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I talk about Autism, a lot

A Letter to Grace From an Autism Sibling Who's Been There

12/18/2014

7 Comments

 
Picture
Have you cried yet today? 

Grace received this letter just days ago. Be ready, it punches you right in the feels.

Amy, a volunteer with National Service Dogs, has been following our story, and she's taken a special interest in little Grace. She understands Grace, you see; in a way, even I can't.

Amy has a brother with autism, and while she's all grown up now, she can completely relate to our Grace. So, please, read this letter with a box of tissues close and thank Miss Amy for thinking about a little girl who often happily takes a backseat to issues surrounding her sister.

Dear Grace,

My name is Amy, and I have a sibling with autism too.  His name is Thomas, and he’s only one year younger than me.

I’m a little bit older than you, but I wanted to write you a letter to tell you that I understand what it can be like to have a brother or sister with autism.  Not everyone can say that.  That makes me special, and it makes you special too.

I’m sure you’ve heard many times that your sister has special needs, and that she can’t help it when she cries, or hits, or yells.  And they’re right, but that doesn’t make it any easier for you, does it?  Well, sometimes you understand what everyone tells you.  But other times it really sucks to hear those things. 

I remember wishing that Thomas could just stop being autistic.  Sometimes I just wanted to put on some earmuffs and pretend to be in my own world where Thomas didn’t get to join me.  Sometimes, I even hated him.  And then after I thought about those things, I felt really sad.  And then I felt guilty.  And then I felt really alone.

A lot of times it seemed to be all about Thomas.  I liked to please my parents a lot, so I would try not to complain too much.  I was a very shy person, I didn’t really like to talk much.  I kept a lot of things to myself.  None of my friends understood Thomas, so I just didn’t feel like explaining him.  And I think that’s ok, but I did feel lonely sometimes.

Having a sibling with special needs can be really, really hard.  I just wanted to tell you that it’s ok to be mad, and scared, and angry.  It’s ok, and very normal, to feel those things.

You know what else?  Having a sibling with special needs can be really, really cool.  You get to be the very best big sister in the whole world.  I bet you’ve heard that before, yes?  I know I have.  It makes you a very special person because you will, now and forever, understand all types of special people.  I bet you’re patient, and I bet you’ve never teased anyone (what’s up with those bullies, anyway?).  You understand what it means to be kind, and that is (in my opinion) the most important thing in this whole world.  And you already have that.  Some adults don’t even have that!

For a very long time I felt like I needed to be perfect.  It was hard for Thomas to do well in school, so I felt like I needed to do well for both of us.  I used to get pretty upset about low marks or anything negative on my report card.  Do you ever feel that way?  Don’t get too caught up in it Grace.  It’s very important to work and try hard in school, of course, but you have to remember to have fun too! 

You can have your own friends, and you can have time away from your sister.   You can find something to love that is all your own.  For me, those things were piano, swimming, and a very dear pet.  What do you love that is all your own?  Gracie Nights?  Your beautiful cat?  Do you like to play dress up or dance?  I know you love Kate, just as I love Thomas.  But sometimes we all need breaks, and we all need things that we can hold next to our own hearts and call them our very own.

I am very proud of Thomas.  A lot of things that used to bug me when I was little have gone away.  He grew older, just like me.  He is hilarious, odd, and special and wonderful.  He is just the best brother in the world, and I wouldn’t want a life without him in it.  And even though we had some very tough times, we are now very good friends.  Kate will grow, just as you will grow.  Some days will be hard, and most days will be awesome.

This letter was a bit longer than I thought it would be but I guess, despite the fact that I’m shy, I had a lot to say!  I know it can be hard to see sometimes, but you’re a very lucky girl.  You are not alone.

Amy


7 Comments
Katelyn
12/17/2014 09:58:17 pm

Absolutely beautiful. Way to go Amy! Your courage to write these words will have a lasting impact I am sure!

Reply
liz cross
12/17/2014 10:05:31 pm

What a amazing letter from a beautiful amazing person.as a mom with a child of a disability I wish everyone was this kind and understanding..little grace will grow up to amazing just like amy....I needed that uplift of that letter today..thanks for your sharing your life with us....

Reply
Melissa
12/17/2014 10:45:35 pm

This put a ,lot into perspective for me, I always say it's hard being an Autism mom, but now I see it's just as hard being an Autism sibling.. Thank you for sharing, this was a beautiful letter and has really helped me understand how my oldest could be feeling, and might eventually feel like this.

Reply
Dawn Marcotte link
12/18/2014 05:14:40 am

What a powerful letter - I am glad you warned me about needing tissues.

Reply
Joleen Tawfik
12/18/2014 08:30:43 am

Amy you are an amazing young woman and obviously an AMAZINGsister. More so, you are a role model. I worry at times that my step daughter feels the like its unfair to her to jave a sister with ASD but your letter to Grace makes me know that her world may not be perfect but it will be more perfect with her patience, love, and understanding. Thank you for writing this not only for Grace but for all the sibling thay are affected by ASD. Stay a beautiful person, the world s more people like you.

Reply
Elizabeth link
12/20/2014 02:59:46 am

So wonderful to share this perspective! What a precious, precious gift!

Reply
Soli Lazarus link
12/19/2015 02:03:01 am

A reminder to us all to remember how siblings cope. Fantastic account

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