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/
I don’t know if you, the reader, are familiar with special needs kids or not; but if you are, you probably already know about the special friendship connection and support that some special individuals give to one another. I know of a very special young lady who is doing her part to touch the lives of others with her poems, her words, and her website. She is beautiful and caring; her name is Jackie.
Jackie is sharing her gifts with others here on her site: http://iamspecialneeds.com/ . Jackie “met” a new friend named Michael on video; and, she said to her mother…he is special like me! I love that they accept one another for who they are. Jackie and Michael have shared videos with one another, lending each other positive support and encouragement. The whole world needs more people like Jackie and Michael.
In a world that is quick to look for negative things and point them out to each other…it is wonderful to find two individuals who have words of encouragement and love for each other. Here is a link to Michael’s video which tells Jackie how he appreciates her new blog. http://bit.ly/R432F
If you would be so kind as to visit Jackie’s website and let her know how her site touches you…I know she would feel joyful to hear your comments. Also, if you would watch Michael’s video and leave a comment I am equally sure it would make his day to hear your thoughts on his generous spirit of good will towards his new friend Jackie!
We need to teach everyone to love more, to criticize one another less…and we would all be our best selves now wouldn’t we?
When you first become a parent you think that love will conquer all things that get in your way while you parent your child. However, there are somethings that can’t be conquered. You can’t undiagnose a child who has been labeled special needs; and you can’t be the biological parent of a child that you didn’t give birth to. As a parent, your greatest tool is love…but love isn’t enough to make bad situations go away.
However, you can find ways to improve aspects of the quality of your children’s lives; and yours, as the parent of a special needs child or the parent of an adopted child. No matter what the situation, or what the diagnosis is…it doesn’t change the fact that you love your child.
Disppointment is a real life shadow when experiencing obstacles raising children with challenges. It can’t be avoided. But love isn’t enough to change limitations imposed by a specific diagnosis…but, love is enough to find ways to still enable as much independence as possible. When love isn’t enough to fill up the empty spots left by the void of a biological parent in their lives…it is enough to show compassion and empathy to help them understand that the empty spots don’t have to lead to destructive behaviors.
The truth be told; special needs children and adopted children need a strong advocate in life, in school, and in medical settings. No one knows your child better than you, the parent, and no one will fight harder for them; to get the things that they need, when they need it. Parents are on the front lines of battle for their child.
When love isn’t enough to magically make everything perfect and ok…it is enough to give you the courage and strength to face the challenges before you and your child; and to find ways to be successful and achieve the milestones in life, that you know your child will benefit from. Love is enough to provide acceptance and encouragement to be growing as a person to be the best person that they can be.