Published in


With Author’s commentary


In 4 Parts

The Parent’s Rights listed below came from REACH OUT AND TEACH, a parent handbook distributed by the American Foundation for the Blind. Although written for parents with young blind children, these guidelines speak to ALL parents. They help us to maintain a healthy perspective, especially when working with professionals such as our child’s teacher(s) or doctor(s). And, as I have found, at the end of the day, the age of the loved one doesn’t matter. The work doesn’t end till the end. For some, maybe even beyond.

Wendy (Mom) and Leila Sailing Away, Photo Owned by Author

7. THE RIGHT TO BE A PARENT — You and your child need time to fool around, giggle, tell stories, laugh, and just do nothing. Those times are just as much a part of your child’s education as the time you spend following the activities in any book.

Author: Every day life helps with this, cooking, cleaning, bathing, swimming, etc. Also, siblings help, games help, singing helps, family events help. Finding out what SHE likes to do and making it possible for her to do those things. That brings me joy. My daughter has a very infectious giggle - I keep telling her that she can be replaced by a laugh track. It just makes her laugh harder! That pleases me greatly as her parent.

8. THE RIGHT TO BE UNENTHUSIASTIC — Sometimes you feel sad, or you’re worried about money or your child, or you feel sick. If other people take that as a sign that you’re “not adjusting” or that you’re “not accepting your child’s handicap” that is their problem. You have a right to be “up” sometimes and “down” others.

Author: This is just a normal part of life. The grief cycle for me is remains nearby. I have to go through it over and over again. But I don’t stay there. There are times when I don’t recognize something and either don’t act, or take action in a way that doesn’t work. I’m not always right, but take right action more times than not, at least in my opinion. It’s difficult to deny Down syndrome. The characteristics are usually obvious. But there is a range of these characteristics and abilities on a long continuum. No person with this chromosomal abnormality is really like another. I dislike comparisons. I don’t “accept” a number of them.

9. THE RIGHT TO BE ANNOYED WITH YOUR CHILD — There are days when you like your child and days when you don’t, but that does not mean that you don’t love her. Handicapped children are just as capable of being ornery as other children, and they should be disciplined.

Author: Absolutely! I did my best to treat Leila as her siblings. She got more attention because she needed more, but she had to finish what she started, there was yelling, some spanking (it really did hurt me more that it hurt her — she had a tough rear end and I would break a blood vessel in my finger!). It could be difficult to get her attention and keep her safe. Every now and then I would get the call from the tennis club across the street saying “Leila is outside the pool gate, come and get her.” Fortunately, the gate was high, heavy, and well latched. There was discipline attached to those occurrences. She had no notion how scary that was for me.

The Parent’s Rights (12 in all) article was published by me as an editor of SHARING in the March 1987 edition, the newsletter of the “SHARING” Down Syndrome Parent Support Group, which I co-founded in 1983.

The Logo for “Sharing” Appearing on the Newsletters

Take a look at PARENTS RIGHTS, Section 1 and Section 2, and Section 4



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Wendy Weber

Wendy Weber

Longtime lyricist-composer of customized songs, harmony specialist, energy healer, backyard farmer, innovative cook, mother, and member of a 2-parrot flock.