Parents' Rights

By Jenifer Simpson of UCP


Being the parent of a child with disabilities is not really a whole lot different than being a parent of an average child, or so they tell me, but I really don't know because my only child has severe disabilities as a result of cerebral palsy. It is just that such a fuss can be made about it by your friends or family or the professionals around you. The biggest difference is probably that after you get through the first hoop of finding out about your child's disability, you will find the volume of work is bigger, louder and more compelling.


However, at the outset many professionals talk about parents going through something called 'the grieving process' when they first learn of their child's disability. According to this theory, parents first go through a stage of shock. This is followed by a sense of sorrow or grief where parents are thought to mourn for the loss of the "perfect" child that most parents hope for and expect. Then comes denial, according to this theory, where parents deny that their child is really disabled, or perhaps seek out other doctors to get second, third and fourth opinions. Anger and resentment come next, which may include going on searches for cures or fixes, and then finally comes acceptance.


This theory about stages of feelings -- shock, grief, denial, anger and acceptance -- will often be used by the professionals around you.


Doctors, therapists, teachers, early intervention specialists, case workers, disability advocates, lawyers, and a myriad of others who interact with you and your family may describe your feelings and sometimes your actions to you using this feelings model. Although, this grieving process is only a theory, it is widely believed, and you may in fact have all these feelings. But you also will find you don't fit this scenario and may feel you are being told how to feel and resent having certain beliefs or thoughts imposed upon you.


You have the right to whatever feelings you may have, and you may find that the course of your feelings is not like the linear model of this theory. For instance, I cycle through denial and anger periodically in new ways when I am confronted with a new aspect of my son's disability or when I must deal with a new set of therapeutic procedures for him. Occasionally there is something that sets off my 'grief', such as soapy television story or news event that evokes this feeling. Even though I am now ten years into 'accepting' my son's disability, I still have the right to go cry again.


The following is a discussion about feelings and thoughts that may assist you when it all gets a bit crazy.


Anger


Nothing in life really prepares anyone for being disabled and when it is your baby or child who is suddenly the recipient of this label, life may suddenly seem very unfair. You did not ask for this, and there is very little you can do to change it. Your sense of control over your life and the life of your child is at risk. Your relationships with other family members, especially your spouse if there is one, can be under great stress and it may be all you can do to hold yourself together. It is okay to be angry and to do your best to channel your anger into getting the best services you can for your child.


You may find your spiritual beliefs challenged and ask yourself "Why me, God?" or similar self-questioning. Others will be happy to tell you answers to this question, such as "God only picks special people for special children" or similar statements meant to reassure you. Often the truth is less clear-cut, and you have simply been caught unaware or random bad luck has just played a hand in your life. You have a right to your anger and frustration and you can acknowledge these feelings whenever you get to it.


Being Sensible


Everyone is told today that it makes good sense to seek a second opinion before having surgery or before investing money or before buying a used car. It should not be any different for you and your child with a disability, whether you are looking for a doctor who knows about cerebral palsy or a school that will accept your child or a church or synagogue congregation that welcomes you and your family.


If you hear of a new treatment or process that might help your child, you should look into it. You should not be rushed into a decision that can take a long time to make. Unless it is emergency surgery, for instance, you could take a year or so to make up your mind whether to subject your child to a new or another surgery.


It took me eighteen months once to get around to setting up a second opinion appointment for a surgical procedure. It can take a while to read everything you can get your hands on about a certain old or new procedure, for instance. You may find talking with other parents of children with disabilities very useful, but it is you who has to make the decisions and live with them. You deserve to take all the time you need to arrive at a resolution.


Keeping Things Private


In the same way that you may not want to share your anger with anyone and instead resolve things privately or through spiritual counsel, you may find other intrusions annoying. Many parents talk about the effects a child with a disability has on family members' privacy because suddenly new persons are brought into the family circle. A series of professionals who examine, give advice and sometimes even judge, or appear to be judgmental, about the actions of the individual family members may be impacting everyone.


One parent stated that the hardest part for her was "having to turn to experts -- it was difficult to have someone tell me what to do with my child," as if you don't know how to do it.


