parent dealing with diaability

I’m sure other parents can answer this better than I, since I’m not one, but I”ve always been attached to the “serenity prayer” — the one about having the serenity to accept the things you cannot change (*whatever* caused them… one of the things you can’t change is the past, period — but often it’s the people who worry *most* about such things who are the least to blame), the courage to change the things you can (an eternal part of parenting and life), and of course the wisdom to tell the difference.

Sandy,
I do not know you or your child, but I am a mother of two children involved in special education. There are times that I would like to speak with the teachers, but I just cannot because I know I will be too emotional. Even though I realize those are very normal feelings I am still embarrassed to wear my emotions on my sleeves. I do not blame myself, so I do not know how to get over that feeling. Is this brought on by you, or are others saying things to make you feel that way? I think the best way to look at it is not as a disability, but just that your child requires specialized instruction bcs he/she learns differently. I discuss the issue with other parents since I am not going to hide, but do not discuss it with relatives who I rarely see anyway. You would be suprised as to how many children have learning differences. 3-7% I am told have ADD/ADHD. That is a lot of children, so you are not alone. The most important thing is that your child knows that you are proud of him or her. I hope the shame is not being noted by your child.

I have a child with asthma. And I have a child with dyslexia.
To me, they are one and the same. A glitch in normality.
And normal, I think, is a fleeting concept. Everyone has
challenges to overcome.

And not everybody has the right to know everything about
us. I let certain people know my son is dyslexic as they need
to know that they shouldn’t ask him to read out loud and to make
sure I know what he needs to read (a scout manual for instance).

Others don’t need to know. He has relatives who don’t know he
is dyslexic.

I think he needs to be comfortable with the fact though. I don’t
know where his abilities in reading and writing will end up but
he needs not to be ashamed. It is not an IQ issue it is a neurological
issue. He’s smart and he’s just wired up alittle differently.

I’m not sure what your child’s disability is but the most important
thing for a disabled child is to have a safe harbor at home.

Anne

I know where you are coming from, when my son was dxed adhd, I thought of all the possible things things that could have caused him to have this difference. I know I didn’t do anything before he was born, but I allowed myself to go through a difficult labor, trial forceps, and 18 hrs later, a c-section, I had been told all my life I would have, in order to give birth. My son looked beat up when he was born. So I cried over ‘could that have been it?’. The answer is maybe but not likely. Both my son’s have adhd, my husband and his brother are adhd as well as myself. So… if it is genetic, well, we got whammied for sure. It will take a while, but unless you did something quantifiable that would obviously harm your child, take heart in the fact that we are all made different and our differences come out differently. School may be hard, but there are many more years to live after school, and many,many folks with learning differences get out of dreary school and make wonders of themselves as adults. We as parents are here for our kids, to help them, hold them and let go of them when it is time. You will be fine, let go of your guilt and/or shame and do your best. That’s what we ask of our kids and that is what we must ask of ourselves too. Best wishes.

My son was diagnosed as having a speech disability at age 3. I remember being upset but feeling he would be able to overcome it. When he started K, he was labeled as speech impaired and was a special education student. I remember being upset but also thinking he could overcome it. His speech improved dramatically in K but other problems showed up. So, I guess, we have dealt with his disabilities in small chunks. And in grade school, the diagnoses came as a relief—we knew there were problems, now we could understand and try to remediate them.

He is now 8 and in third grade. He has been in special education now since K and pullout since first grade. How do we deal with it? Well, I guess I would say that the experience has forced me to grow and expand my ideas of success. I come from a family where all my immediate family, including me, has a masters or Phd. My husband’s side is no better with a law degree, MD, as well as masters and Phds. I was the nerd in high school who looked down on the “dumb jocks.” Now I have a son who struggles mightily in school and I look for other avenues where he can be successful. We talk about all sorts of things that people can do for a living and I am careful to make sure he understands that not everyone goes to college. I hope he is able to but I don’t want him to feel like a failure, which may be a great challenge given the education orientation of both sides of our family.

I have found this bulletin board to be a wonderful source of information and support. It is easy to feel isolated. It seems that most of my friends have kids in gifted programs. But here you find other parents struggling with the same sorts of issues and you don’t feel so alone.

