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Parents with a special needs child

10 Sep

As I walked behind a young mother with the most adorable little girl it brought back memories.  These memories are heartbreaking and satisfying at the same time.  I watched the mother and child walk into the recreation center.  I was in the water by 7:15 am. Later I had the opportunity to watch them interact in the pool.  Moments later the father joined in the pool activities.

I had tears rolling down my face while I watched and reflected those difficult years that no one seemed to understand.  The years I didn’t go into great detail what it was like behind closed doors raising a child who was demanding, confused, behavioral issues, seizures, and a multitude of medical issues…but most of all just required time, patience, and a great deal of love.

My first child was challenged, but when I was told she was “mentally retarded” and would never walk I refused to believe either comments.  We went to the pool every morning at 9:00 am.  In time, she walked.  Maybe it wasn’t within the range of “normal”, but it was her “normal”.

She definitely was not “mentally retarded”, but that is just another diagnosis that needs treatment as any other illness.  Fortunately she’s very intelligent and we are blessed. These children are frequently slow because of the multiple physical, mental, emotional and psychosocial complications they deal with daily. The stigma of these devastating diagnosis remains in existence in 2012.  I’m sorry that we haven’t advanced as humans with all the educational material available.  Technology advances, but caring remains limited.  Why are so many people self-focused?

Why don’t these parent’s get the much needed support and help in raising these children?  They deserve as much love as any child on this earth.  As these children become adults I have found they are the most loving, caring, and compassionate individuals owing to their life experiences in spite of their difficult journey.

Cerebral Palsy is often another “invisible injury” to the brain and unless it’s causes obvious physical deformity it may not appear devastating.  Don’t minimize this situation…it’s usually a matter of dealing with behavioral catastrophic reactions.   The years I yearned that my child be like most other children.  They simply weren’t.  Parents of children that have cerebral palsy ranging from mild to severe certainly understand.

This little girl, like my own loved the water.  Her beautiful smile and laughter as her face touched the water and she probably had such a relief from the constant muscles spasms she gets in her extremities.  Her parents are embarking on a journey most will never imagine.  Others get hung up on the little things like who did what? When? Instead of appreciating the simple things in life.

A simple smile, a hug, laughter, flowers, birds, seasons of the year all simple things so many can’t appreciate. When you travel this journey you never lose sight of the important things.  You overlook all the ignorant comments, but they really never leave you.

When I said, “Happy Birthday” to this little girl she repeated back “Happy Birthday”, and that was such a pleasurable experience to know she was able to repeat what I said.  The conversation with her mother sounded like my situation.  The only people that really understand outside the immediate household are a couple of her teachers. Extended family have been excluded from their lives.  They simply are not able to help or understand.

Awe, how I believed things have changed over the years but now I’m disappointed that others still remain uneducated and unavailable to help.

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The real support needs to come with close relationships, yet those are the ones who can’t or don’t help.  They do not understand and refuse to get involved. They are in a state of denial or simply ignorant.

Verbal comments are hurtful to all, and eventually these families distant themselves to save their own emotional health.  Support groups are somewhat helpful, but time is limited.  Often, it’s just one added stressor to attend a meeting rather then deal with these issues on your own. Parents often internalize all the horrific comments about their child or children and they simply need to protect them regardless of their age.

Obviously, some comments are justifiable but they’re easier to internalize when it comes from someone who has been sincere over time. Negative comments accumulate over time.  Those who teach their children to be in denial also will not help or support. They learn to condemn and ridicule instead.  It’s a ripple effect.

There are educated and supportive people in my daughter’s life that live over a thousand miles away but I attribute this to parents who know the difference and teach acceptance to their offspring.   We’ve appreciated this support.  It’s more support then many families get.

Often the lack of support is attributed to a busy lifestyle or distance. They are raising their own children and time is limited.  Other times, it is just some lame excuse.  My heart aches when I see children with special needs.  It’s not just these children who have special needs…the parent’s have special needs as well in their own right.  There are so many ways life is different, and not everyone has the resources to deal with these problems.