Some aspects of your life are simply no one else's business. If you do not want to discuss something or if you do not want your child's picture taken, it is your right to say "no" or "not right now" or "I'll think about this and get back to you" or "I'd prefer it if we did this another time." I have stated on several occasions that "I just can't handle this right now," and walked away.


Persistence as a Way of Life


Parenting is not easy, but most all parents try to do the best job they can or know how to do. It can be much harder when well-meaning people tell you that there are some goals they think your child will never be able to reach or that you must stand back and accept the fact that your daughter will never walk. A doctor may make a statement like "oh, he doesn't want to walk" or a family member or friend may tell you or imply you are wasting your time if you persist in a particular course of action.


There is nothing wrong with you if you are not willing to give up a certain attitude or course of action you want to take. Your child has an amazing potential for learning and no one knows what event or combination of events will make a difference in your child's life. Also, it is you that will live the consequences of any of your decisions, and not the well-meaning advisors who come and go in our lives.


Giving Up Is Okay as Well


Well-meaning friends and professionals have also told parents that they have not worked hard or long enough with their child with a disability. Statements such as "If you would just do this at home for 15 minutes a day on the weekends, it would make such a difference," or "if only you would take the time to train him to use the toilet/feed himself/manage his emotions/cut up his food every time/etc.".


The truth is that it could just as easily make no difference at all, and the instruction may in fact be getting in the way of your just plain enjoying your child. Also, when every activity becomes 'a therapy session,' a lot of pleasure can be lost that would otherwise be shared by you and our child. You are the one who lives with your child, and you are the one who is being asked to do just one more thing. If you cannot do something tonight, or every day, okay. That is your decision.


Sometimes advice givers simply don't understand the disability, or to what degree your child is disabled, or how their well-meaning suggestion sounds pretty stupid or crazy to you. For instance, a family member advised me to hang a track-and-lift system on my ceiling when I complained about the amount of lifting I had to do. While the idea had some merit, there was just no way I was going to undertake the hassle of such a design and installation, let alone how I was going to pay for it! Another parent told me about some of the flak she experienced when the placement for her child's disability 'was not inclusive enough'. "They don't understand how disabled he is," she said.


Often others do not understand how profoundly exhausted a parent may become or how few choices there are.


Setting Limits on Expectations


There are limits to what one person can do. You shouldn't expect yourself to think about your child all the time. And your child with a disability shouldn't expect to be the center of attention all the time or the center of your life all the time. It is often easy to have the child with a disabilities set the schedule and tone for all family life. You have limits and your child has limits; learn to recognize both and give yourself a chance to examine the situation before responding in anger or fatigue or with frustration. You are not SUPERPARENT.


I realized I had fallen into this trap once when I set a rule for myself to visit my son every day after work when he was in a children's rehabilitation unit after major surgery. I started to realize that I was demanding too much of myself, that it was all right for me to occasionally not visit him and I could work late or do something else. I understood that he, and I would, survive anyway.


Getting Annoyed With Your Child


There will be days when you like your child and days when you simply don't but that doesn't mean that you don't love this child or that you are experiencing a problem with the disability. Children with cerebral palsy are just as capable of being ornery as other children, and they should be disciplined as any other children. It is up to you as the parent to discern what is misbehavior and what is disability-related expression by your child. And sometimes you just may blow it!


Having Fun

You are not your child's therapist or teacher. You are Mommy or Daddy. Therapy and educational activities at home are certainly beneficial but you and your child need time to just fool around, tickle, giggle, tell stories and just hang out. These times are one of the most important parts of your child's "education" and the love and social skills learned by them will stand in good stead for the future as they will contribute greatly to the self-esteem of your child - and your own self-esteem as a parent.


I remember getting myself in a real emotional state over not finding an early intervention program for my son when he was three. Another parent kindly intervened and said "don't forget to enjoy him." This advice was very timely, and I let go for a while the frantic phone calls searching for 'a placement'. Having fun with your child with cerebral palsy can be a radical idea when you are surrounded by people telling you what to do or what should be happening next.


