In 19 days my Leo turns 5 years old. 5 years old. He’s doing well in his preschool class and already talking about how next year he gets to go to Kindergarten. I am excited about his forward movement, about his gains in language and social skills. I am excited at his love for learning and his want for knowledge. But with these excitements come reservations, come uncertainties and my stomach gets tied in knots.
Having a talk with my dad this morning about a program that has been implemented in northern California for autistic adults. It talked about employers seeing strengths in detail oriented positions for high functioning autistic adults. It’s wonderful. It made me almost throw up.
I don’t know if Leo will ever be able to hold a full time job. I don’t know if he will ever be able to live on his own. He may very well need help his whole life. He might not be able to go to college or have a professional type job. And he might. That uncertainty is scary as a parent.
As a parent we want to dream of our children soaring so much higher than we can. We dream of them changing the world in profound ways. We dream of them curing cancer and flying spaceships. Of making new uses out of recyclables and designing cars that run on trash. At least I do. Even though I know in my heart that the way he HAS to wish everyone he meets a good morning or a hello he’s making a huge change in the world by leading with love.
So how do you even begin to prepare a future for a kiddo that may or may not continue to grow. Even planning for kinder is making me nervous. The expectations for things he still isn’t strong in, like writing, are high. What if he can’t and he falls back. What if they want him to repeat kinder because of his struggles, then he will be a very big 7 year old in kinder. I know, don’t borrow worry, but these are very real things I have to start trying to figure out how to navigate.
So the question is, if you are or have been in a situation like this, how do you do it?
Do you simply plan week by week or month by month? Do you set goals as high as the clouds and figure out how not to be crushed if they never reach even part of the way to them?
I don’t know how to plan for my future or his right now but I do know that I’ll never ever stop him from dreaming and reaching and wanting. I’ll never be a parent who holds him back or tells others he can’t or he won’t. I’ll never make him “autistic” he will always be Leo.
So for now I’ll try to push my fears for him aside. I’ll smile when he tells me he’s going to be a Paleontologist, I’ll tell him to breathe and use his words through the things that he struggles with and I’ll cry when I’m alone. When he again realizes he’s not like the other kids.
Oh, Katie – Again, Leo is so lucky to have YOU for his Mama!! I have mentioned before that my 28 year old son wasn’t diagnosed with Pervasive Development Disorder until about 10 years ago, or less. We never knew when he was going through school why he wasn’t performing as well as we thought he should. We thought he was lazy. We had him tested for special ed. He was too bright. We home schooled him one year. We did a lot. But, at the time, PDD wasn’t even a thing. What I was thinking when I was reading your blog was: Would I have wanted to know? Well, yes, because I think we could have approached things so differently. But, also, like you, I would have worried so much about Nathan and his future. I still worry. We are working on a will, my husband & I. One of the questions asked of both of us was do we worry about providing for a child with a disability? Hubby answered no. I answered yes. My husband asked me once what I worried about the most – and my 2nd answer was, Nathan. Nathan got into a program about 7 years ago through the Department of Vocational Rehabilitation & Career Path Services. They trained him to work in the Activities Department for elderly patients with Dimentia & Alzheimer’s. He will have been there 6 years this Spring. He has, at times, mentioned living on his own. I would worry so much. He takes meds for ADHD symptoms, and depression – and Katie, he is THRIVING. He doesn’t want to be alone. He has gone on Match.com and dated. Dated some doozies. Dated one for 2 years and then HE called it off. Now, he is very serious about a 25 year old nursing student. They are CRAZY about each other – and they talk about getting a place when she graduates in May. Nathan’s job is 15 miles away. He hates driving, but he does. He would like to work closer to home, so 2 weeks ago, he sent out a bunch of resumes for Valley jobs. He got a call and went in for an interview last Monday. (I hate the thought of him changing jobs, because he interviews NOT WELL – and, the people where he is now KNOW what he’s capable of.) Well, the job didn’t offer enough hours, so he didn’t take it. You know what he told me? “Well, if nothing else, at least I got some interview experience.” He amazes me. And, I still worry. I always will. I love you, friend
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Okay Katie, I want to say “no” to your fears, to offer platitudes, to brush aside those fears, but I won’t, cuz they are an integral part of being a parent . And then we have Leo, Leo with the enormously beautiful big blue eyes. Leo, who runs towards life, sometimes crashes and takes you down with him. But then you cry, probably curse, get up, pull Leo up with you and move on. Cuz that’s what you do, and you do that over and over again. I love you guys.
Sent from my Verizon Wireless 4G LTE smartphone
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