I have been putting a lot of energy into better ways to help Jacob lately. It seems as though things have been lagging with his progress, and quite frankly I've been exhausted and frustrated with him at home. His parent teacher conference was no help, I felt like I was being told the whole time that my child is hopeless. Now I know that's not true. With the little experience I have, I know there are many children who are a lot worse than he is. Most of the time I think he is an extra troublesome case because he is so close to being a typcial child, but so far away at the same time. While he remains undiagnosed at this time, it is clear that he fits onto the autism spectrum at least in some regards. We have been working with doctors to figure out what is going on with him and we hope to have some answers soon. I can't stress enough how little we care about labeling him. Our only concern is helping him and how to do that better.
Austin and I went to a support group meeting last night for parents of children with high functioning autism and related disorders. It was our second time attending and I think it's safe to say we will be returning. Not only do we get to mingle with other parents who are struggling with the same problems we are, but Jacob gets the chance to socialize as well. The really great thing about this group is the guest speakers they invite. Both meetings we went to had great speakers who were very informative on intervention techniques. Last night, we heard from a physician that specializes in naturopathic medicine to help children who are on the autism spectrum. What we learned was invaluable. I mean, I've heard before about the gluten-free casein-free diet helping children with autism, but no one has explained to me why or how that happens. That's exactly what this guy did. The whole meeting felt like a bio chem lecture, but it was such good information that made everything make sense.
I'm not going into the science of everything because that would be exhausting and I would surely not explain it well, but I will say that Austin and I had a long talk after the meeting and decided that we should give it a go. That resolution only magnified as I got to doing my own research and found so many success stories from parents of children just like Jacob. Some of them even achieved normal functioning after a few months of being on the diet.
Today I started off by asking Jacob if he would like to be able to talk to us better and make friends at school. He got teary eyed as he answered me with an affirmative "Yes". (This just about broke my heart, we don't have talks that go so well very often). I explained to him that we were going to start eating some different foods that might help with that and asked if he was willing to try. I know this isn't going to be easy. Jacob is a very food-driven child and he is already as picky as humanly possible. I am worried about the struggles we will face in the coming weeks with such a drastic change, but if there's a chance it will help him, I'd do just about anything.
So here starts our journey. I have been researching (and getting overwhelmed) all day long and tonight I'm going to brave a few health food stores to see what I can find. Excuse me as I fill up your Pinterest homepage with a ton of GFCF recipes.
If you would like more information on the GFCF diet, I strongly encourage you to visit this website- http://www.tacanow.org/tag/gfcf/
I also want to give thanks-in-advance to all our family and friends for supporting us in this endeavor!
Showing posts with label Family. Show all posts
Showing posts with label Family. Show all posts
Friday, February 1, 2013
Thursday, May 31, 2012
Special According to Who?
There have been many aspects of my life that I think have helped me to be a more open-minded person. The influence of having an older brother with Down syndrome is probably the most significant of these. From a very young age, I was taught that diversity is to be embraced and loved, not feared. I was taught that differences should be celebrated instead of compared. Above all else, I learned that people often reject what they do not understand. Many of these were very hurtful lessons to learn and they usually stemmed from my lack of understanding regarding why someone looked at/treated/spoke about my brother in a certain way.
I still remember the day I noticed Danny was different than everyone else and I remember asking my mom about it. In that moment, I think she said the best thing she could have possibly said. She explained to me that he had some challenges that other people don't have to deal with, but that he had some gifts that were special as well. She told me this was the same for everyone, although it's not usually something you can tell just by looking. I truly believe that was a life changing moment for me.
My whole childhood and into our adult lives, people (including my own parents) have commented on the way I treat my brother. The most common report I received when were were little was that we behaved like regular siblings. More often than not, this was said with surprise. Yes, it came as a surprise to people that I fought with him, played with him, and otherwise ignored his disability all together. Some people even scolded me for it, while others commended me. To this day, this still baffles me.
As a child, I was definitely less sensitive to the reality that Danny needs more patience than I was willing to give- but that's a common way for children to treat each other. As an adult, I still treat him the way I do everyone else, although I like to think I'm a little more tuned in to the patience he needs with understanding certain concepts, as well as accommodations for medical needs. People are still surprised by this, which continues to surprise me even more.
More than once, my treatment of my brother has been interpreted as "mean" because I failed to give him special attention in a situation where he did not need it. For example, at one of my son's birthday parties, I was asked why I didn't get a gift bag for him. My answer was simple, the gift bags were for the children, and he is an adult. If I singled out any other adult to give a gift bag, would that not be viewed as condescending to that person? I absolutely think so.
