Growing Up Special

Parents of Special Needs and Adopted Children Seeking Excellence

Posts Tagged ‘challenges’

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. 

Oct
05

Autism On The Rise

By Rainy on October 5th, 2009

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         A huge area of concern for parents around the globe is  reports declaring that Autism diagnosis numbers are on the rise…some in fact, are saying that the numbers are doubling.  I read a recent article here: http://bit.ly/I5rII  .  This increase in numbers is frightening for those who are of childbearing years.  Baby boys are four times more likely to be diagnosed as being autistic as baby girls are; is that for real?   What is causing our children to be born with this condition?  Is it the environment, diets, or genetic disposition?  Is this an epidemic, or are our fears and faulty diagnoses at the core of the problem? 

         Frankly, if your child is one who is affected by an Autism diagnosis or label…it really doesn’t matter.  The fact is that your child is facing some serious issues both socially, emotionally, and physically.  What is desperately needed is some answers; and the only way to get those answers is through research.  Funding is a big part of the research solution.  Learn more about Autism and it’s research issues here:  http://www.autism.com/ .  If we all work together…we can improve the lives of families around the world who struggle with the effects of Autism.

Aug
18

Special Needs Families: Are You On A Trip To Holland?

By Rainy on August 18th, 2009

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                                                           Are you on a “trip to Holland”?

         The poem written by Emily Perl Kingsley was cut out and pasted on refrigerator from February of 1992 until we moved to a new home in 1995.  It was titled, “ Welcome to Holland”.  In essence, it was a snapshot of what it is like to being unprepared when you give birth to a child who has challenges, such as medical or cognitive disabilities.

         There is one section of the poem that I read over and over again, “After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”     “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”   But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.”

My husband and I wanted to go to Italy and ended up in Holland on February 7, 1992.  I should have known that our trip to second time parenthood would be bumpy as we were told that our second born was to be a girl.   “Two girls, so nice”, my OB-GYN told me.  Guess what, we had the first boy born in 28 years in my family when he arrived via emergency c-section.  Not breathing right.  Sugar too low, heartbeat too high.  I could already feel the “plane veer” off course.

       Days later we were allowed to go home only to notice that our little “fella” was turning the color of a Sunkist orange.  Not good.  Not good at all.  Rushed back to the hospital to be told it was simple “jaundice”.  Nope, nothing in the child’s life would be simple, I found out. Days go on and before the first actual tulip bloomed that year we were in intensive care with our young guy.  Jaundice ended up to be a “liver problem” – not yet determined, but possibly very serious and could lead to severe retardation.  Respiratory syncytial virus/ RSV nearly claimed his life.  Reflux choked him every third breath.  Our nightmare continued.  You know you have a very sick baby when you can’t find room in the isolated PICU suite because of the number of doctors, nurses and respiratory therapists working with your child to keep him alive.  You also know your baby is very ill when the nurses come and ask you questions such as, ‘Is there anyone we can call for you?”  Does God have a hotline, I wonder? 

      For any new parent who has a baby you know this is the worst part of the scenario- waiting.   You wait to see if the tests are positive for illnesses that are unimaginable.  You wait to see if the insurance will cover the rare and complicated blood work, machines that are helping your child stay alive or special therapy sessions ordered.  You wait to see if you will ever have a “normal” life again for yourself, your family, your work, etc.  Will your child walk, talk, eat normally, have friends, etc.? You begin truly begin to hate Holland. 

      Then, little by little, the wait can end.  Test results come back.   Therapies begin.  Hospitalizations end and you go home.  But, for many of us, this is when you start a new journey in to the realm of Special Education.  Here is the most ironic part of this story and the reason I am writing it for this blog.  I am a special educator.  I am a full fledge, certified School Psychologist that is trained with helping parents and children with special needs.  All my training flies out the window as my mind is trying to process the months of evaluations, reports and recommendations from specialists.   Ironic indeed.  I have now changed teams!  Instead of being the intervention specialist I now am the one calling our local school district asking for help from the Early Intervention Team!   And I am so grateful when they appear at my door. But, I still have problems with paperwork and understanding all the information.  How can this be?  I do this job everyday and I am still wading through it because my head is so full of grief and confusion.  The team helps me. Everyday gets a little better. Clarity arrives with every meeting or visit from a team member. Family members come on board to help.  We get it griethrough it. 

