Sunday, November 15, 2009

Words From The Wise

I found this note on a Yahoo Group that I belong to and I thought it would be great to share. Rick Dills is a father of a 36 year old daughter with DS. This is his advice when thinking about your child's educational plan.

Here are his words:

My attitude is to step back and let the combination of your child and the education system work. I don't think that it matters whether a child is in a special program, mainstreamed, or included provided that the teachers really want your child and get significant personal satisfaction from her/his success.

There is much more to life than academics or inclusive (age appropriate) social contacts.

Yes, many of the "poster children" had immense resources spent on them. Most were already among the elite with DS in that they had much more than average capability and have achieved in specific, but important areas. Each of our children is different and each is valuable whether they are "poster children" or perhaps more handicapped from the beginning than Karen Gaffney. WE ARE NOT INTO COMPETITIVE CHILD RAISING !!!!

My observation is that satisfactory adult outcomes do not correlate with how hard you have pushed your child, but rather on how you have taught them to be proud of who they are. Setting the bar too high prepares both parents and the child for failure.

If you have lots of money, you can spend it on your child in elementary school. I would recommend saving for potential post-high school training to help your child (whatever level she/he is at) to live as independent and happy a life as they can. It is just like normal kids. Private schools are OK if you have lots of money, but if that means you don't have enough for college, you have made a big mistake.

Remember that you have a life and is isn't just taking care of your handicapped daughter. My wife and I decided from the beginning not to let this be the end of our personal lives and development. Over the years I had a remarkable career, but I did find extra time for the things Jan needed. My wife went to med school when Jan was 10. The payback for that was that when Jan went through her awful life threatening years, her Mom was there and trained to help. There were times when Jan would have died, had it not been for Mom's intervention in her care.

We raised our child with the expectation that she would go on to her own life as an adult. That is where she is today and that is where most of her peers are. The few who are "poster children/adults" are doing just fine in their 30's, but so are those who simply had ordinary caring parents who didn't have the resources to make their child a public example.

See that your child is happy and developing, even if more slowly than those without Down syndrome. See that they are praised
enough to be proud of themselves. Put your energy into the places where you can provide something that the school and other programs cannot. We included Jan intensively in our lives, hiking, swimming, skiing, and in just doing the same chores her brothers had. I stepped in when programs weren't available such as being her coach in Special Olympics when there wouldn't have been a program if I didn't.

Work WITH the people whose job is to train and support your child in a teamwork fashion and not in a confrontational one. We had a major blow-out in Jan's care in the past week. It will be taken care of because there is no blame, but rather a need for different handling in the future. Mistakes happen, but you don't have to get mad.

Yes, some people won't appreciate your child when they should. Try to fix that or if necessary withdraw your child. I always felt that Jan was a gift to the world. If you didn't want that gift for some reason, you were not entitled to have it. It is the other person's loss and not Jan's.

Rick ... dad to 36 year old Jan who does have Down syndrome and is an
individual, just as your child is!

11 comments:

  1. Jennifer, that is so good and so true! I love that post. Sounds like some very wise advise.

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  2. That is the best advice I have EVER HEARD!!!!!!!!
    I have been stressed about Em going to school(I know she's only one) but I think about it all the time. Will we do the right thing, will she be happy, and on and on!
    You know what... I'm not worried anymore! this dad is soooo right!
    Do you mind if I copy this?
    Thanks so much for posting this!! it really is the BEST!

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  3. Such a great amount of information! Thank you so much for sharing that... I really needed it!

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  4. Such a nice perspective! As my son is nearing transisition to kgarten, the worry of school is definitely on my shoulders. Thanks for giving me something to think about.

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  5. I really liked reading his thoughts and learned a lot from his wisdom. I have a friend who has always said that her daughter is a gift and if others don't want to recognize her gift than it is their loss. So true!!!

    Thanks for posting this!

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  6. I think his words speak so much truth -- especially since he's been there, done that... I appreciate his insight on education.

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  7. what a great post! I am starting to consider school options for Parker and have so many feelings..this helps from someone who has "been there" Thanks for sharing!

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  8. Great advice! Your child is an individual and you need to do what is right for YOUR child, not what worked (or didn't work) for someone else.

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  9. Great advice! Thanks for sharing this great insight.

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  10. Thank you for this post. It is so helpful to have the perspective of someone further down the road. Especially the part about expecting everything and accepting everything as long as it's their best.

    Love your blog. Your boys are wonderful

    Sally

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