Other reasons for lack of support are related to improper medical diagnosis.   Services are available when it’s clear a child was cyanotic in the nursery.  But, when this is not uncovered until that child is in their twenties, it’s too late.  Healthcare professionals need to be aware of the ramifications of covering up what will help parents provide the best opportunities for their children.  Helping parents understand birth trauma and get the proper help immediately can help families with the proper help.  This can prevent a lifetime of difficulty.

These children are mainstreamed in most school systems.  They are bullied far more then the average child.  These children have enormous difficulties to face without peer pressure out of control.  Home schooling is definitely an option, but this is an endless situation 24/7 without relief for parents.  Without additional help these families may succumb to severe depression and even suicide.  It becomes a lonely journey for parents and for the child.

It was my daughter’s first grade teacher, Mrs. Mackey who spent an insurmountable time on Sundays to consult with us and give her a plan to work out the educational aspect to her life.  With my greatest appreciation, she may never know how she had helped our daughter achieve such a high level of functioning throughout her life.  Our gratitude was often expressed, but as she advanced into adulthood the foundation of her success began very early on in life.

I haven’t had the opportunity to reach out to young mother’s until this moment.  I heard her say that their daughter’s behavior is worse when she’s with her mother then with her father.  I too found the same.  Maybe because the mother’s are with these young children most of the day.  The parents of these challenged children are remarkable.  They have a stronger sense of self…self-appreciation, self-reliable, self-sufficient, self-lessness…and sometime must be selfishness!

Praise all these mother’s and father’s and others who love these children and help them become the best they can!  It takes a strong sense of self-confidence to reach out and help others.   For those who ridicule these children they do so because they lack something important in their lives.  They also need help.  They need help in a very different way.  Thank goodness for all those who can reach out to help others.

Share a smile today or a simple hug.  Help the mother or father with a baby or a child in a stroller, or a wheelchair.  Give that young family a positive comment how beautiful their children are, or how well behaved they are.  You never know what they are going through…even if it’s just being a parent!  Days can be trying for all…even with the best of situations.  Everyone appreciates a positive comment!

 

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10 responses to “Parents with a special needs child

  1. Three Well Beings

    September 10, 2012 at 12:24 pm

    What a beautiful treatise on some really difficult challenges! Through the years I have certainly known families with similar experiences to those you mention. The lack of understanding and the lack of interest IN understanding is what floors me! The idea that even within families there is a closed capacity to reach out and extend love and consideration to ANY child is hard for me to understand, but I’ve seen it, too. It is so nice to know you even a bit better through sharing the story of your darling daughter. You help me remember to just be a bit more aware! Debra

     
    • brain injury self rehabilitation (BISR)

      September 12, 2012 at 9:34 pm

      Thank you. I’ve had a difficult summer and far behind on reading and writing but trying to get back on track. I’m getting there … so I have not forgotten to read! I’m just very slow, and try to write in advance but it’s not working as planned … but it’s still working. I apologize for not getting to read everything lately, but I will catch up.

       
  2. kflickinger73

    September 10, 2012 at 2:23 pm

    I love the pictures! j

     
  3. kflickinger73

    September 10, 2012 at 2:23 pm

    Tweeted @kaflickinger74 & shared on Facebook

     
  4. Maria Tatham

    September 11, 2012 at 5:42 pm

    Thank you, Edie, for helping me understand! Bless you for all you’re doing, what you’ve gone through, and what your daughter has gone through! It is so wonderful to know that caring intervention can really help. Bless you! Go get your hug!

     
    • Maria Tatham

      September 11, 2012 at 5:43 pm

      Also, prayers for this young mother and her little girl!!

       
      • brain injury self rehabilitation (BISR)

        September 12, 2012 at 9:46 pm

        Absolutely, we need to pray for all those in need. I was so touched by what she has gone through, and the journey she will travel. A mother’s work is never done. Take care.

         
    • brain injury self rehabilitation (BISR)

      September 12, 2012 at 9:44 pm

      Maria, I got my hug! I am behind on reading and will catch up. It’s always good to see those who visit, even when I haven’t been able to visit my own site!lol Take care and stay safe, Edie

       
      • Maria Tatham

        September 13, 2012 at 8:21 pm

        Stay safe, too, Edie! It’s so great that the Lord put you there at the same time and place, so that you could speak with her and help her see past her present situation. That had to be so encouraging for her.

         

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