Conversations with a Mother of an Adult Child with a Disability

(© June 30, 2022) New Horizons Un-Limited

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Conversations with a Mother of an Adult Child with a Disability

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      Introduction

How would you deal with frustration faced with disability? Are the people with disabilities supposed to be more resilient than anyone else?

Why?

What is it like for individuals with disabilities and their families to live in a world which moves at a different pace; a word which has different abilities and different options?

What is it like to try to balance all these differences without any additional time beyond the same 24 hour day, seven days a week allotted to all?

How do we get others to understand a life immersed in problems faced by individuals with disabilities and their families?

How do we get others to understand this while not losing their good will ad the social opportunities that are so needed?

This is the way it is! Now what can we do to find opportunities, solutions to challenges, bring awareness and understanding?

Sometimes it takes a lifetime of effort to make a difference
Especially in a life that has many challenges.
Moreover, sometimes the difference we make seems not nearly enough,
But that does not mean giving up.
Try we must, for a lifetime, if necessary,
We cannot give up!

Decades have passed since I was told that my child had a disability. I still recall vividly waking up in the middle of the night in a cold sweat feeling helpless. Helpless as to knowing what to do and whether I would have the capacity to do what might be needed.

Had there been someone to learn from, someone who had been there who could share experiences and ideas, the costs of not knowing what to do, would not have been so great.

Tired of learning from experience?

Want to hear how others have found solutions to common challenges?

Share your solutions, ideas, and your point of view; your beginning or lifetime experiences!

      How Different Life Becomes When Disability Enters One's Family

How different life becomes when disability enters one's family.

It can affect the emotional, social, mental, physical and/or financial well-being of the entire family.

To what extent this occurs varies. In some cases where the disability is minor, it may affect only one facet of living. In other cases, it seems to touch almost every facet of living.

Finding one's way is no simple matter. There are those who infer otherwise—but, generally, they have not lived with the situation.

I recall many, many, years ago a school psychologist who challenged a parent's effort to transfer a student who used a wheelchair from an orthopedic school to a regular school. The psychologist felt that rather than transfer the student to a regular school, it would be more important to teach the child how to use a pay phone, etc. This was in the days of enclosed phone booths. The parent didn't believe they could say and didn't believe they were the expert on disability enough to say, "Show me how to get a wheelchair into a phone booth and I will teach her how to dial the phone."

Silently, however, the decision was made to listen carefully to what others had to say, but to not accept it as gospel. Unless people had actually cared for a child with a disability in their own home for at least a month, they couldn't truly understand the limitations in the child's life; the isolation, the inability to leave the house at any time, the limited opportunities to grow or to learn socially acceptable behavior, the lack of recreation, friendships, etc.

Thankfully, there are people who truly try to understand-they make a tremendous difference.

This book is from a parent's view-to provide new parents with insights into what has worked for others, and what hasn't.

It will not only be about adaptations, but the need to balance time and energy.

It will also try to remind you that:

  • You are not alone in a world that moves at a different pace and under different circumstances.

  • You will find insights and lifelong friends.

Much remains to be done to make the world a better place for people with disabilities. Despite our limited time and energy, it is important we try to improve at least a part of that world.

      An Attempt to Ease the Way for Others

This is an attempt;

    an attempt to ease the way for others.

Maybe by stating the realities, sharing ideas and experiences gained in raising a child with a disability can provide some support to families.

There are so many immediate needs and so much to learn.

Information or books on the subject tend to be either biographies or technical information or written by professionals.

Information or books on daily living are scarce-books dealing with adaptations and the consequences of adapting, whether they be aid to eating, dressing, etc.; social isolation and the need for recreation, lack of acceptance, lack of inclusion by peers, efforts to understand the system, or any of the many changes in life styles faced by families.

This is from a parent's viewpoint.

Learning from others is no simple matter. It is not easy to find others in similar situations. Often distance can separate schoolmates.

The real challenges begin once out of school.

The problems are as broad as life itself. Each facet of living has its own unique hurdles.

Choices in life are reduced. Time is a constant constraint.

There are no easy answers-and many false hopes! - (Much has been left unsaid.)

However, there are also joys and lessons we would not otherwise learn.

      What Lies Ahead?

Too often, when a child is born with a disability, medical professionals do not tell the family what lies ahead. Instead, they tell the family to think positive and take it a day at a time.

This may seem to be a kind approach, however, it does not prepare families for the reality of day to day living; nor will it enable them to advocate for changes that are needed if the child is to have half a chance in life.

Families of individuals with disabilities do not have the advantage of other groups such as ethnic, race or gender. There is little opportunity for forming a strong and cohesive voice, much less a chance for sharing knowledge and experiences. For often one family has no way of knowing how or where to contact another family in similar circumstances.

And the range and degree of disabilities differ, varying from a disability that might affect only walking to multiple disabilities that are affecting communication, mobility, hand control, balance, self-care, lack of normal childhood experiences, etc.

Generally the physical limitations are not as great a problem as are the attitudes of others--for social and cultural inequities often result in exclusion which is more hurtful and can continue on into adulthood.

Add government policies and practices which can inflict on individuals with disabilities a lifetime of poverty.

The way it really is, needs to be told.

Many might not want to learn about the need to correct inequities that confront people with disabilities and their families.

However families who suddenly and unexpectedly find they are facing these problems and inequities might be in a better position to prepare for what lies ahead.

      Difficulties or Consequences to the Family and the Lifelong Effects of Having a Child with a Disability

Rarely does one hear about the many true difficulties encountered by families with children with disabilities and the lifelong effects on the children and the entire family.

