Between A Rock And A Hard Place

My son is already 6 yrs. old. He was diagnosed with autism and moderate mental retardation at age 2 1/2 yrs. 
Even before he was born he was diagnosed with so many problems: fluid around his heart, atypical umbilical cord, and once he was born he was classified as having "dysmorphic features". He was also born blind and deaf. The latter have been resolved: he now sees and hears pretty well, but he is not visually interesed in cartoons or reading. He is non-verbal and does not seem to learn anything.
I guess what hurts me the most is the lack of communication. He doesn't care for any human interaction with either his parents or his loving sister.  I have tried many things: early intervention, therapies and modified diets with supplements, and none has made a difference. But I know only a miracle can help switch on the communication button he has inside his brain.
I say he is "between a rock and a hard place" because his autism does not let him interact and his mental retardation does not allow him to learn. What a combination! 
I am tired of trying everything, of being patient, but most of all of hoping that someday he will call me "Mommy" . My husband, who is very supportive and a great human being has also lost hope.
I hear or read about other cases, and all seem less complicated than ours, for example: Kid "A" at least can speak or Kid "B" is already in school, or Kid "C" can do sign language, etc. It is so frustrating because I know I could teach my son so many things and make a "well-rounded" individual out of him, a civil person and a good human being.
But alas! my son has no skills, no motivation, no anything. He is just like a blank page with just some scattered letters on it. 
I worry about his future, about all the cruelty in this world towards helpless people like him. I worry about who will take care of him if we are no longer here. 
 I just need to see some glimmer of hope to get me and my family going.  I do not want to live with this perennial sadness that has invaded my soul.

honeysmile honeysmile
41-45, F
1 Response Mar 24, 2011

I went online to look for autism forums, because I've been saying for quite sometime now, that I should find some sort of group that I can relate to and have a place to listen to other people's scenarios and learn from or be enlightened by people's experiences. I feel like I'm always battling with time, and tired and feeling sad. But tonight I've finally found the time and happened to read your post...I see your post was from a while ago, but hopefully you check into this every so often or someone else reads this and gets something from it.<br />
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I know what you are feeling to a degree. I have always been around parents with children who have autism but their children have always seemed to be a lot higher functioning than my daughter, who is currently non-verbal, going on 7 yrs this summer. She does interact with us now but there was a time that I remember, when I was on the constant hunt to find something that would engage her and it was so tough. She didn't walk, and didn't want to do anything. I had to teach her to sit up on her own with physiotherapy exercises. It was so hard. But I did eventually find something.....I can honestly say that the first thing that every really brought her into our world, was music therapy. I'm not sure if you've ever tried it, or if you have any good music therapists in your area, but if you haven't, I just thought I'd throw it out there, because you never know. :)<br />
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You may feel like there is so much that isn't right with your child, but it sounds like there is so much this is right with him too. He has a loving family, and you said he is not deaf, and he can see. If he is able to sit, walk, and eat independently, there's some more wonderful stuff you have on your side. <br />
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At this stage of the game, I'm sure you feel like a lot of us - burnt out from trying everything under the sun, and feeling sad that you didn't have it in you to do more. The great thing is that you went to this forum at some point and vented. I think we all feel sad and alone, walking through this unchosen path of life with our special needs children. And it's ok to stop and take a breather from what feels like a marathon sometimes, with one disappointment after another. I just hope that with all of the love your family has to give, you'll get back up again and keep plugging away at finding a connection with your son, when you can. <br />
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I'm sure he may not be saying anything or even reacting, but he might... just maybe is absorbing everything that is going on around him, which includes all of the happiness and love that you can provide for him. <br />
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I go through my ups and downs too, and am always worrying and wondering about my daughter's future. But I've never given up hope that one day she will freely be able to communicate - even if right now, it is very unintelligible to those who do not know her. I have my days where I'm so frustrated, and lose a little hope. But I always try to put myself in check and say, "Hey, I'm not going to let this get me down, life's too short, and there is too much to appreciate." We are always so stuck and fixated on what our children don't have but I've read somewhere that we should always be trying our best to keep in mind of what they do have, and build on this. I need to be reminding myself of this often and am trying.<br />
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The world is a much better place than we sometimes give credit for too. Sure there are lots of bad people out there, but there are so many more good people out there, like you and your family. And if everyone that is good looks out for each other, and always stands up for our kids, special needs or not, and even into adulthood, than I don't think we should be worrying so much about there future. Make that your mission and the world will be a better place for sure. <br />
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I hope your soul has found a tiny bit of happiness with my message.<br />
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Take care.