     Now fast- forward, our son improves with therapy as he starts to talk, walk (actually run) and become quite sociable.  He has more hospital visits but he is deemed fairly healthy.  His liver has a benign disorder and we are told that he shouldn’t go without food or enter in to the military.  We can live with those two stipulations to have a benign liver disorder vs. the alternatives.

 I also become a much better psychologist.  Often I go to our refrigerator and I read Welcome to Holland.  As I do, I imagine my own fears, but also the see the faces and hear the sad, confused and sometimes hopeful voices of countless parents and children I have worked with in the past. I am a better person because I stopped in Holland than Italy.

    As for the little “fella”, he is applying to colleges now. He has had his challenges, but nothing we couldn’t handle without the help of school and healthcare professionals.

     And guess where he suggested we go on summer vacation this year?  Holland.  Well, I’ll be!

Hello Readers:  I would like to take this opportunity to thank Louise Sattler.  Louise is an expert in working with children…as she said…she is a certified School Psychologist.  She also heads up a great business known as Signing Families.  She has a website that you can access here:  http://www.signingfamilies.com.  Louise is available to do workshops and she does speaking engagements as well.  Teaching sign language helps build relationships and opens doors of communication for those with special needs.  Louise and Signing Families has a wonderful DVD which teaches beginning sign language for babies, toddlers and pre-school age children; it has over 100 signs to use. 

      I can say that she is a very engaging woman who is open and willing to share her expertise and her experiences when it comes to educating and helping families succeed in opening doors of communication for their special loved ones.  Thank you Louise for sharing your personal perspective of living successfully with challenges in parenting children with special needs!

Dec
23

When Love Isn’t Enough

By Rainy on December 23rd, 2008

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        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.

Sep
30

What’s Your Family’s Story?

By Rainy on September 30th, 2008

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        Every family is made up of individuals with wants and needs.  Every family is different.  Add a person…take away a person; and, it changes the family dynamics.  Add a need, or take away a need; and again…the whole composition of the family changes.  This is to be expected in the life of every family. 

         Families that are created out of adoption have a multitude of blessings and challenges.  The same can be said of families that have special needs children…whether they are born into the family or adopted.  The term family falls under an umbrella of accomodations; each person’s wants and needs are accomodated into the family unit (or should be).  Your place in the family is guaranteed out of love, acceptance, encouragement and the occasional nudging towards further personal growth.  A healthy family is designed to be a personal support system. 

         My own family has both adopted children and special needs children.  We have blessings and challenges like any other family.   Those blessings and challenges aren’t JUST related to being a family created from adoption, or of special needs; it is sometimes a mixture of both. 

         I grew up in a large family and my husband did as well.  We are used to understanding that each person is unique.  Each person is an individual, as well as, part of a family unit.  Often in my sibling group we had wants and needs that conflicted with one another…my husband’s family as well.  We had to work out any differences between family member’s expectations.  My husband’s family was impacted by some special needs, my family was not.  Neither of our families were impacted by adoption.   And yet, because we came from large families…some would consider our families to be special needs just because of the number of children.   Each person in a family impacts another; that is typical of any family that consists of more than one person.  There is no such thing as a “normal” family!  :)

          We are blessed with creative thinkers, business minded or logical thinkers, nurturers, artistic individuals, readers, non-readers, free thinkers, outgoing personalities, highly verbal personalities (how come i didn’t get any quiet personality childen?) LOL, musical, non-musical, conformists and non-conformists, high IQ-low IQ, flexible and non-flexible personalities; you get the idea.  We are a creative mix of likes and dislikes.  It is a balancing act at times trying to meet everyone’s needs.  But, it is done because we want to; we desire to recognize each person’s requirements to be successful, to be healthy and happy. 

           Each family has a story; it has a beginning, a middle and an end.  Everyday we are writing new pages to add to the story.  Those stories are of interest to others because we can learn from one another.  We can share in the laughter, the confusion, the joy, the sorrow, the sense of betrayal or anger that fills a family with a lifetime of experiences.  The stories of your family can mingle with other family stories to create a sense of encouragement,failure, discouragement, success, education, or compassion. Experiences can draw people together or set them apart. 

            Isolation is sometimes a part of family life when you are raising adopted children or special needs children; just because of the lack of understanding; or, perceived lack of understanding, of those in your social circles or community.  It is very important to find support in those times of feeling isolated by behavior difficulties or by circumstances.  

