Archive for the ‘Disability Issues’ Category

Meet Heather!! ūüôā

Meet Heather!

Heather is a friend of mine whom I first became acquainted with during a Family Studies class at Middle Tennessee State University in 1995.

She’s also the person who woke up my world of thinking without her even knowing it!!

Notes from Heather

I’ll¬†be 41 in November.¬† When I was born it was about a month after I was due to be born.¬† I was strangled by the umbilical cord.¬† I was born at Memorial Hospital but transferred by ambulance to Vanderbilt Medical Center.¬† My parents were told the best thing they could do was to go home and forget they had a baby.¬† They were told even if I survived ¬†I’d be a total vegetable with severe disabilities.

Thankfully, they didn’t listen.

I was diagnosed with Cerebral Palsy when I was two.¬†I attended St. Bernard School for Exceptional Children when I was four and from there I went to St. Bernard Non Graded Academy.¬† This kept me out of the public school system until I started high school.¬† I went to Hillsboro High School which at the time had the best college prep program for disabled students in the Nashville area.¬† From there, I went to Middle Tennessee University and received my Bachelor’s degree in Social Work in May of 1998.
I met Bryan at MTSU and we were married in November of 1998.  We had our son, Dalton, in July of 1999 and our daughter, Bobbye Sue, was born in September 2002.  I am a stay at home wife and mother. 
Seeds of Hope

Family Relations was the first college course I had with an adult with Cerebral Palsy. ¬†At twenty, I really didn’t know anything about disabilities or Cerebral Palsy, but I did notice that Heather’s diagnosis effected her mobility and speech. However, having a speech disability did not hamper Heather’s ability to communicate. She has a gift for conversation!! ¬†Every student around her not only benefited from her insight but could feel the heart-felt passion from which she shared. Consequently, it was her personality and intellect that shined and not the limitations of her disability! I will never forget hearing Heather remark to the professor, “I want to get married and have children one day…” What? Could a woman with Cerebral Palsy be a mom? ¬†Her dreams were stretching my small thoughts!

Almost twenty years ago God used Heather to plant beautiful seeds of hope inside of me. Only the Lord knew that I would need this down the life road..

Hope Again

I didn’t officially meet Heather until eight years later while visiting my parent’s church. Recognizing her voice, I introduced myself and shared with her that I remembered her from a class at the university.

Heather then proceeded to water the seeds she had planted in me years ago…

“I’d like you to meet my husband and two children…”

 

Heather and her husband, Bryan in 1998.

Heather and her two children, Dalton and Bobbye Sue.

Heather is amazing, not because she has a disability and a family, but because she didn’t give up on her dreams. Even when others may have doubted, she continued to believe. Her desire and ability to live her dream of having a family, despite limitations and challenges, has ruined my small thinking. Whenever I feel like I’m giving up on a dream, her deeply touching words from two decades re-ignite the fire I need to hope once again.

Thank you Heather for allowing me to feature you on my blog and share how you’ve touched my life!¬†

Check out Heather’s blog: ¬†http://crippledmama.blogspot.com/.

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Note: It’s a small world! Heather’s husband ended up being a childhood friend that I had not seen in years! ūüôā

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Andrew never says, “I can’t see the ball.” He just gets out there and plays his heart out. He’s great at golf for the same reason that a person without a disability is great at golf … a “drive” to be accomplished at a sport that he loves!!

Andrew, my twelve year old son, has big dreams! Although diagnosed with low vision due to albinism at two months and then diagnosed with autism at two years, he plans for his future just like anyone else his age. ¬†Watch out world, here he comes! He¬†already has his first car picked out — a beautiful bright bumblebee yellow Camaro! He has drafted several designs of his future home for he and the children he wants to adopt. Later he plans on getting married to someone who likes children. Smart boy! At¬†some point he wants to go to college and then try his hand at¬†entrepreneurship¬†by owning a toy store where¬†ALL the merchandise is free! If all his other dreams fall through he plans on living off of his professional golfing career and doing some part-time preaching! ¬†No joke, he’s an incredible kid!! ¬†ūüôā

