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!

April 13, 2014

Where do you live?

This past week I had the privilege of taking the Valley Life for All Leadership Class to Denver to spend two days with the Colorado Developmental Disabilities Council (CDDC).  We are one of three communities in the State of Colorado that receive a grant from the CDDC to design and deliver a Leadership class for families with children with disabilities and self-advocates or up to 15 participants.

We spent a day at the State Capitol meeting legislators, learning about advocacy and seeing the faces behind the people who manage the programs that provide opportunities for people with disabilities to participate in the community. We also looked at a house bill around affordable housing and learned how to prepare testimony to support or oppose social policy as it impacts people with disabilities. This is the second year of our grant and for the second time I walked away  humbled and proud that my path has led me to this life.
Picture compliments of
On a different note, I often try, yet very rarely succeed in eavesdropping on Alex’s conversations.  I wonder what she says,  how she says it and how her conversational skills are with people she doesn’t know. I wonder if her humor, sensitivity and love of life come through when she talks to people outside her circle.  I often wish for that invisibility cloak.
Along those lines, I had the pleasure of driving two of our group members to Denver for the conference as well as picking up another friend mid-way who sits on the council. Based on my experience with Alex I assumed their conversations might be guarded and once again I would walk away wondering what they would have talked about if I wasn’t there.

The conversation to collect the third rider was cordial, mainly pleasantries and shared excitement for the trip. We picked up our new rider and these  young women all introduced themselves and covered the basics.  I drove on through the beautiful Colorado mountains, listened, day dreamed and realized I had indeed become invisible.
The conversation continued until I heard the “where do you live?” question. A simple question with so much meaning…. It will forever be another of those moments that makes me so grateful to be part of this circle of friends who do not think like I do, do not have the same opportunities I do, yet try much harder than I ever have had to create a life where they feel valued and included. I learn so much every day, always things I did not even know I needed to learn.

You see, when asked “where do you live” all three of my friends answered with three simple words, “I am independent”.   Where is not a place for people with developmental disabilities, to these three self -advocates where is how they live, it symbolizes all the hard work they have done to get to a place where they live independently (no matter the physical setting - even if at home) , interact in the community and hold meaningful jobs.

Note: Living independently for a person with a developmental disability is like putting a huge puzzle together. Often we as parents have to coordinate case management services, Medicaid funding for support services and finding the right place. And then there is the lack of employment options……Yet it is doable and very successful. Leave a note if you have a question.
But most importantly it is about having choice and choosing how you want to live. Where is something that is sorely missing in our cities, states and country right now.

Think about it…where do you live? Or better yet, where do you want to live?

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.