This post is in response to a blog carnival called How Do I Cope? I came across it when a friend posted her answers to the questions posed. Her answers can be found at
http://dimaitland.blogspot.co.uk/2012/07/my-reality-how-do-i-cope.html?m=1
The carnival seems aimed at mums, but I figure what the heck, a dad should add his perspective as well. So here goes:
1. What is it about your life which has made
someone ask how do you cope?
Well the obvious answer is having an autistic son. Latterly it was compounded by my master’s thesis which thankfully has finished.
2. What is the best thing about the situation?
My son is without the best thing. Every achievement of his is a victory which resonates with joy in us.
3. What is the hardest thing?
The hardest thing is the uncertainty of the future. My wife and I are both in our 50s. Our son turns 9 next month. We in all likelihood will not outlive him. What will happen to him after that? We hope that he will be sufficiently remediated to ensure that he can survive without us. We hope that the hope will not be futile.
4. What gets you through the day?
Lord what a question! I am not sure. If I had to give an answer, it would be stubbornness. A stubborn refusal to not believe that he has a future. The belief in the possibilities of him is what drives us. That and the rare time I can find with a novel.
5. What would you change if you could?
This too is a hard one. To change his PDD-NOS condition seems obvious, but then I do not know what son I would have. Xavier is the son I love, I am not sure I would want someone different.
So what would I change? The strains it causes between my wife and I. Exhaustion affects us both and leads to stress. The strain does neither of us, nor Xavier any good.
6. What piece of advice would you give to
someone finding themselves in your situation?
Research, research and more research. Know your therapies, your rights and remember always to ask questions. You are the expert on your child.
Posted as part of the blog carnival at
http://www.herecomethegirlsblog.com/2012/06/25/a-mile-shoes-blog-carnival.html
I read your and Di’s blogs and I love the idea that one has to answer pertinent questions that is pivotal to understanding of oneself – a luxury that we do not often allow ourselves. So here is my contribution:
1. What is it about your life which has made someone ask how do you cope? Autism, married life of over 20 odd years and it’s unique attributes, studying, “therapist”, mum’s-taxi, “diagnostician”, “researcher” and all the other hats that I think all of us wear (well, everyone who is likely to read this).
2. What is the best thing about the situation? Pudding, her father, the people who have entered my life, spent some time, left and those who stayed. (Even my daxies). The learning curve has been steep, but I have learned so much! And the fact that I have learned to be a better person because of the life that I have. I just need to mention that my life is very blessed – I am very grateful.
3. Mortality. I do however wonder if that is uniquely to parents who have disabled children – I do believe that we all want to live forever and spend time with those whom we love? So perhaps that should be the worry about what will happen when I am dead? How does one protect a vulnerable person from the grave?
4. What gets you through the day? I can honestly say – good and bad days – it is love: The love of God, the love of family, the love for and from a child, friends and often people who do not know that they are doing “angel work”. Love really does make my world turn around (as the song goes). And the daxies. They tend to be the ones that shadow me at night when those are long and hard. (Along with prayer). I laugh a lot too.
5. Resources!
6. I would pass on the advice that was given to me by my mum: “never let a label define how you see your child. You do not know the purpose of your child on this earth. She probably will not discover the cure for cancer. Most children will not. But her purpose might be to stop the guy who will discover that cure from stepping in front of a bus”.
I would hate your contribution to be just a comment on my post. Perhaps you might like to go over to the site at the bottom of the post which has an email address where you can send it ans she will blog it on her blog either under your name or anonymously if you prefer.
Wonderful post, Hilary. I share your concerns and hopefully those of us with ASD kids now transitioning into adulthood will pass along what we have, what we know, etc. Some of us are finding that in the early transition years that those ASD kids with high cognitive functioning (not necessarily high functioning in the ASD realm) manage to do well with others like them who share complementary (not same) skills. We do not pick our families, but perhaps how our children’s ‘families’ are picked for the future will have much to do with their own independence and successes.
One of the most remarkable experiences in my son’s early years was the joint visit with a friend to a science museum. Another mom and I rented a hotel room withing walking distance of the aquarium and the museum and a few other nifty adventures with the thought that we’d have to retreat many times throughout the day so that our kids could decompress. Keep in mind that these two kids with severe sensory issues had not met until this day….but within a few minutes (barely talking, just signaling) they were trading ‘watches,’ so to speak. One child would become immersed in a display and the other would ‘watch’ for oncoming onslaughts of people. With a single shoulder tap signaling such an event, they’d both retreat to a corner until the noise passed, then they’d resume their shared vigilance and enjoyment of each display. It was a clue of a seemingly natural skill that could be cultivated for a lifetime. I’m ever vigilant, myself, of those clues.
Best to you. Lorri
Lorri,
What a remarkable story! I love it for the myths it breaks about autistics. At a brief unpacking it speaks of an empathy “these children” are supposed to lack. It talks of joint attention, cognition and compassion. Thank you for sharing it.
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