Growing Up Special

Parents of Special Needs and Adopted Children Seeking Excellence

Posts Tagged ‘services coordinators’

Feb
16

Special Needs Finding A Place Of Love & Acceptance (part 1)

By Rainy on February 16th, 2011

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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.

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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/

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