Being Unenthusiastic is Part of Life

No one expects you to be 'turned on' all the time to addressing the disability of your child. Sometimes you feel sad or you are worried about money or your other children, or you are sick. If other people take that as a sign that you're "not adjusting" or that you're "not accepting your child's disability," that is their problem. No one is excited about work every day. It can be tedious one day and new and interesting the next. The same is true of parenting. There will be days when your child thrills you with joy and days when parenting will seem like the most boring job on earth. You have the right to be "up" sometimes and "down" other days, and living with a child with cerebral palsy may emphasize this aspect of parenting.


Taking Time Off or Having a Life

As a parent you need time to yourself, with your spouse or partner and with other family members, and just time without kids around. Many parents describe the first time they went to the grocery store alone after their child was born as a tremendous feeling of freedom -- even though they were doing a chore, and even though they didn't talk to anyone but the checkout clerk. There are many parts of your life and each deserves as much attention and nurturing as does your special needs child. At one point I realized that I had no social life and, even though it meant spending money for a respite worker, the time taken to build friendships has probably helped me be a better parent to my child. And even if it has taken time and energy away from my child, I now have 'a life' and can talk about more than my son and his disability.


Being the Expert-In-Charge

You know your child better than anyone else as you have spent the most time and lived the longest with this child with a disability, longer than anyone else. You know what works and what doesn't; you have the big picture and history of your child and can utilize this in any situation. Support personnel come and go but you are the expert with the experience and first-hand knowledge of your child. In ten years of living with my son's disability, he has had six pediatricians and at least fifteen different physical therapists. One year we went through ten different personal care attendants!


In a fast-paced world, the parent of a child with a disability will be one of the constants in their life, and this responsibility often means protecting a child through assertive statements by the parent about how the child should be handled.


As the expert you have the right to be in charge of your child's educational, social and medical and other decisions, at least until your child can do this for him or herself. Professionals do not live the consequences of their decisions, so while you want their opinions, remember that they are only 'informed' opinions and not facts. They shouldn't tell you are wrong, that you will regret it, that you are selfish, or that you are not looking far enough ahead. Nor should they make you feel guilty or pressure you into a decision.


And it is not just experts who put this pressure on you; you may experience criticism from unexpected quarters, such as family members or visitors! A dinner guest once criticized me saying I should feed my son first, not me beforehand. I do this because I know how cranky I get when hungry and that I won't have the patience to feed my son. This rudeness reminded me that casual strangers often can misinterpret and misunderstand situations.


Parents are probably the single most important resource that a child with a disability has and often the child's only friend and advocate. This should be respected and if it isn't, it is time to find and surround oneself with supportive people, and professionals, who will respect this.


Keeping One's Dignity

You expect to be neither pitied nor admired but you do expect to be listened to and taken seriously. You expect the truth from doctors, teachers, social workers, and therapists who are there to help you. You deserve to know why the doctor is looking into your child's ear. If the doctor doesn't volunteer the reason, you can ask. From your friends and neighbors and from your family members who love you, you deserve a chance to be someone other than "the parent of the C.P.". You deserve to be talked to as an adult.


Sometimes when you are the parent of a child with a disability, you have to risk being aggressive, or more assertive, in order to obtain the dignity that is your right and your due. One surgeon once told me I "was a bad parent" if I didn't consent right away to a surgical recommendation he was making. You can be sure we never visited him again, and I found another with a better bedside manner!


Most of the suggestions and guidance that you receive from others should be taken for what they are: advice that you will ponder and which you may, or may not, act on. Even the most offensive-seeming suggestions are usually well-intentioned: it is just your call as to what to do with them.


None of these feelings apply just to parents of children with disabilities. All parents have certain common experiences, whether you have one child or ten, or whether your child with a disability is your first and only child, one of many children or the second disabled child in your family. You cannot forget that you are an adult with your own needs, desires, hopes and dreams. Over time you will change, just like all adults do and this will change the relationship you will have with your child. Enjoy your individuality and enjoy your child!


Jenifer Simpson is a former policy associate in the national office of UCP in Washington, DC, and the parent of a son, Joshua Chartienitz, who has cerebral palsy.


© United Cerebral Palsy