Growing Up Special

Parents of Special Needs and Adopted Children Seeking Excellence

Archive for the ‘communication’ Category

Feb
16

Special Needs Finding A Place Of Love & Acceptance (part 2)

By Rainy on February 16th, 2011

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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/

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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?

Connie Baum

If you would like to learn more about Connie you can check out her Health And Wealthy site

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/

Apr
14

Include Me Please

By Rainy on April 14th, 2010

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     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. 

Nov
17

Special Kids Encourage One Another

By Rainy on November 17th, 2009

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     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?

     

Sep
05

Communication Through Sign Language Opens Doors And Bridges Gaps

By Rainy on September 5th, 2009

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 Today I did an interview with Louise Sattler who is the creative owner/operator of  http://www.signingfamilies.com.   Louise is an expert trainer at workshops and classes that teach American Sign Language to help people communicate with one another.  She is also a certified school psychologist who has an awareness of the importance of the need for families and community leaders to learn sign language.   Sign Language opens doors and bridges gaps for people who are hearing impaired, or who may have developmental delays or special needs.  Communication is something that many people take for granted.

         Put yourself in the position of a person who is hearing impaired, or a person who lives with special needs; and, consider some environments they they may experience differently than you; such as a trip to the hospital or emergency room.  How different would the experience be for you if you were the one who had difficulty making your needs known to the health care professionals.  Or say you are an elderly person who is experiencing hearing loss…how are you going to communicate with other residents or say the staff?   How about shopping or getting educational services at college or in elementary school?   How about ordering a meal in a restaurant?   Do you see how the quality of life can be improved for people impacted in this way?   Can you see how sign language could open doors for people if others in the community took the opportunity to learn it from someone like Louise or through her DVD’s?

Click on Image to listen to Interview

Click on Image to listen to Interview

        If you are interested in learning more about Louise and her educational services please listen to the interview here:  http://www.rapidcashmarketing.com/lorrainesinterview/signingfamilies.htm

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