I don’t know if you knew before the birth or not that your child was going to be different than you expected. Maybe the news is coming years down the line, or possibly your still is some denial it’s even happening. One of my friends told me years ago that it gets easier as your disabled child gets older, or as you get further away from the diagnosis. I couldn’t believe it at the time. Then my son was always in a front pack, diapers were appropriate for kids his age and I wasn’t worried about talking yet because that was still months away for a typical kid. You couldn’t really tell when you looked at him- at least in certain light- that anything was even different. So how the hell were things going to get better when he was older, and in a wheelchair, incontinent and unable to talk; when he would undeniably be seen as disabled to everyone around him? Sounded like a world more complicated then I was ready to handle.
But, despite what seemed like insurmountable odds, thing have gotten lighter over the years. Acceptance is the first step to making things easier, for both you and your child. I can tell you a little how it looked for me.
Right from the start I felt protective- and who knows, maybe this protectiveness was a sort of denial. The best news I got after my son was born, was the day the doctors told us they couldn’t predict exactly how his brain abnormality would manifest. Maybe he would be normal IQ and unable to walk. Maybe he would walk with braces and have mild cognitive impairment. Maybe he would never walk or talk or be able to take care of himself. I wanted, no I needed, to feel like Joaquin would get to choose who he was for himself. This manifested for me as a desire to keep his brain abnormality hidden from the public – in hopes that people would treat him normally, so he would have the best chance of being just that.
When I look at pictures now, I know that nobody saw him as “normal” but me. I didn’t see his crooked legs and nose, his inability to move his limbs or close his mouth as that different from any other baby. I was in fact in such a state of hopefulness about things that I took him to a typical new-born mom’s group. It was there that I saw it: the newborns squirming, reaching, the pulling and grabbing and chewing, all the things that my baby was not able to do at all.
After that I stuck with parent groups for kids with special needs. Over time, as it became more and more apparent what Joaquin’s challenges were, I struggled every day with how to introduce him to people. I felt if I didn’t mention that he had special needs straight away I would appear in denial, but then if I did it wouldn’t it be disrespecting him? Was I to use person-first language- it is after all the politically correct way of addressing people with disabilities- “I have a child with special needs”. Or are we then calling attention to the disability as being undesirable rather then an essential fact of our child’s existence, one we could no more change then their hair color or sex? Mostly now I don’t even mention he has special needs, I just call him my son, and then if for some reason the story requires that I explain his wheel chair, or blindness or feeding tube- I do just that. And when I do explain his challenges I interchange person-first and disability-first language. Maybe this is offensive to some and empowering to others. All I know is that it’s truthful to me. I don’t want Joaquin to be cured of his disabilities- as it makes him who he is. Sure, I hate the epilepsy, and could do without the shitty side effects of the meds, but I love him in all his glory and messiness.
Lastly I would like to say this. Wherever you are in your process, it is the right place for you to be. I don’t want you to feel stuck in a horrible place, I simply want to reassure you that things can and will shift.
I was reading a mother’s blog about her experience parenting her disabled son and how sick of “diagnosis positive language” she was. As in: “congrats! Your child has down syndrome!!!”. She feels that this really prevents parents from going through the stages of grief that they may experience when getting an abnormal diagnosis. I feel her, but I had the opposite experience- it wasn’t that I wanted everyone to think a major brain abnormality was like striking gold, but I felt my biggest loss was the loss of global joy that one should feel when their child is born. It’s true before he was born that I would have given anything to have found out about his abnormalities within a window of time that I could have had an abortion. It’s also true that I never once felt this after he was born. I suddenly felt pissed off and sad that the world didn’t feel the same way.
So here is my advice. Stop looking out there, waiting for the medical professionals, or your family or your partner to feel the same way you do about your child. Just focus on the thing that is in front of you; your special little person who is here to change your life in every way. Enjoy every calm moment and know that the horrible storms will pass. Find the books and the blogs and the movies that inspire you to keep putting one foot in front of the other. And just know, that even if you never wanted to join us, your in one hell of an exclusive club, and we are all welcoming you with arms wide open.
https://www.youtube.com/watch?v=cNqWU97El3M
Reference these articles for more information:
http://thismom.blogs.com/this_mom/2006/07/bring_everyone_.html
http://web.archive.org/web/20060213160217/web.syr.edu/~jisincla/person_first.htm
please don't cue the sad music 