Monday, April 2, 2012

Hope vs Reality... and Perspective

Yesterday 2 people commented on how smart little B seems and it made me sad. I want to be hopeful but I also want to be realistic. I am afraid of being disappointed maybe? I want to love and accept her no matter what but sometimes my mind wanders to a place where she is keeping up with her peers . How do you reconcile this?

Great question!  I think this is something a lot of parents struggle with.

On the one hand, it's important to know that as a population people with DS have come so far due to changes in acceptance, medical progress, law changes.  We have so many more things available to us, including an easier exchange of info, the learning techniques developed through research at DSE.  People with DS ARE accomplishing things never imagined before.

I see these things, know they are beneficial. Sometimes I worry though - are new parents so fucused on these things that the future of a highly "successful" person with DS is the only future they can imagine?  Are they clinging to that - in a healthy way, or sometimes in an unhealthy way?

I see phrases like "except don't accept" and "more alike than different" sometimes used as things that create a type of tunnel vision - THIS is the path, THIS is the future, if I just concentrate hard enough, give her enough therapies, explore every option, work with her enough, don't accept "that type" of behavior, push, push, push.  The negative flip-side to that - sometimes - is the implication that if a child is not progressing to a certain ideal, it is the "fault" of parents.  They did not "expect" enough and shame on them:  I've seen that come out on this board sometimes, and other places.  And I've seen some parents of children or adults who are not "performing" to a certain level, or "behaving" a certain way, or even experiencing more than the typical medical conditions - stung by comments, with a result that they sometimes feel they are not supposed to share.

The "reality" is that people with DS are a diverse collection of individuals.  A lot goes into that diversity:
- knowledge of parents
- efforts of parents
- opportunities available in the community (school, etc.)
- medical conditions & availability of treatment
- unique genetics of the family
- those genes of that individual - both the variation in the extra 21st chromosome material, and the genes aliong the rest of the chromosomes (There was some great congressional testimony on this but I can't put my hands on it.)
- the presence/ absence of associated with DS but not necessarily common behavioral issues (elopement, OCD, sensory issues, etc.)
- the development & use of safe, proven treatments, some currently in trials, some being developed
- and likely a host of other factors (nature, nurture) that make up who we are.

I have 8 brothers and sisters, all the same parents, same home, same upbringing.  My sister and I are night & day - and the rest of them fall somewhere in between.

People with DS are influenced by that extra 21st chromosome, but are MORE than the 21st chromosome which impacts many systems - they have a whole bunch of other genetic material influencing who they are, and certain of those genes interact with that extra genetic material.
Give your child love, learn what you can, and do what you can, understanding that you still must live your life and you have other responsibilities.  Give your child the proper tools, but try to embrace who she is.  Your child will make you proud regardless of "performance." A child who does not meet certain preset "expectations" is NOT a consolation prize - she is a unique individual with a place at your table, in your home, at your school, in the community, in this world.  She will be your superstar - whether than is seen by some objective measurement or not.

BabyCenter's group on Down syndrome is for sharing our children's triumphs (OK, shamelessly brag), challenges (OK, throw a pity party), ask questions, share advice, experiences and information with each other.

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