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"Parents Are People First (And Other Odd Thoughts)"
An Essay by Phyllis Muniz, M.S. CCC/SLP (and Parent)
The following is an essay by Phyllis Muniz about her journey parenting a child
with a developmental disability.
If you would like to go to directly to specific topics Ms. Muniz covers in her essay, please click on the following links:
“The danger lies in our very human desire to simplify by generalization. If they can be grouped, it becomes easier to analyze them, accuse them and often even abuse them without having to deal with each as a separate entity. One often hears many professionals, who should know better, sigh, ‘Parents are always the cause of all their kids’ problems,’ forgetting that they themselves are parents. They may be unaware that just a few miles away there could be another professional sighing the same lament about their children!”
Leo Buscaglia (1983)
I am a person who became the parent of a daughter with PDD (Pervasive Developmental Disability) thirty years ago. I was a professional even before that. I earned a bachelor’s degree in 1967 and a master’s degree in 1970 in speech-language pathology. Ironically enough, my master’s thesis was on group counseling with parents of children with disabilities. The experimental group of parents received group sessions to teach them to utilize behavior modification techniques as a parenting skill. The control group did not receive this information. The conclusion of my eight-month long study was that learning behavior modification did not significantly alter the perceptions of the parents of themselves or of their children or of their own ability to raise such children. To my amazement (not to mention that of the professors on my thesis committee!) what did significantly contribute to increasing positive feelings about themselves, their children, and the parents’ ability to cope was simply the group experience – the sharing of their stories, being heard, understood and accepted and finding out that they were not alone—that others experienced similar pain and fears. Little did I know back then, how important this insight was to become three years later in 1973 when my daughter was born.
Despite my academic knowledge
and my few years of experience, nothing prepared me for becoming the parent
of a child with a disability. Time and time again over these past thirty years
I have felt alone, frustrated, a failure. Time and time again did we, (my
daughter, her older brother, my husband and myself) experience rejection,
criticism and blame, or pity from friends, neighbors, acquaintances and even
from our own families. The most eloquent criticism and blame came from the
professionals in our lives, the doctors and nurses, the teachers, the school
administrators. There was no counseling available. Special education teachers
stated adamantly that they were not counselors. Psychologists stated equally
adamantly that they knew nothing about people with disabilities and the very
fact of a cognitive disability precluded their ability to counsel my daughter
and they certainly weren’t going to take on a Mom like me who just needed
to accept the hand life dealt her. Time and time again it was necessary to
fight for my daughter’s rights and for the rights of others like her.
Thankfully, those battles fought by parents in the late 1960’s and on
to this time, have resulted in the right of our children to attend a public
school to receive an education as well as the creation of programs for adults
with disabilities and many other things.
When my daughter,
A., was in her pre-school years, I was desperate for some kind of program
where she could be with other children. She adored being around other children.
Regular play groups and pre-schools, even parent participation pre-schools,
would not accept us. The few that gave us a chance to try, soon asked us to
leave, saying it was too difficult for them and they were afraid that she
would be a bad influence, causing their own children to regress or be fearful
that they could become like her. We finally found a special pre-school for
children with disabilities in Rancho Cordova, CA. She was there for one wonderful
year. Then the passage of Proposition 13 in California struck its first blow
with the closure of the preschool and a woman’s abuse shelter in Sacramento.
As a result, I became more active and joined forces with a parent group who forced the San Juan School District to allow our kids to have a separate classroom on a regular grade school campus. PL 94-142 (Public Law) had been passed which mandated that children with disabilities had to be allowed an education and that lack of funds was no excuse for a district not to provide for them. School districts, at that time, solved the problem by providing separate schools for such children. It was felt that “normal” children should not be jeopardized by exposure to “retards”. After all, “those people” were different, scary, disgusting. It was quite a victory to win the right to have a separate classroom on a regular school campus. The next battle was for partial inclusion – we begged for our children to be allowed to participate in art, music, P.E. and to enter the cafeteria and have lunch with the “normal” children. We joined Special Olympics and with the help of a truly wonderful special education teacher, Mr. Brown, provided even a camp-out and a llama pack trip for our children. (Bold, indeed!) One of our great sorrows during these grade school years occurred when A. and I were asked to leave a Brownie troop that she greatly enjoyed. The new troop leader refused to have A., even with my being an assistant leader, because she was too much trouble and it offended some of the other girls and their mothers to have us there. All lives have ups and downs, I know. It just seemed sometimes that our “downs” were pretty deep and the “ups” were far and few between. The result, though, was that I became incredibly grateful for the good times, the chances, a little acceptance, and the small victories.
