumed on her behalf. But we were lucky and although Alex was never asked a lot of things, she still knew this was not “what she wanted to do when she grew up” and with our assistance it was removed from her IEP.
As far as her future after high school, “when she grows up” Alex was never asked if she wanted to live in a group home and work in a segregated job. She was never asked if going to a day program with people with disabilities is what she wanted for her future. This was all decided by the system before she could even speak. Alex does not want this “when she grows up” and is not on a long wait list for adult services. Today she is a sophomore in the TAP program at the University of Cincinnati. She lives in a dorm, travels by herself and is only home for holidays,
The system is changing, and this is my thanks for this Thanksgiving season. Parents before and after me are listening to their children (they always have), and hearing what their kids “want to be when they grow up”, and demanding these dreams be honored. And as we ask for choice and the support to live our choice the system is growing up too and hearing us.
Happy Thanksgiving!
Originally published November 16, 2012, the sentiments are stronger today than they were two years ago.

May 8, 2014

What do you see?

When Alex was born we heard all the dire predictions from some of the professionals:
  • Low muscle tone
  • Lack of coordination
  • Poor eyesight
  • Slow reflexes
  • Challenges with weight
  • Delays in processing, communicating and more
We also heard the great things from many professionals and even more parents:
  • Physical therapy and being active in sports helps with low muscle tone
  • Stay active and coordination and reflexes will improve , or may not even be a problem
  • Eyesight is very dependent on family history
  • Exercising and eating well will help manage weight
  • Yes, there are delays but EVERYONE learns at their own pace
We are a sports family and took a lot of this advice to heart. Just like her parents and just like her siblings, Alex has been involved in sports since a very young age.

Alex played and was included in the local recreation program soccer and softball leagues. She played basketball in middle and high school.

She learned to horseback ride, swim, ice skate, ski (search South Korea to learn more), snowshoe and has competed at the highest levels in skiing.

Alex took swimming and basketball classes at college (and was fully included) this year and received the highest accolades on her attendance, participation and dedication.

My sport of choice is tennis and has been since Tommy was three and I finally felt I could have some time to myself. I was able to resume playing after a long hiatus 15 years ago, when Alex was six. And just like her older sister Alex wanted to learn to play tennis. She started lessons when she was eight and has continued off and on for years.

This summer Alex announced she wanted to start playing tennis I signed her up for a lesson and was amazed at her muscle memory, so much so that the pro declared she had better form than  me!

So when you look at his video - do you see low muscle tone, processing delays, slow reflexes or lack of coordination? I don't, I see a beautiful young lady taking her first tennis lesson in four years and getting excited again about the game.

Caveats...Alex will only hike with me under penalty of death, she can not ride a bike and she gained the freshman 20 (twice) this year at college. We are relearning about healthy eating and healthy choices.

If you have not liked our page, it is a good way to stay on top of the ups and downs of college (and inclusive education) for a person with a development/intellectual disability. I have no idea what is going to happen....but I will share the good and the bad. Please click here

April 28, 2014

The Top Ten ways to know Alex is home for the summer

10. There are clothes all over her bedroom  

9.  Degrassi is the top choice on my recorded TV shows

8.  Bowling is an important sport

7. My schedule is the topic of our nightly conversations

6. Alex talks about her 21st birthday every day (June 19)

5. Alex talks about sweet and sour chicken every day

4. We spend an inordinate amount of time talking about our next meal

3. The phrase “Mom , when I was at school”….is part of our morning conversation

2. I remember why Alex’s nickname is bossy boots, and finally

1. Hugging is part of my life again!