With Author’s commentary
PARENT’S RIGHTS, Section 4
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.
10. THE RIGHT TO TIME OFF — You need time to yourself, time with your spouse or partner and other adult family members, and just plain time without kids. There are many parts to your life, and each deserves as much attention and nurturing as does your handicapped child.
Author: This is really hard for most women to do. I can’t speak for the men. We’ve been taught to give, give, give, give… and not how to receive. It was decades into adulthood when I learned about the need to receive. I didn’t know how to do it. This includes creating time off for myself without guilt. Even today I have to remind myself to receive compliments and help graciously, and just say “thank you”.
Since I was a stay-at-home mom I was able to work on projects, do the volunteer work for the benefit of others. I went to meetings to benefit my daughter and the gleanings from these meetings also benefited others. Knowledge is often, not always, power. I never had, and still don’t have, time to implement everything I have learned.
Fortunately, I was able to make time take some classes for me. The adult B’nai Mitzvah class that resulted in a group Bar/Bat Mitzvah at my synagogue led to an accomplishment I wasn’t ready to do at the age of 13. It also led me to sing in the temple choir, which was a great joy and I credit with keeping me from jumping off the proverbial cliff. In addition, I learned to chant Torah. In the end all this led me to be able to work with my daughter Leila, who happens to have Down syndrome, during the two years leading up to her Bat Mitzvah, an intensive effort requiring an enormous amount of repetition and patience - on both our parts. Was it worth it? Oh my gosh, was it ever!
11. THE RIGHT TO BE THE EXPERT-IN-CHARGE — You know your child better than anyone else. Teachers come and go, but YOU are the expert with the experience and first-hand knowledge about your child. and, as the expert, you have the right to be in charge of your child’s educational, social, and medical decisions — at least until he is able to make them himself. Parents are the single most important resource that children have.
Author: This is a tricky one. There’s a difference between having expertise on teaching methods to get a result and having blinders on that the way to move ahead is the only way. Leila was in a class segregated class with two teachers who insisted that she learn phonics to learn to read. Leila wasn’t “getting” phonics. I recall fighting for certain services in her IEP (Individual Education Plan), a quasi-contract for certain therapies to which to be adhered. Someone on the “inside” let me know that that IEP wasn’t being followed, but she was afraid to speak up because she might lose her job. And I was prevented at the office from going in to observe. These teachers wore blinders, had the Need-To-Be-Right, perhaps defending the cost of their education.
Fortunately, we managed to bring Leila back to the local school through an Inclusion project of which Leila and I were a part (another story!). The teachers there were open and tried everything. Leila could memorize words and that’s how she learned to read.
12. THE RIGHT TO DIGNITY — These rights of parents really boil down to the right to be respected and treated as an equal. You expect to be neither pitied nor admired, but you do expect to be listened to and supported in a nonjudgmental way. You expect to be treated as though your child were not handicapped. And you expect the truth - from doctors, teachers, social workers and therapists, who are there to help you; from your friends and neighbors, who owe you a chance to be someone other than “parent-of-a-handicapped-child:; and from your family members, who love you.
Author: It’s interesting that circles of friends change when you get divorced or have a child with a disability. Some fall away, some new ones are gained. Your world shifts. There can be a learning curve about the disability, which is more difficult for a rare disability or illness. Then there’s the learning how to navigate the medical, governmental, and school systems. Religious institutions can be open or have their own barriers.
By the time Leila got to public school I had a lot more expertise and usually, but not always, was treated as if I had a legitimate say in what goes on as a thinking, discriminating, knowledgeable, loving parent. I think in all of Leila’s 41 years I missed only one IEP (Individual Education Plan) meeting. When I was working I got permission to take lunch at the meeting time so I could participate over the phone. I didn’t always have something to say, but at least was a witness to the discussion among the paid professionals who made up the team for Leila’s benefit. I was always there to agree, ask questions, if needed, and to sign off. To do any less would make me feel I had neglected my duty.
As my goal was always to seek the best I could for my daughter, to give her the most choices possible, to help her reach whatever potential she had, which no one could predict, I participated with as much love and understanding, and grit as I could muster. And I expected others to respect that.
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.
Check out PARENT’S RIGHTS Section 1, Section 2, and Section 3
