Nurses nurse
And teachers teach
And tailors mend
And preachers preach
And barbers trim
And chauffeurs haul
And parents get to do it all.

Babs Bell Hajdusiewicz

We all wear many hats. You may be a cousin, father, daughter, employee, employer, listener, etc. As this poem points out, parents do all kinds of things. When a child with “special needs” comes, everything is intensified. Not only are parents nursing small cuts, but changing gastronomy tubes, monitoring seizure meds, etc. The chauffeur duties become incredible – this therapy, that appointment, this meeting, etc.

This article will deal with the effects on the family of having a child with disabilities, then a little on siblings and it will end with some ideas on grieving.

The effects on the family of having a child with disabilities

We are all unique individuals. We all have different experiences, background, culture, etc. Every family is unique and the things we deal with are sometimes very hard. Every situation is different. It is important not to compare yourself to others. Don't judge yourself. We may all react differently to the same set of circumstances. Don't fall into the pit of comparing yourself to what someone else is doing and then feeling bad.

When a woman becomes pregnant, both parents dream, fantasize or develop expectations about their unborn child. However, if the child is born with disabilities, what's supposed to be the best day of your life turns out to be quite different. Everyone reacts to these events in different ways.

Obviously it is very overwhelming to have a child with special needs. There is a lot of new information to digest, lots of therapists to see. It helps to take notes at appointments. An even better approach is to come to the appointments with a written list of questions. See the section on making paperwork work for you for ideas on keeping track of things.

Marlyn Minkin has interviewed and surveyed lots of parents of children with deafblindness across the nation and compiled a list of common themes that parents face. She has given permission to include the list in this document. Every parent who sees this list relates to most of the items. There is a lot of nodding and agreeing going on. It helps to know that other parents are going through some of the same problems.

Excerpts from "Deafblind Children: Mental Health Concerns for Children and Families", presented at the 1997 National Conference on Deafblindness Marlyn Minkin , MA /ABS

Parents of deaf-blind children are first and foremost parents. They are as diverse in their backgrounds, beliefs, life styles or any other aspect of human nature as any group of people who happen to share a common experience. For many families who were leading relatively private or anonymous lives, the changes that occurred following the birth or the diagnosis of their deafblind child is enormous. Often, in urban areas, families report an average of 20 to 30 medical, educational and support people involved in their lives. They often live with professionals in and out of their homes and their lives. They must answer personal questions they have never been asked before. Each professional brings well intended advice, suggestions and "answers", some of which are unsolicited.

All of the life issues already present in each of our lives are quickly intensified for parents who have a deaf-blind child. The stresses brought about by the necessary changes in their lives are intensified and developmental stages of adult life often happen before they would normally occur. In other words, the stress is like living in a greenhouse under grow lights. Relationships that may have taken years to undergo changes are pushed quickly into challenges. All of these factors must be considered by and for parents of deaf-blind children. Hopefully, parents can be encouraged to be more kind and gentle to themselves by acknowledging this experience.

 Common Experiences Reported by Parents of Deafblind Children - The Recurring Themes

I. Personal Life - or more appropriately, What Personal Life?

Self Care Needs

Exhaustion
Overwhelming feelings - taking the time for them
Balancing time
Worries - financial, emotional
Fears
Burnout
Learning to say NO
Stress
Physical concerns
Personal life struggles unrelated to having a deaf-blind child
Belonging - Where do we belong?
Where do our children belong?

Support

Who to trust for honest and accurate information
Where to find support
Support Groups and/or retreats
Lack of support
Feeling alone
The Internet
Professionals
Family and Friends
Other parents of deaf-blind children

II. Respite and Child Care

How and where to find people and money
How to train
How to keep
"I feel like we don't have a marriage, we just work at the same day care"

III. Medical

Dealing with Medical Professionals

Dealing with difficult physicians and medical personnel
Dealing with physicians who do not understand beyond their own speciality
Search for physicians who know more than parents
Who to trust for accurate and honest information
Learning to say NO to intrusive medical procedures for the sake of someone's research and not of benefit to our children

Medical Insurance Difficulties

Feeling attached to a physician and needing to transfer because of medical benefits
Feeling stuck in jobs because of medical insurance and pre-existing conditions of children
Not being able to earn decent money for fear of losing government benefits.