In 2005 I was raising my son with multiple diagnoses in the midst of a flood of “expert opinions”. There was an overwhelming urge to pull the covers over my fearful eyes and silently exhale any hope I had for a “normal” life. Fortunately my story does not end with the headlines: Missing Mother Found Hiding Under Her Blanket, and I began to see my son and myself through eyes of opportunity!! ¬†My perceptions received a major overhaul at a Partners in Policy Making Leadership Program in Nashville, Tennessee where I was privileged to hear Robert Watson, Executive Director of DateAble Inc, speak. Andrew was three when Robert challenged my old thoughts and gave a new paradigm to consider in terms of intimacy, career, success, independence, traveling, and happiness for people with disabilities! The class of 2005/2006 was swept away in Robert’s ability to share stories with humor and authenticity related to growing up with cerebral palsy, tales of his grandfather, school, meeting his wife, career and work. When Robert’s presentation concluded, I had come to a radical decision that I didn’t want to have a “normal” life! Suddenly, normal seemed boring. Turning a mental corner and leaving defeat behind, ¬†I said “hello” to my new friend … HOPE!!

As my mind continued the shift from despair to hope, I began to ¬†encourage¬†Andrew and others to see beyond disabilities. This takes faith on everyone’s part because we are speaking of things as if they just might come true. ¬†I’m convinced that disabilities should never prevent us from hoping, dreaming, and becoming!¬†It’s not for me or anyone else to decide what the future will hold! The faith isn’t in the realization of the dream; it’s in believing there is more to come!! Please know that I am not minimizing Andrew’s or anyone else’s challenges. Some days his challenges become¬†the day,¬†but they¬†do not become him, our family, nor our life.¬†There are too many other wonderful and amazing ways to identify my son,¬†and any other child with or without¬†disabilities, that will¬†sow seeds of life! It’s important to choose our words with care!

As we enter a new season of societal acceptance where disabilities are considered a natural part of our culture to be respected along with every other aspect of humanity, I listen for new ways¬†to re-introduce my son and what it means to have a disability¬†to our community. This is not a fairy tale land of denial but a perception change for our society that is strongly influenced by self-advocates, family members of those with disabilities, and others who honor the contributions of a diversified culture. It’s an exciting time seeing grass root beginnings become nationwide movements! Robert Watson’s stories of life and leadership continue to teach me as I re-imagine Andrew (and the disability community) as more than needs, therapies, or limitations. Now I see leaders, contributors, play writers, actors, athletes, students, employees, colleagues, presidents, directors, musicians, parents and on and on and and on … If you are having trouble seeing beyond the disability, make friends with several accomplished adults with disabilities along with family members that are a few years ahead on this life’s journey. Ask them if you can add them to your community of advisers. You’ll be pleased with the light that will appear through the clouds. ūüôā

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When I contacted Robert a couple of weeks ago about including him in this blog piece, he told me that he has written a book along with co-author, Mike Hilson, called¬†Speak Life: Re-Introducing a Language of Love and Gratitude.¬†I can’t think of a more appropriate title for this book! It was the very reason that I was contacting him in the first place! He spoke life into my family while giving me the encouragement to see Andrew as a person and not a disability. ¬†I highly recommend everyone reading Speak Life¬†but particularly for any teacher, parent, pastor, or community leader. It’s a short but powerful read that you will not regret!!

In addition I found this link to a You Tube video that I think you will enjoy regarding Speak Life.
http://youtu.be/7byUWs1Kqn4

Link to purchase book: http://www.amazon.com/Speak-Life-Re-Introducing-Language-Gratitude-ebook/dp/B00K1LG2L4/ref=sr_1_1?ie=UTF8&qid=1411012562&sr=8-1&keywords=speak+life+watson

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Roberts bio from DateAble website: http://www.dateable.org/watson.htm

Robert Watson is the Executive Director of DateAble Inc., a non-profit dating service for people with and without disabilities. He is also President of United Cerebral Palsy of Montgomery and Prince Georges County (Maryland) and advises many other disability advocacy organizations. Robert married to his wife of 11 years, Lynn, whom he met through DateAble before he became the Executive Director. He is also an avid Washington Redskins fan and enjoys spending time with his family in the southern Maryland area where he was born, raised, and still resides. Through his exposure with DateAble and United Cerebral Palsy, Robert has delivered many presentations in the United States, Canada, and Australia on a variety of topics including disability awareness, sexual intimacy issues, and dating with a personal care attendant present.

Note: Please know that we have had wonderful therapists and teachers along the way that have cared beautifully for Andrew. This blog post is in no way to diminish early childhood interventionists, special education teachers, or any type of service to the disability community. We are deeply grateful for everyone who has spoken life into our family and provided us the resources through consultation and direct services for a future of possibilities.

