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Introduction: Transitioning to Adulthood with a Disability

January 30, 2013 in Featured, Future Glimpse by Scott MacLellan

Note from the editor: Scott will be writing here regularly about transitioning to adulthood with a disability. Please feel free to ask him questions in the comments for ideas for future articles.

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For a young person with a disability, becoming an independent adult can seem almost impossible at times. I know this first hand. I am twenty-seven years old, and was recently diagnosed with Joubert Syndrome, a genetic disorder with characteristics similar to Cerebral Palsy. I live with my parents, receive a disability pension from the government, and am currently waiting for accessible housing. Getting to this point required research, form-filling and lots of trial and error. I’m fairly independent and have two college certificates.

Since my early teens, I’ve become interested in disabilities and how I can use my experiences to help others in similar situations. At first, my involvement was purely social. I joined special needs athletics, like Taekwondo and sledge hockey. I attended a summer camp for disabled children, where I made many friends, some of whom later became college roommates. In high school, I was asked to sit on my area’s district council for Easter Seals as a youth representative.

As a youth representative, I was part of a group called the Leaders of Tomorrow. I spoke on behalf of Easter Seals Ontario about disability and accessibility awareness. When my time with Leaders of Tomorrow was over, I continued making presentations. Some were still on behalf of Easter Seals, but now I was frequently invited to speak on my own. Over time, I became more comfortable with talking about my experiences as a disabled youth transitioning into adulthood. I was now presenting to management at hospitals, classes at universities, and youth groups at summer camps. I’ve covered topics such as going from pediatric to adult healthcare, entering post-secondary education, getting a job, accessibility, invisible disabilities, and living independently.

Recently, I have been searching online for a way to share my message with a broader audience. I contacted Support for Special Needs, which seemed like the perfect place for me to start. Over the next couple of months, I will be writing a series of articles for the site based on my personal experiences, as well as helpful tips to make transitioning smoother.

After reading these articles, if anyone has any questions or topics they would like to me to discuss, please feel free to let me know.

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Scott twenty-seven years old from Ottawa Canada. He is physically disabled, with Joubert Syndrome, a genetic condition similar to Cerebral Palsy. He has done a lot of public speaking about his disability, but this is Scott’s first time as a contributing writer regarding being adult with a disability.

He has a certificate in Scriptwriting, and hopes to ultimately end up working on a major science fiction television show. Right now, he is creating his own comic book with the hope that it will get published.

He lives with my parents and sister who are a great support, but are respectful enough to let him be independent whenever I’m able.

Appreciating Support by @erinrbreedlove

August 7, 2012 in Featured, Featured Member by Erin Breedlove

As adults, as parents, as caregivers, and as people who, for the most part, are independent, we understand the importance of showing gratitude for the things we’re given and the people in our lives.

Children, as dependent creatures often have difficulty understanding what appreciation means. Your children, as individuals impacted by disability, need to learn that a little appreciation and gratitude goes a long way. With that, enjoy a story of someone in my life who showed me, truly, that gratitude and appreciation only pay off in the end.

Like most children with disabilities, it wasn’t until about my sophomore year of high school that I began to realize that while there were laws governing how teachers and other support personnel were required to support me, it was often the things that people did just because they wanted to or saw that going above and beyond was the most adequate and efficient ways to do things. In high school, I had a wonderful support team inside the special education department, but outside, it took more work to help teachers understand that just because I had the letters I, E, and P attached to my name didn’t mean that I wasn’t capable or that they shouldn’t have treated me just like any other student. By graduation two years later, my high school was a model for inclusion, and for that, I’m extremely grateful.

When I began my college search as a junior in high school, I was told by several counselors and similar professionals that it was better to search college campuses by meeting with disability service centers and the people who work in them because if they couldn’t meet the needs that I had that were posed by my disability, there would be really no point in me attending the college.

On a dreary October day, I met the most wonderful support system, aside from my mother, I’ve ever had. (Because he doesn’t know I’m writing this, I won’t use his name.) Having personal experience as a parent of a child with a disability, I knew it was okay to tell him that I needed something, that something just wasn’t right, that something went wonderfully. After a rocky start to my college career through the first two years, my MillyDaddy (my term of endearment for him) saw me through it all. We went to church together,  and I had known a lot about his family, a lot about the ways that they were involved in the town. We truly were, and are, family.

In March of this year, I got the dreaded news that MillyDaddy had gotten another job at another state university. I was happy, as this meant that he was moving into the same town as his two children and grandchildren, but I was heartbroken at the same time. What would this mean for me? How would I walk past his office without the floods of tears that happened for the first few weeks after he had left? How do I explain my needs, very specifically, to someone else? The intuition that MillyDaddy and I felt was, and is, astounding.

Thank goodness for e-mail, text messaging, and cell phones. The last few months have been the hardest of my adult life to date. Last week, a friend and I made the trek to see MillyDaddy at his new job, where he was as happy as I’ve ever seen, and where, inevitably, he was the same MillyDaddy he’ll always be. Though I deeply wish he would come back to be with me daily again as he once was, I can be grateful and thankful for the lessons he taught me, not the least of which was the value of appreciation. Because of some things that have happened in my life, he’s truly a second dad, and I’ll always appreciate his support and his love.

