Musings of a Mom!

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!

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......

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.......!