Instead, what families usually hear is a pep talk by the self-proclaimed expert, or they may be told, "We all have problems to deal with-you have one kind, we have another."

Often what people fail to see is that it is not a matter of one problem instead of another. Families caring for a child with a disability face the same problems as others-however, these problems are more complex due to the disability and the time and energy expended in their care.

What they don't tell you when your child is diagnosed with a severe disability, is how many areas of the family's life will be changed or restricted. It may be that the person giving the diagnosis does not know the costs, has only a limited idea of the restrictions on the entire family, or feels it is kinder not to inform parents about what lies ahead.

The reality, for those born with a severe or multiple disabilities and their family, is that life will change. There will not be the freedom to participate fully in life. The restrictions affect vacations, sports, friendships, recreation, where you live, proximity to schools, freedom to come and go on the spur of the moment, lack of inclusion in invitations to weddings or other get-togethers, etc.

One can live with their head in the sand just so long. It eventually becomes obvious that exclusion by society is a greater disability than the physical one.

What, if anything, can be done?

The purpose of this book is an attempt to give a realistic view of the "way it is" and what needs to be done to improve the life-styles and understanding of a group that presently does not currently have to prevent being or the wherewithal; "the last minority."

      Expectations

It doesn't strike home at first. Maybe it's because one is already overwhelmed with more than one can handle-learning the new baby will have lifelong disability and the accompanying fear of not knowing a thing about raising a child with multiple disabilities.

It eventually gets through, however, the expectations of you, the parent, are going to remain the same. Generally one finds some understanding on a broad level, however, when it involves a one-on-one situation such as having to spend one's regret about being unable to attend an event or accept an invitation, one hears the comment "Well, everyone has problems."

What doesn't seem to be realized is that families with a child with disabilities aren't automatically immune to other problems in life.

They have the same problems as everyone else-the difference being, the problems have become more complex.

      A Desire to Spare Parents

About 50 years ago, parents formed a group at an orthopedic school. It was with the hope that parents could learn from those who "had been there" just exactly what the future held.

What we found was reluctance by parents with older children to talk about it. I have come to understand that it was not unwillingness to share, but a desire to spare. Parents of older children knew, only too well, the overwhelming situation new parents face in trying to adapt to a situation that changes the future of the entire family. To add additional concerns could well be too much to handle.

Yet, each family that struggles alone to find its way, pays a huge price.

People who have not been there do not readily understand this. One may well hear comments such as, "We all have problems of one kind or another."

The reality is, families dealing with a disability face the same problems faced by all families--the difference being that disabilities make each problem more complex.

Add to that the cost to families in time and energy lost in trying to understand a system that appears to be broken. A "totally integrated seamless system" it is not.

One soon senses the need to learn as much as possible in order to survive.

Yet, there is simply not enough time in a day to do it all.

One is told, "Try to live a normal life." Seemingly good advice, but frequently it comes from people who "have not been there."

The reality is that some families opt out. Others wear out.

Changes are needed.

The System

"It isn't the disability that's the problem, it's The System!"

One of the big frustrations that families encounter in finding ways to help a son or daughter with disability is

"The System"

There is the: ----------------------

Pre-school System

    Education System

      Recreation System

        Housing System

Transportation System

    Medicaid System

      Medicare System

        Adult Services System

Personal Care System

      Independent Living System

        Financial Aid System

          Appeals System

And EACH SYSTEM has laws - -

Laws which you need to learn if you are to survive.

No matter that one does not have the time, energy, chance to get away or the ability to research the law!
One needs to find some way to see how the law applies to your situation.

You will have to learn how to deal with multiple agencies--state, county and federal government agencies
with their many divisions and departments
along with private agencies paid by the taxpayers to administrate the programs.

You may well find that dealing with the system is far more time consuming and frustrating than the disability itself!

----and the stress involved can be very costly to your health!

      The Time Stealing Phone Loop

The ability to get information from a government agency is rapidly deteriorating.

One of the biggest time stealers is some government agency phone systems. They seem to be designed to ignore the caller and benefit agencies.

Now instead of getting a busy signal, the phone is answered by a machine which tells you to call back later and then automatically disconnects.

This can happen 4 or 5 or more times in the same day. A connection is made and then the caller is disconnected. And that is for just one caller. Multiply that by probably thousands of people trying to reach an agency.

It is frustrating and time consuming for everyone, but even more so for individuals with disabilities and/or their families whose lives are already over-loaded.

It was bad enough! Now it is worse. It used to be that when calling a public agency for needed information one might be put on hold or directed to a machine and put through a time-consuming laundry list of numbers and then possibly after a long wait listening to repeated messages saying "how important you are" you might get lucky and get transferred to a department that "can help you."

Unfortunately the help was frequently another machine with a message to leave a message and they will get back to you. Never mind you are calling because you need the information now to meet an agency imposed deadlines for submitting information.

One ends up with no help and lots of time wasted-not to mention frustration at a system that puts itself first and the caller last.

This does not even include the time and frustration in locating the proper number to call in the first place, determining-whether it is a federal, state, county or local matter and then under which bureaucracy the number would be listed.

Nor does it include the frustration after spending a half day pursuing the needed information to be told "we cannot give out that information" - even though the information requested was not of a personal nature, only basic information that would save a person endless hours and effort in pursuing a futile direction. When one insists that it is general information that should be available to the public, one is connected to someone else where the whole procedure of answering machines repeats itself. If a person answers one is immediately put on hold and waits and waits and waits until they can wait no longer.

There is an arrogance in all this-arrogance in the inference that the taxpayer is insignificant and can be manipulated or pushed around.

The agency reaps the benefits. The agency does not have to be responsive

The taxpayer is left holding the bag.