Medical Concerns for Parents

Feeling the need to be medically knowledgeable, often needing to research and understand complicated medical procedures
Needing to make serious medical decisions
Feeling like the only ones who know and understand the whole child
Needing to be case managers-coordinating medical and educational appointments, medications and nursing care
Lack of medical information and resources
Dealing with parent's personal illnesses - who will care for deaf-blind child
More regression for deaf-blind children following illness

IV. Education

Finding appropriate educational programs
Convincing school districts of the value of necessary educational programs
Constantly needing to make educational decisions
Fighting educational battles
Using and learning the IEP and IFSP process
Need to learn an entirely new vocabulary
Need and desire to learn a new language (ASL)
Dealing with school districts that hire teaching assistants that do not sign or won't provide an FM system
Breaking in a new school district or a new school
Finding people to trust to provide accurate and honest information

V. Financial difficulties are numerous. Each family could write their own book on creative financing.

V I. Extended Family Members, Friends and Society

Need to constantly educate others about how to interact with deaf-blind child
Dealing with strangers comments and questions
Wills and guardianship
How to get Information to extended family and friends
How to get them involved
How to support extended family members feelings and still take care of own feelings
Dealing with people who say "stupid" things
" It's not my deaf-blind child that is driving me crazy, it's my 2 year old!"
Parents concern during pregnancy that they could not love a second child as much as they love their deaf-blind child
" Love for my deaf-blind child is a different love, with a different intensity, coming from a different place."

VI Siblings

Finding time and attention to give to siblings when deaf-blind children's physical, medical and communication needs are often overwhelming
Siblings needing to grieve
It is their loss of dream also
Worried that siblings will get lost in the shuffle
Feeling guilty about the amount of responsibility placed on particularly older children, but sometimes younger children
Concerns about how to talk about and understand deaf-blind child
How to help siblings talk to their friends and introduce their deaf-blind sibling
How to answer strangers questions and respond to their comments appropriately
It will never be fair!
Preparing for the future and keeping sibling informed

VII. Parents Concerns for Deaf-blind Children

Independence
Learning Self Help Skills
Discipline
Considered cute in preschool, what will happen during adolescence
" Can't send him next door to play"
Self abuse - how to deal with it, what does it mean?
Having a bad year with a teacher is an emotional drain for the whole family
Safety
Friends and social life opening up after the acquisition of sign language
How much is deaf-blindness, how much is adolescence?
Isolation
Social life
Masturbation
Anger - how to deal
Communication
Mobility
Dealing with transitions
Sexuality - how to teach about it. what to do about it. raging hormones,
Concerns regarding alternative housing after high school

Is it all doom and gloom? - What Does Work?

Humor ! Humor and Humor! Parent groups are often full of laughter as well as sadness. This seems to be symbolic of the lives of families with deaf-blind children.
Making full use of respite workers and time
" Just being ME sometimes!"
Knowing it is a process
Making sure our children are safe, then going on with our lives as a family
Writing
Walking
Gardening
Music
Lavender and Sage Oil Bath
Massage
....... to name a few. This list is endless.

Marlyn Minkin, 1997

Sibling Issues

  One of the areas Marlyn talked about are sibling issues. We could devote an entire section to sibling issues. Siblings face things like, “Will I have a child like this”?, “Will I get it?”, “Will I have to take care of my sibling?”, “Will anyone like me because of sibling?”, etc. Here are some quotes from siblings taken from the book, “Views from our shoes” by Don Meyer:

Sometimes I get annoyed with people because they don't know what it's like having a sister like Jeannie. I'm also Jeannie's “translator”. . Amy – 14

I think brothers and sisters need to be noticed more. We are special too. Allison – 12

Here are some of the “good parts” about having siblings with special needs: they make me laugh and I can boss them around! Stephanie – 11

I grew up thinking I should never complain, never do anything bad, never cause my parents a minutes's worry because they had so much to concern them as it was. Mary – adult

There are several handouts in this section on dealing with siblings. Sometimes we forget that the siblings have difficult times too and need help coping. It is the sibling who will be around the child with disabilities for the longest period of time.

Grieving

One of the things that happen to families who have a child with a disability is grieving. It comes in different ways and looks differently for each family. We usually think of grieving as associated with a death, but any kind of loss can cause grieving. One mother said, “I planned for my child. I loved him with all my heart even before he was born. I dreamed of baseball games, birthday party invitations, school days, family vacations, college, and, of course, all the things he could be when he grew up. Then one day the specialists told me that my child was not so perfect. And my dreams died.”

Gwen Whiting gave this definition of grieving:

The spontaneous, natural, necessary feeling-based process that moves one to separate from a lost dream, fantasy, illusion, or projection into the future, impels a search for meaning in the light of loss, and then guides one to more authentic being expressed through new attachments that are more congruent with one's evolved, natural self.

Let's break that definition down into parts. It is spontaneous. It happens whether we want it to or not. And it keeps happening when you least expect it. It is a normal, natural process. It is feeling-based. Logic won't work when dealing with feelings. It moves us – we come to accept, understand or cope with our feelings. It causes us to search for new meaning. We all have values and beliefs and when something happens that doesn't fit with those beliefs, we have to find a way to ‘search for meaning'. When our values and beliefs fit with what is happening to us we reach the point of being ‘more congruent with one's evolved, natural self.'