 

 

 

One of the best decisions I made for Andrew and myself was to attend an advocacy and self-advocacy leadership training program through the Tennessee Council of Developmental Disabilities called Partners in Policy Making. Beginning in September 2005, I drove to Nashville one weekend a month to have my paradigm shifted, unraveled, and frankly, blown apart. My head spun as layers were peeled and a new foundation was born. Finally, my mind embraced a new perspective about my son, his diagnosis, our life, his future, and our family!!

The training is phenomenal. Classes are carefully chosen to include a diverse representation from across the state which include advocates of family members and those with varying disabilities (self-advocates). The training, by design, opened doors to rich networking and deep friendships between classmates. Speakers from all over the state and country, many of which had significant disabilities themselves, passionately shared about grass root movements in disability communities, booming entrepreneurial endeavors, and other innovative topics. Several motivational and inspirational speakers who were non-verbal communicated clearly by using computer voice technology. Musicians and other artists gave performances and shared their artistic handiwork stirring emotions in my soul while landing a permanent home within me.

When I graduated in May 2006, I experienced a metamorphosis! There’s freedom when one learns to fly!! The community I met seemed set apart from anything I had ever experienced. I made a surprising discovery when I realized the “difference” had nothing to do with their disability but actually in their ability to live¬†life alive! Their story wasn’t about surviving but thriving! Yes, some of them had to overcome daily obstacles, but their life was not defined by their frustrations but by what they experienced on “the other side”. Many of them had failed but was not scared to fail again. ¬†Slowly, my inhibitions began to fade. Nothing had changed except my mind. I would not continue to be a student of fear but a student of this community.

Now Andrew is twelve. He was three when I went through the school. In eight years Andrew will be old enough to attend Partners in Policy Making as a self-advocate. I hope he will want to go. Maybe he will be the one sharing a success story, presenting a new entrepreneurial idea or speaking to his representative about his own personal experiences with autism. Maybe he’ll do something even bigger. Maybe I will too.

It feels a little risky to dream even though there’s no risk in dreaming. It’s the realization of the dream that can frighten. It’s disappointing when our dreams do not come true. But, ¬†fear of disappointment should not keep us from dreaming. Some of our dreams may never come true, but they keep us stepping higher and further than we would have stepped had we never dreamed at all. It’s in the stepping that occasionally we step into a passion or niche that we would have never found without the dream.

We cannot be scared to dream!!

Meeting successful adults with disabilities is important if you have children of any type of disability or diagnosis. I highly recommend finding mentors. Spend time with them. Ask them questions. Shadow them if possible. We need people with disabilities who are thriving in our circle of influence. It is essential to re-imagining! Make friends. Let them teach you!!

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Check out the link to Tennessee Council on Developmental Disabilties: ¬†http://www.state.tn.us/cdd/partners.shtml. If you do not live in Tennessee, check your state website for more information. Here’s a little history from Widipedia:

“The program was originally conceived by the Minnesota Governor’s Council on Developmental Disabilities under funding by the U.S. Administration on Developmental Disabilities¬†and has since been adopted in over 35 US states.¬†It has also been adopted in the Netherlands, New Zealand, Northern Ireland, Portugal, Ireland, Scotland, and England.¬†The “core” curriculum covers current issues, state-of-the-art approaches and best practices in many areas including legislative processes and strategies; communication and team-building; using assistive technology; independent living; creating inclusive communities; and employment.” (http://en.wikipedia.org/wiki/Partners_in_Policymaking)

 

I just couldn’t resist adding a picture of my sweet Andrew. He is 7 in this picture.

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“And he said: ‘Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven.'”

This is a little girl from our church serving communion to one of the men. It’s one of my favorite snapshots of God’s grace, goodness, and love. We have much to gain from studying the development and play practices of children and finding moments in our day to remember and practice what God has stated. This isn’t religion. It’s the opposite. It’s learning to “play” in a world of unlimited freedoms while gazing into the eyes of our Papa.¬†

1. Children are eager to play, learn and discover.

2. They love to help.

3. They see life from a different perspective.

4. They make messes.

5. They unashamedly ask for more.

6. They dream big dreams, tell big tales, and imagine impossible scenarios.

7. They wear mismatched socks, play for hours in the dirt, and track mud in the house.

8. They learn about their friends.

9. They fall down, get back up, and fall down again.

10. They love to mimic and learn through this practice.

This is God’s grace in its sweetest and most precious expression.