I just read an article about a young couple whose first child was born deaf and the article described in great detail the trauma and misery of having a child with a disability. The parents were devastated and went into a state of depression for many months after their child’s diagnosis. This was the end of their world.
This led me to think: I remember the beginning stages of shock and confusion, my emotions took that form for me more than misery or anger. I completely understand the anxiety of: will my child ever be ok? I had “professionals” tell me that my child would never speak and would never be able to go to a normal school. My son lost his hearing at three days old because of very high bilirubin and the doctor caring for him in the NICU did not think that he would survive. So, I think that I went through my fair share in the disastrous beginnings department.
But I don’t think having a child who has a hearing loss is a misery. Sure, I wish that my son heard normally without hearing aids or an FM system. I feel so sorry for him when a hearing aid battery dies in the middle of an important event and the replacement batteries are hard to reach. I would much prefer that everything would be easy and simple for him – which hearing will never be. But I think that as a parent – it is not the end of the world.
Here is why:
- You never take good health for granted. You never take for granted that a person’s body and organs work properly. When my next child was born, I had such a deep appreciation for the fact that she had 10 fingers and 10 toes and she woke up when there was a loud noise! When my third child was born in the end of 2001, there was a newborn hearing screening program in the hospital. When the technician asked to wheel the baby to the testing room down the hall I asked if I could come along to watch. She said “ok, sure” but was curious why I cared so much, it seemed the other parents were not overly concerned about the test or the outcome. But what a gift it is – to be aware of all the blessings that I have been given, to realize my good fortune and appreciate it every day.
- You realize that there are no promises. Those devastated parents were sure that their lives would be perfect and their child would be perfect and her hearing loss destroyed their plans. But who promised them perfect? I explain to my children all the time and truly believe that there is no such thing as perfect. Everyone is given strengths and weaknesses. It is the job of each person to maximize their strengths and figure out how to cope with their weaknesses or challenges and learn to manage the best they can with whatever they have. Every person must do this and imagining perfect just distracts people from the hard work that they have to do to live well.
- There is a difference between hard and bad – just because it is hard, doesn’t mean it is necessarily bad. I spent hours reading about hearing loss and language development, years talking with my son, and many miles driving to speech therapy, audiologists, and ENTs. It was hard, much harder work than my children with normal hearing required. But I learned a lot: I never would know that much about how children develop language if not for my child with hearing loss. I would not have learned so much about how to talk to children and how to listen to what they have to say. I have also learned to be an advocate for my child –that I am the most important advocate for my child. I never would have realized how significant that is if not for a child who really needed an advocate. And I can teach my children that hard work is not a bad thing – it makes you grow and it is very satisfying sometimes.
- We are not all the same – and we don’t need to be. A child with different needs makes you appreciate how everyone needs different things and that can be a wonderful thing about the world. It makes every one of us unique and special. No two people are exactly alike but that is fine. I remember thinking that my son’s hearing aids would be the defining fact about our family – we would be the family with the child with hearing loss. But I soon learned that life goes on and is so diverse and interesting to make hearing loss the most important thing about us. We are too busy traveling and hiking and learning to run a 5K and celebrating life to spend all of our energy and attention, or even very much energy and attention at all feeling sorry for our disabilities.
- We can learn to be tolerant – of others and ourselves. Some of us talk too loud, maybe we can’t hear well. Some of us are disorganized and can’t find anything, maybe they just have trouble keeping track of things. Some of us are mean and aren’t nice to others, maybe no one was nice to them, or maybe they just are that way. But we learn to accept people with the things we like about them and the things that we don’t like. The next step – a really big accomplishment – is to accept ourselves with the things we like about ourselves and the things we don’t like.
- Your child is not the embodiment of your success as a person. Wow, is that an important thing to learn. As a parent, I can try as hard as I can to raise my children well. But they are entitled to be and ought to be their own people. They can go off to school with clashing clothes which they really want to wear. It will not mean that I am a bad mother – it means that they have their own sense of style and a lot of confidence. My child has a disability that is not a reflection of my negligence or any other bad trait – its just how it is. And it is so important to really know this truth when a child becomes a teenager and young adults and tries to find his own path. She will make her own choices since they are hers to make. I might not think they are good choices at all but every person needs the chance to make their own mistakes.
- There is a lot to do to help children with hearing loss. Today there is hearing technology that can help most children hear – cochlear implants, digital hearing aids, FM systems and more. There are speech and language professionals who can teach most children to listen and speak. There are educational and recreational programs for children with hearing loss and their families. In short – there is a lot that we can do to help children with hearing loss hear, speak, and succeed. What a wonderful moment it was when my son tested out a new pair of hearing aids and told me “the sounds are louder and clearer.” Technology is improving all the time and the future looks brighter than today.