If a privacy guard is on your phone, they cannot read you and you will have to call again.

You are made to grovel again.

      Caregiving Taxes

What a crock!

Parents who care for a son or daughter with a disability for up to 50 years or more find when they need help with the care that they cannot get government help and a caregiver has to be hired. The government decides the parents are employers and must pay employment taxes. (And being time-poor, the inquiries for information, filling out forms, etc. makes one increasingly time-poor.)

Never mind the government saves billions on caregiving and nursing home costs for individuals with disabilities whose care is provided by parents for 50 or more years. County bureaucracies designed to provide care to keep the individual at home determine that the only emergency they will recognize is the death of the caregiver or that the individual with disabilies is terminally ill.

When each county has the option to determine how they will define "emergency" despite the fact that federal and state funds may be involved, there is something very wrong.

Maybe the only answer is for parents to keep track of the costs on an hourly basis of care provided for up to 50 years and then submit a bill to Uncle Sam. After all nursing homes, home care providers are paid-some home care fees run as high as $25 for a visit that lasts less than an hour.

Currently, one cannot even deduct the value of this care from their income taxes-only cash spent and only under certain other conditions. It appears to be a catch-22 because if you need to hire help, you need to pay employer taxes.

What a crock!

      Exploitation

Families will not put a child with a disability out on the street.

The government seems not only to sense this, but at times seems to exploit this, knowing parents in their hearts could not do so-even when they reach the desperation point.

And for parents who reach the desperation point and feel they have to take drastic measures to call attention to the lack of responsiveness on the part of agencies, those in power can always charge the parents with neglect. It doesn't matter: if the parent is old and no longer has the strength or ability to turn a son or daughter with disabilities in bed, or if the caregiving parent dies and working sons or daughters are compelled to try to provide 24 hour a day care when they have their own families to support and take care of; or if the parent preparing for their own death is desperately trying to obtain service to enable a son or daughter to find some type of independent living to prevent the adult child from spending the rest of his life in a nursing home.

No matter, the parent has provided 24 hour a day care for up to 50 or more years, some people in the system just don't seem to comprehend the gravity of the situation for the individual with a disability, much less be willing to make the effort to find realistic solutions.

And guess who will be crucified-the system or the parent!

Let's talk about a catch-22.

      Waiting Lists: Housing and Funding for Live in Aides

It gets awfully scary! Concern about obtaining independent living and the skills needed for a son or daughter to survive after a parent dies is ever present.

It is also a nightmare!

Waiting lists for housing are years long. Coordinating availability of housing with availability of funds to provide live-in aids is next to impossible.

There was some hope when younger individuals with disabilities were included in housing programs for seniors.

However all that changed with legislation that allowed housing for all seniors to exclude all younger individuals with disabilities. The problem apparently arose when drug and alcohol addicts were designated as individuals with disability. When addicts created problems, the seniors wanted them out. So the most vulnerable group-the younger individuals with disabilities without lifetime experiences to draw on were left to survive in a situation that experienced seniors could not cope with.

The change in law also gave private owners of apartments complexes which were built with government funding (taxpayer's money), the opportunity to get wealthy on senior housing while not having to provide housing for individuals with disabilities. Even an apartment complex owned by one city and provides rental subsidies from local real estate taxes would not rent to younger residents with disabilities who had lived in their city all their lives. Rather they reached outside the city for tenants over 55.

What a slap in the face to their residents with disabilites.

And yes they even received federal community development funds for repairs and maintenance of their 102 unit complex. Ironically for seniors, receiving subsidies, only income was considered, enabling those with substantial assets to go on extended vacations at the property taxpayer's expense.

      Day Care

The option of day care for adults with disabilities is limited. Many day care programs will not take young adults. Finding one that does is not a simple task and once found depends on openings available and the length of the waiting lists.

Once one finds a program to meet the individual's needs, one learns that the costs are restrictive:

  • Up to $50 a day plus transportation costs.

  • Van transportation for those in wheel chairs

Two days a week would cost up to $400 a month plus transportation.

Consider these costs in light of the fact that many younger individuals with disabilities are on SSI and have very limited income-generally ranging from $_______ to $_______ a month.

Medicaid and Medicare do not pay for these programs. Waiting lists to receive assistance are years long.

      As It Is

It is a fine line between positive thinking and believing something is true because we want it to be.

And the cost can be great.

Families are given pep talks by professional, educators, relatives, friends and even casual contacts. Granted it may be well intentioned, but it can affect one's sense of reality and expectations.

It can increase frustrations, affect one's health, take the daily joys out of living, and place additional stress on the individuals with disabilities and their families.

And when the oft-quoted promise that - "one can achieve one's dreams" -doesn't materialize, those who gave the pep talks aren't around to pick up the pieces. Endless years of struggling and sacrifice in obtaining an education, trying to survive in a world that moves at a different pace and under different circumstances, leaves families feeling they have been misled.

And at what a tremendous cost, not only of the effort, but in the loss of what has been forfeited in the pursuit of the promise.

      On Being Vulnerable

Probably one of the most difficult areas for individuals with disabilities and their families is their vulnerability. Because their lives are restricted, they have far fewer resources readily available. They do not have the benefit of others´ daily experiences, the familiarity with the marketplace or the location or access to quality medical care.

There simply is not the opportunity to learn from others.

The opportunity that is unavailable is that which so many take for granted--a home computer or the chance to run out to a library for information or use a computer --much less to spend the time there to check reference material. So often information needed is not circulating material and may or may not be available via the Internet.

Finding and paying for a capable sitter adds to already larger than average medical expenses.

