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/
When you are raising special needs children you know how painful it can be for your child to be excluded from other children and their activities. Sometimes your child’s challenges prohibit them from sharing an activity or experience that other children around them enjoy…but other times, it is either through prejudice or mis-information…or, a lack of understanding. No matter the reason, being excluded is not fun and can actually be harmful to your child’s self-esteem and their ability to form positive social interative relationships. Therefore, teaching how to accept and include others is a huge life lesson for families, schools, churches, organizations and agencies.
That is why i love the book called, The Friendship Puzzle. The children’s book is all about helping children to learn about the importance of accepting and including kids who are living with autism. It talks about differences and how friendships are formed once we understand each other. We have to learn to look beyond the surface of who a person appears to be different from ourselves; to see the real them. Then, we must find ways to include each other in our daily lives for a chance to become friends. Sometimes it is easy to misunderstand another person’s actions when we don’t understand why they do or say certain things; or, behave in a different way.
The Friendship Puzzle was written by Julie L. Coe and illustrated by Sondra l. Brassel. The book was inspired by Jennifer Maloni who’s children Dominic and Dylan are living with autism. The boys experienced a similar real life experience that was sad and disappointing. That experience is used in this book to make a difference in how we view people with disabilities. You can learn more about the book and where to purchase it here: http://www.friendshippuzzle.com/ This is not an affiliate link… it is just a book that I happen to adore.
That message, of accepting and including one another, is very profound. We can all apply that message in multiple ways to better the relationships we have with others without regard to abilities or disabilities; it is something that we can all improve on. This book and a recent news piece on an amusement park for those who are disabled reminded me of how often people neglect to include those who are different from ourselves in the things we enjoy; simply out of ignorance of how to do it.
The amusement park I read about is called Morgans Wonderland and it is in San Antonio, Texas. It was built by a father after a failed attempt by his daughter Morgan to interact in play with other children due to her disabilities and the lack of clear communication between the children alongside of a pool. The other children were playing with a beach ball and she wanted to play too…but lack of communication and understanding prevented continued play. This kind of situation can be heartbreaking…but in this case it was the catalyst he needed to dream of a place where special needs people and their families and caregivers could come and be included in all of the activities.
Gordon Hartman was the father and he has achieved his dream. Morgans Wonderland is a 25 acre park that lets the special need individual be themselves and experience the joy of an amusement park just like anyone else. They utilize volunteers at their park and they encourage families to come and enjoy their time together. I love the idea behind this park. If you are interested in learning more about Morgan’s Wonderland and all it has to offer…please click here: http://www.morganswonderland.com/morgans-wonderland-tell-us-about-inclusion.asp Again, this is not an affiliate link…it is just a place where a family can go to relax and have a positive family experience with their special needs loved one.
I just want to thank the Gordon Hartman’s and the Julie Coe’s of this world who realize the importance of acceptance and inclusion.
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.
I have been reading a book called, Love You To Pieces. It is a collection of written pieces on raising special needs children; some pieces are true and some are fiction. It is a book rooted in real life challenges facing parents of special needs children. It is not a Hallmark moment kind of book filled with false illusions of perfection.
Every family that faces issues in raising special needs children finds themselves learning how to do it in a way that is workable for their particular family. No one can go to a doctor or a website and find a perfect way of coping that is workable for each and every person in that situation. There is often no right way to do it. Many times in raising our children we have to learn as we go. Sometimes what worked the day before no longer works and we must adjust our technique.
This book showcases the emotional and the practical side of parenting challenged children. It is real and gut wrenching and truthful. The physical difficulties that parents face as their special needs child grows and their abilities do not. The doctor appointments that reveal multiple challenges that were unexpected. The public perceptions that both hinder and inspire progress. Siblings that are supportive and friends and relatives that are not. Relationships that support each other and relationships that flounder under the strain. Moments of denial and acceptance. Judgements and advice by people who have no real idea of what it takes to raise a special needs child successfully. Parenting is a strange mixture of courage and fear…searching for answers that we are sometimes unwilling to accept. These are issues that we all find ourselves in when parenting special needs children.
Often times, parents of special needs children feel isolated. It is a fine balance of looking for opportunities to socialize and educate our children in environments that will impose no further harm or damage upon our children. This book is a validation of so many issues, that we face, that it is somewhat comforting to know that we are not alone in our struggles. It is a book worth reading. It was written by Suzanne Kamata who is a fiction writer for an online magazine, Literary Mama. The publisher is Beacon Press; their website is: www.beacon.org and the book was copyrighted in 2008