What can you see?

I've never asked my daughters this question before!  Since one of them is visiting us this week, I decided to now ask this question and one other.  We were sitting in our office area - she on the floor; DH and I in our respective chairs at our computers.  I turned to look directly at her and said: "Look straight at my nose and tell me what you see."  My elbows were resting on the arms of my chair, and I was about 5' away from her.  She could see my face and my extended elbows, the tops of my knees, and she was aware of the light from the window behind me and the stained glass disk hanging in the window.  She could NOT see my legs below the knees, the floor, the top of my computer cabinet, or anything on the wall above it.

Retinitis Pigmentosa
ONE of the aspects of Usher Syndrome

The limits of her field of vision shocked me.  I'm not really sure why because we knew that she had recently had to give up her driver's license because she could not pass the visual field test.  She "never saw the moving light at all!"  Normal peripheral vision is close to 180 degrees.  Hers is about 30, so we're told.

This prompted my next question - one I have been reluctant to ask, but she willingly answered.  "Are you relieved to no longer be driving?"  I had thought her need to give up driving would be a crisis, a critical life-altering experience to which she would VERY slowly adjust, find her drivers as necessary, and go into some type of immediate - and understandable - depression.  Instead, she has been more pro-active than usual, found people willing to provide services in her home (the hairdresser, the dog groomer, the speech pathologist), found drivers for work, back-up drivers when needed, friends and neighbors to drive her to shop and to attend to daily needs, and SHE IS VASTLY RELIEVED!!!

I had no idea how stressful driving had become for her.  She had for several years given up driving at night and in rain, but honestly, she and I had driven several times in recent years between NC and New England, sharing the driving almost equally.  She never drove in the NY - DC stretch, but who likes that stretch of 95 anyway?  I NEVER felt uncomfortable with her driving or concerned for her or my safety.

Well, all that's behind her now, and she has handled the changes with aplomb.  It has not been a crisis; it has been a gift.  By her own admission, she manages things in her life much better on a deadline and so her driving needs have been addressed and arranged - all before her vacation in NC!  I am immensely proud!

A "Funny" thing happened at the dentist......

Well, you wouldn't think anything "funny" would happen at the dentist, but indeed something did that offers possible hope for low vision sufferers.  I had broken a filling on a Friday night - great timing!  Fortunately it didn't bother me, but on Monday I called and got an almost immediate appointment.  Wasn't even dressed when I got the call-back.

So I'm sitting in the waiting room reading Our State magazine, a beautiful publication that I vow to subscribe to.  There is an advertisement from an eye specialist/researcher/optometrist in WILMINGTON who has developed treatments for various eye diseases and conditions, primarily macular degeneration.  I am intrigued, but also skeptical.  What legitimate medical person actually advertises?  So I ask the receptionist if she could make me a copy.  When she sees what it is, she says, "Oh, he's my doctor!  And he's wonderful!"  And he's the doctor of the dentist too as well as a number of other staff members.  He had his practice near the dentist's for many years until moving to Wilmington.

I can't wait to get home to check him out on the Internet.  And here is what I found: Dr. Edward Paul has in fact "successfully treated individuals with Macular Degeneration (AMD), Diabetic Retinopathy, Albinism, Stargardt's Disease, Optic Nerve Disorders, Nystagmus, Myopic Degneration, Macular Holes, Retinitis Pigmentosa, PXE, Strokes, and many other eye conditions that cause Low Vision."  And he offers free phone consultations.

I called!  Although he seems to specialize in macular degeneration, he does indeed work with retinitis pigmentosa patients.  They were able to arrange an appointment while Roberta is visiting us next week!  While I am somewhat cynical by nature and hold out no expectations from this consultation, I am very interested to know how he works, what he has to offer, how he's measures his success, and if there is some hope to restore enough vision to enable Roberta to recover and retain her license for a while longer.  We shall see (no pun intended!), and I will report back afterwards.

Oh....and my broken filling was easily repaired - no drilling, no root canal, 20 minutes, and done!  An interesting morning!

VisionWalk!

