Tips on raising a child who has limb differences
By Eileen Cronin, Ph.D. Clinical Psychologist and Author of Mermaid: A Memoir of Resilience
There is neither a right way nor a wrong way to raise any child. In this respect, children who have physical impairments are no different than their peers. Some need more nurturing and others shirk emotional support as well as physical support. Perhaps every child needs a moderate combination of emotional nurturing as well as the encouragement to take on new challenges, and those needs change as a child matures.
Like any other child, the only guidebook to parenting a child with a physical difference is the child. I say this as a parent, who happened to grow up without legs from about the knees down, and as a clinical psychologist, who has worked with a diverse population of children and their families. Finally, I offer to you what I've learned from my experience as an author of a candid memoir about growing up without legs in a large family in the Sixties:
Mermaid: A Memoir of Resilience, which was included among Oprah's Best Memoirs of 2014.
There were many times in my life that I was told I could not or should not do something. For example, my mother wouldn't let me take ballet lessons, even after the teacher said she would accommodate me. Finally my mother caved in, and I took two years of ballet, during which time I strengthened important muscles and increased my flexibility. Two years later I wanted nothing to do with ballet because it "was for sissies," and I wanted to play softball. That took more years of begging. Eventually, I played on a team with a very accommodating coach, who rearranged the outfield and got the league to allow some one else to run the bases for me. After two years of that, I quit because I was in high school and was more interested in dating. Softball was "for tomboys." In the end, the coach told me he was very sad to see me go. He said that coaching me was the most rewarding experience of his coaching years.
In the spirit of empowerment, I am providing a list of things you can do to help your child. We all need to know that we have the freedom to take an action.
1. DO remember that while your original dreams for your child may have been altered by a physical loss, the reality may be equally if not more rew
arding than your greatest wishes. It has been known to happen.
Who knows what may result from this challenge? I have seen in families who navigate crisis situations with open hearts and open minds many success stories. Here are just a few examples of the achievements that have been gained from the successful navigation of life with physical differences: creative genius has at times been sparked within an individual with a limb difference (consider the acting talents of Matt Fraser or the musical gifts of the opera star Thomas Quasthoff, both born with malformed limbs from Thalidomide); an abundance of resilience (consider Aimee Mullins, a model, athlete, and performer with missing legs, whose hilarious story can be found on the podcast on National Public Radio's "The Moth"); intellectual development that might surpass the expected level of achievement and might be amplified as a result of not having many physical outlets (consider Stephen Hawking); and ambition (Franklin Delano Roosevelt was the only U.S. President to serve four terms, and he was in a wheelchair). I know successful writers, publicists, artists, photographers, and university professors with physical differences. Some are walking, some are in wheelchairs, but the list of achievements is endless. What is most important is that if a family can open its heart to the reality of a difference, the result is a stronger family with deeper emotional ties.
2. Do allow your child to seek counseling at the appropriate time so that they may cope with the challenges of various developmental milestones.
Some children may need only to adjust to new situations and check in periodically over the years with a therapist, others may need more or they may need no therapy at all. It is crucial to let your child know that it takes courage to ask for help when one needs a bit of help. And to emphasize that everyone needs help at some point in their life, but not everyone has the courage to ask for help.
3. DO allow yourselves as parents to seek guidance for the emotional challenges that come with parenting any child, and particularly a child who has different needs.
Allow yourselves to take the time to grieve the loss of y our child's limbs because in doing so you are honoring a loss that your child will cope with throughout his or her life and you will be able to model the positive outcome of grief, which is ACCEPTANCE. It takes courage to break through the shock and denial of a loss, but if one is willing to allow oneself to feel the loss, then one is able to regroup and take on all the opportunities that come from acceptance, such as adaptation, adjustment, growth as an individual, and growth as a family. From there the sky is the limit. As mentioned previously, every crisis is an opportunity for growth.
4. DO allow your children who do not have a limb difference to grieve.
It is normal for siblings of children with a physical difference to feel anger, shame, guilt, and sadness over their sibling's differences. Of course, siblings are also proud of their sister or brother who uses an artificial limb or a wheelchair. Sometimes, society pushes the siblings of children with physical differences to feel embarrassed or ashamed. Encourage your child to speak openly and if needed to accept professional help. There are times when children who are ashamed of a sibling go on to become the champion of people who are treated poorly because of their differences. Help your child to become a leader in the community to affect changes in attitudes toward the physically different rather than one more bully for the injured child to take on.
5. Within reason, DO allow your child with a limb difference to set their own limits.
Parents make a mistake when they believe that their job is to protect their child from all emotional trauma. We cannot change reality but we can first understand and ACCEPT
reality, so that we can help our children, both physically different children AND their siblings, to accept what is a reality. It is helpful when parents allow a child who has a physical difference to explore his or her limits of physical endurance. No one, not even a physical therapist, will know for certain what your child can accomplish physically. They can build on strengths but it is up to your child to explore and to be creative. Parents can also help create new and innovative ways to accomplish physical tasks. An atmosphere conducive to exploration is hugely important. Of course, no child or parent should be forced to try dangerous feats, but no one will know what is possible unless smaller feats are attempted and then built upon.
6. Do encourage your child to be the person they want to be as they grow up.
No one gets through adolescence without some heartbreak. Children with limb differences are whole human beings who need to explore their dreams. If they want to be in a marriage or a committed relationship with a loving partner, this should be encouraged. As a survivor of Thalidomide, I know many people who have a physical
difference who married and/or fell in love and have enjoyed long-term romances. There are no restrictions on dating. People with physical differences might fall in love with someone who has normal limbs or not, but the point is that they too find their soul mates. There is no crystal ball to predict who that soul mate will be.
The same is true of professions. People with physical differences join a variety of professions and are often very successful as artists, business men and women, health care workers, live performers, teachers, professors, lawyers, and parents. The list stretches as far as the dreams. People born with physical differences are an ambitious lot. We have to be extremely disciplined in order to accomplish small tasks, please do not assume that we won't apply those principle to our lifelong goals.
7. Do be honest with your child about the cause of their limb difference at the right time so that they can plan their future accordingly.
Your child will one day need to know if their condition is genetic or was caused by a drug or some other outside influence. They will want to take this into account for planning a future family of their own. They have the right to that knowledge and it is important that you dignify them with the truth, at the appropriate age. This is also true, if the cause of a difference is subject to a lawsuit. Your child has the right to make an informed decision about filing suit. This is their body and it is their right.
In the end, the point is to empower yourselves and your child to be creative and to seek help or to find answers from outside sources if you run into an obstacle.