This is the second part of a guest blog post by my friend Connie Baum where she shares a very personal journey that her family has taken as a family with not one but two special needs sons. To read part one click here: http://www.growingupspecial.com/special-needs-finding-a-place-of-love-acceptance-part-1/
Guy’s health began to deteriorate, however. A surgery from which he did not recover well left him with memory issues, confusion, and lethargy. It was an exceedingly painful decision, but it needed to be made: Guy needed to be placed in a nursing facility for 24 hour care. At the time of his arrival, the staff estimated he might linger for six months. He was weak, thin, depressed, in great pain, and was very confused. He was 29 years young.
It was about this time in his life that his Services Coordinator, who had been a faithful partner in so many transitions in Guy’s life, transferred to a different office. He would be served by a new coordinator. I will always remember the young dark haired beauty who arrived, curls bouncing, carrying in the stack of folders pertinent to Guy’s case. We loved HER at first sight, too! She was a mighty advocate for as long as she worked with Guy.
Over a decade, Guy’s health had significantly improved. Because of what Mom had learned about water, supplements, sleep systems, energy medicine and a plethora of information he was able to participate in another workshop setting. It was with great joy that he became able to live in a Group Home. He would miss his friends at the Nursing Home but a Group Home would mean more opportunity for learning and a more upbeat existence.
Things with the agency sponsoring the group home began to unravel at the same time we parents needed to simplify our lives. We consulted our beloved services coordinators-past and present-for answers to our dilemma.
As we were debating our course of action we learned of a brand new agency with a fresh vision and hopeful philosophy. Could we trust this new agency? Would they let us down?
After a VERY rough start to the beginning of a chapter in life that put those step brothers back under the same roof, we have met the people who will be caring for both guys.
These people WANT our boys. They have a home that is laid out so as to accommodate them. They have children and relatives who will embrace them. They seem to be well qualified and well trained for the job they have accepted. This amazing couple, and their family, came to the agency at THE PERFECT TIME. I am persuaded it is a ‘God thing’!
Nothing in life is certain. But we are feeling mighty elated! We have no control over things like our kids’ lives, so we must TRUST that Divine Providence is at work.
Special needs have become special blessings on so many levels!
This morning we are marveling at the synchronicity of how our boys are enjoying a quality of life we dared to hope might be possible. If it is not synchronicity; if not a God thing, then, pray tell, what IS it?
If you would like to learn more about Connie you can check out her Health And Wealthy site
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!
A huge area of concern for parents around the globe is reports declaring that Autism diagnosis numbers are on the rise…some in fact, are saying that the numbers are doubling. I read a recent article here: http://bit.ly/I5rII . This increase in numbers is frightening for those who are of childbearing years. Baby boys are four times more likely to be diagnosed as being autistic as baby girls are; is that for real? What is causing our children to be born with this condition? Is it the environment, diets, or genetic disposition? Is this an epidemic, or are our fears and faulty diagnoses at the core of the problem?
Frankly, if your child is one who is affected by an Autism diagnosis or label…it really doesn’t matter. The fact is that your child is facing some serious issues both socially, emotionally, and physically. What is desperately needed is some answers; and the only way to get those answers is through research. Funding is a big part of the research solution. Learn more about Autism and it’s research issues here: http://www.autism.com/ . If we all work together…we can improve the lives of families around the world who struggle with the effects of Autism.
The Care and Feeding of Guy Foster—Part One
The care and feeding of any family of kids is an important undertaking. Every growing body needs lots of whole foods; good pure water; adequate exercise and sleep. Every body requires large amounts of hugs and laughter to mature properly. That’s what people have in common with one another.
I have had a lifelong interest in food, nutrition and all things pertaining to health so it was natural for me to gravitate toward healthy choices as I prepared meals for my growing family.
When we welcomed a certain charming three year old with multiple health issues into our family, it became all the more imperative to pay attention to what we all ate and drank and how we managed the care of our health.
The new kid on our block, Guy Foster, had four caretakers in three months before his arrival. Prior to that, he had lived in two hospitals and he endured multiple orthopedic, exploratory, corrective and brain surgical procedures. To be honest, Guy was an adorable, busy blob of humanity whose needs were monumental.
The most pressing issue was a shunt that keeps spinal fluid from collecting in his skull. There were many other challenges, too, but the most persistent was the dreadful odor that surrounded Guy’s body. No amount of scrubbing, no brand of soap, and no sort of deodorant offered any relief. It was a major concern.
Guy’s health had its ups and downs. When Guy was 29 he underwent a surgery that had a bad outcome. That’s when it was decided he should live in a nursing home. Only those who have gone through that process can appreciate the pain of that time in our lives.
During Guy’s tenure in the nursing home we discovered a new kind of water. It had more minerals and oxygen so we thought it would be good to get Guy to drink that. He even had a spray bottle for topical use.
We also acquired a magnetic mattress and pillow, along with a Far Infra Red comforter for the hospital bed on which he languished most of his days AND nights. We slipped magnetic insoles into his shoes, much to the chagrin of his orthotics and prosthetics specialists. They just did not fathom the concept.
The dietary people were unhappy, too. They did not appreciate or value the purpose behind the juice or “green stuff”-barley grass-we provided to accompany Guy’s meals and the nursing staff complained bitterly, loudly, and often that the whole foods supplements we brought for Guy had not been sanctioned nor labeled by the pharmacy department.
As time passed, we opted not to use any medications in Guy’s treatment. The medical staff at the nursing home became ENRAGED over that decision but as Guy’s legal guardian I had the right to make that choice. It was in Guy’s best interest, after all.
Over time, the toxicity of the medications eventually left Guy’s battered body, leaving him more alert, more active. The many surgical scars that covered much of his body had faded into oblivion. Best of all, even his breath was sweet! He was no longer plagued by the issue of odor!
Thank You Connie for your guest blog post!
“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 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 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!
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