[INF2FParents] Look Through the Windows of My World

[Guest guest]

Look Through the Windows

of My World

By Pat Linkhorn

An

open letter to educators from parents of children with special needs.

This " open letter " is, of course, not

representative of all parents of children with disabilities, but I've tried to

make it a fair sampling of the views I've heard expressed from other parents. I

know I won't live to see Utopia and my children probably won't either, but the

laws that are being passed today providing inclusion of children with handicaps

into public schools give educators the opportunity to make this a generation of

better people. And that's one step closer!

You can't walk a mile in my shoes, but take a short journey with me and I can

show you scenes from my life. You're the person responsible for my child's

education - a superintendent, a principal, a teacher, a guidance counselor or a

special education director. The object of this is not to make you feel sorry

for me. It's to try to help you understand me and my child. If you can

understand something about the places I've been, you may be able to understand

where I'm coming from today.

This first window shows you a death. It's not a typical death. We didn't get

flowers or have calling hours. It was a very private affair and not too many

people even realized it at the time. This was the death of a dream.

You see, I always thought I'd grow up, marry and have a couple of

" normal " children. When this death occurred, and it doesn't matter

whether it happened when my child was first born, or as he began to develop. My

whole life changed. I hadn't planned to have a child who had to use a

wheelchair, or who would never be able to hear or see, or who couldn't

" pass " a standard I.Q. test. I was forced to change my whole outlook

on the future. It may have taken a while to go through all the stages I had to

go through to get to where I am today. There was grief. A lot of that. There

was a lot of denial too. I had to get through those two stages before I could

accept what had happened and accept my child and the limitations he would put

on my dreams. I had to come up with a new dream.

This next window shows me after I've learned to accept my child for who he is.

I've learned to take all the backward glances and tasteless remarks in stride.

I've seen ignorance from some people I used to think were intelligent and I've

met some really wonderful people who I never would have known, had my child

been normal. I've had to learn how to make people understand that my child is a

child first and handicapped second.

I've seen miracles too. I've seen the first step the doctors said would never

happen and I've seen the light of recognition in my child's eyes when he

finally grasped the " meaning of something " . And I've seen sunsets you

wouldn't believe once I had to really look at them and explain them to my blind

child. What may seem ordinary to you has taken on a whole new significance for

me.

I've learned a whole new language too. It's called " medicalese " .

Doctors tend to speak in words you don't hear every day. At first, I thought

I'd never be able to keep all the terms and " isms " straight, but I

speak it fairly fluently now. I'm beginning to learn " teacherese "

now. You use a lot of abbreviations and numbers, but I know I can learn your

language too.

Even though I've accepted my child, this next window will

show you my fears for my child's future. I realize it's going to take a lot

more effort if my child is to lead a fulfilling life. Learning may be difficult

for him and in some cases, impossible, but I've really been trying to make his

life as normal as possible. I try to focus on the abilities he has and I try to

make him feel worthwhile.

I realize there are some things that my child can't do yet and he may never be

able to do some things. Sometimes, I tend to focus too much on what he can do

and not what he can't do, but it helps me and my family. Some days I seem to be

taking three steps backward for every one forward.

You may only see the bad things about my child. It may not seem fair to you to

spend more time with him or do things differently for one child, when you have

a class room full of children who learn things in standard ways. My child may

disrupt your class. He may not seem to be learning much. I don't expect you to

ignore other students for his sake. I don't want him forgotten in a back class

room with all the other " different " kids either, although he may have

to spend some time in a smaller class room with more individual attention. My

goal is to make his life as normal as I possibly can, and being around regular

kids helps. It will take some understanding on both our parts to work this out.

Perhaps some of your brighter students could help my child in some areas.

You'll be teaching them about responsibility and they'll learn acceptance.

They'll view handicapped children as children first and handicapped second.

They may learn to accept my child before you do.

As a parent, I know I'm not perfect. I make mistakes every day. I realize

teachers are only human too. I also remember the time when some of my teachers

were up there with God, in my estimation. They had such an impact on my life!

Your lives probably aren't as worry free or stress free as I used to think and

my child may only add to a day that's too full and too underpaid. If you at

least make the effort to try to treat my child as a person, I know how he will

view you. Sit next to God for a while.

My attitude may not be the best you've seen lately. I may already have had some

run ins with the " system " before I ever talk to you. I may come on

too forcefully and seem too demanding. Maybe I've had to be to get services for

my child. Maybe my sister-in-law has excluded my child and I from every family

get together she's had since I've had a " disabled " child. Maybe my

husband isn't supportive. Or maybe the professionals I've dealt with before

have done everything they could to help me. Maybe I'll assume that you will

too, and I won't remember all the hard lessons I've learned along the way. Or I

may remember each one too vividly. I may be a combination of all these

feelings. Whatever the case, I am just a normal person who wants the best for

my child.

I probably already know that my son won't grow up to be the captain of the foot

ball team and my daughter won't be a Home Coming queen, but that doesn't mean

that I don't have dreams for them. I've just substituted other dreams for those

I've lost. We all harbor some pretty unrealistic expectations for our children

and I'm no different than any other parent.

If I seem to want too much from you, I don't mean to. I may have a lot on my

mind. I may not have totally accepted the direction my life has taken; it

sometimes takes years for a parent to get to that point of acceptance. That's

really not too hard to understand when you realize that I lived with that dream

for most of my life, whereas I've lived with my " reality " for a lot

shorter period. I may even be feeling cheated because my life seems so

different from yours. There may be a lot of resentment in me. Or I could just

be tired of fighting the battle. It may be that you have a better education and

you may feel more qualified to make decisions about how and what my child will

learn.

In most cases, you are the expert. But if you feel I'm

realistic and I've accepted my child's limitations, there will be instances

when I will know what will work best. In that case, I am the expert. I've

learned some things that you should be thankful you've never had to learn.

If you take all the things you've seen through my windows into consideration,

you may understand me and my child better. If we work together, maybe we can do

what I pray for each night. That is to give my child as many opportunities as

possible to lead a normal life, in a world that isn't fair.

Copyright 2001 Pat Linkhorn

Pat Linkhorn is the

Editor of Special Education at About.com and a professional advocate for

families with children who have special needs. She is also an experienced

parent and has two girls with special needs - autism and blindness due to

prematurity. http://thelinkto.com/linkhome