Grief
What is a Reasonable Amount to Grieve
Grieving often makes other people uncomfortable.
A spoiled family member may want you to stop grieving because you are
not paying the usual amount of attention to him or her. So there you are
trying to cope with grief and guilt at the same time. You have to
examine other people's motives. To grieve is part of the process of
learning to live with a child who has special needs. You need time
to adjust to the shock of not having a perfect child.
If you feel you should stop grieving, then perhaps it
is time. If your spouse, or a parent is insisting that you stop, you
probably are not ready. A consultation with a trauma psychologist, if
you can find one, would be helpful. There are professionals to help, if
you need it.
You should be able to contact the audiologist at
any time in the first weeks after the diagnosis.
Elisabeth Kubler Ross wrote a monumental book called On Death and Dying.
Not a big book, one of the world's most important books in an area where we were frightened to
think or observe because either we or someone we loved was dying. Working with dying patients
in several hospices she found there were predictable feelings when dealing with death. When
you first find out someone is dying you are very sad, then you become angry or bargaining and
eventually you pass to a stage of acceptance and peace.
Finding out your perfect child has a disability is terrible experience, the equivalent of dealing
with the death of the child. Many parents agree that the level of terribleness equals watching the
devastation in New York.
When the child is young their own diagnosis doesn't mean anything to them. The child
probably has always heard things the way a child hears them, and thinks it's normal. Children
generally, because they are egocentric, presume that their world is the whole world in its total
perfection. I don't think anybody has ever studied what the age is, that a child crosses over
to grieving at diagnosis. I am learning how to use the data bases with this program and will have a
questionnaire for parents to fill out soon.
One of the things that I do informally through this website is support parents who are
dealing with diagnosis. Recently I observed on another website another mother who was
obviously very unhappy about hearing problems, much more unhappy than I've ever been, and she said
to me in a forum that she had a Ph.D. in special education, and she realized that she was grieving,
and she gave herself a very limited period of time to do this, expecting to move through to
acceptance, and I would presume joy by the end of the weekend. Unfortunately she represents to
me the stupidities with which we must deal. There isn't a limited period of time to grieve
when you find it that a child has hearing loss or any other disability. What's really scary is
that it probably worked for her, but it typifies the systems' attitude.
Often parents who are really grieving for themselves will say they think a young child (5 to 8
years) is going to be embarrassed by the equipment to help the hearing problems at school.
Perhaps these parents are personifying their own grief into their child, their own embarassment
about the equipment. They are also showing their own true colours about things like hearing
aids before they must learn about them for the child's sake. Some people go through life
without really noticing hearing aids, while other people find any type of prosthetic to be lethally
repellant, like looking at a rattlesnake. The older the child is, the more used they are to not
hearing and coping, and they may fear the hearing aids are going to cramp their style.
When the spouse accuses you of grieving for too long.
There is not an approved schedule for grief. As participant observers in the recent history of
the world, we are all being urged to stop crying and get on with the job. That is fine for some
people, not many. When my Dad died, I was 16. I was with him in the car when he had his heart
attack, and I did mouth-to-mouth recessitation for over 2 hours before an ambulance arrived and
pronounced him dead. For other people, I made tea and drinks, and coped well through the
funeral. One entire year later, I started to cry. I cried for two entire months, set off by comments
like "Pass the butter." Nobody thought much about my grief because I had not cried
at the funeral and had been so functional. None the less, I still needed to cry, to remember, to
touch the painful raw edges of my life with my father who I loved very much. And often during
the crying period, I heard disapproving comments like "She hasn't gotten over her father's
death." with implications of working the situation to my advantage. At the other end of my
life, when I see teenagers who are urged to buck up when they loose a parent, I feel a little extra
sad on their behalf.