I think people who try too hard to be empathetic, or accepting, end up doing the exact opposite by providing too much special attention. In my eyes, this is condescending. Ostracizing or glorifying someone, you are providing the same result by making him or her stand out in one direction or the other.
Do I love my brother and want the best for him? Absolutely. Do I think my brother is special? You bet I do! But I find special qualities in all of my loved ones, and I hardly think his Down syndrome defines him. He is so much more than a person with a disability, and people who are too caught up in trying so hard to "be fair" or "accept" him are not seeing him for himself.
I'm not going to like it if you tell me Danny is "cute" when he is being stubborn. He's 26 years old. If you are going to use the word "cute" to describe him, you better be telling me that you think he is attractive; not talking about him as if he were a toddler.
Danny is stubborn as a mule, and frustratingly so at times. He is also an artist, a music and movie buff, a ladies man, and he has a wonderful sense of humor. He is loyal to his family, and can be sensitive as well. Bottom line, he is a person. I will continue to treat him as fairly as possible, and I hope others can do the same- for everyone. I will be the first to admit that I am not perfect, but I have good intentions. Humans are judgmental creatures. Everyone deals with it personally, and maybe we can do each other a favor by trying to find that balance between doing too little and too much to help each other out.
I still remember the day I noticed Danny was different than everyone else and I remember asking my mom about it. In that moment, I think she said the best thing she could have possibly said. She explained to me that he had some challenges that other people don't have to deal with, but that he had some gifts that were special as well. She told me this was the same for everyone, although it's not usually something you can tell just by looking. I truly believe that was a life changing moment for me.
My whole childhood and into our adult lives, people (including my own parents) have commented on the way I treat my brother. The most common report I received when were were little was that we behaved like regular siblings. More often than not, this was said with surprise. Yes, it came as a surprise to people that I fought with him, played with him, and otherwise ignored his disability all together. Some people even scolded me for it, while others commended me. To this day, this still baffles me.
As a child, I was definitely less sensitive to the reality that Danny needs more patience than I was willing to give- but that's a common way for children to treat each other. As an adult, I still treat him the way I do everyone else, although I like to think I'm a little more tuned in to the patience he needs with understanding certain concepts, as well as accommodations for medical needs. People are still surprised by this, which continues to surprise me even more.
More than once, my treatment of my brother has been interpreted as "mean" because I failed to give him special attention in a situation where he did not need it. For example, at one of my son's birthday parties, I was asked why I didn't get a gift bag for him. My answer was simple, the gift bags were for the children, and he is an adult. If I singled out any other adult to give a gift bag, would that not be viewed as condescending to that person? I absolutely think so.
This has made me very passionate about the idea of equality. I think a lot of people misinterpret equality as special treatment for people who are disadvantaged. That is not equality at all! Equality, by definition, means the state or quality of being equal; correspondence inquantity, degree, value, rank, or ability (Dictionary.com). Obviously, we need to take into consideration that ALL humans, by nature, are different. Therefore, we are all only treated equally to some extent. There are varying levels, especially when an individual's abilities are taken into account.
I think people who try too hard to be empathetic, or accepting, end up doing the exact opposite by providing too much special attention. In my eyes, this is condescending. Ostracizing or glorifying someone, you are providing the same result by making him or her stand out in one direction or the other.
Do I love my brother and want the best for him? Absolutely. Do I think my brother is special? You bet I do! But I find special qualities in all of my loved ones, and I hardly think his Down syndrome defines him. He is so much more than a person with a disability, and people who are too caught up in trying so hard to "be fair" or "accept" him are not seeing him for himself.
I'm not going to like it if you tell me Danny is "cute" when he is being stubborn. He's 26 years old. If you are going to use the word "cute" to describe him, you better be telling me that you think he is attractive; not talking about him as if he were a toddler.
Danny is stubborn as a mule, and frustratingly so at times. He is also an artist, a music and movie buff, a ladies man, and he has a wonderful sense of humor. He is loyal to his family, and can be sensitive as well. Bottom line, he is a person. I will continue to treat him as fairly as possible, and I hope others can do the same- for everyone. I will be the first to admit that I am not perfect, but I have good intentions. Humans are judgmental creatures. Everyone deals with it personally, and maybe we can do each other a favor by trying to find that balance between doing too little and too much to help each other out.
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