I don’t feel like it is our fault even though we have been told repeatedly that his undiagnosed low grade ear infections (he had tubes put in at age 4) combined with inherited auditory weakensses are probably the major cause of his difficulties. We would never have done anything delib. to cause our son harm and we got routine regular medical care with good physcians. His ear infections were fluctuating and somehow they got missed.

I also am not embarrassed by his special education status and am quite open with people about it. My son appears to be very normal (he has LD) and I feel in some ways I am helping people change their mind about what a disability looks like. My openness has also allowed me to help a number of people whose kids were struggling. It has also helped him with sports—when I explain to the coach that sometimes he has to be shown things because he doesn’t follow verbally.

I also have worked very hard with my son to help him overcome his difficulties (the school has done very little). This, I think, has helped empower me and made me feel less like it is all out of my control. I still hold hope that he can overcome his difficulties, at least enough to function in a classroom. It may not happen, I know, but he has come so far in the past year and a half since we started working intensely with him.

It is easy to feel like life is not fair and believe me, I often feel that way. My son has both visual and auditory processing problems along with memory deficits which make reading a major challenge. Even in the more rarified world of LD, his problems are severe. One day, however, I was at the beauty salon and a woman was there with an autistic child. It was clear that she had it much harder than I (she had to hold him on her lap for his hair to be cut and he screamed the whole time) and I was reminded to count my blessings.

Beth

I think that most, if not all parents of children with any kind of disability experience the same feelings you are describing. I know I did. I’ve even heard it said that we must go through the seven stage of grieving (leading to acceptance) just as we do when somebody dies. Early on, my husband and I used to spend a lot of time wondering why my son had these problems and whether there was anything we could have done differently. Now, we spend our time figuring out what to do about the problems rather than worrying about why. That means we do everything we can to understand how our son learns and how we can help him to achieve all of which he is capable. We read a lot of articles, we talk to a lot of professionals, we subscribe to various publications, and we stay in close contact with my son’s teachers. My son is both gifted and learning disabled and for a long time it seemed as though all we would ever see was signs of his disability. In the right class, with the right support and the right medication, my son is now doing amazingly well. So, don’t give up hope. Whatever you did or didn’t do (and probably the only thing you or your child’s father did was pass on certain genetic characteristics), you can’t change the past. Your job now is to figure out what to do about the present. I don’t know if you have considered counseling, but perhaps it would help you to feel better. Three years is a long time to feel guilty.

Andrea

I saw this posted on another board and thought it might help.

Andrea

October 2001

Special Kids Need Special Parents

Ruth Lebovitz, D.S.W.
Most books have blurbs on their covers. These reviews are very favorable,
since they are intended to attract readers. But how many us have riffled
through the pages of a book and then put it down, disappointed? That won’t
happen with Special Kids Need Special Parents, by Judith Loseff Lavin
(Berkley, New York, 2001). What is on the cover is indeed in the book. Here
some of the comments: An “honest, compassionate guide.” “Ms. Lavin’s book
will serve as a valuable compass and road map for families of children with
special needs.” “An indispensable resource.” “A must read.”

Ms. Lavin provides a wealth of information that is never boring and is always
parent-friendly. Her goal is to help parents of a child with special needs
become the best parents they can be by providing them with knowledge and
encouragement. And she succeeds admirably.

Judith Lavin herself was thrust into the world of parenting a child with
special needs when her daughter was born with a cleft lip and palate. As
Lavin walked the halls of children’s hospitals, she noted that while the
children were well cared for, the parents were not. They felt confused and
conflicted, often on emotional roller coasters as they struggled to
understand what was happening to their child, while doubting and questioning
themselves.

Recognizing that she had many of the same concerns herself, Lavin searched
for a book that would give guidance and support to parents. After a fruitless
quest of almost 10 years, she decided to write her own book. She interviewed
professionals from the fields of medicine, psychiatry, psychology, social
work, law and education and also families of children with special needs,
including well siblings and grandparents. It took seven years to do the
research. She wanted her book to support families and to bring out the
professionals’ point of view so that parents can better understand the
professionals and vice versa. She includes children with all kinds of
disabilities.

Ms. Lavin divides her book into seven parts, each containing two to four
chapters. Part I begins with the question, “How Could This Happen?” and
includes chapters on grieving and on God. Most parents of children with
special needs begin with this question when they learn about their child’s
disability, and almost all start to grieve. When she began her research,
Lavin was not aware that grieving was so important. However, she learned
that, “when a child is born with, or develops, some problem, parents mourn
the loss of a healthy son or daughter.” And then she walks the reader through
the different stages of grief. At first there is disappointment. “Finding out
that your child has special needs is an emotional earthquake.”

