Parents with special needs children: YOU need to read this. I need your input to help other parents just like us. I lost this post in the crash of Chicago Parent, but had posted a hardcopy in my son’s OT office. Please take a moment to read and, please, feel free to respond to the email listed here or in a comment on the article.
Repost from 10/22/07
As the mother of a child on the autistic spectrum, I’ve often wondered how everyone else does it. Does every family with a child on the spectrum, or with any other special needs get frustrated? Find moments of joy in the smallest of triumphs? Feel the need to just break down and cry, if for nothing more than a moment of allowing yourself to be vulnerable? Feel the need to escape every once in a while? Do anyone else’s ears perk up, even in the most crowded locale at the sound of someone else, clear across the room, talking about their child, with the same issues as yours? How about moments of guilt, anger, sadness: at yourself, others, teachers, school districts, strangers, family members, those who just don’t get it, government for not helping out more? Do you find yourself getting teary-eyed when you read a little blurb about a child with issues similar to your child’s doing something wonderful – sharing in that parent’s joy? Do you get angry when your child’s teachers just won’t listen and continue to label your child as a behavioral problem when, in fact, they simply do not know how to interact? How do YOU balance the myriad of places, finances, jobs, therapists that are necessary, and all of the time spent dedicated only to your child’s well-being?
What about faith? Does that play a part in how you get through? How about humor? What about the rest of your family?
What do you do to relax & release?
How many times have you sat at the various therapies (as I am now), IEP’s team meetings, interventions, doctor visits, and looked at the other parents there and wondered what exactly it is that they do to keep it together? That is exactly how these questions came to me: as my husband and I sat in the lobby waiting for our son, SmallBoy, as he worked with his OT (as we’re doing now). I see parents all day at my job- some have kids with seer learning disabilities, autism, ADHD. I see parents at our son’s behavioral therapist and occupational therapist and I wonder, “Hmmmm – what is it that THEY do? I know they could tell me volumes about their child and educate me inside out on their child’s disabilities/issues, but what do THEY do for themselves?”
There are so many stories of what our children are like, how delightful they are and the joy they bring to our lives. There are happy stores, and some that are so sad, others that bring hope in the wake of tragedy. I am in the process of researching how we, the parents and family members of these precious angels, get through the day to day. I am focused on US as well, because it’s so important that WE can keep it together when we need to, that we, too, have to “let it all out” from time to time. My hope is to write an article about US that will, perhaps, help other parents like us and, ultimately, help educate those who have just heard the words, “Your child has _______.”
If you are interested in sharing your story with me, please email me at tinanmike@sbcglobal.net, and use “How WE do it,” in your subject line. No need to send me your whole story right away, I’d love to converse with you prior.
As a side note, after sending this same request to my family, my mother-in-law wrote back about an experience she had wile vacationing in Mexico:
“Hi Teen…When I was in Mexico…I was sitting around the pool…and I was mentioning my worry about getting [SmallBoy] mini bongo drums…because noise might be irritating…but I wanted him to feel part of the very musical family….She (a total stranger) slid up on her float and said…,’Why would sound be irritating?’
“…and I said, ‘My grandson has Asperger’s.’
“…and she said, ‘I have a grandson with AS.’
“Then another lady floated up and said, ‘My nephew has AS.’
“Anyway…the fact that I said…’[SmallBoy] has AS,’others came around and bonded with me. I think they liked that I just talked about it.
“My point is, of course, …we come together as a group of people in our caring…and our knowledge of AS…we realize…it is all around us, and we better do something about it now…but that they are the dearest children on earth….”
My husband and I TRY to have a date night where we go out, even if only for an hour, grab a beer and let our frustrations out playing Ms. Pac Man. We pour our emotions into our music, but sometimes that’s just not enough. It’s hard sometimes to keep it all “aside” until you’re out to vent. What do YOU do?
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