>>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.
Avivah
I like your style.
Thank you for this wonderful bit of inspiration that I will apply to a completely different situation (but same principles at play!). I think I’m going to write your last line on a piece of paper and put it somewhere I’ll see it every day- what a great thought, what a great way to live! Thanks again and enjoy living your dreams!!
Avivah,
While you are definitely entitled to your dreams and aspirations, in defense of those you quoted, you ASKED in your post for people’s opinions. Look at the title of your post and look at the last line, and then maybe you’ll understand why people wrote what they did. While it’s true that “someone” wrote her post before you asked that, the other person you quoted wrote it in response to what seemed like you asking mothers who have experience with T21 for their take on what you wrote.
May all your dreams for Yirmiyahu (and all your children) be fulfilled.
Amen.
I wanted to write something along these lines as an addendum to my post yesterday.
At some level as a parent you _must_ be intentionally unrealistic, in order to be a good parent and support your children’s dreams.
And at some level you _must_ expect to be disappointed, simply because if you’ve been a good parent your children will end up living _their_ dreams, not yours.
IMHO you shouldn’t be realistic about Yirmiyahu’s potential, even as you are being very realistic about what you need to do right now to help him achieve his potential.
Right now I am living in a state that I call ‘cognizant denial’. I am aware of the very real issues that come with Down Syndrome. I am spending time studying and preparing for the positive support things that I expect to need (sign language, mediated learning, flash cards, exercise stimulation,, etc.)
-Jon
More power to ya!
Thanks Avivah! Thanks for being you!
so true! my child is in a special ed, they work hard to bring her to her potential. i can’t compare it to a regular school where they see the bad and what is wrong with the child. kids pick up the vibes from people. as soon as my child stepped into the special ed school we saw a major difference
“Nonetheless, you can have your reality and I’ll keep my dreams.”
Shame you can’t see me standing up at my computer and applauding, Avivah! Thank you so much for this post – I had one of those days that seem designed to test every bit of resolve and all the reserves of patience, tenacity and strength that we posses… you know the ones, I’m sure…. and to log in read this was just what I needed in order to be able to get up tomorrow and do it all over again !
You do as any great mother would. You strive for each of your children to be the best they can be. There is nothing more noble than this. I admire and support you for all your efforts. I hope you continue along this path with your positive spirit that all children deserve!
I am so sorry for the comments I made before. Seriously.
I just want to say that I wasn’t trying to deny your hopes, crush your dreams, etc. Yes, everyone wants the absolute best for their child, and in general. Maybe I’m a bit too pessimistic, because of past disappointments, that I would rather not have such high expectations and then get crushed when reality doesn’t live up to that. But expectations and dreams are two different things. I say- dream high, aim high, strive for the best, but when it comes down to it, be realistic about your expectations, so that if you don’t “reach the stars”, you won’t feel crushed about where you ended up, but happy to have gotten there.
I’m sure you’re this way, because of everything you’ve written on your blog in the past. You’re realistic, while at the same time, having dreams. I just wasn’t picking up on that aspect in your previous post.
P.S. I think what rubbed me the wrong way was your title of your previous post- “Downs Syndrome, Our Special Gift” or something like that, making it seem like the fact that the downs syndrome itself is a special gift you’re glad to have… Saying “We love our son, we appreciate him, we consider him a gift, and the fact that he has downs syndrome doesn’t make us appreciate/love him/consider him any less of a gift” wouldn’t have caused any controversy, I’m sure. But saying that davka the disability is a gift is something that rubs me the wrong way. And I was discussing this post with a friend who is disabled, and she also took issue with that aspect. She said when someone goes through something, they can decide if that challenge is a special gift, etc… but its not an outsider’s place to say that they appreciate someone else’s disability, and yes, a mom is an “outsider” in that sense- its not her place to say whether or not the disability is a gift.
Thank you, Sarah.
Did your friend read what I wrote or comment based on your interpretation? I’m not always successful, but I do try to be precise about the way I express myself. (Though I already said that I didn’t convey well the subtleties of what I was trying to share regarding the silver lining of T21.) I don’t think it’s presumptuous or inappropriate for a mother to share her perspective regarding her experience; that’s not speaking for the child and his experience. For Yirmiyahu, I wish he didn’t have to grow up with this, his life would be much easier. And for myself, it would be easier if he didn’t have T21. But since he does, I can see the gift in the situation.
She read the posts themselves and my responses, etc… and she was bothered by the posts, not my interpretation….
this post literally gave me chills- once again you have managed to totally inspire me! thank you for reminding me to hold tight to my dreams!!!