A Parent’s Response to “On Being Tender”, 2013

This is a response to Margaret W. Lewis’ heartfelt article, “On Being Tender”, posted on Facebook by the National Down Syndrome Congress.  Her thoughts inspired me to write what has been on my mind for a long time.  I am the mother of an adult daughter with Down syndrome in her thirties who appears to fit into the category of “high functioning” (a term that I have never been comfortable with).  So many times people will tell me that she is doing well because of what my husband and I have done. I am quick to respond that her success is due to her “blueprint” which comprises HER unique medical, physical, cognitive and spiritual components. Her hard work also plays a huge part.  I add that many parents that I know who have young ones/adults with Down syndrome have also dedicated themselves to their child’s progress, but their loved ones may have had more intense medical, cognitive and behavioral issues to deal with. There are so many variables just as there are with the typical population.  Those parents are trying even harder and are doing absolutely everything “right” that they can within their circumstances.  I truly admire those who face these huge challenges and are steadfast and devoted.

When she was an infant we had no idea where her journey would go and initially experienced the devastation, confusion and disappointment that many do.  Did we envision then that she would live an hour away from us as she does today with forty-one and a half hours staff support a week? Did we foresee the cell phones (24/7 parental support and connection) being the pivotal instrument in her present living situation, often called the umbilical cord by me? Absolutely not!  Did the factors that she was our fourth child living in a small supportive community where Early Intervention just started when she was six weeks old play a part?  Absolutely! Did I.D.E.A. give her educational opportunities that others before her never had? Absolutely! Did the legislation for Medicaid waiver and Self-Determination programs play a huge part? Absolutely! We parented her just as we did our other three children but those important advances were pivotal for her life as someone with a disability.  There was and still is more specialized intervention and enrichment for her needs as her journey continues.

A mother came up to me a few years ago after one of my daughter’s speeches, and angrily told me that her child would never be like my daughter and walked off.  I was heartsick and wanted her to know that I did understand. I got it!  I have experienced watching other children my daughter’s age pass right by her developmentally, educationally and socially. The cardiac, cataract and complicated ear surgeries plus other significant health problems were also troublesome.  She speaks a lot about these challenges in her speeches but she also includes the honors she has earned.  Should she be discouraged from sharing what has brought her great joy? She has worked very hard to overcome many of the barriers in her life. Shouldn’t she also be able to celebrate them with others? Or is that considered bragging?  I hope not!

Her whole purpose for speaking as she does is to give encouragement to those associated in any way with Down syndrome, not to discourage and make one feel inadequate, jealous or guilty.  She is articulate for someone with Down syndrome and has chosen to use this gift to be a spokesperson for ALL who share her disability.   She shares in her presentation as follows: “I took the ‘dis’ away from disability and made it my ability to make this world a better place for all of those with special needs. I have Down syndrome and want others to know that I have the same hopes, dreams, and feelings as most people have and want to pursue them. Yes, there is a wide range of abilities with those of us with Down syndrome just as there is with the typical population.  However, we all deserve a chance.  I also often say support people with special needs in the way they need it. I certainly wouldn’t be speaking to you today if it wasn’t for the helpful opportunities in my life.  As the motto from our National Down Syndrome Congress says, ‘We Are More Alike than Different’.”

She also shares that many times people will tell her that she is a “super star”.  She is quick to respond that this makes her feel very uncomfortable and awkward.  Her goal is to advocate for every single child born with a disability, Down syndrome or not.  She does not want to be defined as the “cream of the crop” or “high functioning”.  She wants to be recognized as an advocate for all with disabilities.  We focus on helping her use her verbal skills to promote positive awareness for every child or adult with Down syndrome and their individual potential.  Who knows if she may inspire just as she has been inspired by others. I totally agree that it is very important that we be sensitive and tender to each other no matter what the ability of our loved one with Down syndrome and work together to advocate for each one, regardless of potential.  After all, as Dr. Siegfried Pueschel states:  “There is a goodness and warm sense of humanity in our children that must be protected and never betrayed”.

3 Responses

  1. Flor Aug 15, 2013 - Reply

    thank you for sharing this loving post.

  2. Linda Clark Aug 18, 2013 - Reply

    I applaud both authors who have been able to out into words the incredibly complex feelings we have as parents of children who have Down Syndrome. Should parents of “superstars” “hide their light under a bushel”?, or apologize to others for their child’s achievements? What would parents of children who have more difficulties want these parents to do? Even more confusing, when praise is loaded on parents of “superstars”, it totally prevents these parents from voicing their continued concerns and worries about their child. In the second letter the daughter lives independently and has staff but “is tied to mom and dad with a cell phone that is like an umbilical cord”. This mother, in spite of or because of, her daughter’s achievements, faces constant worry of whether the staff shows up, whether they are capable, and whether her daughter is making the right decisions for herself when her social judgment is impaired by her Down Syndrome. In effect, other parents have taken away this mother’s right to express her fears, doubts, and concerns. A person with DS may excel in one area but still have real deficits in others. As with our “typical” children, there is a natural wish to brag about their achievements. There is also a very human response of jealousy and resentment if our typical child did not get SAT scores as high as our neighbor’s child, or got cut from the soccer team. Let us recognize this in ourselves and move on to accept all those with DS, but also recognize and support all parents of those with DS; we all have fears, doubts, and our own internal battles. We all need support.

  3. Prakash Chaudhary Aug 27, 2013 - Reply

    nice post.

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