Friday, 13 November 2009
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What happened to our dreams?
The birth of our first child was cause for major celebration. My husband's family had not had a male birth in 27 years. We were young, in love, happy and ready to embrace this little person. It was an ideal pregnancy until the very end when I went into pre term labor. I gave birth prematurely to our son. We had to leave him in the neonatal for two weeks, visiting him several times a day, dealing with the ups and downs that parents of preemies deal with. When we took him home, we were nervous, but felt as though the worst was behind us. We watched him grow into a beautiful little person filled with curiousity. From the very beginning we knew he was very intelligent. He said his first intelligible word at age 7 months. He spoke full sentences very quickly. At age 13 months, he took his magnetic letters and spelled out the word B-A-B-Y. He read the word aloud and looked at for approval. I was totally shocked. I know now that he had been watching Sesame Street and an Asperger trait is the photographic memory. He has always been able to transfer what he learned visually to his life.
He quickly moved on to reading books, and learning all about trains. We continued to think we had a superior brain on our hands and encouraged his obsession with trains, taking him to train shows, stores and museums. Now we know that is also a sign of Aspergers Syndrome. They have a fixation with items and trains are among the top ten things Aspies take a liking to.
He went to school and I gave birth to my second child who was very different from him. We now were faced with the fact that there was something truly special about our child. The problem was, it was not special good when it came to school, it was special-bad.
I do not believe we have stopped mourning for the child we thought we had. He had been through many years of therapy and come a long way. However, the older he gets, the more apparent his disability becomes. His younger brother has passed him in maturity. He has a gait due to his muscle tone problems. He often makes faces that a normal 14 year old would not make because he is "thinking something funny in his head". He is unique and will find his place in the world. But it is scary to us, his parents who want nothing more than to protect him from everything, To make his world perfect.
Many people have told me to be grateful that he does not have something terminal. But he doesn't have anything that can be cured either, so where does that leave us? True, we have a child who is alive and relatively healthy, but he faces all sorts of challenges and discriminations that he should not have to face. His siblings must handle having a brother that people something point and laugh at. They will be better people for it, but at their age, it is difficult to see it that way.
Then there is his father and I. It is tough on us. The diagnosis was very hard on our relationship in the beginning. We both handled it in different ways. It nearly broke us up. We did the right thing and went to counseling and worked things out. We love each other very much and are partners through the good times and the bad, but each day is a challenge. People judge us, they don't live here, they should not presume to understand, but they think they do. It isn't fair, but it is the harsh reality that is life.
We have modified our dreams for our son. We have started to face the reality that he may have to reside in some sort of assisted living situation one day. But maybe not. We have hope even though we are realists. He is intelligent and we are always trying to find the right match for him, a place for him.
Our dreams? They are severely modified. My husband wanted to be a college basketball coach. He still does, but he knows that traveling around is difficult for us. we have to stay in a place where there are appropriate schools and services for our son. We have a hard time financially because I have had to quit my full time job in order to be available to my son, his needs and the needs of the other children. Their lifes have challenges too, they often feel they take a back seat to their brother and sometimes they do. We don't go places that other people go because it is either too taxing financially or too hard for our oldest to deal with. We are either a fragmented family or we stay home.
Our dream is now security. Financial and emotional security for us and our children. A future and hope for our son. Hope that society will grow and understand him and others like him. Embrace him and his high intellect. People will aspergers can contribute to society, they just have to be given a chance, they have to be encouraged to dream their own dream and then live it.
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What are your dreams? What happened to them?
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About the Author
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- From: bizymomof3
- About Me: I am a busy mother of three. My oldest son has a diagnosis of Asperger Syndrome which has become a full time job. I spend a great deal of my time educating people about Aspergers and making sure that his services are in place. Each year we battle the Department of Education in order for our son's education to be handled properly. Much of what I write or post will be about issues of special needs parents/children and adults. I have been a teacher for 20 years. I am currently employed as a part time Museum educator, which is interesting and alot of fun. I have two other children, both are soccer players, very bright and keep me just as busy as the oldest child. I have published two articles in my local newspaper about raising a child with Aspergers and I am currently working on a novel about the same subject. I have published a children's book, Spenser's Pencil, which took place while I was a third grade teacher. I never have enough hours in the day to get everything done, so I
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Comments (3)
It's sad you can't live up to your dreams the way you wanted, but I am sure that won't stop you from being happy, having such adorable children.