But learning to deal with this shattering of dreams is essential if the
parents are to move on. “In order to go on,” Lavin writes, “you must let go
of your original ideas so you can set more realistic goals.” She helps
parents find these goals, not only through what she writes but also how she
writes. Lavin’s style is conversational but never superficial. The reader
feels as though Lavin is in the same room with her as the author explains how
scary grieving may feel, how the different stages operate and feel, how there
is no one way to grieve and how it is okay to focus on yourself at this time.

Lavin concludes this chapter, as she does all chapters, with a section she
calls “Thoughts to Remember” which consists of a numbered list of one to two
sentences each bringing out key ideas from the chapter. These lists are worth
their weight in gold and highlight Lavin’s skills as a communicator. She ends
her list in the chapter on God with the comment that, “Finding happiness in
spite of your problems is hard but satisfying work.” In one stroke, Lavin
recognizes the travail of the parent whose child has special needs but
balances it with hope. She never feels sorry for the parent—or for herself!
And she recognizes the role of spirituality in finding that hope for many of
her readers.

In choosing to focus on the family in Part II, Lavin takes the reader from
the “why” questions to the “how” questions—how the marriage, the
grandparents, the well siblings are affected by the child with special needs.
In brief, this special child is a family affair; hence Lavin coins the
phrases, “The Special Family,” “The Special Marriage,” “The Special Parent.”

According to some experts, 50 percent of marriages fall apart under the
stress of having a special child. “The parenting process takes enormous
resolve,” writes Lavin.”And sometimes, sadly, it costs people their marriages
and families.” Lavin identifies places where trouble can begin: if a parent
takes her child’s illness as a personal blow to her ego; if parents get stuck
in the “Blame Game” and, instead of supporting each other, criticize each
other; if Dads are neglected and all support is focused on Moms; if focus on
the ill child is used to avoid looking at marital problems; and if financial
strains, including dealing with insurance companies, become a nightmare.
Lavin also looks into the challenges interfaith marriages face in coping wih
a child with special needs. Clearly she is very up-to-date—interfaith
marriages are on the rise. Over and over again, Lavin stresses open
communication. Recognizing that many couples have difficulty in this
important area, Lavin strongly recommends therapy. “Get early psychological
intervention to examine pain, counter marital stress and help you sort
through individual feelings about your child’s disability.”

Lavin gives similiar advice to grandparents and the well siblings. They, too,
are deeply involved and experience many of the stresses the parents do. Lavin
writes, “Grandparents can feel confused, frustrated, helpless and isolated.
They grieve for both their children and grandchildren.” Well siblings can
feel angry and embarrassed by the behavior of the sick child or feel guilty
thinking somehow they caused the problem. Learning to talk about their
feelings can reduce pain for both grandparents and siblings. And “give
megadoses of love” to the siblings, Lavin tells parents. No one said that
being a parent is easy, but it looks easy compared to being a special parent.
Lavin never gets lost in exploring the many facets of family relationships.
In fact, it is amazing how much her conversational style illuminates family
dynamics without shortchanging her analysis or becoming simplistic.

Having informed the reader about special parents and special families, Lavin
then opens the doors to the special child herself, looks at her needs and at
how parents can meet them and help her grow.

Not surprisingly, Lavin devotes a major portion of her book to these
tremendously important matters. A quick look at chapter titles tells the
reader what to expect: “Parenting Acceptable Behavior,” “Understanding
Developmental Stages,” “How To Deal with Teasing and Other Hurtful
Behaviors,” “Helping Your Child Grow Confidence,” “Self-Destruction: Can It
Be Prevented?”

Writing these chapters was not easy. Lavin struggled with “Parenting A
cceptable Behavior.” At one point she felt, “It’s next to impossible to
discusss parenting methods for a child with special needs because of the
enormous range of skills and abilities among this group of children.” But she
felt that teaching a child appropriate behavior was such an essential part of
parenting that she gathered as much information as she could and shared it
with the reader.