Following Fulghrum
I think shiva, the Jewish formal mourning is a great idea, and we need to develop a little shiva for
the now handicapped child and his/her family. Getting used to the idea of having a handicapped child
in the family begins with telling everyone in the family, usually on the telephone. The first
attempts at communicating the problems to your nearest and dearest are often hesitant, from
diagnostic shock, and a complete lack of knowledge in the area. As we tell more people, we get
better at transmitting the message, and we begin to search for the right answer. Often this
broadcasting to the family results in a method being suggested which suddenly seems quite repugnant,
and by a process of elimination begin selecting method. It would really be a great time to have a
family party, or even simply the godparents and parents sit down together. Robert Fulghrum has this
sort of celebration intermixed in the "christening" service with calm support from
friends, neighbours and family.
Experiencing Grief
Finding out a child has a disability can be as emotional and devastating an experience as loosing
a parent when you are 16. Grief is a mind-numbing black hole of despair. it goes so far as to
surround your heart, your arms, and your mind. It is hard to read and remember. It is
hard to produce meals. It is impossible to plan. You may cry a lot, have red eyes and
look terrible. You may look normal, and be absolutely devastated. It's not really possible to
be experiencing grief and to function at the same time.
It is equally as devastating for all the members of the child's family. Siblings need
psychological support and extra parental support because they both grieve for the affected sibling,
and momentarily feel personally thankful that it was not themselves, and then guilt steps in. As the
disabled child grows and takes a disproportionate part of the family budget for the necessary things
like ear molds, hearing aids, speech lessons, and takes attention of the parent(s) at times when the
other kids need parents too.
Of course I thought I was doing a fine job with my kids being as impartial as I could. I expected
them to help with the language development of their brother, and they did too, for hours and hours.
They were also prepared to fight to protect their brother at school, and have a healthy
relationship, but after the fact I hear "Well Mom, you spoil(ed) Reid all the time."
When we found out there Reid had a hearing loss when he was 2, our wonderful audiologist was
prepared with tissues and sympathy. The diagnosis for us was not sad because we had already
fought a two-year battle to get to that point. Our response was "What can we do to help?".
I think that because our nitty-gritty response in this sort of situation is "what can we do
to help?", I have terrible difficulty
dealing with the school system who has never once said "What can we do to help?" As you
may not know our son has many challenges in life and we have been through diagnostic diagnoses
five times. the only problems that the school system even tries to help with is the hearing loss and
that was identified before he went to school. All diagnosis from other doctors have been
ignored.
"How Can I Help?" Magic words
Recently I got a letter from the psychometrist at the children's center pointing out ways that
her organization could help at this point in time. It is truly extraordinary because the
school system has never done this. Not one teacher in a chat, or report has ever identified a
learning disability. They've given the symptoms: "he's lazy, easily distracted, not
focused" but they have not identified a learning disability. When a learning disability
was diagnosed by a psychiatrist and a neurologist and was ignored and trivialized. My son has
dysgraphia at a profound level, meaning he can't write so he has a oral lap-top which took four
years of fighting to get, and there was no knowledgeable support to get it going at school. Going
into high school Reid had 22 pages of medical documentation in his files, which was ignored. Now he
has 24 pages. Dealing with the hearing problems is the simplest and in fact has gotten little
better because the school system realizes that he is deafer then a child with a mild hearing loss,
as a total. If you are at the left side of his body he has a mild/moderate hearing loss if
you're on right side of his body, he is deaf. He's definitely not deaf enough for the supports
put in place by Bill C-72, which mandates special schooling for deaf or deaf blind or blind
children.
Added Stresses in Lack of Money to buy Help for the child who you love and would do anything
for.
One thing which greatly increases this emotional spiral is having nothing to try, especially if
you cannot afford the equipment. Financial frustration. Recently on Boston Public some parents of a
child were vilfied for twisting the system to force the school to pay for a private school. It
is very difficult to see something which is working for another child with the same problem which
you cannot begin to afford.
