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Wednesday, November 12, 2014

My First Guest Post! Guest Author---Freddy Amara, Janey's brother

Hello Rarer In Girls readers,
My name is Freddy, Suzanne's middle child.  I am 17 years old and currently a senior in high school.  My mother had requested that I write a guest blog entry about how Janey has affected my childhood.  I responded that I would be happy to; this blog has had a profound impact on my mother's life, as there is a wonderful community of more than just readers.  You all have let my mother---and my family---know that we are not alone.  Your support is incredible, and I personally thank you for reading my mother's entries and giving her support.

This is how Janey has changed my life.

It hasn't been easy with a little sister with autism.  I wish she wasn't autistic, obviously, as I feel I
cannot have conversations with her that I could have had with her had she been normal. However, I love her the way she is. I have a special connection with her that nobody else has, much the same as a normal brother and sister would have.   My personality has certainly been altered because of Janey.  I feel like I am more tolerant and patient than many other people my age.

One of the hardest parts of being a sibling of somebody mentally disabled is the misunderstanding among everyone else.   The usage of the word "retarded" has died down over the past few years, however, each time somebody uses it in an offensive context, I feel a sharp pain.  They don't know what it's like. The nights of screaming, the stares in public, the fear for the future.  I try to explain to people when they use the word how deeply it can hurt.

My parents have been great in my opinion. Ever since her diagnosis, they have made it clear that for my childhood, Janey is our shared responsibility; more theirs than mine and my brother's, however, there will come a time that when my parents will not be able to care for her anymore, and she will be our responsibility.  I accept this, as does my brother.  I do help out with Janey often, but my parents have let me have an otherwise completely normal childhood, and they care for me just as much as they would have had Janey not been autistic.  In a way, Janey's autism has given me more freedom than I would have had otherwise, for a huge chunk of their attention is spent caring for her.   This is good for me, I have learned independence at a younger age than others, and my parents have learned to trust me with my schoolwork and don't bother me about when I do my studies.

It should be said that I'm writing this on my own, my mother doesn't even know I already wrote this.  She'll proofread it before posting, I'm sure.

Autism is a scary thing.  I want to have children when I am older and have a family, however, it is widely unknown what causes autism, and it is possible that genetics play a role.  I have questioned whether I want to have children despite the risk of autism.  I know I'm quite young and I shouldn't worry about it yet at this age, but I can't help it.  I'm glad my parents had me, and to all of those parents out there who had an autistic child as your first, it must be a tough decision whether you should have more children.  It's not my place to say, I'm just happy that I exist, and I think I'll take the risk someday of being a father.

It is nice all the support people give towards finding the cause of autism, however, as my mother has likely spoken about before on this blog is that the public doesn't seem to care as much about helping families that have already had children with autism.  Many things could cause autism, or any other mental illness for that matter, and so I agree with my mother that it would be nice if there was more support or awareness for those who have a loved one already diagnosed.  I feel like I should follow in my mother's footsteps in raising awareness somehow.  How, I don't know.  I believe just letting people know how common autism is is the first step.  Not only that, but the effect it has on our lives.  You all reading this already do know and care, and so I thank you.  My only request is that you tell somebody about autism who might not know its effects on families, and maybe even share this blog with them.


Unknown said...

Well written and thought out, Freddy. You are part of a strong family and I admire all of you.

Kerrie said...

Thanks Freddy for sharing your thoughts and feelings

Yuji said...

Thank you so much for sharing your thoughts, Freddy. You are a wonderful big brother to your sister, and I have a feeling that you'll be a great dad someone.

Freeyoke said...

I hope my son will get some positive traits out of his big sister's issues with autism as you have with Janey. I suppose if you can handle the rollercoaster of dealing with an unpredictable sibling, other people you encounter may seem easier to deal with by comparison.

"In a way, Janey's autism has given me more freedom than I would have had otherwise, for a huge chunk of their attention is spent caring for her." A lot of teenagers would rather not have their parents getting too intrusive in their lives but some kids can't handle the autonomy. I have a nephew who is a couple of years older than you and he spent 5 months in a county jail. If you think your parents are just "ok" now you'll really appreciate them later because some kids didn't have an ideal childhood. Ok, not ideal but they got the job done.

"I believe just letting people know how common autism is is the first step." I'm 50 and my generation didn't grow up with the word "autism" in their vocabulary. All of my nieces and nephews knew about autism and now they know their cousin has it, too. So autism has a face and it's in our family pictures.

Unknown said...

He really loves his sister, I can see it by the way he talks about her. He's a great writer like you, Suzanne.

--From; a girl who's been following yours and Janeys story for awhile now. She seems so sweet. I would love to meet her someday, but I'm way up north in Upper Michigan. :p
Much love to your whole family ������

Unknown said...

This was great to read. I hope one day one of my kids will be able to speak out about having a sibling with a disability as well. I often think about how all my kids are growing up together. This post shows that while it's hard, there are positive outcomes and always, there is love. :)

Leigh said...

Thank you, Freddy, for your words.

I started reading this blog when I was looking for some insight into expectations of siblings by parents of kids with autism, which is how I connected with Rarer in Girls.

I can say that it does teach you an early and valuable lesson in humility and compassion.

All of your other responses I have struggled with too.

This does help me relate to my parents, who are continuing to care for my sister, and what they might be feeling too.

She is now 41 and they are 72.