in our hoUSe.....!

in our hoUSe.....!

Wednesday, July 27, 2011

In the News.....!

In today's local Wilmington NC paper, Star News, there is an interesting article that speaks to the long-standing issue of oral communication versus American Sign Language (ASL) for the deaf and hearing-impaired.  I couldn't find a link to the story in our paper, but here is the link from another region's newspaper.

As parents of hearing impaired children who are now grown and in middle age (WOW! That makes me OLD!!!), we had to make a decision many years ago as to whether or not we wanted them to sign or learn as much oral language as possible.  We decided they would live in the hearing world.  For us, it never was a huge decision, but I realize now how radically different their lives would be - and ours as well - had we made the decision to education them in a school for the deaf.  We knew next to nothing about deafness and hearing loss; we had no idea of the world of differences between deaf culture and hearing or of the cultural clashes that exist.  It was years later, when I was in a Masters program in Speech Pathology (never finished!) while researching and writing extensively on the psychology of deafness, that I gained insight into this intense rift in the hearing-impaired community.  And that research convinced me that we had indeed made the right decision.

It obviously turned out to be a correct decision for OUR children - who were not deaf at birth, but rather mild to moderately hearing-impaired at the time of their diagnoses.  We later learned of the progressive nature of their hearing loss, and then much later of the syndromic effect of Usher.  I believe that some children need the services of a school for the deaf, need to learn to sign and use multi-modal means to communicate - but not just with the deaf world.  I believe that all deaf and hearing-impaired persons must learn to exist in society, be fulfilled by their educations, careers, family life, and social interactions.  My children today thank us and would tell you that the decision we made so many years ago has worked for them.

That is not to say that our decision is the right one for everyone.  It is not my intention to fuel the fire here.  I would be intensely opposed to the abolishment of schools for the deaf.  Mainstream education is not for all handicapped individuals; there is much to be gained from deaf education.  But I do believe that such schools, where ASL is taught exclusively - to the exception of oral communication training - do little to bring deaf individuals into the society at large.

Do I wish my children had learned to sign in addition to their oral skills?  Now I do!  Because now I know that they might need it as they struggle more and more with their vision AND hearing.  Roberta studied it in college (actually met her former professor at the Usher Syndrome Family Conference earlier this month!), but she has never used it either personally or professionally.  As a former foreign language teacher, I know that disuse leads to no use!  Can they learn it now?  Of course, if motivated to do so.  We shall see.....!

Monday, July 25, 2011

The FIRST Diagnosis of Hearing Impairment! The Early Years!

Please excuse the ramblings here.  While I've often thought of writing about life with two hearing-impaired children, I hadn't quite planned to do it at this point in my life.  But I guess it's never knows when it might be too late.  Those early days are a bit of a blur - also it was a LONG time ago!

What do new mothers know around child-rearing?  Not a whole lot!  There is no manual; there is no prep course.  My mother did not live nearby; my MIL did but was not a huge part of the equation.  I know now that MILS of young mothers often feel uncomfortable "interfering" with their son's wives.  Nonetheless, it was my MIL who first suspected that Andrea was not hearing properly - although she was speaking - just not articulating well and her language at three was not building as rapidly as expected.  My husband had been a delayed talker, so no one had seemed terribly concerned, and my pediatrician poo-pooed the concern.  Mothers seem to have a sense about problems in their children - regardless.  But my MIL put the bug in my ear (pun intended), and so with little (naive) trepidation, off we went to the audiologist!

Crushing news!  MIL was right!  Andrea did indeed have moderate sensorineural bilateral hearing loss.  OMG!!!  What the heck did THAT mean?  I was in shock, confused, frightened, devastated, and ALONE!  Any new mother who receives a diagnosis of child disability of any sort MUST feel the same.  I was not at all prepared for this, didn't want it, and didn't have a clue what to do!  And I am a DO-ER!!!!

Remember, this was 1971 - no Internet, no easy access to information, no immediate source of help, few resources to pursue.  Thanks to the Willie Ross School for the Deaf in Longmeadow, MA, I began the journey.  (I actually thought the school could not possibly still be in existence, but just Googled and found it!)  They were the only source of info, providing written materials, parent advising, in-home speech and language assistance for parents/child, pre-school classes, and a connection to others facing the same challenges.  It was newly established, and at the time they focused on strictly oral communication.  With their guidance, we determined that Andrea would attend their own integrated pre-school as well as another local program where she was the only hearing-impaired child.

Whether by personality or disability, however, she was always socially reserved, shy, and adjusted slowly to new situations.  She began to make huge strides in communication and social skills, and as a result of these experiences, we decided that she would continue in public school, a decision made early on and one that pre-determined the course of her and her sister's education.  They both lived in the hearing world, never signed, and proceeded through public schools and college with few disability resources.