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Erin can be found at Healthy, Unwealthy and Becoming Wise

ABCs on the Avenue to Advocacy

December 26, 2011 in Community Wisdom, Featured, Future Glimpse by Erin Breedlove

Advocacy, in terms of a special need, is hard work. It’s a skill that is developed with time, but it’s a vital skill for your child with special needs to learn at a young age. Why? Because as hard as it may be to grasp, you, as the parent, won’t always be with him or her to make sure that his or her needs are being met. Especially when they get to be my age and independent during their time away at college, they are their own best advocate and know their needs, at times, better than you do as their parent.

One of the most common questions surrounding the concept of self-advocacy is the question of age. How young is too young? My answer to that is simple. It’s never too early to teach your child the ins-and-outs of dealing with people, coping with the condition, and the art of being grateful for the services that they are provided.

The second, and perhaps the most important, question asked is that of how you teach self-advocacy. Admittedly, it’s not an easy concept to teach, but it’s an even harder concept to learn. So, three steps should get you on the right track to having an advocacy superstar!

Activate. Let your child take a small role in their care and management from a young age. Activate that interest within them by showing them what’s involved in drafting the IEP before the meeting, e-mailing the doctor to verify medication dosages, and preparing morning medications. Ask them, depending on age, how you should word e-mail or which medications they should take at the time. Give them an active role in the process of their own self care, and when self- advocacy transfers to the school setting, the fears and anxieties associated with asking questions to have needs met will be minimal. Just watch. They’ll start to want to help you manage their care, and some of your burden as the parent will be alleviated.

Believe. Let your child know that you trust him or her with understanding and knowing his or her needs.  This comes with a warning, however.  Believing may require your child to take risks that may cause them to fail, and you, as the parent, may look on in agony, but that’s the only way your child, just as anyone else, will learn right from wrong or will learn what works best in their situation and what might not work as well. By allowing these risks, you’re showing your child that you believe that they are capable of living a productive, happy, and healthy life while successfully managing their needs and their care. If you believe in them, they’ll believe in you!

Charge. Once your child is of age, and in most states, that means that they are fourteen, charge them with one new advocacy responsibility per year until the age of 18 or 21, depending on what is required of them.  For the first year, many students run their IEP meetings with the assistance of the team, just as you do.  You may need to assist with writing and making appropriate phone calls and other contacts, but ultimately, especially in the school setting, your child is the expert on his or her academic and social needs.  The expression and vocalization of those needs and desires may be difficult; however, part of the road to advocacy is identifying the weak points for your child in an effort to strengthen them and creating and molding a self-advocate that can’t be shaken.

As always, if you can share any of your personal experiences with training your child to be the best self-advocate possible, feel free to sound off in the comments!

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Editor notes: Erin is a college student with cerebral palsy who is passionate about advocacy, educational psychology, creativity among students with disabilities, and gifted students with disabilities. She is a regular blogger and social media activist and enjoys writing about her experiences as a young adult, twin, student, and future professional with a disability. Follow her on Twitter at @ErinRBreedlove

 

Called to respond, to love and to see beauty

August 3, 2010 in Faith by Admin Dawn

Do you have a spiritual perspective on why children have disabilities? Does God choose particular children/parents?

No disability is good. Some are a result of our choosing to live without God. Genetic disabilities are different. John 9 tells about a man who was born blind. Jesus said his blindness was not the result wrong behavior (neither the parents nor the man himself.) Instead Jesus continues, “It happened.” I think genetic disabilities and natural disasters are similar. They happen. We live in a good but not a completed world. Good but not completely perfect children are born into our world.

I’m more certain of what God does for children with disabilities and their parents than I am why they happen. Jesus had compassion for, hung around and healed children (and adults) with disabilities, even some who were ungrateful.

I don’t believe God chooses particular children/ parents to endure horrible disabilities. I believe God does choose to work grace in all of us. As my favorite rock star theologian Bono says, “Grace travels outside of karma, Grace finds beauty in everything, Grace finds goodness in every thing, grace makes beauty out of ugly things. As a Wesleyan the final’ ugly to beauty grace’ will happen when we leave these bodies and are glorified.

We live in the world that already experiences God’s grace and has not yet received all that God has for us. Donald Miller likens this to receiving an invitation to the Wedding Feast but not yet sitting down at the table. So we are called to respond, to love those with disabilities, to try to see the beauty in everyone and to prepare for what is to come.

Steve Thomas is Pastor of Families at Harmony Grove United Methodist Church in Lilburn, GA Together with his wife Cheryl he has two children Geren and Glori. Geren is a Senior at Parkview High School and Glori is a Freshman. Steve has a Master’s of Divinity from Candler School of Theology, Emory University. Steve is blessed by grace each day but counts by far the most explicit experience of God’s grace as the day when his wife Cheryl was a living kidney donor for a young girl with ARPKD.

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