“The hardest part for any parent,” writes Lavin, “is determining what they
can realistically expect from their child and what is unrealistic.” According
to Bonnie Senner, a licensed clinical social worker who works with special
children and their families and is one of the many professionals Lavin
consulted, parents need to observe their child, to become knowledgeable about
their child’s special needs, to read the literature, to work with
professionals such as physical and occupational therapists, learning
disability specialists, etc. In that way, parents become the ones who know
their child better than anyone else and the ones who speak up if they hear a
professional say something that doesn’t make sense.

How parents see their child plays a big part in how they teach acceptable
behavior and how they help confidence grow in their child. Joanne Green,
mother of Joey, a child with cleft lip and palate, gives this crucial
ego-building tip: “Don’t allow your child’s condition to define him.” (You
don’t have a cleft-lip child, you have a child who was born with a cleft
lip.) This point of view cannot be overstated. Once parents see their child
as a child first and a child with a handicap second, then the base is laid
for setting appropriate limits, teaching the child to take responsibility and
learning to be thoughtful of others and banishing feeling sorry for oneself —
by parent as well as child! One of Lavin’s thoughts to remember is, “Don’t
pity or shelter your child—let [her] try to achieve.” Overprotection
undermines her development and confidence.

But there is more—much more—that parents need to know about parenting their
special kid. There are issues concerning hospitalization, finding the right
therapist, information about prosthesis, wheelchairs, mobility aids, hair
replacements and the art of camouflage. The final section of the book deals
with these matters as well as with the all-important concerns about schools,
the education of children with special needs, their rights, the power of
advocacy and legal issues, including the matter of trusts.

Lavin designed her writing to be a “pickup” book. She advises parents to flip
through the chapters and start at a place that meets their needs. Each
chapter is self-contained. And last, but not least, the book concludes with a
resource guide listing people and organizations that can be helpful.

Clearly Lavin amply meets her goal of providing the kinds of resources that
would help special parents, their special family and special kids as they
confront the many challenges in their lives.

> Ruth Lebovitz has a doctorate degree in social work and works with parenting
> groups.

Hi Sandy,

My advice to you is that you have to trust in people, open up and seek out people who can provide you with VALUABLE advice and support. There ARE people who really want to help and share their stories and feelings with you as well. You don’t just need an ear to bend or someone to feel badly for you and please trust me when I say you don’t WANT that either.

I made the mistake of being open with the wrong people; by that I mean just talking to anyone who would listen in hopes of making myself feel better. In a way it did help to hear myself say YES, there is a problem with the way my son is progressing. But I feel I wasted time, energy and drained myself emotionally talking to people who 1) didn’t understand what the heck I was talking about and 2) ended up misunderstanding and misjudging my son.

I am the type of person who always wants to know why. But what I am finding out after 3 years is that there is no concrete answer to that question when it pertains to my son and LD. But I have built up a small network of people I know I can talk to and the best part is I don’t have to explain myself and most importantly MY SON to them. But as I said this was not easy. But once you take that first step it becomes addictive and people actually end up seeking you out too. We all need each other and the network grows.

The best place to start, I found, is a LD group of some sort that deals with disabilities. It doesn’t even have to be specific to your son’s disability, but it helps. You begin meeting people with similar situations and if it’s within your community or school district you will be surprised that you will see some familiar faces there, most importantly faces who care about what you are going through and they point you toward the right resources.

I tried individual counseling and I felt more isolated and it almost made the problem seem shameful, like I was trying to hide everything. I am a shy person and getting myself out there was not easy task, but I did it and I do not regret it one bit.

My second son is now having many difficulties in first grade and those feelings of shame and failure that I went through with my first son years ago are creeping back. The difference this time is that I have the right people in place that I can talk to and I now know where to focus my energy. IT’S NOT ABOUT ME AND HOW I FEEL, IT’S ALL ABOUT MAKING SURE THAT MY CHILDREN HAVE WHAT THEY NEED TO BE SUCCESSFUL PEOPLE, DISABILITIES AND ALL.

I always have to remind myself that God does not give us more than we can handle, that’s hard sometimes.

GET YOURSELF OUT THERE for your son’s sake. You are the only one he can TRULY count on to represent him until he is old enough to do it for himself. You will find too that you will have to be assertive and educated about what your son needs because the school won’t just offer things to you. You have to know what’s going on and the reality is that you WILL be the one to blame if you do nothing.

I wish you the BEST OF LUCK and hope you take that step; the rewards are wonderful.
If you ever need a helping hand, I’ll be here!

Lisa