Wednesday, January 7, 2009

Living with a Child with a Disability

by Cynthia A. Smith, MS, CAS, JD

On December 16, 2008, I attended a press conference announcing the release of the findings from a research project titled Living with Autism. Although the study focused on children with autism spectrum disorders, I could not help but think a study on families of children with AD/HD or any disability that significantly impacts daily living activities might share some of the same findings.

I thought back to all the children with disabilities I worked with in high school and college, and to my own family experiences. As I listened to the results, I mentally checked off items of concern that I had heard from parents of children with disabilities over the years. The study confirmed for me what many family members and care providers have known for years: A child’s disability does not just change how we care for a particular child, it also affects the entire family because of physical and attitudinal barriers in society.

Harris Interactive surveyed 1,652 parents of children who have an autism spectrum disorder and 917 parents of children without disabilities. Parents were questioned regarding the ongoing challenges their families face in the areas of daily life, relationships, independence, education, housing, finances, employment, and healthcare, as well as how they view their child’s future. Some of the findings include:
- 14 percent of parents of children without disabilities think their child will be able to make their own life decisions, compared to 65 percent of parents of children with autism.

- 51 percent of parents of children without disabilities think their child will be able to have a spouse or life partner, compared to 9 percent of parents of children with autism.

- 60 percent of parents of children without disabilities are concerned about their child’s future employment, compared to 76 percent of parents of children with autism.

- 32 percent of parents of children without disabilities believe their child will be living at home beyond age 18, compared to 79 percent of parents of children with autism.

- 42 percent of parents of children without disabilities believe their child will have healthcare that adequately covers their needs, compared to 18 percent of parents of children with autism.

More information about the study is available here.

Cynthia A. Smith, MS, CAS, JD, is CHADD's Public Policy Specialist.
You can read this blog and others like it at the HealthCentral Web site.


Anonymous said...

I would be considered a child with a disability (ADHD/ADD) and my older brother (Tourette's syndrome and ADHD, and most people consider ADHD to be a disadvantage in comparison to children without these types of "disabilities". The thing is I know I have ADHD as well as my brother, but that does not mean in any way am I disadvantaged. My brother and I are completely opposite in comparison in relation to our common disability. He struggles everyday to make it through his day, take his single class in college that he can handle, works at his job, and then comes home and plays his XBox for hours. much like some of the steriotypes of ADHD. on the other hand I excel at school, and yes i enjoy games but they do not take over my life. I have thought of my ADHD as an advantage over my peers. the meds help me concentrate better on my tasks that i must get done, but i find it restricts my thought processing and creativity in ways. i actually refused to acknowledge the fact that i had ADHD until i reached 6th grade, because it was a big change and i needed to be able to focus better due to more work and the need to be able to switch thought processes faster and more frequently. my brothers doctor actually diagnosed me when i was 5 yrs old, so i went any extremely long time without any form of medication or habit correction. despite the lack of medication in my younger years i found that i was able to think much more clearly and at a rate at which was possibly at least 10 times that of when i am on my medication. i could compute mathematical problems at an almost impossibly fast rate, as well as think up newer and different ways to reach the same answers. i was able to process my lessons and work so quickly in elementary school that my teachers didn't know what to do with me, and so i would get the rest of the weeks assignments in class and finish all of them by the end of the day. after that i would have nothing to do so i would get sent to run errands for the principal. now though in my senior year of high school, yes i still make pretty good grades. im in the top 15 percent of my graduating class,it would be higher if i hadn't decided i would rather take the Advanced Placement courses to help introduce me to what my college classes will more likely be like. after this year my plans are to major in neuroscience and ultimately become a doctor.

but despite all the good whenever im not in school like weekends and holidays i personally choose not to take my meds unless needed especially. im able to produce more creative thoughts that help with my passion for the arts (all of them). i spend almost all of my waking hours outside of school, and when i was in choir, at dance. i live my life constantly busy and constanly needing time management which i have found to be strugglesome for many with ADHD but not all. i have a drive to take part in extra-curriculars whereas my brother would rather just sit and play his game for days on end.