There are several feeling states involved in grieving and several ways to classify them. They are states not steps or stages that go in order. Some people just barely feel one of them and then are stuck for a while in another. Professionals used to think it was bad to be in the feeling states and tried to get people through them in a hurry. Now, they have discovered that understanding these feeling states is the solution to getting through the situation, not the problem.

Shock is a feeling of disbelief and confusion. It is a time of questions and concerns with few concrete answers. It may be influenced by how prepared someone was.

Denial buys time to discover the internal strengths, and to assemble the external supports needed to face the facts, conclusions, implications and feelings associated with the loss. It is a coping mechanism, a shutting down. There are several ways that we deny, such as denying the child has a disability or denying that the disability will change the family's lifestyle.

Anger is expressed in many ways, some of them are very subtle. It allows us to examine justice and fairness. It evolves out of lack of control, guilt or feeling of incompetence. Allow its expression, acknowledge it just like all the feelings.

Anxiety mobilizes us, making us search. There is a strong need to care for the child while needing to run away from tremendous responsibility. We set new priorities at this time.

Guilt! We are good at putting this one on ourselves. It helps us redefine limits of our own accountability. According to Ken Moses, guilt does not yield to argument, cajoling, coercing or even irrefutable scientific evidence. To work through guilt, share your feelings with an empathic listener. Let go of the guilt!

Depression encourages us to examine ourselves. There is a personal struggle to develop and accept new values and standards. Things are not in ‘congruence'.

Fear helps us to examine courage in us.

Sorrow can range from mild blues to severe depression.

Adaptation, acceptance, coping, or managing in a realistic manner is what we are trying to achieve through this process. We find new ways of coping with the changes and challenges.

Remember that grieving is a process. It is ever changing and never ends! Seek professional help if necessary. Grieving will hit you when you least expect it. When ‘typically developing' children reach a milestone, it reminds you that your child may not reach that milestone or that it may take a lot longer that you realize. Then the grief hits again. The mother who was quoted earlier about dreams that had died went through a hard time with all the emotions of grieving. She said:

Once I realized that these emotions were normal – and that other parents felt them, too – I was then able to accept and understand them. It took me longer to realize that the feelings would always be with me at some level. I thought I was over the grief. I felt I had moved on. Then one night as I sat with my son at a high school basketball game, the tears began to flow. My son will never play high school basketball, I thought. No matter that he might never have wanted to play, or that even without a disability his size might have kept him from playing. At that moment, I realized that some degree of grief would always be part of my life. I love my child for who he is, but I also understand that emotions, both good and bad, go with the territory. Now when difficult thoughts and emotions creep into my life, I work my way through them with as little guilt as possible. And my dreams for my son are not dead. They have just been altered. My son is allowed and encouraged to dream, too. I know my life with my son will be a roller coaster ride of emotions. But I am prepared and knowledgeable – strapped in and enjoying the ride. (From “You will Dream New Dreams” Inspiring Personal Stories by Parents of Children with Disabilities” by Stanley D. Klein, Ph.D.)

All families face many and varied issues. When families have children with disabilities everything is intensified. Families need support. Each family has to find what supports work best for them. Here are links to additional articles about family issues:

“Welcome to Holland ” – One mother's explanation of what it feels like to have a child with disabilities.

“Celebrating Holland ” – Another mother has written a sequel to ‘Welcome to Holland ' that has been making the rounds on the internet.

“Things I Have Learned” - Written by a mother of a deafblind child. She shares a lot of ideas that she discovered over the years.

“What makes Families Resilient?” - A good article describing the characteristics of families that are surviving and doing well.

“The Stress See-Saw and You” - From an online magazine for parents who have children with disabilities, called Special Child.

“Isolation, Depression, Fatigue – and Asking for Help” - Another article from the Special Child online magazine.

“Ten Commandments” For parents who have a child with a disability

“How to Stay Stressed” - A humorous article showing ways to stay stressed. Obviously if we don't do the things listed to stay stressed, we can reduce our stress.

“Where are the Parents?” - One parents' answer to why parents have little time to give to PTA and other issues.

“Children with Disabilities: Understanding Sibling Issues” - From NICHCY ( National Information Center for Children and Youth with Disabilities)

“Parenting a Child with Special Needs” - From NICHCY ( National Information Center for Children and Youth with Disabilities)

Special Sibling Issues of the California Deafblind Services newsletter
Fall 2002 --- Spring 1999 ---Summer 1996

Family Support Issues of the California Deafblind Services newsletter
Fall 2001 ---- Fall 1999

DISH stands for Deafblind Intervention Strategies for the Home,
click here for the intro and index page