Then there is the additional need to obtain quality medical services when some in the medical profession do not accept T-19 patients. So it can and does happen that patients are not only in a position of not having freedom of choice, but frequently become reluctant to challenge their care in any way, for fear of losing the care they have. As one patient termed it, "having to grovel - again."

Once one is not in the mainstream of everyday living, one does not have the resources to draw on, because one's life is restricted, there is less chance of exchanging ideas or information.

The opportunity to learn from others is unavailable.

      Knowing What Questions to Ask

In the average world, one frequently does not know the questions to ask, much less know where or how to get the needed information.

One can ask co-workers or acquaintances for information. Generally this is not an option for the isolated homebound. Those with disabilities need, not only the same basic information to function in the world, but need much additional information relative to programs, adaptive equipment, eligibility rules, and simply "what is out there."

Since it is far more difficult to obtain more specialized information, knowing what questions to ask becomes extremely important.

The obstacles in communicating for those with speech and neurological impairments are huge and this doesn't even take into consideration the almost impossible situation of being able to take notes.

And it all takes time away-time that the time-poor do not have.

      Doctors

Finding the right specialist is not easy-and it well may take more than one. It requires finding someone who has not only the skill and expertise, but the insight to understand the problems caused by involuntary movement and mobility disorders-and to understand them from the patient's viewpoint as well.

It requires finding someone willing to make the commitment to find the best solution to problems without creating ones.

As an example, one neurologist on a patient's first visit promised the patient that in the future all his bad days were going to be as good as all his current good days. The neurologist immediately admitted the patient to the hospital, removed all the medication the patient was on and proceeded to put him on another drug. The patient's involuntary movement became worse and he had difficulty in walking, eating and at one point, breathing. He also ran a fever and became bloated from constipation. It was a nurse who insisted the doctor do something to help the patient-he couldn't let him go on like that. The doctor then put him back on the old medication, but continued the new and the patient continued to have the same problems. By the time he left the hospital all the patient's formally good days had become bad days.

One would like to be charitable and say that because a mass was found during the hospital stay, that it clouded everyone's vision-but that could not account for the rapid deterioration in movement and motor skills.

It was only after the patient came home and the parent questioned whether the sudden and sever decline in the person's well-being might be attributed to the new medication, that the home care nurse talked to the doctor and the medication was reduced and eventually eliminated. The patient then regained some of his good days.

So much for false hopes and false promises.

Living with Involuntary Movement

It's there! --- It's always there!

    --- Except during sleep. ---

It will be there in --

speaking,

eating,

walking,

dressing,

writing,

reading,

turning a page,

handling liquids,

and more.

It will be there all one's life!

And it worsens under stress, excitement or illness.

Efforts to subdue the movement seem only to increase its speed and strength.
Dental work, eye exams, haircuts, etc. can become extremely difficult.

This doesn't even touch on dealing with the hurt caused by the insensitive attitudes of others.

Individuals living with involuntary movement live with frustration every day of their lives.

They know the cost of perseverance!

They deserve our admiration and respect!

      Acceptance Not Equal

Individuals with disabilities in wheelchairs are frequently accepted more readily than individuals with disabilities not in wheelchairs.

One person offered this view, "People can walk away from individuals using wheelchairs so they are more inclined to engage them in a conversation-this is not the case with ambulatory individuals with disabilities."

One's first impulse is to say "Not so."

Maybe the reason is faulty, but the fact remains that people in wheelchairs are included by the non-disabled far more readily than people with disabilities who are ambulatory.

What is the reason?

Is it that the wheelchair is of itself a symbol-a symbol that others can understand?
Is it that those individuals with disabilities who can walk-although unevenly-are viewed as different?
Is it an ego problem for those who are not disabled,-not wanting to associate with a person who is different?
Is it the inability of many non-disabled to tolerate being with someone different because they too might face the stares and rejection encountered by those individuals with disabilities not in wheelchairs?
Is it the result of comedians who have conditioned others to think that a person who is different is to be laughed at?
Is it suspicion that the individual is intoxicated, or on drugs rather than an individual with a disability?

Whatever the reason the exclusion is real! And it hurts!

Give yourself a self-test: What would make you look better? What could you handle? Would you be more willing to take an individual in a wheelchair to lunch, shopping, the park or a movie?

Would you be willing to do the same for an individual not in a wheel chair but who by your side is walking with involuntary movement and balance problems?

One young man with involuntary movement found by using a cane he was not as subject to ridicule or being laughed at. Although the cane was not physically necessary, it worked to reduce the cruel reactions of those who did not see the suffering they were inflicting on those who through no fault of their own had a disability.

How Can I Do This?

Seemingly endless difficulties face individuals with disabilities and their families.

"How can I do this?"

      -------------is frequently a question.

Because of the nature of the disability situation, it is often impossible to run out to the library
--much less spend vast amounts of time searching for information.
Nor are there knowledgeable others close by to whom one can turn for possible insights.

Depending on the type of severity, a disability can impact many facets of life ranging from
vacations and education, to the need for ongoing adaptations to daily living,
such as dressing, eating, communicating, holding books, pencils,
and more.

There has to be a better way to find solutions; to make things a little easier for others!

Maybe we could play a part in improving the situation,
if we could talk about the difficulties and share the "how-to's"
in the hope that others can be spared some of the pain and frustration in finding some answers to ....

"How can I do this?"

      Internet

There is no question that access to the Internet can open a wealth of information to those who previously had no way of obtaining it. Unless an individual has a computer at home, however, the opportunity to learn how to use it, and can afford Internet access, it is not available as a resource.

Internet access is available free of charge at local libraries, senior centers, schools, etc.

