Dear Zach: A Letter to my Big Brother

As much as it is a challenge being the parent of an autistic child, siblings can have their own difficulties.  Zach is only 22 months older than Josh, so he doesn't remember how much Josh adored him before all of his issues were fully manifested.  In some ways I think that's good, because I know how terribly it broke my heart to see him disconnect from his big brother and I'm sure it would be just as hard for Zach to remember that.  But I also think it would be helpful for him, when things get tough with Josh, so he would know how much his brother loves him.  Zach has dealt with a lot over the years, having Josh as a brother, and I think Josh would like Zach to know some things:

Dear Zach,

Mom says that even though you were only 2 when I was born, you were the best big brother right from the start.  I know when I got a bit older I loved being with you.  That's why mom would always take me to the play room or sit me next to you if you were watching something on tv, it really made me happy.  There are a lot of pictures of us together when I was little like that, you should ask mom to show you sometime, I think you'd like them.  I remember you were right there with me when I first learned how to walk and you were so excited for me!  We used to play chase - well, as best we could in the house and with me not walking so well, but I would always follow you and you used to try to hide from me then surprise me when I would get close.  I liked this game. 

I don't know what happened that made things change for me.  But I want you to know that even though the problem I have makes it so that I don't talk to you or play with you any more, it doesn't mean that I don't love you.  I do!  I love mom and dad too.  I just can't make things work properly so that I can understand and communicate - but I do have feelings.  I just don't really know what to do with them.  Whatever is wrong makes things really hard for me.  So when I feel sad or angry or frustrated I don't know how to handle it and sometimes it's scary, so I act-out.  I know that this will get someone's attention and maybe they can help me.  When I hurt you, I know it makes you sad, and really angry at me.  I can understand that because being sad and angry is usually why I'm acting out.  So I know it's not fun.  And I am really sorry when I do end up hurting you, I'm not really trying to do that, though I know it doesn't seem like it.  You never, ever hurt me back - it would be understandable if you did - because even though you might be really, really mad at me, I know you love me and you know I can't help a lot of the things I do.

I know it has been hard for you, over the years, having me as a brother.  In many ways I'm sure it's like being an only child but without the benefits.  There are a lot of rules for you that don't apply to me and I'll bet that seems seriously unfair.  I know there have been a few times when you've said that I was "lucky".  I know it's because of that.  You don't want to be me though, Zach.  Even though it might seem nicer to not have all the rules, it's not fun, not being able to communicate with people or understand most of what goes on around you or even inside your own head.

I know it's embarrassing sometimes, especially when I'm being really loud out in public or at places like swimming or karate class.  And I am really sorry that there have been times we have had to leave wherever we were because I was having a hard time, I know that's not fair to you or mom and dad.  But I can't help it. I wish I could.  You have always been good about it though.  You're a great brother.

There are a lot of compromises and accommodations that have to be made for me all the time.  Many times this is at your expense somehow, whether mom can't attend a special school program because it wouldn't be appropriate to bring me or she doesn't get to go on a field trip with you or you have to stay after school to do Homework Club next year because mom has to come and pick me up first... I know it's a drag.  I wouldn't blame you if you didn't like me very much.  But I know that you love me.  You show me all the time.  You try to help when I'm upset, you tickle me and make me laugh, you kiss me goodnight when I'm falling asleep, and you always make time for me when I do want to talk to you.  That helps me a lot, to know that I can always count on you. 

When mom knew I was autistic, the thing she felt most sad about was you.  She may not have ever told you this, but, up until the time that things changed with me, she always thought how lucky she was to have two boys that were going to be such good friends as they grew up together.  So when she knew that things would be different with my problems, she cried for you, because she knew that we wouldn't have that relationship any more.  She still cries for you because of that.

I wish I could be that friend, in that way that we were when I was so little.  But even though I can't, I am so glad to have you as my brother, my helper, my defender (mom told me how mad you were when you found out someone had bitten me again at school... ).  You are the best big brother I could ever ask for and I love you very, very much.  I always want you to know and remember that, even when I'm making it hard. I know mom and dad think you're pretty awesome too.

Maybe one day we'll play chase again.  I'd like that.

*Head please*

Love,

Josh.

 

*Josh says this when he wants to kiss your forehead - it's his sign of affection*