Both daughters have gotten themselves fully engaged right now in the fight against blindness.  Both are participating in the Foundation Fighting Blindness' VisionWalks, one in Greensboro on October 1 and one in Boston on October 29.  They have set up their teams and are looking for team members and supporters, those who'd like to walk (and get their own sponsors) and those who can't be there to walk with them but who would like to make a donation on their behalf.

Andrea's page is here!  Roberta's is here!  You might recognize these photos from their personal pages.

If you are so inclined and would like to donate to a cause that funds research for all degenerative vision disorders, you will find links on their respective pages.  At this time, there is no treatment or cure for Usher Syndrome, and research funding is needed.  Your support, in prayers, thoughts, and deeds, will all be appreciated by our family and so many others who suffer from Usher Syndrome and other deaf/blind issues.

Thank you so much!

The SECOND Diagnosis!

Roberta was four months old when we learned that Andrea was hearing impaired.  It was indeed a difficult time.  And I felt immensely alone!  (Absentee husband due to his career change goals and subsequent grad program required long days of travel to Boston and back; when he WAS home, he was holed up in the basement studying!)  We needed to learn quickly how best to promote communication skills in Andrea, and I still had to care for an infant.

And I was desperate to know that our baby had normal hearing!  Testing began almost immediately - at my insistence.  So at 4, 7, and 11 months, her hearing tests were "inconclusive!"  Small comfort there!  The axe fell at 13 months on a day I will never forget (but I do forget the date).  What I remember most was how I reacted once in the car with the two girls.  I completely broke down and sweet Andrea said to me, "Mommy, what's wrong?"  The only way I could make a 4 year old understand was to reply, "Roberta needs to wear hearing aids too!" to which Andrea said, "Oh, goody, now she'll be like me!"  How sweet!  But for a mom, this was devastating news.

So once again, thanks to the Willie Ross School for the Deaf in Longmeadow, MA, we received training in assisting our children with language acquisition, speech and articulation through play, and other activities to encourage and enhance communication.  Willie Ross was an oral communication school for the deaf, so we were naturally encouraged to teach our children the tools for oral language, rather than signing.  What did we know?  N O T H I N G !!!!

But as preciously stated, this decision turned out to be the best one for our girls - they will tell you so today.  I'm not sure how that will play out in the future, if/when they are no longer able to see well enough to read lips, but it was correct then and still is.

The early years were tough!  When Andrea was five and Roberta 2.5, we moved from MA to RI - where my husband finally found a job in his new field of hospital administration.  Three+ years of little income (I substitute taught on occasion) were fraught with tension of newly discovered child disability, absentee husband, career change, and now a move to a state where we had no family, no friends, no ties at all.

But the move to Cranston, RI was a blessing!  We landed in a cute little neighborhood with lots of kids and friendly neighbors who became fast friends over the years.  Children of all ages played together on the street, in our homes, and the families socialized frequently.  It was safe and fun for all of us!  Although there was a neighborhood school, where Andrea attended kindergarten for a few months, services for the hearing impaired were provided at another local school, so that was arranged for her first grade.  Roberta went to the local YMCA for preschool.  Mrs. Jean Wilson was the invaluable teacher of the deaf through most of the girls' elementary school years - in a pull-out program - for speech and language and as liaison between us and the teachers.  It was wonderful!  And she was the mom-substitute for me.  I could call her at any time with questions, concerns, etc.  And Mrs. Hoffman was Roberta's pre-school teacher for three years.  She was another godsend!

Mrs. Wilson passed away when Roberta was still in her care in elementary school - a sudden and very untimely death.  We all mourned her passing forever - since the replacement left something to be desired, and neither the girls nor I liked her very much.  Thanks to Jean Wilson, both girls were quite independent and by that time needed less assistance and instruction.  Besides....both girls at this point HATED both the replacement and the very obvious attention and impression being taken out of class made on their classmates.  So while IEPs were always in place for both of them through their public schooling, they availed themselves less and less, and that worked!

The constant interaction with neighborhood kids, who accepted them wholly and helped them in every way, was a bonus.  I am forever grateful to Mary Joan and Earl, Linda and Joe, and Marcia and Joe for their tireless support of our family.  And the move to RI brought me to a mother's group at the RI School for the Deaf that changed my life, even though the girls were never schooled there.


To be continued.......!

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.....!

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 time.....one 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......

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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