I am in senior year and all I dream of lately is knowing what to do with my future, hoping my dreams will come true. I want to go a year abroad in '10 and after that go to college to become a primary school teacher... who knows if I'll go that way´, but I would love to.
But no matter which dreams come true and which not, important is to not stop believing in dreams.
My parents didn't know about Aspergers. I was much like your son. I started talking when I was seven months or so... and was saying things like, "Aw Mom, you mutilated my bologna," when I was about 18 months old. I probably would have taught myself to read sooner, but I am also dyslexic so I struggled with it until I was a bit older... and then took off, reading at a college level by age 13. I read everything I could get my hands on. I would fixate on an author and read everything he or she ever wrote. I read the Bible probably a dozen times by the time I was 16, starting when I was six.
I never got treatment, never got therapy. I was simply a "strong-willed" child or "a bright kid who isn't working up to her potential" or "a moody kid." I was dragged along to do things that I didn't want to do. Sometimes kicking and screaming. I still make faces when things strike me as funny, because I take them literally. I get accused of being a smartass when I point out what's so funny.
Thing is, through all of the stuff I had to deal with as a kid, now, I am a relatively independent adult. I was MADE to do things I didn't want to do. I was expected to behave at least moderately well. I didn't have Aspergers as an "excuse" or even as an explanation for why I did some of the really screwy things I did or struggled with. And believe me, I struggled.
Since my son has been evaluated and Aspergers or even high functioning autism has been suggested... NOW I have a reason for everything I went through too. I don't see it as something that can hold him back any more than it has held me back. It is simply something that I have to work around, through, over, or even within. I've had to modify my strategies to get things done. I've had to learn about myself to teach myself things that people couldn't teach me growing up, so I can teach them to my son using methods that an Aspie can grasp.
I was a very awkward 14 year old. I am a very awkward 31 year old. (You should see me in certain situations... it can be down-right laughable.) BUT. I'm married. I have three great kids. I still make funny faces. I still rock, bounce, and sometimes even "flap." I struggle with talking on the phone with people I don't know in person and will rarely call even those people myself unless absolutely necessary. I dropped out of college after I got married, but now I'm back in school taking online classes, which have been MUCH more enjoyable than the classroom experience.
I'm planning on finishing my B.A. in Communications and the books I'm writing, ultimately, though I want to start my own production company. I have dreams I never dreamed I would have when I was 14... It took some time to figure out how I fit in the world and how to work within my limitations and at the same time build on those things that I CAN do, some of them better than most people.
Don't give up hope. Don't give up your dreams, and don't discourage your son from having them. He can do ANYTHING. Aspergers isn't the end, it is just a different set of rules to play by. Working within those rules, more is possible for us than an NT person can even begin to imagine. I grew up without the label, so I was forced to play by NT rules... and I didn't play well. When I decided, without knowing about Aspergers, that I was going to start living by my own rules and saying, "Forget this" to everyone else's... THAT is when things started working for me.
Then I learned about Aspergers, and in the past four years, I've gained words for things that I didn't have before. I've learned that I AM truly different than "most people" and that is ok. I have a reason for the trouble I had before. I can work with my son so he doesn't have to learn things as much the hard way as I did, but my expectations of him have not changed. I still believe that he can do anything. He's just going to have to work harder at some things than others. Frustrating? OH YEAH... but it's worth it.
Dreams are important to hold on to, makes life a more WONDERful experience. My opinion is that it's best to try even if it you fail or if it goes pear shaped sometimes. You never really know what is going to happen in this odd world (who can figure it out? I remain philosophical and optimistic).
Lately while trying to hold on to my dreams i have been taken through a gruelling process of learning to gradually care less about what others think of me. It still gets to me but I'm learning to see that it doesn't really matter. Sounds like you're experiencing a difficult time with your current journey, hang in there! Sometimes it feels like you have to walk through fire to get to the destination your heading to, which makes it seem easier to quit. Having to adapt to the changes the process requires can be rather exhausting!
I appreciate the previous comment, it's encouraging to hear about someone elses successful journey. It helps me find hope in the darker moments when living with autism can bring it's trials and patience is hard to find. You're right about it being frustrating, but as a dreamer I'm thinking that it will be worth it.