where parents of kids with special needs connect
Hello Out There!
I am the mother of a 20 year old guy with fairly severe autism, a.k.a
Nat, a.k.a Sweet Guy. I believe that what other people may call "denial" of severity is sometimes just the other side of hope. I think that it is precisely because my family (my parents, my husband, my friends) refuse to see Nat as "severe," or "low-functioning," that has enabled us to have such strong, fierce hope. And he, in turn, has achieved so much in his lifetime (from getting aggression under control, to being able to work in a Papa Gino's, to being a strong teammate on his basketball team). I guess this makes me a Hopeful Parent... :-)
Nat, a.k.a Sweet Guy. I believe that what other people may call "denial" of severity is sometimes just the other side of hope. I think that it is precisely because my family (my parents, my husband, my friends) refuse to see Nat as "severe," or "low-functioning," that has enabled us to have such strong, fierce hope. And he, in turn, has achieved so much in his lifetime (from getting aggression under control, to being able to work in a Papa Gino's, to being a strong teammate on his basketball team). I guess this makes me a Hopeful Parent... :-)
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Replies to This Discussion
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Permalink Reply by Meril Davenport on -
I have been struggling with this exact thing as of late. My son is soon to be 16 and sometimes it feels like raising Tim is a practice in giving up one dream after another -- the chipping and stripping away of denial one bit at a time. I used to think denial was a bad thing, but that was before I came to be Timothy's mother. Now I see it as the flip side of hope - the only thing I really and truly have, and that which keeps us going. As I give up dreams for him, I flounder for a while until I can re-grasp that rope of hope. Sometimes, however (this is where I am this week), that rope feels like it is getting thinner and thinner with the loss of those individual strands, and I wonder what will happen when they are all gone? Will I plummet into dark nothingness? Will it all have been for naught? How do I ensure his continued life-long happiness? Will my sense of purpose or accomplishment or fulfillment suddenly go down the drain? What is the measure of his life? Of mine? Of anyone's? I go about pretty sure of it during my work day and with my other children, but in the dark quiet of the evening, after they have all gone to bed and I sit and wonder and plot and plan my continued efforts to out-hope the loss of my denial, I will confess that it can get confusing and a bit lonely...........
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Permalink Reply by Susan on -
It's so hard to feel positive when you're in a down phase with your kid (or with how the world interacts with your kid). I have so much trouble remembering that "this, too, shall pass." In fact, I hate it when people say that to me!! :-) But -- it is true.
A long time ago, when I first told my dad that Nat had autism, (Nat was three), I waited for some kind of painful or shocked expression on Dad's face, some kind of acknowledgement that this was truly a tragedy. But Dad just kind of smiled at me and said, "Well, he's still our Nat." And he has always treated Nat exactly the same, with high expectations, not taking any crap, that kind of thing. And he has an extra special bond with Nat because of it. I try to be like that: no fear, only open hope.
You're not alone, believe me!!
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Permalink Reply by Meril Davenport on
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Intellectually, I understand that I am not alone, but it can be rather abstract at times - it's something I have to carry around in my head and remember - like bringing along my own ghost. I am Tim's only parent and, while I know LOTS of families who have children with disabilities (I'm a special ed teacher working in early intervention) - I do not know any who are Tim's age or who are at this place in their child's life. And maybe it wouldn't be any different if I did know them, but it sure feels like it from where I sit today. My family loves Timothy, but they have made no effort to understand his needs or to meet him where he is, and see that it is only my responsibility to understand him and figure out what he needs and how to get those needs met. The closest I have seen them get to thinking about Tim's perspective or my position as Tim's mother was when they asked me - some time last year - how it was for me to love and raise a child who was not going to function on the same intellectual level as "the rest of us". I guess I can't really blame them for their inability to relate, and I do know that they love us - including Timothy - but stuff like that just tends to send me to the edges of the universe - quietly and all by myself.
This week, I find myself finally facing, with the intent to accept, the very real possibility (see - I can't even fully say it yet) that my son - the sweetest, most empathetic, helpful, eager to please, most gentle soul I have ever had the pleasure of knowing - will probably never be able to be unsupervised - for any amount of time. For the rest of my life, and the rest of his. The very thought brings me to my knees. I have kept him in my line of sight 24/7 for the last few years (except when he's in school) and, well, as much as I love him and will go to the ends of the earth for him, I'm not sure I'm a big enough person to hand him the rest of my life and be happy about it. I feel awful saying that - it's not his fault, and it's not something he fully comprehends - but it feels like giving up a lot of dreams for all of us, not just him. It feels rather big and overly daunting right now. I just want to know that it's going to be ok.
Knowing me, and, judging by the history of the last 11 years of this journey (my children are an adopted sibling group of 3) I'll find my way to a happy ending in a fulfilled life for all of us, but my limited, overly mortal, and primitive alligator brain is proving rather weighty at the moment. It's true -- this, too, shall pass......... You'd think that should be enough to avoid the bait of fear and worry. Sigh. I guess there is yet more evolution for me to accomplish.
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Permalink Reply by Heather M on -
Hi Susan and welcome to our forum!!! I like your outlook!
Hi Meril - I understand your thoughts. My son, Will, is five, and has a rare chromosome abnormality as well as autism. I have had lots of thoughts lately about what the rest of our life looks like, knowing full well that Will is going to need some level of care permanently. It can be a scary thought for sure and daunting at that. I'm glad to see some parents of older children here as that doesn't often happen on the forums I belong to, and it is nice to have both older and younger kiddos to discuss.
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