Growing Up Special

      I was disturbed this past week by a news report of a special needs student who was left on his special needs bus.  The bus aide allegedly knew, according to news reports, that the student had fallen asleep on the bus but allegedly didn’t notify the bus driver.  It was reported that the aide was late for church or some appointment and didn’t take measures to ensure that the student was delivered to his destination.  That student was left on a freezing cold bus for over 19 hours without relatives knowing where he was.  If those accusations are proven to be true…it is unacceptable…both morally and legally.

        The student ended up being hospitalized because of the temperatures that he was exposed to while on that bus overnight on New Year’s Eve.  The family of this student was both horrified and outraged.  The student is on the mend…but, there may be residual fear that that student has to struggle with.

       In those kinds of situations…the disabled are at the mercy of the person who is responsible for their care in those moments.  The thing is…as a parent…you really have to rely on the personal responsibility and the integrity of the caregiver’s value system.  Will they care for your loved one in a safe and caring way, as you yourself would?  How do you ensure that your loved one is properly taken care of in your absence?

        When you leave your special person in the care of others you have to be convinced of that individual’s competancy.  When that caregiver fails to protect or neglects to provide safe and appropriate care…who is responsible?  Is it the individual…the agency, school, or system that they work for?  It is accountability that helps to prevent devastating situations from taking place.

        I think a big part of the equasion is that you develop a close and personal relationship with the care provider.  You try to make sure that there are checks and balances set up to hold people accountable.  The bus situation could be avoided if there is a system that does a final check of each bus seat before the aids/drivers leave the bus at the end of a shift.  Alot of school systems have a check list…the bus drivers and aides must complete a walk thru of the bus before finally putting a sign on the bus window or door that verifys that the bus is free of any riders when the aides/drivers leave that bus. 

       This was a horrible story; but, it is also an experience to learn from.  Any real life situations that you could share that would help another family?

        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

        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?

        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.