Like many parents, I am blessed to have healthy children. I take it for granted that my kids are smart, active, well-adjusted. I don’t even have to think about their health other than the occasional cold or earache or sprained ankle. Others are not so fortunate.
This past weekend I was reading in Maryland Family Magazine an article about a local college professor who wrote a book about raising a son with severe autism. After writing the book, he assumed that a major publisher would have interest. He ended up being turned down by some agents who told him that without a happy ending or a cure, there was no way they could market the story. Apparently, the public wants stories about disability to have a Hollywood ending. (A publisher finally did come along that agreed to publish the book).
This, in turn, made me think of a good friend of mine (I’ll call her Jane), who has a disabled son (autism spectrum) in addition to three normal children. I hesitate to use the words normal and disabled for two reasons: 1) we live in a politically correct world where deciding what label to apply to anything means stepping into a social minefield; and 2) on the spectrum of mental or physical ability, it can be difficult to say what exactly is normal versus abnormal. I never want to suggest that children with limitations are abnormal. Some parents even bristle at the term “disabled.” Others use the more cumbersome term “neurotypical” rather than the term “normal.” You can see that it can be hard to discuss the topic of disability when we don’t even have terms we can all agree on.
Jane and I often discuss our kids and parenting. She has been very candid with me in describing how incredibly hard it is to raise a disabled child. She believes that no one really wants to hear the negative side of raising a child with special needs. Like the publishing agents that the professor encountered, some people only want to hear about the inspirational side of the story. Truth is, there is not always a happy ending or miracle cure when raising a disabled child, be it autism or cerebral palsy or paraplegia. These are life-long disabilities. There are happy moments, of course, as well as accomplishments both major and minor, but for parents raising a disabled child, it is a daily struggle to make sure that the child gets the medical care and therapy and attention that he or she needs. Parents undertake this monumental and thankless task not because they hope for some Hollywood ending, but because they love their child and they do what they need to do, even if they never knew they had such strength and determination in them.
It’s not all negative, of course. Jane tells me all the time how much she loves her son and how he has taught her so much about herself and about life. She says she cannot imagine who she would be without her son. At the same time, however, she also feels a lot of pain and loss and regret about what she and her family have had to sacrifice in order to care for her disabled son. The daily struggle can truly be overwhelming at times. Jane believes that parents often feel unable to express these feelings for fear of being branded a less-than-stellar parent. As she told me, “There isn’t a safe place to express one’s own doubts about being able to effectively take care of another person who requires so much care. It’s daunting, hard and stressful and for some reason it’s not completely OK to admit that.” Jane is careful about the sentiments she expresses in public versus those she tells to her friends:
There is the aspect of autism that you are allowed to talk about versus not allowed. I’m allowed to admit it’s hard, but I can’t really say how hard or I’m too negative. I’m just supposed to say it has changed my perspective and I’m blessed. It has changed my perspective but I’m not blessed. Shut up about being blessed.
While disabilities are all different and every parent’s story is unique, there is a common thread that runs through them all – raising a disabled child takes its toll on the parents and the family as well as the child. The challenges can be enormous. Some of the more common challenges include:
- Financial: Finding ways to afford medical care, therapy, services; working with insurance companies and various state agencies;
- Educational: Struggling with teachers and school administrators to make sure that your child is getting an appropriate education and Individualized Education Program or IEP.
- Medical: Finding doctors who are willing to take the time to listen to your concerns and diagnose your child; getting referrals to specialists; sorting through the myriad hoops of insurance; finding therapies that work for your child;
- Social: The loss of normal everyday activities like going out to dinner, taking trips, seeing friends; not having anywhere to turn to talk about what they are going through.
- Marital: A couple often experiences difficulty because of all the other stresses that are created by having a disabled child, as well as the substantial time investment that is required.
- Family: Other children in the family can be affected because mom and dad have to devote so much time to the disabled child and because the family’s usual routine and activities are disrupted; money can often be tight.
- Psychological: Many mothers experience feelings of guilt, wondering if it was something they did during pregnancy that caused their child to have this disability.
- Legal: Figuring out what rights you and your disabled child have, what services you are entitled to.
I can’t say enough about those parents who take on these challenges on a daily basis. It is difficult to even imagine the level of devotion and commitment that is required. I welcome all parents to share their stories — the good and the bad — so that the rest of us can try to better understand the reality of raising a disabled child. In future blogs I will talk about some of these challenges in more detail and where parents can turn for assistance.
Image from metroparent.com