Friday, February 7, 2014

Reasonable Accommodation {Ketogenic Diet}



rea·son·a·ble

[ree-zuh-nuh-buhl, ] 
adjective
1.
agreeable to reason or sound judgment; logical: a reasonable choice for chairman.
2.
not exceeding the limit prescribed by reason; not excessive: reasonable terms.
3.
moderate, especially in price; not expensive: The coat was reasonable but not cheap.
4.
endowed with reason.
5.
capable of rational behavior, decision, etc.

Old pictures that have nothing to do with this post
 What exactly is reasonable accommodation?
 Here in the United states we have the Americans With Disabilities Act. As usual for a US law this is a huge complicated piece of legislation, but in short it prevents discrimination in daily activities for people with disabilities. This is the main law that mandates handicapped parking and being allowed to bring service animals in public places among many other things. It has led to a whole bunch of State laws mandating exactly how the main law is to be implemented. The two main points of contention seem to be what exactly constitutes a disability and what exactly is reasonable accommodation. 
Why am I bringing this up now? Well, I've had a whole bunch of things that relate to this brought to my attention in the last several weeks and it's been on my mind a lot. First there was THIS article about a Mom (in Canada, not the US, but similar things have happened here) who wants an entire school to be dairy and egg free because her daughter has allergies. In a way, she has a point, the school is already nut free due to allergies, why should her daughter's allergies be any less important? This story reminded me of one I'd heard about here in the States where a Mom wanted the school to cut down it's oak trees because her kids had nut allergies. Now, our disabilities act says that schools and other public places must accommodate disabilities, so the question is what exactly is reasonable as far as accommodation? I personally feel that asking an entire school to be nut free let alone dairy and egg free is going too far. Expecting 100 year old trees to be cut down because they might drop nuts that might get smashed open and might come in contact with a child is really going too far. But, at the same time, as a parent of a child with disabilities I totally get wanting to have a safe environment for your child. 
I hear from Keto parents all the time  about all the things their children are exposed to at school and daycare that could be dangerous to them. I would be scared to death to send Owen to school on his diet. One of our last seizures happened after he drew on himself with marker. Markers contain glycerin and alcohol which break down into carbohydrates. I would never expect that a school ban markers because they could be harmful to Owen however. I feel that would be unreasonable for all the other kids. Owen can not have any food AT ALL that isn't calculated into his meal plan and weighed out to the nearest 1/10 of a gram. I would never expect that other kids not have food around him, I would expect that an adult was present to monitor Owen around food though. I hate just as much as anyone to have my child singled out as weird or different. Eating at a different table from other kids at lunch might be an appropriate accommodation for him though. Unfortunately, he does have different needs than most kids and that sucks, but it is something he has to live with. 
That said, sometimes Owen does need accommodations to participate in activities that other kids his age do. For us it has mostly been about food. Many places don't allow outside food and drink, usually so they can force you to buy their overpriced stuff. Owen can't go to a ballgame or an amusement park and eat or drink ANYTHING there (except for water). Even if a food might be approved on his diet, it has to be weighed and measured carefully to get the proper ratio and calorie counts. He can't just eat Hormel pepperoni because it is on our list, he has to have it in calculated amounts with the calculated amounts of other foods necessary to be a meal. I can't even  change brands without re doing his meal and having it approved by our dietician. This means that I need to bring all of his food and drinks with us anywhere we go. He also has to eat his meals in regular increments to avoid dangerous blood sugar drops. This means that if Owen is scheduled for a meal at 3:00 PM, he needs to eat at 3:00 PM plus or minus maybe half an hour.  So, if we wanted to go to a movie that starts at 2:00 and gets over at 4:00, we would need to feed Owen in the theater. And since there is no way to feed him theater food, we would need to bring in our own food, even if the theater doesn't allow outside food and drink. Under the ADA, this shouldn't be a problem. Some places want a doctor's note proving that it is medically necessary mainly because Owen doesn't "look" disabled obvious disabilities seem to be accommodated more readily than "hidden" ones. When he had his feeding tube, we never had a problem bringing in his food. Partially because he was young enough that bringing a bottle in didn't seem weird and partially because we could always show them  his g-tube. 
 
So, there is a local play place that a lot of Moms have been meeting at this Winter. Rod talked to the manager on duty at the time he happened to drop by and was told that Owen could not bring in his own meals since they don't allow outside food and drink except for baby formula and food. Rod explained that Owen's diet was medically prescribed and she didn't care. She still said that he would have to leave to eat. So, is it unreasonable to expect to bring in Owen's food and drink? I don't happen to think so in this case. I'm not asking that no one be able to have anything that isn't allowed on our keto diet. I'm not asking them to accommodate his diet by preparing food according to our plan for him including using specific brands. I'm more than willing to take responsibility for cleaning up his eating area. I just think that if other people are eating there it's wrong to expect Owen not to. Throw in the fact that they charge more per hour if you just stay for one hour than if you stay longer and I really wouldn't want to leave after one hour so I could feed Owen in the car. It's just really made me think a lot about accommodation and about what really is reasonable. I don't have any answers, just a lot of questions and a lot of anxiety. I don't want to keep Owen away from amusement parks, ball games, movies, shows, play areas, etc. for the next several years. We're in this for at least 2 full years and some kids are on the diet for 5 or 6 years. That's a long time to be worried about how we are going to be received everywhere we go. At the same time, I don't want to be THAT parent. You know the one, always out for a fight. The one everyone cringes from and tries to hide from because she's such a pain. The one who pushes and pushes for her kid even to the detriment of all the other kids around. I just have had a lot of thinking to do about it lately.

 

1 comment:

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