“This is what we know, when you tell us of your fondest hopes and dreams for us:  that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”

-Jim Sinclair “Don’t Mourn for Us”

Dear Callum,

I found this quote recently.  And it has haunted me for weeks.  Every time I look at you and think of the future, it echoes.  I don’t know what to think, and I don’t know how to feel.

Because in this man’s voice, I see you in twenty years.  And I would never want you to think this true of me.

When I found out that you were going to be a boy, I was afraid.  Not because I don’t love little boys.  I was afraid for what was an irrational reason.  I feared autism and, though it certainly happens to little girls as well, your chances of being affected by it are much higher if you are a boy.  I remember telling a friend that I could handle just about anything, but I didn’t think I could handle autism.  How ironic is that?

No, I don’t think God gave you autism to teach me any lessons.  My God doesn’t play games like that.  But I do think I knew something.  I must have somehow sensed you were coming and feared not being the right mother for you.  I now know that is ridiculous.  There is only one person in the whole world who could love you as much as I do.  Me.  You’re mine, and I couldn’t be any more proud of you.  Really.

So what exactly, you may ask, was I afraid of?

Well it certainly wasn’t not loving you.  Oh, how I love you.  And not in that “because of the challenge of raising a child like you I have grown so much as a person” kind of way.  (I don’t know why someone would feel that way.  Maybe their kids aren’t as cool as you.)  I wouldn’t trade you because you are the only you in the whole world and I could not imagine having any other boy.  There is no sweeter smile on this planet.  You are incomparably cute.  Your giggles, hugs, and kisses have no equal.  Everyone who meets you raves about what a sweet little boy you are.  Your soul is just magnetic like that.  Everybody who meets you loves you.  It doesn’t happen every day, but there are just some souls in the world like that.  You’re one of them.  And it makes me so very proud.

But, oh baby, how I do fear for you.  And it’s because I want so many things for you.  Yes, I know they may not be the things you want.  I know they may not be things you are wired to do.  But I want them for you all the same.

Some parents are guilty for wanting their children to fulfill their own dreams.  It is the classic battle between parents and their children.  The things parents want for their children vs. the things their children want for themselves.  The thing is, I’m not looking for you to fulfill my dreams.  I don’t believe that children are blank slates.  I think you come screaming into the world exactly the people you are, and that it is our job to help you be the happiest you you can be.  I just want you to have all of life’s options available to you.

I’ve traveled to foreign countries and met fascinating people.  I want you to be free to do the same.  I have studied and chosen a rewarding career.  I want you to have that same choice.  I have fallen in love.  I want you to have the interpersonal skills to find someone to share your life with as well. And, if it would make you happy, I would love for you to experience the same joy having your own child that you and your sister have given me.  I want you to be able to make friends.  I have been blessed by wonderful friends who are even closer than some family.  I want you to be able to read.  Reading open doors to new worlds and connects our minds to great minds of the past.  I want you to be self-sufficient.  I don’t want you to be dependent on anyone else’s possibly bad decisions on your behalf.  I don’t need you to be captain of the football team.  I won’t be proud of you for joining a fraternity or dating the prom queen.  As long as you are happy, you are free to choose any career from fixing cars to studying bee habitats.  Whatever floats your boat.  All I want out of life for you is for you to be content and have the ability to direct your own life.

But then I hear the echo of this quote and I become afraid all over again.  I don’t ever want you to feel that, because I want these things for you, that somehow I want a different son.  I love you just the way you are.   Yet, I am not going to lie and say that I won’t be sad if you can’t have these things.  Autism, in its severest forms, can be a thief.  And I don’t want anyone stealing from you and your potential for happiness.

You are like a traveler who inhabits worlds in two dimensions.  This world and the world of autism.  Some autistic people will never leave that other world.  They will not be able to travel freely between both places.  They don’t speak the same language we do.  And all we get are occasional glimpses through windows by which to get to know one another.

I know that other world is part of you.  And I accept that I will have to share you.  We’ll have to learn together how to find the right balance.  But know this.  I intend to do battle with that world.  Because though I plan to share you, I refuse to grant primary custody.  And it’s not because I find you less worthy living over there.  It’s simply because I want you here.  Pure, selfish – yet unconditional- love.  Mamas can be funny like that.  I know I may not win.  But the losing won’t be for lack of trying.  And, should that happen, I’ll keep fighting for access to come and visit you there.

I don’t ever want you to think that I am fighting you.  I will always want you to be you.   Autism is a part of you.  And, because I love you – all of you – I wouldn’t dream of trying to cut you in half.  But it isn’t all there is to you, baby.  The other part of you would have been you even without it.  That’s the part of you that needs to have free access to this world – to love, to friendship, to self-esteem, confidence, and self-actualization.  All I want is for you to be able to navigate both of our worlds.  I will fight for that –and for you.

But I am and will be proud of you for who you are.  Right now.

And on the day that you will one day read this.