Homebound individuals, however, cannot just run off to the library at will. It requires scheduling van transportation a day or two in advance, loads of time and of course the cost of van transportation. This doesn't even take into consideration the difficulties for a individual with disabilities to utilize the resources much less the impossibility for many to take notes.

It would seem if the government can provide discounted access fees to schools and libraries, the same discounts should be available to those who are unable through no fault of their own to utilize these programs.

      Time-Poor

What is it like for individuals with disabilities and their families to live in a world that moves at a different pace,

    a world that has different abilities and different options?

What is it like to try to balance all these differences without any additional time beyond the same 24-hour day,

    seven days a week, allotted to all?

A child with a disability has extraordinary needs which require a great deal of time. More time is needed for many everyday things,

    for example: to dress, to eat, or to clean up.

Hurrying is not an option.

    Hurrying can cause an increase in difficulty, increasing frustration, and making tasks even more difficult.

Frequently, one finds there is insufficient time to meet the basic needs of the family: appointments, home maintenance, shopping, haircuts, etc.

    Arranging for and waiting for special van transportation can often, only make things worse.

It's often not possible to do it alone!

Help would make a big difference!

One family has found it pays to be gentle with themselves,

    to not have super human expectations,

      to know, at the end of each day, they have done their best,

        aware their best is often, not good enough, but it is all there is,

          and tomorrow,

            they can "begin again."

      Getting Away

Most people can get away for a vacation at least once a year.

Families with children with disabilities find it difficult to do so and sometimes find it impossible.

If one is fortunate to be in a family in which a summer cottage or year round recreational condo is available, vacations are possible.

Tor others who try to go the regular route-rent a cottage for a week, travel, eating out, motel rooms-it is not a vacation. It is much harder physically and emotionally to go away than to stay at home.

One thing that worked for us for a while was mini-rips close to state parks. With advance planning for 2 nights at motels, we could arrange 3-day get-aways. A camp stove and grocery stops along the way enabled us to avoid restaurants with the inevitable inconveniences and stares.

Things have improved. No some state parks have cabins available for the individual with a disability. They are great. However demand is huge and there are restrictions resulting in many not being able to a get a reservation. It is a start - many more are needed.

Wisconsin currently has 8 cabins. Ottawa State Forest, Wildcat Mountain State Park, Pottawatomie State Park, Copper Falls State Park, Kohler Andrae State Park, Bong State Recreation Area, Harrington Beach State Park.

The History of Wisconsin groups that undertook the project of building cabins in the state parks so that the individual with a disability can enjoy the camping experience along with other campers.

What a wonderful gift!

      Generalities

Speaking about people with disabilities in generalities is like speaking of the general population as all having the same characteristics, limitations, shortcomings, etc. without any significant differences.

What can be done to get people to understand that speaking about individuals with disabilities in generalities in effect causes them to be seen as a separate group rather than a valid part of the society in which we live?

Speaking about people with disabilities in generalities fails to acknowledge key points:

    1. The variety of disabilities is huge and the type and degree of disability significantly impacts the degree of struggle and time involved in accomplishing basic tasks.

    2. Non-disabled people tend to think individuals with a disability can do anything if only they try hard enough.

    3. The uniqueness of each individual is not seen (in the non-disabled world no one expects Joe to be Henry or Mary to be Alice).

    4. individuals with disabilities have the same problems to deal with as everyone else--problems associated with their disability are not, instead of problems faced by the general public, but rather in addition to.

    5. Some programs designed to help individuals with disabilities in effect take away their freedom of choice.

    6. individuals with disabilities not able to work who are dependent on programs such as Medicaid and SSI are destined to live a life of poverty.

    7. It is generally, through no fault of their own, that people people have disabilities.

    8. Senior recreation and meal programs designed to prevent isolation and loneliness for the elderly are NOT open to individuals with disabilities despite the fact that they have endured isolation and loneliness their ENTIRE lives -- and NO COMPARABLE programs exist for them.

This is by no means a complete list. It is only an attempt to convey what is taking place.

About Defining Disabilities

One soon learns the term disability is far too broad. One wouldn't describe all the people who live in one town as having identical characteristics and limitations. Yet, that is what frequently happens in using the term disability.

The distinction is generally not made as to whether an individual has just one function affected, such as the inability to walk with all other functions intact, as against an individual with multiple disabilities which affect every facet of living: walking, talking, eating, personal care, writing, cognition, balance, etc.

Yet parents frequently hear from others they know someone with a disability who is doing so well and accomplishing so much. These comments are often made by those who do not even begin to see the distinction between the effects on type of disability and another, much less the basic difference in personalities and opportunities of all individuals (those with disability or not). A parent soon learns that any attempt to respond to these comparisons, is just an exercise in futility.

If one cannot rightfully impose the same expectations of every individual living in one town, then why do it to the person with a disability? Doing so adds just another layer of frustration to what is already an overwhelming situation.

Comparisons do little or nothing. Respect is what is due and needed for ongoing struggles and functions.
The best answer I have heard, "I'm not Joe, I'm me."

Is There a Better Way to Define Disabilities?

The term, "disability," is too general! It leaves the average person lacking in knowledge and insight as to what an individual with disabilities can or cannot do.

Medical classifications in themselves have limited value as most people are unaware of the effects of various disabilities.

Ask anyone how Multiple Sclerosis, Muscular Dystrophy, Cerebral Palsy or other disorders restrict an individual.

Most people would be hard pressed to tell you the effects of a specific disorder, nor could they tell you to what extent the individual with a particular disorder can function, nor explain whether the disorder is a multiple disability affecting all facets of an individual's life. This would not, even be taking into consideration neither the severity of the condition nor the age of the individual.