Anger
Anger had been there at a profound level since the first misdiagnosis when he was a baby,
especially because I was told by the doctors at Toronto Sick Kids Hospital that I was a hysterical
parent with a normal child. Or the nurses who told me stop being so pushy, to look around the
hospital and be grateful my child was only deaf compared to the poor children who have cancer. Anger
was evident when I came back from the second set of hearing tests to a support group of other
parents and Dr. Ken Lutterman. I just happened to be doing this seminar at E.C.Drury School for the
Deaf, and audiology appointments conflicted, so I did both, and it could not have been better
because I had for support, right then and there, a terrific group of concerned and knowledgeable
parents, and Dr. Lutterman who knows a lot about grieving parents.
Mostly you cry by yourself
The rest of the world watches you when you grieve but unless they have walked in your shoes, they
do not understand. My sister cried for the child and for me, but she thought he had the loudest cry
she had ever heard from a baby, so deafness was a good explanation to her observation. My brother's
wife's elderly uncle who was a dentist cried at length when he heard that Reid was hearing-impaired,
because he was hearing-impaired too, at the end of his life, and having a rough time.
Nancy Miller's wonderful and thoughtful book Nobody's Perfect provides a parent's way to
cope with disability in a child but her acceptance involves living with the status quo which I have
never done, and do not consider the answer for me. If you have a child with special needs, you can
accept society's place for that child, and go on with your life. It is a comforting book to read,
and provides an alternative place to parent with your own needs first, and expecting the system to
work.
It has never been my way to accept the status quo, and let people determine their jobs. The
goals of the child are lessened when the system takes over, based on statistical outcomes from other
children with similar complications.
Left to the system, my son would never have learned to talk. I had to find information to get
going with hearing aids on a child who preferred to eat the aids than hear better. This knowledge
was wonderfully passed along by the pre-school itinerant teacher of the deaf. Eventually I was lucky
enough to find a mentor who is Dr. Daniel Ling, who provided a means to teach the child to
talk, instead of telling me he would learn to talk if I just waited.
So the anger and dismay of diagnosis was used positively to provide energy to do the best for the
child, including hours of my time, and hours of the child's time.
The Family and Friends want to help
The intense emotions are not just the parents' problem. The whole family, siblings, your
siblings, grandparents, godparents, anyone who has a interest in the child will be devastated.
Reid's godmother sent money for molds in response to my information, and she has been fantastic at
looking for special books which had only one picture per page, and producing an endless, generous
bounty of expensive toys, books which might help. Reid's godfather has produced a generous harvest
of specially fashionable clothing over the years. ( I recommend godparents who are not married
to each other.) Reid's grandfather asked how we were going to pay for the first hearing aids, which
the government paid for in the end.
Gate-Keeping of Information is a bad Role.
Your spouse, the other half of you, the parenting team. Your spouse can be the biggest help or
the biggest hindrance. Both parents must go to the hearing tests. Book time off work. Otherwise the
person who goes to the appointment ends up as the gate-keeper for all the bad news, and has this
role when a person is least likely to be able to talk and explain about the condition. The messenger
may get blamed for the message. And when you are stuck in a gate-keeping role, it is a common
tendency to not tell all the information, to keep your own status as gate-keeper.
The audiologist should be prepared to let you have a phone number in case you start to think
after you leave the office, a perfectly normal situation. Most people walking out after the
first diagnosis are in shock, with an order for hearing aids and a FM in their hands which they hope
will do the trick, and which seem awfully expensive. It is not unusual to cry hard for an entire
weekend.
We have another deaf child in the very extended family. I happened to be at the cottage when the
news flashed through the family. The first thing I heard was "Oh! Sally is really deaf,
not like your child." Fortunately I am a good person, and managed to not hit her as I gathered
up Reid, and set off for the family of the new deaf child. They were crying as a family. They had as
a friend for support an auditory/verbal therapist from England who did not think deafness was quite
all that bad, but she made tea and provided information. I did not tell them Reid had a hearing aid
in his ear, I let them watch him for a while, and listen to him, and then we showed them the hearing
aid. The a/v friend was absolutely bowled over that Reid had a hearing loss and spoke so well. The
family took great comfort even in knowing that a child ten years older than their child was coping
so well with deafness.
You should have information about the five methods of dealing with deafness.
