ableaware

ADA Livability Specialist / Medical & Disability Concierge

Hi Ellen

Hi Ellen

I’m writing this in response to your blog of 9/21/2012. “How can we make religion more accessible to children with special needs?”.

Apart from writing my first blog this week, this is my first response to a blog. I am the parent of a special needs child, now almost 22 years old. I am also a registered nurse and a person who has lived with a lifelong physical disability.

I have loved reading a number of your blogs over the past several weeks but this one in particular took me back to a sad time when our family struggled with a similar difficulty in assimilating our daughter to an important aspect of our Catholic experience. I had to struggle with a church that did not want to understand adaptations which would allow our daughter to enjoy her First Communion experience with her peers. We made it through, and the day was an enjoyable one as her brother served as altar boy on her special day. However, this compounded by later repeated lapses meant that ultimately we all left these rituals and this church completely.

I could see myself where you discussed trying to manage all of Max’s many needs and that maybe no, you did not want to be “spearheading special-needs programming”, at that same time. I have often been greeted with that same response. I have often accepted the challenge as well. But what others do not realize, as you well out-lined, is that simply adds yet another hat to the growing column of hats on your head! This growth on the top of your head is often unseen by others, you are; therapist, specialty shopper, nurse, education advocate, special needs advocate, case manager, parent of non-special-needs child, oh, and by the way, mother of a special-needs child. That is just the list for 9/21/2012.

So, may I offer both my admiration, and a little information! My daughter uses a wheelchair but did not always do so. She walked when she was younger and we collapsed her walker and placed it over the handlebar of the stroller that we used for distance. Maclaren, did then, and still makes excellent strollers for older children. It is a British company that sells many products over here in the USA as well. I did a little further research and found http://www.spinlife.com sells the Metro by Convaid. It’s a little pricey at $712 but claims it will hold up to 250 pounds. It has a neutral look about it, so it doesn’t stand out as a “special” but if needed, accessories can aid in positioning etc. Another site that seems to have a number of items is http://www.adaptivemall.com. They have a full stroller section. I have no connection, endorsements, personal knowledge, nor interests to be gained in sharing this with you. I searched far and wide when I needed just such an item, no need for you to do the same. I realize it’s been a couple of weeks and you may already have all this information at your fingertips. Something you might not know is that in using such a stroller you may be met with disbelief regarding your child’s need for such adaptation when other able-bodied children are expected to walk. Our stroller looked so “typical” that things backfired when we insisted our child could not manage without it. We were followed by park rangers at a national landmark out here in the West, presumably lest our child suddenly rise up and walk at this site! Therefore, keep old parking placards, cut them so that they show only the wheelchair symbol square, poke a hole and attach one to the handlebar of the stroller. This helps to quell questions from strangers who don’t understand. Park rangers have been better trained as well in the 15 years since this happened to us.

I will continue to read about Max and Sabrina. They are both wonderful additions to our world, as is their mother! All the Best to You!

Disability and Humanity

Disability affords the opportunity to bring together all worlds. Whether one is young, elderly, wealthy, poor, Caucasian, Hispanic, African-American, religious, nonreligious, athletic, sedentary, outgoing or rather introverted, all peoples are brought together under the umbrella of this common reality for 20 million people in this country. This is not a category one would seek partnership in obtaining. Most data suggests the greatest numbers join this group in adulthood. This may occur by way of accident or illness. However, a significant group sign-up before they know it, these are infants and young children. Their parents joined with them.

My hope, via this blog, is to shed light for those trying to understand issues that persons with disabilities come up against while moving about in this able-bodied world.

Some of you live in the neighborhood of disability. A loved one, a close friend, maybe a former colleague, has come to know a disability personally. You have concerns, but with no personal knowledge to share you feel inadequately prepared to support your friend. Certainly schools, family, and community organizations do not spend time educating persons on how to carry on a relationship with someone who has experienced a dramatic life changing experience.

A distinct memory that I carry is one which took place in a pediatric neurosurgeon’s waiting room. My husband and I had arrived early with our daughter for her appointment. So too, had several other families. As I looked around I noted that, apart from small babies in arms, almost all of the other children had gathered around two play tables, exchanging toys and books and generally laughing and enjoying one another’s company. I further noted that the families appeared to come from all corners of the world. They were Muslim, Christian and Jewish. Some were young, others somewhat older parents. All ethnicities seemed to be represented. We parents were mostly quiet enjoying watching our children in their play.

A father sitting next to me explained that they were awaiting news regarding the eight-month-old child he held in his arms. Apparently this baby had a tumor in her brain and the expectation was that it was cancer. He held out hope, that the finding would be that it was benign. He said, through tear-filled eyes that he didn’t want his daughter to have to undergo all that had happened to his niece. This beloved niece, his brother’s child, had been buried just a few months before at the age of five. He also said that he didn’t think his parents would make it, if a second grandchild were lost to this disease.   I realized that at that moment the same collective prayer was being sent forth to whichever Spiritual Deus that was residing in each of those families hearts.” Not my child, not this time, not me, not now,please.” But also it likely included,” not any of these other children either”.

Some went home with good news, others not so good news. None more righteous or deserving than any others present that morning. It made me think that issues that face the representatives of the United Nations as they come together for their meetings should be held under just such a format. Sitting, waiting, and hoping, in that room, gives one an entirely different perspective on brotherhood and humanity and what it means to be a family on this little planet we all call home.

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