For example, a person who has been diagnosed with cerebral palsy could have only one limb involved affecting only his ability to use one hand, or his whole body could be involved affecting his ability to talk, write, communicate, walk, and understand, or the disorder could be anywhere between these two extremes.

A greater comprehension of an individual's ability to function could lead to better understanding and more realistic expectations, but more importantly, it could diminish the frustrations of people with disabilities and their families in dealing with a public who compares or measures expectations against the neighbor or friend with a disability whose only disability might be that he cannot walk, but who has the benefit of and can rely on hand skills, communication, or cognitive and social skills enjoyed by the rest of society.

Defining a disability by medical diagnosis is, in effect, defining a disability by cause.

Is this existing system adequate?

Could the system be significantly improved by defining a disability by EFFECT rather than by cause?

Access to services can be denied or funds misapplied because of categorization of disability by cause. In actuality, people with differing disabilities can require the same type of services.

The risks in defining disabilities by cause are not meeting the needs of the individual with disabilities, misapplying services, or overlooking existing unmet needs.

With the shortage of available funds and the projected number of people needing services for chronic conditions, better ways of utilizing services is essential.

A system based on functioning limitations might lead to increased understanding by legislators, as well as individuals.

It could also be useful to van, health care and other companies or therapists and educators who work with people with disabilities. It could result in improved access by the individual with disabilities and their families to needed services.

There would no doubt be some risk in redefining disabilities. However, since the current system is not readily defining the needs of individuals, defining by effect might be worth a try.

Defining Disabilities: Suggestions

One possible way to define disabilities could be by using a scale to measure mobility, speech, etc.

Using mobility as an example:

    0 = no impairment.

    1 = some adaptive behavior.

    2= normal functioning, easily disrupted by changes in environment.

    3 = minimally impaired -- using minor adaptive equipment.

    4 = major impairment -- requires significant adaptive equipment.

    5 = unable to function without assistance.

The same scale could be used for speech, sight, etc. Your comments are welcome. If you have questions or ideas, information and solutions that you would like to share with us, contact us by e-mail at: horizons@new-horizons.org or to use our NHU E-Mail Form or NHU Community Forum, click on the links below.

      Start

Start showing respect for people with a disabilities!

Start by trying to truly understand the tremendous effort people with disabilities put forth each day.

Start attempting to see each of your own daily activities as if you had multiple disabilities -

      • affecting your speech,

      • affecting your coordination,

      • affecting your balance.

Consider it today -

      while you are -

        bathing,

          dressing,

            combing your hair,

              brushing your teeth,

        talking,

          walking,

            climbing stairs,

              reading,

        shopping,

          entertaining,

            traveling,

              planning how to get to a destination (time, effort and whether even possible),

                wrapping a gift.

Start thinking about it. Start thinking about what it must be like to encounter rejection, stares, ridicule and arrogance.

People with disabilities face these frustrations and hurts daily from childhood to old age.

Could you handle it?

      For even one, single day?

      One Parent Families
When thinking about caring for children with disabilities, there seems to some awareness of the extra time and energy needed-but rarely do others seem to be aware that often there is only one parent - - not two – to run errands and share the responsibility of day to day care.

So instead of having a standard 24-7 week, a one-parent family with children with disabilities covers a 48-14 week.

So when you encounter such a family whose house is in need of maintenance, don't question, don't criticize. Instead think for a few moments how you could possibly manage to do more without jeopardizing the well-being of the child. Try to appreciate the impossibility of "doing it all" and which you would choose-meeting the child's needs or having spotless house.

It simply is not possible to do both.

      Responsibility 24-7

What a crock!

People will tell an individual with a disability that they have a right to make their own choices - to be independent.

Parents wish they could tell those people who give this unasked for advice, "The advice sounds great but unless you have had the responsibility 24-7 for that individual with disabilities for some 50 or more years, you are doing the parents a disservice unless you tell the person with disabilities at the same time that along with independence and choices goes responsibility. Unless you are willing to tell the individual with disabilities that, you are doing more harm than good."

If you don't see that, then maybe taking the individual with disabilities into your home for just one month might provide some insight.

If you have the courage or unselfishness to do so, you will find along the way the impact of well-meaning people who are constantly reinforcing childish behavior: not encouraging the person to grow up; and not wanting to take on responsibility unless it is at a convenient time for them. They are completely unaware that this is a forever task for the parent, not one that accommodates inconvenience. Be prepared for ending up the fall guy. You will find a lot of criticism will come your way. You will find some well-meaning individuals quickly either drawing lines or finding excuses so that they will soon rid themselves of any sense of responsibility. One could write a book about the behavior of others who could help but prefer not to help. Those who want to keep their image as a caring person and so will insult the parent's intelligence by either giving limited assistance or giving every "acceptable" reason why they cannot become involved (including not feeling well or having plans to play cards with a neighbor.)

When parents find the courage to ask someone to help by taking the child for a weekend to enable parents to get away for a much-needed break-guess what? Inevitably, after 24 hours, they will find a way to slip out from under responsibility; finding someone else to free them of the burden they have undertaken for one weekend out of their lives.

You might even find that these are the same people who will not include your family in family get-togethers or who will not invite your children to their wedding, but will include children of others who are less closely related.

Yet most parents realize that these people have no idea what it is about-that in order to gain any genuine understanding they would have had to have been in the same situation themselves and mot parents would not want that for anyone.

As one parent used to say when someone called her a saint, "I could just throw up."

