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Sunday, July 17, 2011

It's been a very long time.......! Dealing with child disability.

Not only has it been a very long time, but it's been a very emotional time period.  Where to begin?  Maybe at the beginning of my journey as a parent.

I am the mother of two very special daughters - special in so many ways!  And they are exceptional human beings!  My journey as mother has been fraught with many ups and downs.  It's been an enlightening learning experience since 1971, when our older daughter (Andrea) was diagnosed as hearing-impaired at age 3.  Imagine 1971!  There was no Internet, no information, no ready source of resources to help us even begin to deal with child disability.  What do new parents know?  Virtually nothing, for there is no prep course for parenthood.

Our second daughter (Roberta) was born that same year, 4 months before Andrea's diagnosis.  Immediate hearing testing was inconclusive; it wasn't until she was 13 months old that her hearing-impairment was deemed conclusive.  We were now the parents of two hearing-impaired children, four hearing aids, and little else.  We knew no one who shared this experience.  It was frightening, isolating, depressing.  With the help of some wonderful friends and a few good professionals, I began to relate the experience to Kubler-Ross' On Death and Dying, viewing the process as one of grieving.


The stages Kubler-Ross identified are:
  • Denial (this isn't happening to me!)
  • Anger (why is this happening to me?)
  • Bargaining (I promise I'll be a better person if...)
  • Depression (I don't care anymore)
  • Acceptance (I'm ready for whatever comes)

It wasn't until I felt relatively more educated on the subject of hearing loss - which was no mean feat without today's Internet - that I understood the loss (grief).  In addition to the stages identified above, I grieved for the loss of expectations.  New parents have high, and sometimes unrealistic, expectations for their children.  I agonized: 

  • will they talk?  
  • do they and we need to learn sign language?  
  • will they be reasonably well-educated?
  • will they be able to support themselves? 
  • will they find happiness in this life?  will I ever feel happy again?
  • how will they cope socially, emotionally, physically?
There were so many unanswered questions.  Life was in turmoil.  But I knew I had to do everything in my power to help them succeed in having a normal life.  But what was normal anyway?  Was it a blessing that they both had the same condition?  Or was it just one more twist of fate that one couldn't help the other in hearing, speaking, playing, communicating, socializing?  


Those years are rather a blur.  They went to public schools throughout their childhood - with limited special services from a gifted teacher of the deaf.  They talked!  They were mainstreamed!  Mostly they managed in their classrooms with wonderful teachers who learned right along with me and from me.  I became an advocate for them and their educational process.  In high school, they were pretty much independent of me and of school-provided resources.


Both went to college; one has an advanced degree and works as a school psychologist,  The other works for a medical research company.  One is married and has three lovely children; the other is single, dealing with changes on her own.


In 1990, everything changed again.  You'll have to read the next installment to learn what came next!


To be continued.......!

2 comments:

Lindsey said...

It was so nice to meet you at the Usher Family conference. This was a beautifully written account of your early experiences with hearing loss (before Usher was identified). You have so much to share with others and I look forward to reading more! - Lindsey Whyte

Louise Giordano said...

Thank you, Lindsey! It was great to meet you too! Just spoke to Roberta who is at M.I.T. today to make another presentation! i KNOW that good things are going to come of this process.

Stay tuned for another blog I'm starting - separate from this Scarf It Up! one - dedicated to Usher Syndrome. Here is the URL, but so far there is no content: http://in-our-house.blogspot.com/ Please keep watching and sharing.

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