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 https://www.facebook.com/ZachKorbelPublicSpeaker
 
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.  

April 10, 2014

Thank you to all my circles

When a  child with special needs is born parents reach out to friends, family, service providers and their community.  Sometimes this is successful and sometimes we as parents learn that awareness needs to be created first. In my case I become angry at the system and people in the systems that created such barriers for success.  But I learned  during my journey with Alex to trust in the process. Our paths are not straight, its valleys and plateaus are purposeful and places we have opportunities to learn and grow. And as we continue to learn and grow we create circles of support around ourselves and our children.

Although this  term circles of support has traditionally been used in the person centered planning process for people with disabilities, I realized I have unconsciously built very powerful circles around me and this is saving me.
Until two weeks ago when I shared Broken with all of you,  I never knew how many circles I had and how many people lived in those circles. To each and every one of you, thanks for reaching out. If I did not return your voice mail or only sent a brief thank you to your message it was because I was overwhelmed.  People from all parts of my life responded and getting back in touch with many of you has been the gift of this life changing event. I am humbled and grateful.

I do not mean to turn this into my divorce journal, rather a story of healing, something I learned almost 21 years ago. My son returns from college this week, Alex in two weeks and in mid-May we head to Philadelphia to watch my oldest graduate. In a year I will graduate with a MSW and be able to search for a job anywhere I want.  The future is bright if I trust in the process. I am okay.
Thank you from the bottom of my heart.

 

April 6, 2014

A little PSA

I often get emails, facebook notes or tweets asking me to share information about resources, other pages or events. I try to exercise due diligence and share what I can, when I can, hoping that the information may be helpful to someone.

Almost three years ago I got an email from Baby Sign Language and wrote the following post:
June 13, 2011  - Sign Language and Down Syndrome
 
As I have written in the past, Alex learned sign language as a very young baby. It saved us and her months of frustration as she figured out how to get her brain and month to coordinate to speak. Instead she used her hands, and we understood her wants and needs. Following is a guest post from Baby Sign Language. I highly recommend it!

Children with Down syndrome are often quick to develop their receptive language skills. They understand what we adults are saying, sometimes before we really want them to! But expressive language can be a whole different story. And when children can’t express themselves the way that they want to, it can be incredibly frustrating for both children and caregivers. Read more here

This week I got the following follow-up email:

I want to thank you for your support and for sharing our website with your readers The natural progression from learning how to sign and speak is learning how to read, and that's why we developed our new website SightWords.com. We want to provide parents and educators with free digital and printable tools to help them teach young children to read. 

SightWords.com has many free resources including:
 
 -Generators to make fully customizable Bingo cards, Snakes and Ladders game boards, Old Maid card sets, and more. 
 
Everything in sightwords.com is absolutely free and designed to help your child learn how to read effectively from pre-k up to 4th grade. We'd love if you could help us get the word out about these great free resources by letting your readers know about SightWords.com.

Again, thank you for your support and for continuing to provide your readers with useful, quality content.

Consider it done!

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.