Since Roberta was already born at the time of Andrea's diagnosis, our focus became split: teaching ourselves how to best prepare Andrea for life and finding out if Roberta shared what was apparently a hereditary trait.  But we COULDN'T have TWO with the same disability!

That will be the focus of my next post.  But I recall that at the time of this initial diagnosis, my husband was going to school full-time in Boston for another degree, changing careers, and largely unavailable to me and the issues at hand.  He had his own struggles with commuting to Boston, attending classes, studying, writing papers, etc.  He had little time to provide the comfort, share my distress, learn along with me, and be the support that I really needed.  Many marriages would not have survived!  I'm proud to say that in September, we will celebrate our 45th anniversary - TOGETHER!!!

To be continued......

Friday, July 22, 2011

Comments may now be easily published!

Sorry to those who have tried to post comments on our blog.  I needed to adjust the settings - now DONE!!!  If you wish to add a comment to any of the previous posts - or this one - feel free to do so.  All comments are welcome!

Louise Giordano

Did you know that the new Mrs. America has RP?

April Lufriu - Mrs. America 2011
This could be the boost we need to get the word out!  Mrs. America 2011, April Lufriu from Tampa Bay, FL, has early signs of retinitis pigmentosa (RP), as do two of her children.  This article, Relishing the Crown, in the Spring 2011 edition of In Focus from the Foundation Fighting Blindness, is an interview with April about her win and about her advocacy work for the visually impaired.  She is the president of the Foundation Fighting Blindness' Tampa Bay Chapter.

Retinitis pigmentosa is just one half of the Usher Synrome equation.  But it is the vision part - or the loss of vision, actually - that seems to be the far greater disability to manage for Usher patients.  My daughters always claim to have a handle on their hearing loss and cope very well in their personal and professional lives.  But the vision changes and the challenges that imposes is something else again.

Any awareness, funding, and research on RP will help with the fight against Usher Syndrome, so I am thrilled with this news of April's winning platform.  Congratulations to April and her family!


Thursday, July 21, 2011

Memories or Memoirs?

It's often been suggested that I write the story of my journey with two children with Usher Syndrome.  I suppose I could have started a long time ago, but at the time we learned that Roberta had it - at age 18 - we were all rather in shock and denial.  We had spent all those years learning to deal with hearing loss in both girls, and those efforts were obviously successful, but this was a whole new set of challenges for all of us.

I have a way of handling crisis - very differently from my husband.  Through the very many years of our marriage, we have always accused each other of not understanding the other's way.  He accuses me of dealing with it all on an emotional level; I believe he only approaches the issues logically and rationally and doesn't consider the emotional/psychological/social aspects.  This has caused considerable discord, but we have weathered many crises together.  After almost 45 years of marriage, we are still together!

And together, whether planned or not, we have caused the disability issues in our children, and so it is our duty to help them become the best humans beings that they can be.  I believe we have succeeded! 1989, Roberta was diagnosed with Usher Syndrome, Type 2.  At that time, there was little known and little research into its causes, nor had any genes yet been identified.  She was a Freshman in college at a prestigious MA university, had always been an excellent student, and wanted absolutely NOTHING to do with this "thing!"  Who could blame her?  She was in her prime, away from home, and independent for the first time in her life, and she was thriving!  It was a blow to all of us.

The doctor/researcher at MASS Eye & Ear Infirmary was less than kind and helpful.  He WAS, however, interesting in getting her into one of his research studies (which I erroneously called a "project," for which he reamed me out), and considering my horror over the diagnosis as well as his admonishment, I might have preferred a little sympathy and education.  I recovered from him and from the news, but I must confess that it was not a happy time in my life.  I went through my new grieving process - virtually alone - with little support from family, friends, service providers, medical personnel.  And once again, I gained traction on my own emotions by trying to learn as much as I could as quickly as I could.

The same doctor  insisted that our other daughter, also hearing impaired, MUST have this same syndrome.  She was not having any of that!  She lived hundreds of miles away.  And she actually manifested no symptoms until fairly recently.  But now her progression seems to be more precipitous.  To this day, she has not confirmedly been diagnosed with Usher, due to the fact that she is living in NC where there seem to  be no ophthalmologists who specialize in Retinitis Pigmentosa.  Anyone reading this who knows of a retinal specialist familiar with this condition, please leave a comment on this blog.

OK....that's enough for today.  If you are inclined to comment here or on FB, I'd be happy to know if you'd like more info about the early years with two hearing impaired youngsters.  As my daughters are now grown (I'm a grandmother of THREE beautiful boys and girl who are not afflicted but carry the recessive trait), I am more focused on the present.  But I do feel I have much to share with young parents who may be recently dealing with a new and painful diagnosis of hearing loss or deafness or other child disability.  I welcome all comments.

Wednesday, July 20, 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.......!