      Expectation of Others

In attempting to live in a world that moves under different circumstances and at a different pace, the child with a disability and their families are constantly confronted with trying to balance their essential needs against existing expectations of others. These expectations can take the form of attending special occasions or accomplishing more than is humanly possible.

One is thankful for the general understanding of this. However what one finds in many instances is that when one gets down to the one-on-one relationship this understanding falters. There is the expectation-that you make the effort to fill these expectations.

How does one find balance-between these expectations and the realities of your family's needs?

One soon learns that pointing out the difficulties and sometimes the impossibilities of meeting specific expectations is not a satisfactory option.

Some look upon this as an excuse, and without hesitation, tell you that everyone has problems. What they can't seem to realize is that you are not spared the problems of daily life-the only difference being is the problems are made more complex by the additional time, energy, assistance and emotional toll involved.

Of course people do not want to hear this.

What is the answer? I'm not sure.

Each of us has to find a way to handle it.

It has helped me to realize that some people cannot understand what they themselves have not experienced. And you do not want them to have to pay the price to understand. This puts you back to square one.

And always stay aware of your very good fortune in having in your life those who do understand. They are the ones that make all the difference.

      Living a "Normal" Life Against Impossible Odds

Fifty long years have passed.

I've searched and searched for a way; yet have not found a way.

Maybe it can't be done. Maybe living a "normal" life against impossible odds is more fantasy than reality. Maybe those who provided false hopes believed what they preached; maybe they believed a "one size fits all" approach-no matter the type or severity of the disability; or maybe they truly believed the world might be more accepting than it actually is.

But, those who held out false hopes have somehow made life harder. And they are no longer around to help pick up the pieces. Parents when trying to find solutions, find frustration instead; find they are criticized for expecting too much or not expecting enough; not doing enough or for doing too much.

Parents find themselves alone; trying to do the impossible; trying to meet the many extra needs of their family while restricted to the same 24 hour day allotted to all.

      Please Don't Judge or Critique

Why is it?

Why are parents of children with disabilities expected to do the impossible?

Why are parents made to feel responsible that the child with a disability is not somehow managing to do all the things other children do?

Why when parents have conscientiously followed the recommendations of experts, are parents the ones made to feel accountable for following unrealistic routes?

Where are those experts whose recommendations did not work out?

Let's stop judging parents who are doing their best and who live each day aware that their best is not good enough--but that is all there is.

Parents don't need the added stress of those who would critique--those who think they know, but who often do not have the vaguest idea.

Instead of critiquing, how about asking the parent, "What can I do to help?"

Moreover, if what is needed can't be done, at least, think about the restrictions and complexities in the family's life. Ask yourself, if it were you, just how much of a 24 hour a day task could you accomplish in a 12 hour day? Then think about it in terms of years.

Please don't stand in judgement! We parents are hard enough on ourselves. Moreover, we are painfully aware of our limitations--knowing what we want to do and what we are able to do are miles apart.

      Offer Help Not Opinions

Instead of offering advice or opinions to a individual with disabilities or their family, ask yourself if you are willing to take over for a period of two weeks (a speck in the lifetime of care faced by parents) the total responsibility for the individual with disabilities-personal care, meal preparation transportation, recreation society's rejection, the pity, the exclusion.

There are those who do not give much thought to what is involved, but who seem to think they know exactly what is needed.

Their solutions are frequently based on faulty assumptions. There is little realization that many opportunities enjoyed by the masses simply do not exist for the individual with disabilities and/or their families. They overlook the fact that these families also have the same daily responsibilities faced by "normal" families and they fail to see that what is very limited is time and energy.

Next time you want to give your unsolicited opinion, offer instead to take over for two weeks the total responsibility for the family. It could provide the means for the parents to get away for a vacation---probably the first in over a decade.

Considering that a decade is 520 week, 2 weeks equals 2/250 of 10 years, a mere speck in a 10 year time span.

Are you willing?

      Exploitation versus Caring

There are people who help because they truly care about others.

There are also people who give the appearance of caring but who are actually exploiting others to make themselves look good.

None of us like to be used for the glory of others.

Individuals with disabilities are particularly vulnerable to exploitation.

Sometimes it happens unintentionally; sometimes it's deliberate.

Often one does not see it coming. Maybe it's because we do not like to think others would exploit people who already have to deal with enough.

Yet, when exploitation occurs, it's generally done by those who do very little-and the reason for doing it is to enhance their own appearance rather than to be of help to individuals with disabilities.

      To Those Who Cover Their Butts

You may not know it
    but we do see through you.

We see that you believe

    we are not very bright.

But you are mistaken.

We do see

    That what you are doing
      is done mostly for your benefit.

Your belief is in appearances-yours.

    It is the big motivator,
      but it shows.

Don't expect me to thank you

    or tell you how wonderful you are.

What I see is exploitation.

    What I feel, I will not tell you.

      The Way It Is

For years, one keeps trying to believe that it will all come out OK. That raising a child with a disability in a "normal" world is doable.

One needs to think that way in order to do what is necessary to help the individual with a disability to progress. One needs to do it for oneself in order to survive.

Living in a world that moves at a different pace and under different circumstances is a monumental task. It is a lonely and isolated task with few experiences to draw on-and very little understanding and support.

One encounters people who will blithely say, "Everyone has problems." They seem completely oblivious to the fact that families with a member with a disability are not spared other problems. The specific problems surrounding raising a child with a disability are in addition - not instead.

Few people seem to have the ability to grasp this. Thank goodness for those who do-without them life would be impossible.

      Remember, You Are Not The Problem; It Is Not Your Fault

It happens in subtle ways. Sometimes it happens in not so subtle ways. It, being the feeling that one is a problem, one that others would rather not have to deal with.

