I've always tried to maintain a positive attitude towards most everything in life. It is not because I am a person of faith or that my family of origin was positive in nature, or that I married a positive person. These were NOT the case! I guess, despite all that, I have my own sense of looking at life to uncover the best possible means to be happy or improve my own situation or that of my loved ones. Considering the environment in which I've lived 60+ years, I manage to be positive most of the time. And so it is in dealing with disability and family health issues that have been part of my adult life for 40+ years.
I do get depressed from time to time! And I do take medication for periods of time when I need it. And I do talk with a therapist on occasion - also when I know I need it. In other words, I recognize the signs and symptoms, and I take care of myself. I have to....because I am needed. I can't help those in the family who need it if I am not whole and sane. (Tennis and my fiber art help too!)
Somehow, and this seems rather ironic, I've gained strength from the many setbacks our family has encountered. For example.....the knowledge that one daughter would fail her DMV vision test and have to give up her driver's license - although we knew this was coming - was initially devastating. A life-altering experience that has been characterized by relief, rather than angst. I worried more about this lack of driving permission than her driving itself. And she has dealt with it beautifully - hiring drivers for work, appointments, and errands, and prevailing upon friends and neighbors for other needs and entertainment. I should have been worried about how safe she was (and others!), and so now I realize why she's experiencing this as a HUGE relief, rather than a HUGE burden. And she's handled it with aplomb! So proud! I pray that our other daughter will accept her fate when it happens with similar equanimity.
Each person handles life's experiences differently. That's a function of personality and one's personal philosophy. How do I handle the various tribulations of my life? Not always with aplomb! Not always with positivity! Not without falling sometimes! And not without failing sometimes. But I realize that I have a process that seems to work. If shared, this process can perhaps help others in dealing with their own trials. But that's where personality comes into play, I think.
Here's what I've done - even before I realized it was indeed MY process!
My initial reaction to adversity is not always good or positive or effective. In an emergency (such as the many cardiac issues encountered with my DH), I am usually OK through the crisis and fall apart after the critical period is over. With disability issues for my children, I am initially devastated, shocked, frightened, and immobilized. I ALLOW myself 24 hours (but generally no more) of self-pity. Sometimes it's hard to "snap out of it" (as some have advised!) If it persists for more than a few days, then I know it's time to resort to other means - medication first and then arrange to meet with my wonderful, compassionate but direct LISW. Generally by the time I get to the appointment several days later, I have snapped out of it, and embark on a plan to DO and COPE rather than STEW and MOPE! This has proven effective in so many instances! But this is MY personal plan - it will not work for everyone.
The most important thing is to find the resources and help to develop strategies that WORK for you! For some, this might be faith in God, prayer, support groups, involvement in disability organizations, writing, helping others, presenting, educating, or any number of other engagements that WORK! Helping others always works wonders, so if you're reading this and having difficulty dealing with Usher Syndrome, low vision, hearing loss, any other form of disability, disenfranchisement, disaster, or distress, consider these possibilities and SHARE them with others.
This blog is proving therapeutic for me but with the hope that it will perhaps help others too. Comments welcome!
in our hoUSe.....!
Showing posts with label usher syndrome. Show all posts
Showing posts with label usher syndrome. Show all posts
Monday, September 5, 2011
Sunday, August 7, 2011
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!
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!
Tuesday, August 2, 2011
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.......!
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.......!
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.....!
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.....!
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!
So....in 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.
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!
So....in 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.......!
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