When A. reached junior high age, our little band of parent warriors met defeat. Our children were not to be allowed to be on a junior high campus. It was considered to be too dangerous for them, too upsetting to the “normals” and far too much trouble for the teachers and administrators to deal with. A. and her classmates attended the “special school” in the district. Meanwhile, we parents redirected our energies toward fighting for special classes to be allowed into some of the district high schools. We won!
Just because you win a legal right, however, it doesn’t follow that everyone accepts it. In high school, the special education class was allowed to use the gymnasium. They just had to use it at the same time as the “continuation” students who had learning and emotional issues of their own. These students had been expelled from school for disruptive or delinquent behaviors and were now in a special class of their own. One day, A. came home with red stains on her chest, buttocks, and crotch area. I questioned her, trying to display interest rather than fear, and discovered that the boys in the gym had thrown pomegranates at her and had also grabbed her and physically smashed the pomegranates into the areas mentioned. Other than some bruising, she was not seriously hurt. Thank God! There had been no physical rape but there certainly had been a sexual assault with a mental and emotional rape.
When I called the school to tell them what had happened, at first I was not believed. When other kids who had witnessed the event, came forward, the principal had the coach call me. There had been no supervision in the gym at the time. The coach was busy back in the locker room with some of his “football guys”. No other teacher was present. The coach did call me, but not to offer sympathy or express concern. He called to berate me for being so stupid as to force my daughter on him and other teachers and “regular” kids. He told me that my daughter and people like her did not belong in society and certainly not at a “regular” school because they were not safe and caused too much trouble for the school system and cost too much money which took away from people who could benefit from an education. He said the attack was my fault for putting my daughter in that situation, for sending her to the high school rather than keeping her in a special school or an institution where she belonged. This man would have put a thousand Archie Bunkers to shame. Even when you know the other person is insane, these experiences shake you to the core and cause you to question whether or not you are truly doing the best thing for your child.
I’m sure that at times on this journey, I must have seemed “conflicted” to the teachers and other professionals whom I encountered. My burning desire to obtain equal rights for my daughter to participate in life to the fullest of her capacity sometimes warred with my fear for her and my need to protect her. It still does. Most of the parents I know don’t need statistics to tell them that their child is at risk, they have their own experiences. More than 90% of people with cognitive disabilities will be assaulted and abused, sexually or otherwise.
Pearl S. Buck, in her book The Child Who Never Grew, talks about her own personal conflicts. In the opening of her book, she tells of the many letters she received asking for her help. She says:
“They write to ask me what to do. When I answer I can only tell them what I have done. They ask two things of me: first, what they shall do for their children; and, second, how shall they bear the sorrow of such a child?
The first question I can answer, but the second is difficult indeed, for endurance of inescapable sorrow is something which has to be learned alone. And only to endure is not enough. Endurance can be a harsh and bitter root in one’s life, bearing poisonous and gloomy fruit, destroying other lives. Endurance is only the beginning. There must be acceptance and the knowledge that sorrow fully accepted brings its own gifts. For there is an alchemy in sorrow. It can be translated into wisdom, which, if it does not bring joy, can yet bring happiness.”
A., right now is happy in a work activity center with friends of her own and enormous pride in the small paycheck she earns. I am blessed to be able to work as a program manager for individuals with autism, other cognitive-behavioral disorders and with individuals with developmental disabilities who have lived long enough to become senior citizens. It’s an incredible thing to work where I am not only allowed but am actually hired to continue my work of advocacy for and service to individuals with developmental disabilities and to share what I have learned in ways that can make a positive difference. While I have learned from so many people during these last thirty years and continue to learn, my greatest teacher has been and remains my daughter. She has taught me patience and unconditional love. Because of her, I continue to work to support the highest level of independence and quality of life possible for persons with disabilities.
If you are a professional, I hope I have shared with you a little history so that you may perhaps better understand some of those parents you have to deal with. If you are a parent, I share my story so that you may know that you are not alone and that even if we’re not done yet, “We’ve come a long way, Baby” in the last thirty years.
The traditional deficit model of family life emphasizes the caregiving burdens that children with disabilities place on their families and the dysfunction that families experience as they strain to support the child within the family system.