           We must learn to live in the moment…not be defined by labels or expectations.  Each day, each moment is open to interpetation.  We can stop, we can reread, we can change directions and we can grow and learn.  Sometimes people get a label and try to skip all of the chapters in between the beginning and the end…they just want to go to the end of the book and see how the story turns out.  It is in the daily living…getting the most out of each and every moment that we are given to live, that we find fulfillment and joy. 

          So, what’s your family’s story?  How was your family created?  Is your family life the way you expected it to be?  If yes, why?  If not why?  What would you change if you could?  Can you change it?  Can you change how you think about it?  What impact does your family have on each other; what impact does your family have on others around you?  What does family mean to you?  What do you love about your family?

Sep
02

Is There A Need For Support For Families Of Adopted And Or Special Needs Children?

By Rainy on September 2nd, 2008

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        My husband and I are the proud parents of six adopted children.  We have 3 girls and 3 boys.  Each person has their own gifts and blessings.   Some of those children are special needs children; and some are not.  We have children with special needs issues ranging from bi-polarism, to ADHD, to learning disabilities, to fetal alcohol spectrum disorders, some have behavior related issues.  One is homeschooled, one is in special education classes, one should have been, and some have benefitted from regular educational services. Some are adults living their own lives very successfully.  Others struggle in some areas of  day- to- day activities.  A couple have to be supervised or encouraged every waking moment of the day to help keep them focussed on being the best person that they can be.  :)    They are all loved, supported and have brought much to our family. 

        Each person has their abilities and their challenges.  None of them did anything to deserve the life they were born into; they had no control over the very beginning of their life.  Yet, each of them must strive to have a loving, healthy, productive and happy life.  It is possible.  Some adaptations may be required for some of my children to have an independent life; but, it is possible.   Since it IS possible, we will do whatever we can do to help make that happen.

          Adoption is a complex thing.  It serves many purposes and yet…it has an ability to wound, to heal, to lift up, to destroy, to save lives, and to shuffle lives.  There are always imprints of a life that was supposed to be; melded into the life that is gifted and aborbed into another family.  There are moments of: celebration, sadness,  regrets, and purposeful choices; adoption is a wonderfully, painful mixture of the emotional buffet of life!  It is a parent’s responsibility to seek excellence for the quality of life for their children.

        Our family is special and unique; I bet your family is too!  We have had many successes as a family; as well as, some twists and turns that were unexpected.   The dream of a new parent doesn’t usually include the expectation that things could turn out differently from the dream of a picture perfect family.  A birth family or an adopted family does not get to choose from an ‘ala carte menu, of challenges it may or may not face.   As most parents would say, we live and breath for our children; and yet, we are not ashamed to say at times…we wonder…did we do the right thing?  Our children didn’t get a choice in life in which family they would grow up in.  There are shades of grey for each person…balancing the pros and cons of adoption.

         Whether a child is brought into a family by birthing it into the family, or by adoption…the child is received with awe, with excitement, and with hope for a beautiful future.  There are unexpected situations at times regarding health issues, behavioral issues, attachment issues, emotional issues and even loyalty issues.  Those things and more can affect the foundation of a family.

         Many families are jolted to learn that their child has special needs or that their adopted child has issues that will affect them and their family for years to come.  It is a difficult time for parents and other siblings to struggle to learn about the issues facing the family…because…none of us go it alone. 

          Family is a support system all unto itself…but, sometimes the issues can seem overwhelming.  That is the time that families need to reach beyond their boundaries that are self imposed, because many do not understand what we face as families with challenges.  Don’t let that stop you from reaching out.  You just might be surprised by the impact that you could have on another…or vice versa.

          Really, for many people going through the shattered reality that their family is not following the dream of perfect completion…there is a sense of isolation and a perceived lack of understanding from others who have not walked in the same pair of shoes.

          So, is there a need for support and information for families who have experiences that can mirror each other?  Is there a wealth of understanding that is untapped because we have not had the opportunity to join forces and absorb techniques and encouragement from one another?  I think there is.  I have heard so many comments that would break your heart.  Families that are under so much strain that they threaten to break and disintegrate under the pressure.  If one person or family can benefit from sharing and encouraging each other here; then, the blog will have served it purpose.

         Do you know someone who has things to share?  Do you know someone who could benefit from a little support or information?  Do you know someone who is facing a future with a special needs child and is struggling?  Do you know someone with rose colored glasses that is thinking about adoption; but, isn’t willing to accept anything less than perfection?  Bring them to a place that will enlighten them, encourage them, and embrace them!  Families should be celebrated and enjoyed…not everyone is blessed with people to share their love with.

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