Category Archives: special needs

A Different Learning Journey

Learning-JourneyAs a lifelong learner,  I hope you will humor me as I share our most recent  learning journey.

Many of you know that I have a younger sister who happens to be Developmentally Disabled. We have lived with my sister full-time for a few months twice  before when our Mom was in a nursing home, but we became permanent room-mates when Mom passed away in December 2013.

Since  then, I’ve learned that growing up  with my sister and being responsible for her full-time are two distinctly different roles. I knew the day was coming for years and tried to prepare,  but I was not really ready when the day arrived.  Number one, it meant the loss of my parents. Number two, it meant some major life-style changes for her and for us. Thankfully, she has made the whole process  much easier than it could have been with her generous and giving attitude.

I was 11 when my sister was diagnosed with Cornelia De Lange Syndrome at the Cleveland Clinic.  I distinctly remember the day Mom and Dad brought her home with the testing results as they were extremely upset.  It wasn’t really the diagnosis that troubled them, after all, they would not have gone to the Clinic had they not suspected there was a problem.  The angst they were experiencing came from the recommendation by some of the doctors  to immediately institutionalize her for the sake of the other children. That could have been the best choice for some families, but after much soul searching  my parents felt it was best to keep her at home. I was relieved as I did not know her as a child labeled with a syndrome and disability, but just as my little sister.

I’m not a big fan of labels as they can sometimes limit how you view someone, but I think I have clung to an anti-label mindset as that 11 year old sister of an Individual with Development Disabilities over the years.   I WANTED her to live as normal a life as possible and to be loved for the ‘smart’ person she was and is. Now that my role has changed as an adult I still want those things for her, but I have found that by understanding her disabilities, I’m better able to help her figure out her future and how to expand her possibilities.

Our home education philosophy of finding the best resources and help for the individual who is learning about life has worked well for this situation as well. The Cuyahoga County Board of Developmental Disabilities  and Welcome House have provided incredible resources.  Margie would not be thriving the way she is without their support and wisdom  and we are grateful.  These organizations and their staff have helped us to understand that her limitations do not necessarily  mean she cannot do something, but that there might be a different way to help her to do them.

I’ve learned that my sister doesn’t do well with abstract concepts, but she does great with habits.  Get her to do something on a regular basis and she is a force to be reckoned with.  We all have our imperfections, some more evident than others, but as my sister and I are each allowed to learn in a way that best suits us, we  have that ability to learn and to grow.

If you are in the midst of caring for a child or a sibling with special needs, I am always on the look out for resources and would love to hear from you.

 

 

 

 

 

Anne Sullivan Macey

“The most important day I remember in all my life is the one on which my teacher, Anne Mansfield Sullivan, came to me.” ~~ Helen Keller

Anne Sullivan, American Federation of the Blind, homeschool resources

American Foundation for the Blind offers this comprehensive site highlighting the life and work of Anne Sullivan Macy.

Portrait of Anne Sullivan Macy

While I was visiting the sight, I also saw that American Foundation for the Blind offers many other resources as well.

Special needs resources

I don’t often write about my family, but I was deeply touched by a recent post by Melissa Wiley concerning her son’s recent diagnosis.

Her post got me to thinking about the many different ways that parents of special needs children are their child’s best advocate.   I don’t have experience as a special needs parent, but as a sibling.   My younger sister was diagnosed with Cornelia De Lange Syndrome, a form of mental retardation many years ago. My parents unconditional love and advocacy for my sister have taught me the importance of learning all you can about any situation you may face and that you can be your own best advocate and for those you love.

Melissa mentions in her post that there is debate these days over the words mentally retarded being used to describe this community.  A new set of words are  popping up, intellectual disability and developmentally delayed.  I suppose that part of the reason some have pushed to change the words mentally retarded  to developmentally delayed or intellectual disability is because of those who have abused the words.

I’ve been with my sister to many a medical visit where they ask what is wrong with her and we tell them she is  mentally retarded, or more specifically was diagnosed with Cornelia De Lange.  However, those times are not a cruel use of the words, they are just factual.  I experienced the  cruel times as her sibling growing up and hanging out with others who’d call someone else a retard to make fun of them.    If you don’t have a mentally retarded family member, I suppose you wouldn’t be as sensitive to that usage, but since I do, it has been irritating to hear in jest and maddening when it has been directed at my sister directly.    I’m hoping that as other parents of so called “normal” children  become informed, they will inform their kids and that Wonderboy, his siblings and others will receive a little bit more of that wonderful unconditional love they willingly give and so deserve themselves.

Melissa’s website, her books and her blog are wonderful resources for all parents 24/7.   I’ve added a special needs category to the blog and I hope that if you know of any special needs resources,  you will leave a comment or send them along for me to share here.   I can’t think of a better first special needs resource to share here with you than Melissa’s  recent post, My Wonderboy .