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
This is a guest post by my friend Connie Baum…it is a personal post regarding her families journey. Thank you Connie…this is part one of a two part post.
Is it Synchronicity?
Any parent of children with special needs knows the management of their care can be challenging from the inside out.
If those needs are apparent at a child’s birth, there is shock and a tsunami wave of emotion ranging from fear and anger to guilt and sorrow. There is loneliness, worry, and confusion, too.
When those abate-or diminish-there is the day to day routine which can be punctuated with medical appointments and crises; sleep deprivation and difficult decisions.
When special needs children reach adulthood, it most likely means their parents have reached Social Security status. What about the perpetuity of the care of precious, special offspring?
Let me share with you a story:
Our little fellow had an assortment of birth defects that meant his birth parents were unable to care for him. He was shuttled from hospital to hospital until he was three years old, at which time he became available for foster care.
As this little boy was enduring surgeries to correct his anomalies our own family was mourning the loss of four babies who, for various reasons, did not survive their births. Because we wanted to round out our family to 4, we applied to the State to be foster parents.
Little Guy Foster arrived at our home on a blistering June day, accompanied by a social worker and her aide. Guy wriggled a lot and it was a full time job to make sure he stayed inside the car!
SIDEBAR: This was in the era prior to child car seats and seat belts! END SIDEBAR.
Guy had been described to us as a blue eyed charmer who was in need of an emergency placement. We later learned that the woman who planned to foster him for the long term had a family emergency of her own and was unable to accept this placement. We also found out that our home was the THIRD home in 21 days; the FOURTH in a month!
There was magic in the moment. He reached his little arms out to all of us and directed his greeting to me: “HI, MOM!” We all fell in love with one another that day.
Life with Guy was never dull. There were endless rounds of medical appointments and clinics; there were his strange behaviors and made-up language; we marveled at his will to do what all our kids were doing, despite the physical challenges and intellectual differences.
Along the way, Guy Foster was named Foster Child of the Year. He got to hug “his” Governor on TV the same day he ate lunch with him!
When he graduated high school and walked unassisted across the stage to accept his Special Ed diploma from the Governor of our state, another of “his” Governors, he got a standing O and it was quite the moment.
Along his journey from his arrival to our home and high school graduation he had endured many surgeries, three episodes of long term coma, in addition to many other ailments. He was a trooper who could laugh at himself. AND HE MADE US LAUGH, TOO!
Our nest began to empty but Guy stayed at home with Mom. There was Adult Day Care and he was a people person who knew everyone in our neighborhood.
When Mom remarried it created a blended family. Guy’s new step daddy had a special needs son, too. He lived in a Group Home and attended a workshop. Guy remained in the home we had shared and continued to attend Adult Day Care. We checked on him often to make sure he was eating well and managing successfully. When we found him unconscious, in need of an emergency shunt revision to correct spinal fluid, the decision was made to put him into a Group Home so he would never be alone.
He lived with his step brother and one other housemate. They all bonded and have remained close friends.
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: To continue reading read part 2 here: http://www.growingupspecial.com/special-needs-finding-a-place-of-love-acceptance-part-2/
Guy began to leave his bed for longer periods of time. His appetite improved. He became strong enough to participate in a sheltered workshop program. Then he went to his workshop eagerly and more often.
The most amazing wonder of all was that after ten years, Guy Foster LEFT the nursing home to live in a Group Home setting, where he earns spending money from his job in a recycling center. He has a network of people with whom he exchanges letters and jokes; he has a standing invitation to drum with a group of Indian friends. He even enjoys regular visitors to his apartment and phone chats. He is proudly learning normal life skills.
At this writing, Guy Foster is 42 years young and full of vim, vinegar and vitality. He encourages others every day with his greeting cards, his empathy and his love. He also believes the world’s entire population should be drinking “his kind” of water!
What I would like to impart to anyone whose eyes have fallen on this page is this: Feed every family member organic whole foods when you can; pure, filtered water and lots of it. Get adequate amounts of sleep and rest and balance that with movement, exercise. Supplement everyone’s diets with whole foods supplements and add in green super foods and highly mineralized juices. Not just fruit juices, but the supplemental juice products used by the ounce. Use as much fresh, raw food as you possibly can because we all need the phytonutrients, anti-oxidants, enzymes and vitamin/mineral content that is so plentiful in fresh foods. I’d also encourage anyone to boldly immerse yourselves in the study of body work-Reiki, Ortho-bionomy, massage therapy- whatever strikes your fancy. Investigate the wonders of energy medicine. Learn all you can about herbs, homeopathic remedies, Macrobiotic foods, Ayurvedic methods, and whatever else resonates with you. Find a good chiropractor who understands that the body heals from the inside, not the other way around. Any health practitioner worth his salt will teach you a variety of complementary ways of working with bodies that may not be “perfect” according to someone’s standard. One more thing: Make the kinds of memories that cause you to laugh so hard your face and belly hurt!
Families who avoid artificial sweeteners, MSG, soda pop, processed, packaged and micro waved food products as well as fluoride-laden dental products will notice a huge improvement in the quality of their lives. These changes will be remarkable where issues are noted involving the nervous system, digestion, and elimination.
As soon as the physical body gets its needs met, the mental needs fall into line, along with the emotional and spiritual. When those requirements are satisfied, fewer behavior issues are problematic, sleep is more refreshing, cheer is the order of the day and peace can reign in the busiest household!
Thank you Connie for sharing with us the experiences that you have had and the knowledge that you dont have to accept life as status quo…you can seek therapies that enrich the lives of our special needs loved ones.
“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