to make my point after all this is when i've read articles including ADHD i find that we are to be looked at as someone who needs help and doesn't have standards as high as someone without ADHD. in addition to that point this blog about impacts of daily living activities, and our parents experiences. my mother is a dance teacher working with children constantly. if she sees a child with a disability she encourages that child's parents to get a diagnosis from a doctor, so her life gives a positive feedback to others and is in no way an isolating barrier between us and others in society. as to the part on impacts of daily living activities is it not the same with every family? i mean more and more kids do drugs and drink. does that not "Significantly impact daily living"? I am not trying to put anyone down, and am expressing my opinion with this comment, but if you or your child is diagnosed with ADHD don't consider it so much a disability or disadvantage toward your child's life, because each child is different, and effects each of us differently. look at my brother and me, he struggles but does his best, and i have excelled at the things that i do and i actually believe that my excellence is in part due to the fact that i am ADHD and my brain functions a bit differently.

***1 last thing: it is incredibly annoying that kids these days increasing use ADHD as excuse in school for things such as incompletion or being purposely distruptive in class. it is obvious that no these kids do not have ADHD, but are using it to there advantage***

thanks for reading this far into my rant/opinion of the differences of ADHD's affects on people and/or how we let our "Disability" affect us ourselves.


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Duane Smith said...

After failing the first grade, I was diagnosed with Dyslexia. I failed English in the 10th grade, and algebra a total of five times. By the grace of God, I graduated high school with a 1.9 G.P.A on probation for bad behavior. Following high school, I failed out of three different community colleges. The first class I failed was public speaking. After my third attempt at college, in as many years, I became a car salesman. Selling cars was one of the best learning experiences of my life, however, at the age of 21, I did not posses the discipline to work sixty-plus hours a week for commission. So I quit. Needing to do something, I applied for the Los Angeles Police Department, only to fail the written exam. My father was an LAPD sergeant. A friend of my father had administered and graded the test. Severely humbled and having no other options, I decided to try college a fourth time.

I figured if I was going to be serious about school, I should start by retaking the courses I had failed. During the summer of 1991, I enrolled in a public speaking course at Los Angeles Valley College with Professor Betty Ballew. Professor Ballew not only inspired me to take the class seriously but encouraged me to join the LAVC public speaking team. To this day, I don't know why I agreed to do something extracurricular that was academic...but I did! I joined the LAVC public speaking team, and my life was changed forever. Professor Ballew inspired me to celebrate my strengths, and address my challenges.

For two years, I competed on the LAVC speech team traveling around California and the nation winning state and national awards for public speaking. In 1993, I earned an AA in speech and won a scholarship to Northern Arizona University to compete on the NAU speech team. At NAU I enjoyed more state and national successes as well as international. After completing a BS in speech, I was offered a coaching & teaching position and an invitation into the graduate program for communication studies at California State University Los Angeles. In 1996, I was privileged to start coaching competitive speaking and teaching public speaking courses. In 1999 I received my MA in speech communication. As a dyslexic, I feel truly blessed to have experienced the life transforming gift, that is -- and can be for anyone -- an education fully realized by identifying and celebrating my unique strengths, while at the same time aggressively confronting my unique challenges.

I am now a tenured professor of speech at Los Angeles Valley College, where I serve as the Director of the forensics (public speaking team). I am now privileged to regularly participate with and foster countless success stories as I serve the very program that changed my life. On April 15-19th, 2008 the LAVC speech team competed against 74 other community colleges and over 450 of our nation's best speakers and won the Phi Rho Pi national public speaking championship tournament held in St. Charles, Illinois. However, the highlight of the year was a very special student named Marcus Hill. Marcus, a former stutterer, became the most successful competitive speaker in California community college history, as well as, the overall top speaker in the country while at nationals in Illinois. Like my Professor Betty Ballew, I am truly blessed with the privilege of helping students discover their individual strengths while actively negotiating their challenges.

In 1991, a college professor asked me if I was "retarded?". That same year Professor Ballew told me that I had "presence," and asked me to join the speech team. Professor Ballew focused on my strengths, and helped me to acknowledge and confront my challenges.

Please forgive any spelling mistakes :)


Duane Smith