Thursday, February 12, 2009

Down syndrome: High Expectations

Mothering By the Seat of my Pants wrote the following comment:
"So many parents say Ds really isn't that big of deal, that our kids can do the same thing as everyone else--it just takes longer, etc. I want to believe that, but the truth is, when I look around, I see a lot people with Ds for whom this does not seem to be the case. Trying to be optimistic and realistic can be hard sometimes."
I think that what Chris has written here will ring true for any of us who have special needs children, especially with Down syndrome. I'd like to add a few comments.

Many times we, as parents, are faced with a public that doubts the ability of our children to do anything beyond the most basic level, if even that. We ourselves may have once viewed "those kids" in the same way. As our children grow, they surprise us, and those around us, with their abilities, accomplishments, perseverance, and sense of humor. We are often led to really think that our children can “do anything”. Indeed, we need to have confidence in our offspring’s ability to absorb new knowledge, and to learn to act on it.
Yet, and although I hate to say it, there are limits, in a practical world. Perhaps if we bombard our child 22 hours a day with enrichment opportunities, and push them to their fullest, they can accomplish more. But at what price?
I am NOT saying to not push and expect. However, let us ask ourselves a few questions:
1. Am I wrecking my relationships with other family members because I am involved in this child all of my waking hours?
2. Am I giving my child the message that he is only worthwhile if he is a star, an exceptional child?
3. Does my child have fun and friends in his life?

If you can answer all the above suitably, than you are OK. If not, you need to ask yourself if you can learn to love your child even though he is not perfect.

The fine line between “high expectations” and unrealistic ones is a very fine one. To find that line requires honesty. But it is essential to do so.
By all means, expect your child to achieve. But prepare your heart for the possibility that someday he will not learn certain things. Your job is to give your child the opportunities he needs to be independent, and happy in life. Your job is to help him learn. The results are not in your hands, but (at least in my belief) in G-d’s.


Terri said...

Oh, you are so right! I think we absolutely must accept our children AND hold high expectations. Many people seem to believe that 'high expectations' means relentlessly preparing them for Harvard and 'acceptance' means putting up with a substandard life for them. I do not accept those two extremes!

CJ Field said...

I agree with Terri. You are very, very right. There is a very fine line and as a parent, it certainly is a tainted dance we partake in!

I wanted to let you know about the T21 Travelling Afghan Project! I hope you will consider participating and I would appreciate it if you could help spread the word! Thanks!

Batya said...

This goes for all of our kids. How much to push, nudge, encourage or just laugh off?

Debbie @ Three Weddings said...

We don't want to put limits on any of our children, special needs or not, and yet, we know they will not always do all we or they want. I want to dance, but I have no rythm. I just don't have what it takes. :) Recently I wrote a post about my Peanut and her inability to use verbal speech. She's 4. I realize there is still a lot of hope, but it makes you think: At what point do we stop pushing our children and accept what is? You don't want to give up too soon, but you don't want to harm your child by expecting something they are simply not capable of. The best we can do is let them try and not put unneccesary obstacles out there for them.

rickismom said...

Anyway, as regards when to realistically "give up" on speech. First, if she is not speaking AT ALL by age four, I would look into some form of alternative communication. (If you haven't done so already.) Perhaps signing. She needs to be able to communicate.
I don't think that I would ever give up trying with speech--at least not for several more years. The important thing would be to make speech sessions FUN, and to give her opportunities to succeed in speech therapy too with signing, or whatever. If you suspect that her therapists are not up to par, get her evaluated by an expert.
In general, not giving up and accepting is more about how you go about studying things. Its the underlying attitude and feelings. (Which, believe me, your child reads very well!)

Chris said...

I have been meaning to respond to this post since the day you wrote it, but just wasn't sure if
I could express all that I was feeling, so I will just say thank you. Thank you for understanding. Thank you for being honest. Thank you for the wisdom your experience brings. I think I sometimes focus to much on preparing my heart for all of the things he might never do. I think I want to prepare my heart now so it won't be broken then...pointless I know...especially in some cases the "then" may never happen.

rickismom said...

Chris, unfortunately you can not "prepare" your heart. Sometimes realizing your child's limitations is like hitting a brick wall. THAT, I think, is one of the reasons that having a child with Down syndrome (despite all the joys and enrichment of the experience)is a "challenge".