A more positive view is emerging which describes the positive contributions that persons with disabilities can make to their families. Parents who have written about their experiences view their child first and foremost as a son or a daughter. However, they also acknowledge caregiving challenges. As one mother wrote, “Jeff is neither my burden or my chastisement, although his care requires more than I want to give at times. He is not an angel sent for my personal growth….He is a son!” (Pieper, 1977, p.88) (top of page)
Problem behaviors are not unique to children with developmental disabilities. The difference is that for children with developmental disabilities, the problem behaviors that begin in early childhood do not diminish naturally with age. Problem behaviors do diminish a person’s quality of life. The problem behaviors equally diminish a family’s quality of life. We are evolving from thinking strictly in terms of the old behavior modification paradigm and into the birth of “Positive Behavior Support” concepts that embrace a true team approach that includes the parents as well as the rights of each individual to affect a symbiosis with their environment rather than having to be forced to fit the environment.
Family Diversity. Families vary in ethnic and cultural background, family composition, socioeconomic status, age, parenting experience and knowledge. The communities they live in also vary in quality of educational services, support resources, neighborhood safety and economic opportunity. Demographic changes such as an increase in dual-income families and single-parent families along with a decrease in support from extended family members also greatly affect a family’s ability to adapt successfully to a child with a disability. Remember Leo Buscaglia’s words in 1983. He warned us against generalizing about parents/families, putting them in a box and ascribing common attributes to them in order to simplify for ourselves rather than taking the time and making the effort to know them as individuals. (top of page)
Turf Battles. Professionals are often threatened if parents question their “expertise” and thus may see parents as hostile. Parents can see professionals as cold, uncaring, self-appointed experts whose mission it is to tell them AGAIN what’s wrong with their child (and thus, with them!) Both views are, unfortunately, often justified by experiences. Both sides feel they are “battle scarred”. The hope is that we can learn from the other as both parents and the professionals have valuable information to share and hopefully our common cause is to make a better life for that person for whom we are having a meeting.
Time. Professionals are concerned with getting their jobs done and are often overwhelmed with large caseloads and too much paperwork. They can feel resentful of parents who seem needy/demanding or “don’t get it!”. Parents also are weary and worn with how much of their lives have been consumed by the time their child reaches adult age. Siblings of individuals with disabilities often feel that they have been cheated as do spouses – that too much of the parents’ time (attention and love) have been focused on the one with the disability. Some parents have made advocacy for their own child their life.
Tension. Tension results from guilt and expectations. Professionals often feel guilty when they don’t have all the answers, especially when an individual is especially challenging to deal with. Parents often feel guilty for not having produced a “normal” (i.e., “perfect”) child as well as for not having enough time and energy to give to each other or to their non-disabled children. (God forbid you should be selfish enough to wish for some time for yourself!) Feelings of guilt can lead us to expect someone else to judge us the same way we judge ourselves as well as to judge the other side for “not doing enough” or for “doing it wrong”. Professionals can expect the parents to follow elaborate, time-consuming regimes at home. Parents can expect the professionals to work miracles at school or at program. Both sides can expect the other to “fix it!” But nothing and no one needs to be fixed. We are all here to support the abilities of the person, not to fix their disability! (top of page)
Wow! So WHAT exactly is that? ! Well, really then, WHY should we do that? ! Gosh, HOW in the world can we actually do it? ! Well, ….
WHAT: Collaboration is the establishment of a truly respectful, trusting, caring, and reciprocal relationship in which interventionists and family members believe in each other’s ability to make important contributions to the support process; share their knowledge and expertise; and mutually influence the selection of goals, the design of behavior support plans, and the quality of family-practitioner interactions. In the finest unfolding of this relationship, the traditional expert-client dichotomy is transformed into an equal partnership in which family members and practitioners offer complementary expertise, solve problems together, and acknowledge each other’s contributions to meaningful behavior and lifestyle outcomes. (Singh, 1995; Turnbull & Turnbull, 2001).
WHY:
HOW: Here is a beginning list of useful and practical ideas. (Feel free to add your own!) (If you are a parent reading this, change the word “parent” to “professional” in the list below. If you are a professional, read on!)
***The Big Rule of Communicating/Working with Parents**** (Ta Dah!)
Tell them about their child’s
Potentials rather than forever concentrating upon the imperfections!
(P.S. Remember your real mission is to find those potentials and together,
with the parents and the rest of the ID team, grow those potentials into realities.)
( P.P.S. Can’t
you just hear that Amen chorus?) (top of page)