Recently I overheard a social worker make this comment about a young mother of a child.
“She is in such denial! She doesn’t have a clue about what’s going on! She needs to get real and begin dealing with what’s really going on.”
Who she was talking about was a 22-year-old mother of a 2-year-old son with Prader-Willi syndrome, a genetic and chronic disorder that requires a great deal of parental care in the early years.
There’s no medication that will reverse the disorder and most people with Prader-Willi syndrome need lots of family support for a long time.
The social worker, who was so critical of this young mother, should have known better. And she should have displayed more compassion and empathy.
Perhaps if she had a disabled or impaired child herself, she would be much better equipped to walk in someone else’s shoes and be more sympathetic to what it must be like raising a child with a challenging disability.
Perhaps most of us parents who have been fortunate enough to have healthy and sound children have little ability to truly understand what it’s like to have a child with special needs. It’s certainly true that most of us come to parenting with a naive obliviousness to the risks and the perils of having children.
Very likely, most people think about the joy that parenthood will bring without really thinking much about the sorrows that can accompany giving birth and raising kids.
When a baby is born with special needs, in most instances, it comes as a shock to the parents. If the diagnosis is of a chronic or lifelong disorder or condition — such as Prader-Willi syndrome, Down syndrome, or cerebral palsy — raising that child will be a continuing story, sometimes with no happy ending.
Parents typically react with shock, first, and then a variety of emotions as time goes on. Those other emotions can include denial, anger, disbelief and depression. But often parents have to face the many challenges of raising a special needs child without the kinds of support they need.
And it is often the case that few others understand what the parent of a special needs child goes through in terms of trying to cope with a child that needs more than the usual amount of care and handling and may never deliver the kinds of joy that parents usually anticipate during pregnancy.
For example, Jeannine, the mother of a 3-year-old diagnosed with autism, constantly questions what she could have done differently during pregnancy so that there might have been a different outcome. She constantly asks herself: Did I do something wrong? Should I have taken better care of myself during pregnancy? Was there something I should have done differently to have protected my son from autism?
And, Ted, the father of a 4-year-old daughter with Down syndrome, goes from expert to expert looking for answers about what will help his daughter have a “normal” life. Maybe there’s a new medication that will help her. Is there a speech therapist who can teach her to have speech and language like other children her age?
For many parents of special needs children, there is a constant questioning and continual self-blame. Also, getting the most appropriate and the best services for a special needs child is uppermost on the mind of many parents. Is there another school district that will provide a better education for my child? Will another hospital in another state have answers that I’m looking for?
Underneath all of this is not only anxiety and worry but a feeling of being overwhelmed. It’s easy to be overwhelmed if you’re the parent of a special needs child. There are medical expenses, sometimes including expensive medications, educational programs, daycare, and the emotional strain of what turns out for some parents to be a 24-hour-a day job.
Are some parents of special needs kids in denial? You bet. Are they overly optimistic about a possible miracle? No doubt. Are they sometimes unrealistic about the future? Yes, indeed.
But they are also parents who deserve special support and empathy. Many of the rest of us, I believe, couldn’t function half as well as some parents of special needs children that I’ve known. It takes a very special mom or dad to be the parent of a child with extraordinary needs.
Disclaimer: The Autism Resource Foundation (ARF) provides general information to the special needs community. ARF strives to provide multiple points of views on a variety of topics so families to make the best-informed decisions without bias. The information provided comes from a variety of sources, and ARF does not independently verify any of it, nor does it necessarily reflect the views and/or opinions of ARF. Nothing on this website should be construed as medical advice. ARF strongly recommends that you always consult your doctor regarding the unique needs of your family.