Posts Tagged ‘disability’
When a friend first suggested I gave Wordless Wednesday a try I wasn’t entirely sure. I mean, I like writing. Still, there was something about it that appealed to me, and on Saturday while we were attending a “Fall Festival” (ridiculous to me as the weather has just now cooled down to London summer, it really does not feel like Autumn), I snapped the picture of Pudding touching the tree. I was hoping to illustrate, at the time, that while all around kids were playing on the playground, bouncing on the inflatables, eating the yummy food, riding the train and the ponies, Pudding felt compelled to do this. She needed a fix. Of course, Pudding did all the other stuff too, she was in her element and not at all overwhelmed by the crowds, noises, sights and smells. She is a sensory-seeker, even a place like Disneyworld has “just-right” stimulation for her. Touching the tree was the one tiny thing that set her apart that day.
So I was a little disappointed when I got home and realized the picture looked like a girl playing hide-and-seek. Not that there is anything wrong with that, it just didn’t illustrate what was going on sufficiently, and I felt I had to use words to make my point. For about the millionth time, I was thankful that I do have the ability to express myself. I can’t even imagine how frustrating it would be to struggle with something so essential.
I put up my photo, with my caption, and trotted around the internet looking at other people’s WW images, and leaving comments where I felt I needed to. It was fascinating! Literally a snapshot into their lives, seeing what makes them tick. It is a great way to understand somebody who is taking a different journey. I saw some great images on my travels: skilled photography and candid family moments, the soulful eyes of a dog whose people are out of sight. And then I found a page that I just have to share with you. I just love the joyful expression on her face, and I sat for a while marveling at all the different ways nature expresses beauty. Then I read these words on the site:
“In India any disability is considered as a CURSE.
I want to let the whole world know ‘What a Blessing my child is’. “
Those words have really stayed with me. Although I’m not a religious person, I feel that my children are meant to be just as they are, and I am meant to be their mother. I feel blessed to have them. I have some trepidation of how Pudding’s differences might be viewed in different parts of the world. We still (sigh!) don’t know where we’ll live next, but I hope wherever we go, my children will always know that they are a blessing to me. Indeed, to view your child as anything but a blessing is the true curse. Little Navya and her wonderful parents definitely brightened my Wordless Wednesday.
Coming back to my post, I was struck by a particular comment. Will had written:
“At first I though “hide and seek, but the truth is even better.”
The truth is even better! This was what I got out of Wordless Wednesday. Sometimes we have to look beyond disabilities, and see the true wonder of a person. And for others like Pudding with no physical signs of disability, we have to remember that what you see is not what you get. It really is about taking the blinkers of and seeing the real human, and not how we expect a person to be. When we need to look a little closer, Wordless Wednesday is a great way to do just that.
I write this post with a certain amount of trepidation. For those on the outside who may not be aware, the topic of vaccines is the most divisive in the autism community. It can pit parents against those on the spectrum, and against other parents. It puts the scientific and medical community against alternative providers and the people who use them. I hate this division, there are bigger things to fight than one another. So I don’t really want to write about this debate. I’ve read a lot on both sides, and both make compelling arguments. There may be different kinds of autism, not just in severity of challenges, but in varieties too. Some may be genetic, some may be toxin-caused, and some may be a mixture of both. There may yet well be an as yet undiscovered auto-immune element to autism that will vindicate both sides. I don’t know, I may never know. I just have to make the decision for our family, because we have Cubby, and last week we had his appointment for his MMR.
When we look back at how Pudding was as an infant, before she even had any vaccinations (she was born in Europe, different vaccine schedule) she was intense, required more sensory stimulation than other babies. Of course, I didn’t know that then, but it has become more developed over time. There are family traits that can’t be ignored. She never had an adverse reaction to her vaccines. Everything points to her variety of autism being inherited. Don’t get me wrong, I still went through the process of blaming myself for some unknown event during my pregnancy or her infancy, but the evidence just wasn’t there. I just think she was born with this neurological difference, I don’t think her brain was damaged by toxins. I fully appreciate, however, that this isn’t the case for everybody.
So the rational part of my brain had no qualms about taking Cubby for his MMR. I thought of the evidence. I considered the opinions of medical professionals I trust. No problem.
Except…Fear isn’t rational. It takes facts and evidence and turns them upside-down. And when I was in the room waiting for the nurse to come back in, I worried about if I’d got it wrong. I was thinking of accounts I’d read about children who were typically developing until they got the MMR, and the child they knew disappeared. I was thinking about how it would feel if this was one day revealed to be the cause. What if he developed a more severe disability than his sister? The answer is, we’d accept it. We’d live with it. I thought I’d got over blaming myself, but here I am, still thinking that something I do could affect his outcome negatively. Am I ever going to stop doing that? Spectrummy Daddy and I had discussed it, and concluded that we needed to give him the shot, but Spectrummy Daddy was at work. I resented that I had to be there, that ultimately it was down to my say-so. So it was just me, Fear, and my two beautiful but quirky kids in that room. I would do anything to save those kids from harm, and with Fear in the room, I felt they were about to be attacked.
Cubby had his vaccines, but I didn’t defeat Fear. There is something every parent is more afraid of than autism. There has already been a reemergence of measles. It can be fatal, particularly in less developed countries, like the ones we might potentially move to next year. If I made the choice not to vaccinate, and the worst happened, I couldn’t live with it. When the rational part of me was gone, and I’m left with fear on all sides, there could only be one choice. I went with the one I can live with.
Now that Fear has moved on, and I’m back to being my somewhat rational self, I find I can live very well with my decision. Fear has definitely overstayed its welcome though. It is time it found somewhere else to live.