Growing Up Special

        I read an article that says that with prenatal genetic testing, performed before the 24th week of gestation that indicates a fetus will potentially be born with Down’s Syndrome, means that 90 percent of such parents have/or will choose to abort that pregnancy.  

        This means that less children are being born with Down’s Syndrome, it is a disorder that can affect the bodily functions of the person affected, they can have thyroid disorders, mental retardation, heart defects, reflux, ear infections, sleep apnea and some obvious facial cues such as a round face with small chin, and eyes that are almond shaped with an upward slant at the outer corners, they may have shorter limbs than the average person along with poor muscle tone.  Many people are fearful that they can not handle raising a special needs child who is affected by Down’s Syndrome because of ignorance of the disorder. 

           I wonder if by doing these prenatal genetic tests, parents are unprepared for the outcome of information.  Finding out that your unborn child has a disease/disorder/illness is only the first step.  What happens after that information is presented to the parents?   This information has to be dealt with in some means or fashion.  Sometimes there are procedures that can be performed on the unborn child to improve it’s health and well being; other times there is nothing to be done.  This is when some people decide to choose abortion as opposed to raising a child with special needs.   You can learn more about this disorder here:  http://www.ndss.org/ or here: http://www.nads.org/pages_new/resources/down_orgs.html

             Abortion is a forever decision…there is no do over.   What happens when one half of the parents wants to choose life and one wants to abort?  Or one wants to risk surgery or medical intervention and the other parent disagrees?  These issues can cause unbelievable stress and frustration…not to mention spiritual unrest when faced with a life and death decision regarding their child when it goes against their religious beliefs.   Time is often the catalyst for a hasty decision.  There were examples in the news story that talked about women/couples that made the decision for abortion…only to have future interaction with an individual with Down’s Syndrome, only to say later that if they knew more about the condition maybe they would not have chosen abortion. 

          Every life has value…fear is such a strong emotion that I think it can cause people to make a decision about abortion that they may live to regret.  If a person or couple truly feels that they are ill equipped to raise a child with Down’s Syndrom than I personally believe they should bring the child into the world and allow it to be adopted.   There is no shortage of people who wish to adopt and to parent a child…many people feel a calling to parent special needs children.   There are some people who consider the child born with Down’s Syndrome to be a “gift”; or to be endowed with an extra-ordinary ability to love unconditionally.   We should all be born with such a condition which causes us to love unconditionally!

“Moving Day Can Be Moving”

Jarry and Andy, two guys who went to Special Education classes, found their way into the Mid Nebraska Individual Services program as soon as they left school. Both fellows lived at home with their parents but when they left the classroom they qualified for workshop and housing benefits.  The two were already well acquainted from their school days and were close to the same age, so they made good housemates.  Staff looked after them during the hours they were not involved in sheltered workshop activities, ensuring all their needs were met and they were well cared for, living in a comfortable home on a lovely tree lined street.

Jarry managed to find work in a warehouse and if it had not been for a health condition, he may have been gainfully employed like any other high school graduate.

Andy, on the other hand, exhibited some behavioral issues that precluded private employment.  Instead, he shone in the workshop by folding mechanics’ towels, counting the bundles and stacking them. 

Both boys matured and learned life skills as their abilities allowed. 

It was shocking for them and their families to learn that the owner of the house they rented was going to move back and wanted her house for her own living arrangements.  It did not take long, though, before arrangements were made for the guys to live in a newly erected apartment building and they acquired a third housemate, Ron, who shared expenses in the new place.

Moving was exciting for the boys then because each would have shiny new living quarters, the same familiar staff, and new furniture!  The parents heaved and hauled all the boys’ belongings to the new digs and helped them get settled.

Change

Change is very difficult for anyone.  For people with disabilities it can be traumatic.  Ron worries that he will never see his Elvis posters and that he might get lost, Andy is sure he will never be able to find his miniature windmills and obsesses about where the calendar will hang.  Jarry just wants to know all about the closets and make certain he’ll have enough room for his Nebraska Cornhusker collection. Change requires a great deal of reassurance and routine!

More Change

More than a decade has passed since that major event.  The apartment complex no longer allows patio grills, Andy cannot play his drums without disturbing the neighbors, and the management is not willing to make needed repairs to their apartment.  It has been decided that more suitable living arrangements can be made by moving the fellows into a six-plex  complex near the downtown area.  All their needs will be accommodated beautifully in comfortable, affordable surroundings.  They will retain their loving staff, the Elvis posters, the windmills and calendars.  And Jarry’s room has enough storage for his growing collection of ‘Go Big Red!’ items!

But the very best feature of all?  Moms and Dads won’t have to do the heavy lifting this time.  Professional movers have been called!

Emotional Factors

Fear of loss figures into any move for anyone.  As a move takes place, we risk losing the familiarity of our routine, the comfort of known surroundings.  We may have difficulty remembering where the light switches are placed!  We may be concerned that we can find our belongings when we arrive at the new location.  This houseful of guys is no different in that respect; their fears may just be amplified and they will no doubt need large doses of reassurance and routine until the new place becomes old hat.  They are most fortunate, as are the families, to know that Staff has everything under control and all will be well.

Moving may be a moving experience but it can also be a great adventure!  Andy, Jarry and Ron will eagerly and cheerfully share their photo books to prove that point!

Connie Baum-guest blogger

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