>>I’m glad you didnt (at least seem) to be upset by my comment. (She’s referring to the comment quoted in the beginning of the post, ‘Am I out of touch with the realities of raising a child with T21?‘) (The reason I felt bad about what I wrote wasn’t because I took any of it back, but because what was the point? What’s the point in bursting your bubble and trying to get you to look at the negative instead of looking at the world with rose colored glasses.)……I guess that was exactly my issue with your last post- it seemed very much like you were romanticizing it.<<
I’m going to post a response but a private email came in on this in the meantime, and it’s so similar to my perspective that I’d like to quote it here:
>>As for romanticizing kids with special needs I would love to point out to your commenter that everyone else gets to romanticize / have rose colored glasses about their kids, why can’t we have them about ours. The medical community here is working as hard as possible to keep our “expectations” reasonable as are our friends and community. But they get to have unreasonable expectations of their “typical kids”. !!! Not every kid is going to be a Dr/Lawyer or even employable. There are plenty of 20 somethings who can’t find themselves…. I don’t think there is any chance that mothers like us have a chance of being too optimistic with all the gloom and doom out there.<<
It’s so interesting to me that some people – I’ll assume they’re all well-meaning – feel the need to make sure I’m ‘realistic’. I wonder why that is. Do they really think I don’t have an awareness that there will be difficulties as my baby gets older? Believe me, I’d know that even without being told! Do they think that I don’t have challenges right now? I can assure you that I do. Do they believe I’m harming myself or my family by choosing to find happiness in the life that I have right now? I can’t see why that would bother them.
Last year my children entered school after homeschooling their entire lives, and shared some of their observations with me. One dd said that she learned that it’s not considered cool to have a good attitude – she was struck by the pervasive negativity in conversations that she heard taking place every day. I told her then, it’s not just high school girls – it seems more socially acceptable to grumble and complain, and in some ways seems people prefer it that way. It’s common and it’s predictable and that makes it comfortable for listeners.
I don’t talk about my expectations for Yirmiyahu. Not here (other than my recent comment that we expect him to live an independent and productive life as an adult) and not in real life. That’s because I’m not interested in hearing that it’s not possible. When professionals (to date that includes doctors, a social worker, and a physical therapist) have told me about what to expect – even what they intended as encouragement was negative – I’ve kept quiet and nod my head to acknowledge that I hear them. Then I continue believing that things can be better than their predictions and looking for encouragement from those who are further down the path that I hope to take. And fortunately, those people do exist!
If you’re going to share your dreams, it has to be with others who can support you, who can believe in what you believe in. You have to guard your dreams from ‘dream stealers’ – people who for whatever reason will pull you down and tell you it’s for your own good.
A couple of days ago I was finally able to schedule an appointment at the Feuerstein Institute in Jerusalem for an evaluation for Yirmiyahu. It was so nice to hear someone – who has years of experience working with children with Down syndrome- talk about how bright they are, how capable, about all they can accomplish – and how critical it is to actively and consistently support them to enable them to overcome the challenges that come along with their extra chromosome. I wasn’t told, ‘It’s nice that you’re so idealistic, but you really should understand all the limitations of a child with Downs.’ Not at all. What I was told is that belief in our children is a major part of their success.
I’m reminded of a story of a student asked to write his life goals as part of a school assignment. He got very into it and wrote a detailed plan for the ranch he would own, etc – when it came back, the teacher had given him a failing grade. She told him, ‘You’re the son of migrant workers- there’s no way you can ever accomplish this. It’s totally unrealistic. Rewrite your paper to have goals that are more in line with who you are, and then you’ll be able to get an A.” The boy took back his paper and said, “You keep your A, and I’ll keep my dream.” This story was shared years later by a wealthy man living on his own ranch, living out the details he had penned so many years before – the boy who refused to sell his dreams short.
Those who think I’m naive, unrealistic, that I’ll change my tune when my son gets older – I know you mean well and I appreciate your concern. Nonetheless, you can have your reality and I’ll keep my dreams.