Monday

Autism Awareness - Personal Post

In honor of Autism Awareness, I thought I'd do a more personal, non-beauty post today. If this is not something you're interested in, sit tight and wait for my next post on something more along the lines of my typical blog posts.

For those of you that follow me, you may or may not know I have a younger brother that is moderately to severely special needs. He displays many of the same characteristics to the behaviors and characteristics we often associate with Autism, with the exception of the fact that he is very social. He was born when I was 10 years old (my 3rd sibling). We have no family history of anything on either side, so when he was diagnosed "Globally Developmentally Delayed" at 3, it was a shock in many ways. He was unable to talk until he was around 4--before that we didn't know if he ever would. Most early days were filled with screaming, tantrums, self-stimming, etc. It is hard to understand the family dynamic of a family like this, unless you grow up with a child or sibling that is severely special needs. Your entire family and life revolve around this one person in many ways. But at the same time, we were never bitter about it. When people stared or whispered or women walked by huffing because they assumed my brother was merely a "problem child" I shot them dirty looks right back (I was only a teen at this point lol).

We (mostly my parents and I--my other 2 siblings were too young) were all trained in ABA at home (Applied Behavior Analysis) to some degree so that we could help my brother have a consistent environment between home and school. By the time I went to college I knew I wanted to do 2 things--write and work with children that were special needs--so I pursued both :) It took years of OT, PT and Speech in addition to a number of other services to get him to where he is today. There have been some major bumps along the way (some devastating and some more typical), but life goes on and you keep pressing forward. Watching some of my much younger siblings (my parents took a break between one of my siblings and I and the rest of my much younger siblings), I often notice how much having my special needs brother as a sibling doesn't affect the way they act towards him. They invite him out to pizza with their friends, weight lift with him, take bike rides around the small town I grew up in with him, and of course fight with him ;) I'm so impressed and pleased by the way my younger siblings friends (mostly high school and college age) related to my special needs brother. They are kind, say "hey" with enthusiasm when they see him, skype with him, and even recently celebrated his birthday with him by taking him out with just the guys.

I wish the world was more like this. Thinking about the struggles we've undergone with him and continue to go through (I'm very actively involved in his education and life as he's only 19 and still in school), it makes me wonder why these young people can be so much more open and lack the prejudice and misunderstanding I often see from people my age and older.

One of my own son is currently undergoing testing for something unrelated to my brother, and I see the way certain people within my extended family, people at his school, etc. look at me when I have to explain why he's seeing so-and-so for an evaluation.

Why can't people recognize the struggle without judging it? Why can't people accept that someone is in fact "different" without it meaning someone is less of a person? My brother lives in a world that was not made for him and he works every day to adhere to its set of rules and requirements. Why can't people understand that and go about their day?

Anyway, that's a very brief window into my thoughts and experience on the subject. I wanted to do more than just sport a blue mani today (which I am), I wanted to share a little bit of my brother's story. I hope that as each generation matures and becomes adults that they'll succeed where we've failed, especially in this area. Awareness is so important, which is why a day like today is something I'm proud to take part in!

11 comments :

  1. Your post made me tear up a bit. Its a topic very near to my heart. All my love to your family, and wishes for understanding to your brother

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    1. Thank you and and warm wishes to you and your son as well :)

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  2. This is a subject near to my heart, as well - I work at a nursing facility for severely developmentally disabled children and young adults (some autistic, others a variety of other mental and physical conditions) and I see the way people react to them every day. You're right, the kids are so much more open and nonjudgemental than adults.

    We have a girl who breaks my heart - she was born healthy, but was in a bad car accident when she was a toddler and got fairly severe brain damage. She is unable to walk or speak and her growth was stunted, but she's a gorgeous girl. Most of our residents go out to school or workshop and on outings, to parks, museums, stores, etc. to provide them with stimulation and socialization. But this girl's mom does not allow her to leave the facility for any of these things because she thinks that "parading her around" in public is "embarrassing". Just breaks my heart because these kids love the outings and they get a lot out of them.

    Sorry for the long post, it just got me thinking. I appreciate this post. You're right, awareness is important!

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    1. Thanks so much for sharing and it's wonderful to meet someone working with these amazing children! Maybe someday things will be different :( Until then all we can do is try to change the common way of thinking about this topic I suppose....

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  3. Beautiful post and it is sad because in the end we are all different. We all have things we are judged for and some that we can't even discuss because of judgement. I'm glad that Autism is being acknowledged, funded and no longer ignored. It's just sad that people don't realize instead of staring and making someone feel bad you could just be kind. These children are wonderful, brilliant and caring, if you just give them a chance. Thank god you and your family are there to fight for him its not easy and really it shouldn't be a fight.

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    1. Agreed! Ironically, because he has a less typical diagnosis we run into ignorance with that as well. Oy vey!

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  4. My son was non-verbal until 2 and then began to speak in sentences, which we thought was great until we realized he was memorizing whole statements and not really understanding the words. He knew the alphabet at 2 years 2 months and was counting to 30. But he did not call me mommy until he was almost 3, he's always had a hard time referencing people and understanding names (he kind of comes up with his own names for things, for instance a roller coaster is "go fast"). But like your brother he's extremely social and sensitive. In a preschool class one time a teacher (not understanding the disorder) punished him for not looking at her when she spoke (something he's not able to do he can only listen or look at 1 time). He was a bit scared as he did not understand why he was in trouble and associated it to going to class. We as a society are just always moving so fast that we don;t make room for individual differences or understanding. Everyone with Autism is different. When I tell people my son has Autism Spectrum Disorder the immediate response is "Oh no, I am sorry", I always say "I am not sorry, he's awesome". Sometimes I make jokes, don;t worry that I may have to teach my son referencing and social language but I don;t have to teach him math or reading (suckers :) ) Anyways, xox

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  5. I nominated you for the I LOVE YOUR BLOG award! http://jilltasticnaildesign.blogspot.com/2012/04/i-love-your-blog-award.html

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  6. I appreciate your honesty in this post. My nephew has had problems in his development. Even though he's now 5, he still has trouble with his speech and coordination. He doesn't have the vocabulary of a normal 5 year old and he has had to change schools to get extra help. Despite these difficulties, my family loves him just the same of course. He's a great kid and even though he is not Autistic, I'm thankful for people bringing attention to raise awareness for these causes.

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    1. Thank you and thanks for sharing :) Hopefully we can really spread awareness beyond one day!

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