Terese Allen of Woodstock, NY writes:
"I've been reading your articles and stalking your Twitter account, and have to say, you really stand out as someone who is remarkably positive no matter how negative a thing you're dealing with. I mean, you don't seem to be in denial or anything, you're just honest, and somehow you deal and find things to laugh about no matter what. What I can't help asking is HOW. My daughter (I also have a son) has the disability of autism, and sometimes I'll be doing something really nice with her on a good day, but I'll start to cry anyway because when I found out I was having a little girl I knew the kinds of things a mother is supposed to be able to do with her daughter on their best days together. That's not what I have. I never will, and it just kills me. My husband does what he can and put me in therapy, but that only seems to help while I'm away from my family and there at therapy. So how do you deal with the disappointment of having a disabled child? How do you not feel ripped off? Please help me understand your outlook before my daughter figures out what mine is right now."
Wow. You hear confessions like that so often, you hear about them too often (though it would be insensitive to link directly to news stories in the extreme of this theme, they are far too easy to find), and yet it's never any less jarring for me to hear it again. The reflex is always to not so much answer the question as alleviate the need to ask it, but that wouldn't be fair. You're already being psyched out, yourself, and still you're asking me what's going on in my head. Thankfully, I've answered a very similar question recently in a vlog for another special needs parent's blog, so my answer might even be coherent by now.
In a way, you might say that my perspective comes, at its foundation, from....perspective. I find that perspective makes all the difference. Oh, it doesn't make anything any easier, but it can help you be a match for just how hard things can get. Imagine, if you will, that you are in a very dark tunnel. The amount of light in said tunnel isn't changing, but perspective is sort of like when your eyes dilate, so that more of the light that is in the space, can reach the parts of you that need to navigate it. What you're looking at isn't changing, but your vision is. (Besides, I always try to remind myself that the light at the end of the tunnel shines even while you're in the darkness around the bend.)
Our first and only child was born two months prematurely and with a lethal blood disorder, each of which, and the combination of which, brought considerable challenges to his health....challenges that two medical networks and the Mayo Clinic were all still trying to figure out how to surmount, when his body miraculously stabilized itself. From the day he was born until he was about six months old, we were repeatedly given the message -- by a real professional of bedside manner, let me tell you -- not to get attached, not to expect him to survive. Facing that was the entire reality of our parenting experience, and it didn't leave any room for dreams that reached beyond the next time enough tubes and wires were moved aside for us to touch him. At that point, perspective is a survival skill, and once you get past that point, perspective isn't something that can easily leave you. We weren't thinking about what we'd been told time with our children would or should be like, what we'd imagined it could be like -- we were thinking only of time with our child....time we never knew, from one hour to the next, if we'd have any more of. We were fighting for his life -- ANY life. I think when you're coming from an experience like that, it's easier to laugh at anything that you're headed into, because you're laughing defiantly.
Wait, there's more....and it can apply to anyone....just look to Part 2!
Sometimes the best therapy seems to come from having other special needs parents to laugh and cry, scream and cheer with. You can go to meetup.com to do localized searches for groups, by special interest. I plugged in "NY, New York, USA" and "special needs parenting", and found the Bronx Parents Helping Parents Info/Networking Group, in the Bronx, NY -- a group holding morning and evening sessions each month, during which you can meet other parents of children with special needs, regardless of diagnosis and age, and network with other caregivers and professionals.
Comments
Leslie,
Here is the link to the article where I mention this article. Very good lessons here that you give.. thanks!!
www. emaxhealth.com/3275/autistic-kids-killed-mom
(had to add space so Examiner would allow it)
For me, sentiments like the one expressed in Theresa's letter are only a manifestation of a much deeper issue in our society as a whole.. particularly for women.
Growing up, we're fed this all sorts of fairy-tale nonsense about marrying Prince Charming and having 2 absolutely-perfect children. That's the cultural ideal, isn't it? So when that doesn't happen, of course we're disappointed. Of course we feel cheated. This wasn't what we fantasized about when pushed our baby dolls in toy carriages and named them all "Dave". (ok, maybe I'm the only one who did that :-D)
Yes, you're absolutely right, it's all about gaining perspective. I just wish we (as a culture) did not perpetuate unrealistic ideals along with the attitude that we are somehow entitled to perfection - everywhere - a la "The Customer is always Right". It doesn't exist.
Woops, I misspelled Terese's name - sorry!
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