Sometimes it occurs in your child with a disability being excluded from a special event such as a wedding while other children in the relationship are included.

Sometimes one hears after the fact about more casual family get-togethers where your family was the only family not invited.

What can you do to ease the pain?

One of my favorites came from a parent who said her way of handling it was to say to herself, "OK, Katy, you have 10 minutes to have a good cry-and then it's time to get back to living."

I particularly like the words in Max Ehrman's, "Desiderata":

"Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars, you have a right to be here."

And for those who cannot recognize your right to be here, it really is their problem, not yours.

      Gifts Along the Way

If you are lucky, you will find along the way people who care and who make a tremendous difference.

You can have many relatives, but only a few, will come forward to be a true friend.

You will find yourself giving thanks every day for this gift of friendship, help and support.

You will draw strength to do, what often seems impossible, as a result of that friendship.

You will feel a strong sense of responsibility to pass on to others the kindnesses you have received.

You will learn earlier in life just what is important and what is not.

You will wish you could have done a better job; you will learn to forgive yourself for not having been able to do it all, knowing that having done one's best is all anyone can do.

You will cherish your good fortune having been enriched by those you would not ever have come to know had your life been different.

You will learn to be aware each day of the beauty around you whether it is nature, kindness or one of those special unexpected moments.

You will learn to be able to laugh at yourself and at what goes on around you--learning that laughter will reduce stress and help put aside those things about which you cannot do anything.

You will learn not to let anyone take away your joy.

      Citizens with Disabilies Working for Change

Why?

Why are seniors referred to as senior "citizens," and individuals with disabilities hardly ever referred to as disabled citizens?

Accessing the library, obtaining van transportation, using a printer, putting money in one's parking meter may be difficult. Individuals with disabilities should look upon themselves as citizens with the right to information as anyone else. I am sure there was a reason seniors coined the term senior citizens for political recognition and protection under the law. People with disabilities should refer to themselves as disabled citizens to emphasize their rights.

Over the past 50 years people with disabilities have advocated for change. When we reflect back on the legislation for parking permits for people with disabilities and the effort for curb cuts, for side-walks at intersections, we can learn from these endeavors. These changes that have made our environment more accessible to people with disabilities have benefited other groups in society, such as the elderly, those with ill health, kids on bikes, mothers with children in strollers and made our world more accessible for all.

Products have been created for citizens with disabilities to better their lives that other citizens are now able to find advantageous, such as the reacher, which has a long handle and locking handgrip to help you hold what you pick up. This device helps the frail or people with back problems.

People with disabilities and their parents, caregivers and others interested in their issues did not realize at the time that they would be able to accomplish the task of changes. In fact they found the task daunting and thought that probably they would not be able to achieve what they set out to do Not only did they think they would not be able to achieve it, but that it would be impossible.

For all of those of you who have had a vision for change and believe the task is impossible, we encourage you to work toward these changes knowing that you will make the world more accessible for all.

Your plight is not for nothing!

      Finding a Common Voice - A Conversation with a Mother of an Adult Child with a Disability

Parent: I think one of the big things that people aren't aware of, is the fact that a family with a child with a disability has little communication with other families. Many families have no information to help them get where they need to be.

NHU: Because nobody wants to talk about it.

Parent: That's part of it, but I think it is just that they simply do not know. I mean, how are you going to know where to find the next family? You have nobody that you can discuss this with, and ask them 'how did you do this?' or 'how did you do that?'

The standard things don't work the way you teach children to tie their shoes or the way you teach them to find their way to school. None of these things work. So you have a unique situation and each individual family has to find their own adaptation. If these things could be shared, if ideas could be replicated by other families, life would be made a lot easier.

But we don't know where other families are until you get into a school situation, when you have orthopedic schools and there were people being taken by bus. You still just don't have the neighborhood family that is in the same situation. That's where isolation begins, number one. But that's also what limits the child's opportunities for social development.

NHU: Yes, it's multifaceted; it's social development, it's understanding, it's a system, it's knowing you're not alone in the world with the situation, it's not having a common voice because you're so isolated. Without a common voice among families, one issue can immediately branch out into many, many issues. You turn over one stone and there are ten more stones to turn over. And turn over one of those ten and there are ten more. And it keeps going on and on and on.

Parent: And that's a magnification of each family's situation. They find that they're restricted in their time and energy, all the while trying to be fair to their other children and trying to survive in a world that's so unreal without even taking into consideration the great concern and the effect on that child in the years to come.

Trying to put it all together sometimes is overwhelming and I think for a family to be able to draw from a website other people's situations you think, "Well, I guess I'm doing okay, I'm not the only one in this situation."

NHU: It's trying to find someone that understands and has lived your situation.

Parent: Yes, many families have relatives that don't understand. Though sometimes they have relatives that do understand and they're so lucky, but that's the way the world is. And there are also families that will help and families that won't. There are husbands who have left wives because they could not tolerate or could not cope with the situation. It was beyond them. There are many, many things that never reach the surface because people don't want to read about a negative thing.

NHU: So how do you get out to the families that need to do something really constructive?

Parent: That's what a website could do, enable people to go to that website and say, "I really need to find a solution. I wonder what other people have done about this particular situation and what's out there." You no longer have to really reinvent the wheel. That's the way I see it. Each child with a disability is so different. You can have children in the same family and each one is so different. One will maybe have a problem with speech; one will maybe have a problem with involuntary movement. So even what one child can do, you can't learn the lessons from that one, there's just not enough broad resources to draw on.

    ----------A Conversation with a Mother of an Adult Child with a Disability , (© June 30, 2022) New Horizons Un-Limited

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