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Understanding the question that wasn’t asked

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.

Avivah

14 thoughts on “Understanding the question that wasn’t asked

    1. Amen! And sharing the blessing you gave back to all my readers – may we all be blessed to give this to all of our children!

  1. Avivah,

    What wisdom you share!

    I was reading this & thinking that if I had a child with T21 I’d want to know specifically which materials you use for the activities you described here:

    “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.”

    So I wondered if you’d consider sharing the books you read, the flash cards you use, the language development activities, the core strength activities, etc.?

    I’ll bet that’d be really helpful to some parents out there if you were able to add that info?

    Take care Avivah!
    Kelly (West Michigan, USA)

    1. Thanks for your comment and suggestion, Kelly!

      I think I’ll write a different post sharing about some of these things. I’ve done a past post listing a bunch of the things we do, so I’ll detail it more with a specific post for each suggestion. This woman wasn’t interested in any of the things that we do but you’re right, there will be others reading who will want to know more!

  2. I have in recent years noticed a pattern with myself where I felt I I had been very articulate and sensitive on certain topics and my points are completely not heard by the people with whom I am communicating with. I figured that I have to be the common denominator and have tried to think through what to do differently. I asked a very wise rav about a particular issue. To make it easier on some relatives who were sad about our Aliyah plans, it was suggested to me to tell them that we will try living in Israel and if it doesn’t work out we will come back. I was not comfortable with this because truth is very important to me. This rav said that I need to judge what each person can hear. This was a bit of a paradigm shift for me. Although I think I do realize this, it is easy to forget that someone could be in such a different mental and emotional world, that he/she really cannot absorb certain other perspectives. I try to approach this now with much more patience, and see that little seeds are planted when I share in more strategic ways keeping in mind what it seems the other person can “hear” at that time.

    1. I try very much before answering questions to get a sense of what the concern is and what a person can hear. I spent a lot of time after this conversation thinking about what I could have said differently/how I could have said it differently.

      As you said, sometimes the seeds are planted and in the moment of the conversation a person isn’t able to process what is said but with some time, it settles in and is able to be processed. What I recognized in this situation afterward is that there was a lot of fear/uncertainty and it blocked receptivity.

      If I were to have this same conversation, I would spend more time letting her talk about her concerns so she felt more heard. (I had spent a lot of time on the phone doing this when we initially spoke so we didn’t spend so much time on it a couple of days later in person.)

      1. I’ve been thinking about this post a lot …It reminds me of when I first started homeschooling…I wanted all the details of anyone who had seen success …I wanted to do exactly what they did! I think this comes from being new to a situation and lacking the confidence to think you can succeed. Of course, over time, i’ve learned its a lot less about the curriculum and the schedule as much as it is about the environment ….which I think is similar to what you posted here. I hope that the person who you were talking to will be come more comfortable with her new found path …and your ideas of creating the right environment will sink in! Kol hakavod :)

        1. Very insightful, R. I had the same feeling after Yirmi was born (and also when I started homeschooling!) – I think it’s pretty typical when everything is new and unfamiliar to feel overwhelmed and want someone to hand you a detailed roadmap!

          I agree with your comment about the environment and will say it’s also applicable in an even more global way- that parenting is much more about who we are to our children than what we do.

  3. So funny, I was thinking after posting about what you just wrote, and that she really did absorb what you were saying and needed that time to work it through.
    It is amazing how you give this time to so many people. It is beautiful to imagine how many lives you have impacted both directly and from trickle effects of people connected to those people (me and my family included :), truly inspiring!

    1. I try to help when I can, and I also try to create healthy boundaries around my time so that my family can be the main recipients of my time. It’s really important to me that they don’t feel I’m so busy helping everyone else that I’m not present for them.

      Thanks for sharing that you’ve been positively impacted; I’m so glad to hear that!

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