Today I read a letter to the editor in Mishpacha magazine (Dec. 7 issue) regarding a Q&A session at the Agudah Convention. The letter writer admits to being confused by the answers of the panelists to the questions presented – again and again the answers didn’t seem to specifically address the question that was asked.
For example, when asked about letting a child go to a Super Bowl party, the response was about creating warmth, love and joy in the family. The panelists didn’t seem in touch with the questioners.
He went on to say that he was later struck by the realization that it wasn’t the panelists who didn’t understand the question. They had deep insight into what the core issues were that were behind the questions and their answers reflected that understanding. He stated the problem was the questioners didn’t understand their own problems.
Not long ago the parent of a young child with Trisomy 21 called me. She had questions about how to further her child’s development, and wanted to get specifics on my curriculum for ds4. I told her I’d be happy to share my perspective with her but wanted her to first understand that my approach is one of integration, and doesn’t look ‘schooly’; I don’t have a curriculum for him. She said she’d still be interested in coming to visit with her son to speak with me.
She brought her cute little guy over and we settled in to chat. After about an hour, she said in frustration, “I see your son is doing well but you’re not telling me anything specifically that would be helpful.” I was nonplussed for a moment.
For an hour I had shared with her books I read, taken them out and offered to loan them to her, shown her Yirmi’s flashcards and explained why and how we use them, talked about how we work on language every day, explained the process of physical development and supporting core strength before encouraging more advanced activities. I talked about mediating the world around one’s child constantly, explaining, describing, engaging him.
And most importantly I had again and again stressed that your child and his disability isn’t a problem. It simply is. Acceptance is so important. The nonverbal message to your child is that he is perfect as he is while supporting his unique needs appropriately. This is a huge, huge attitude shift that a minority of parents are able to embrace but I think is critical.
After a pause, I told her I had shared many specifics but since we defined the problem differently, she wasn’t recognizing that I had answered her questions in detail because it wasn’t what she was expecting to hear. I suggested she continue to follow the traditional therapy model since she seemed more comfortable with that. I stressed that different things work for different people and while I share what works for us, what is important is that each family finds an approach that is right for them.
She stayed another half hour and before leaving surprised me by thanking me and telling me that my approach was empowering and reassuring! She called me a week or two later and thanked me again, telling me it had given her hope and perspective, and was very calming. I was so glad she was able to absorb some of what I was really saying – a paradigm shift can take a lot of time to digest and integrate. It took me many months to come to fully embrace and understand the application of the ideas that I shared with her, and I continue to come back to it regularly and rethink how it applies in different situations.
When the panelists answered the question about attending ballgames with suggestions for strengthening the home environment, it was because they understood that kids who always want to be somewhere else is the problem, and the solution isn’t to say, “Yes, go to the game” or “No, don’t take them to the game.” The solution is to create a home environment that is warm and loving, so your home is a place your child wants to be!
When I was asked about how to get a child to walk, talk and what therapies to purse, I stressed the importance of believing in your child. Is your child okay as he is or do you think you need to fix him? What unspoken beliefs are you raising him with? The way you view your child and his disability can be part of the problem or part of the solution.
A child with Trisomy 21 is born into a world that has an abortion rate for children like him of over 90% (and quickly rising with the advancement of earlier and more accurate testing) – the birth of a baby with T21 is widely seen as a tragedy. He is surrounded by the non-verbal message that he isn’t enough, that he is defective. It’s a world of judgment and this judgement is the reality that our children face almost every time someone looks at them and recognizes their diagnosis by their features.
In our home, I want the formative messages to affirm my son’s worth and value, to build a sense in him of his wonderfulness! This is what I consider to be the critical foundation that all further supportive actions are based on.