Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Friday, July 23, 2010

Homeschooling, Socializing, Food Intolerances and People ~ Some Notes

This is what Pooh would call a complaining song, but these things need to be acknowledged, especially given the difficulties in teaching social subtleties to a child like Butterfly, to help her cope in a community that's often less than informed.


On Homeschooling

Some people found it necessary to offer an opinion on this, despite knowing little of us, nothing of Butterfly's challenges, and even less about homeschooling. One woman even told me that the government would take my child away if I didn't put her in school. There's a lot of ignorance out there, and it always has a mouth. Do your own thorough research on matters important to your family. Opinions are very easy to come by and are often concocted at a safe, uninformed distance. I like to think most of us want the facts. From my perspective, this is my kid, and I want what's best for her.


On Learning Difficulties

A couple of people in town told me they don't believe in them. I guess that was supposed to influence me somehow. I thanked them for sharing. Again, so easy to have an opinion when you know nothing about it and don't have to deal with the challenges close up, 24/7. I had to help Butterfly learn and cope in this world, so I had to be more responsible and better informed than that.

There will always be some things Butterfly can't do because her brain just doesn't work that way. I will never forget the day one woman decided to teach Butterfly how to tell time on a clock face in the five minutes she had to spare. She had been told Bud needed a digital watch to tell time because she couldn't do clock face. I guess this woman thought she'd show me up by teaching Butterfly something I hadn't been able to. She seemed to think it was my fault when she couldn't. People can be just mystifying.


On Socializing:

Some people insisted that Butterfly should have been in school to socialize with the other kids. Um, kids don't really go to school to socialize. In fact, unless school has changed an awful lot since I went, kids who socialize too much in class get into trouble. Is what goes on in the school yard really considered a good social education these days?

Ok, Butterfly may have met more kids in school, but I'm not sure this would have helped. From the kids who treated her badly, to the kids who were invited and expected for celebrations, but didn't show, Bud just didn't have a lot of luck with "friends." Now, the no-show people weren't being mean or anything. The one family called to cancel at the last minute because of a family emergency. That was just unfortunate for everyone. And another mom couldn't help that her ex had kept the kids an extra day. The phone rang; she apologized. What could she do? The thing is, for one good reason or another, the phone rang often, each time a shattering disappointment for Butterfly. I had hoped my child would learn that friends were people you could count on, but she was learning the very opposite.

She was pals with the girl next door for years, but she and her family were seasonal visiters and visits were spotty at best. They spoke on the computer for awhile when they got bigger, but after Bud happened to mention her autism one evening, the other girl suddenly didn't want to know her anymore. Bud no longer talks about her challenges with "friends." Call me terribly old fashioned, but in my day, "friends" were people you could confide in. I guess things are different now.

I decided to leave it alone. I figured out there are worse things than growing up without a gaggle of friends. When she did have successful events, she usually wound up exhausted, confused and even crying. So yeah, I went with "just leave it alone." The fewer the friends, the fewer the agonizing disappointments.


Butterfly and her friends


On Food Intolerances:

"Just a little." Famous last words from people who just didn't understand that a little of anything Butterfly couldn't have was just as bad as a lot of it. The amount made no difference. If a substance caused a reaction, it only took a wee bit to do it. What's difficult?

We were visiting a cousin of my mom's and she brought out a platter of cookies. She offered some to Butterfly, whereupon I quickly explained that Bud couldn't have any. She asked why not. Actually, she rather demanded, "why not!?" I explained Butterfly's wheat intolerance. She argued that the cookies were made with "just plain white flour." I'm not very often rendered speechless, but I just stared at her. I couldn't imagine what she thought "plain white flour" was made of. Fortunately my mom intervened and patiently explained that white, all purpose flour is made with processed wheat. Ok, maybe some people don't know that because they've never given it much thought. But why do people get upset when you can't eat their food?

There are many more stories I could relate about social events we attended that went all strange over food and refreshments. Some amusing, most not. It was never that we couldn't manage. I always carried supplies for Butterfly ~ unsweetened fruit juice drinkin' boxes and snack food. And it wasn't that I expected others to remember Bud's food intolerances. I only wanted them to understand that we had to be concerned about them when the food was served. Seemed simple enough to me, but I guess that's just me. There's a lack of understanding on my part too: like I don't understand why people get upset when you can't eat their food, or why they act like we're crazy to actually think our kid has all these challenges. I've always tried to keep a sense of humour about it all, but sometimes that's difficult.

I do want to also be sure to express my admiration and deep gratitude for those who did rise to the occasion ~ those who understood and did their best to be accomodating. It's really cool and very refreshing to encounter others who think that a child's needs are more important than adult convenience and ego.

Parents of kids like mine are doing their best to figure out what foods and other substances their kids can and can't have. They're having to cope with behaviour anomalies and mercurial mood swings that are often loud, violent and frightening. They and their child(ren) are learning the best way they know how to cope with learning and living challenges, as well as the innocent child's tortured confusion about what is happening to them. This, while many of the professionals who should be helping us are busy debating the "science" of our kids' problems.

Those of the rest of you who can't give us your understanding and support, need to at least respect our "jurisdiction" over our children. If you have nothing genuinely informed to offer, then don't say anything. Platitudes are about as useful as old wives' tales and silly assumptions. An uninformed opinion is useless, so keep it. If you can't help, at least don't add to our burdens by trying to show us up, put us down, reveal the terribly obvious, or hand us nonsense. Shut it and just listen. The sound you hear is a child's heartbeat. A child who needs ~ and deserves ~ extra attention. At least we're doing our best.

2 comments:

  1. That ringing in your ears? That is me giving you a big ole standing ovation!!!

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  2. Thank you, thank you very much. ;o) I was cutting out so many paragraphs because of their negativity, I decided I better just get it off my chest. :) It isn't good to just pretend the negative stuff ain't there, because it too often is. And it leaves a mark.

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