23 responses »

  1. As a former school counselor, I remain surprised that so few people even try to understand autism or the potential of those who are autistic. Posts like this help to educate us all. Thanks.

  2. T says:

    I dont have a special needs child and I hope no one judged me or thinks I dont understand just because I dont have one. This brought me to tears happy tears of joy. So many children are so unique and special and deserve all the love in the world. I truly think my niece has some form of autism but no one will listen to me. I support all the moms dads and children of the world. I hope my comment doesnt upset anyone I just wanted to say that you have a true talent for words and your little guy is so blessed 🙂

  3. I have a friend who has written two books about love letters. She has a son living with Autism. She wants to post a series of love letters from parents to their children with autism. Perhaps you would like to send yours in: http://facebook.com/jabsloveletters

    Once again, thanks for sharing!

  4. Lori newcomer says:

    What a fortunate boy to have such a wonderful Mother!

  5. joanne eaton says:

    What a beautifully caring compassionately written letter…my 23yr old son is autistic and we have just read this piece together…im crying and hes passing me the tissues…lol.
    I have fought all his life to try and make him believe that there isnt anything he CANT do…but maybe that he just has to try a little harder than some others…
    Here is a quote i stand by every day…………
    I WOULD NOT CHANGE MY SON FOR THE WORLD
    BUT I WOULD CHANGE THE WORLD FOR MY SON…….XXXX

  6. Liesl says:

    Tears are streaming down my face! Thank you for this beautilfully written letter. I will treasure this. I relate so well to this letter…. my first son is 6 years old and has autism. When I fell pregnant again, I prayed for a little girl (to skip the autism!!). But, my second son is now 3 years old and is also autistic.
    I love both my sons to bits – they are both so unique and special and I will not trade them for anything.
    Like you, i will keep on fighting the other world that tries to steal certain things from me and them.

  7. A beautiful letter…a lovely expression of a mother’s love.
    I was recently asked to describe what a happy fulfilling life might be for my daughter who is severely affected by autism. My answer, and I find it hard not to sound snarky here, is that I hope for my daughter what she hopes for her daughter. That she will be valued for her gifts and that she will have family and friends who care enough to search for those gifts and love her.
    Even though I continue to try to tease out the best in my daughter, I tell her often that she is perfect the way she is and how much I love her…I hope she understands that.

  8. This is one of the most beautifully written letters of love that I have ever [seen] written. Love, love, love it.

  9. Jen says:

    This had me in tears. I can relate so well. My son is older than Callum, and not as severely affected. But all the same, there are challenges and all I want in the world for him, is that he will learn the techniques he needs to be able to overcome and compensate for those difficulties and that he will be happy with who he is. No matter what he ends up doing with his life.

    He asked me today while we were at lunch at Taco Bell, “Mom, why do you love me?” I answered him, “Because you’re my son.” That wasn’t good enough for him, and he wanted specifics, so I gave him such answers as he is sweet, a good kid, smart, etc. Those still weren’t good enough for him. So I told him “All the reason I need to love you is that you are my son, and I am your mom. I don’t need any other reason. I do love that you are sweet, and smart, and a good kid, but even if you were mean and horrible, I would still love you because you are my son. I can’t not love you.”

    He’s been becoming more aware lately of his challenges and the effort I put into making sure we’re getting him all the help I possibly can, probably because he’s old enough to understand why we’re going to so many specialists and doctors now, and he seems to need reassurance that he’s “good enough just the way he is.” I do everything in my power to remind him that is more than good enough. He’s just perfect, inspite of, and because of, his own special needs.

    Your son is so lucky to have you for a mom, to love him and to advocate for him. I doubt he will ever feel that you wish he was someone else, you are way too supportive of who he is.

  10. The best thing I ever heard was from my mom, who has championed for disadvantaged people of just about every walk and age, “Autism isn’t her disability,” she said to me about my daughter, “we call it that so that she can have the accomodations she needs to address her differences. But it truly is her gift. She can do things that neither you nor I can, and that is because she is Autistic.” I try to convey that to my daughter every day. I try to make her understand that I know that it’s hard, having my own set of challenges to deal with, but that because she sees the world differently, she has something different to offer in the grand scheme of things, and that though different is not easy, different can be a very good thing. I didn’t know enough to be afraid of Autism, even when it was first suggested to me that she might be. But I did know enough to be afraid of not loving my child for who she is, to be afraid of being a horrible parent. I knew enough to strive not to let either of those fears get the best of me. And I tell her every day that I love her, even when we’re not getting along, or when it’s hard… I love her so very much, and I want her to have the life that she decides she wants to have, not the life others tell her that she can have.

  11. Susie says:

    Autism piece

  12. judithornot says:

    Your response to the quote is so exactly how I feel about the child in my live who has autism. I love him dearly, and am proud of him, just as he is! And I continue to wish the best for him.

  13. Linnae says:

    This is so incredibly beautiful! Thank you for sharing. ❤ I also shared this on facebook 🙂

  14. Ann Burt says:

    You are an incredible writer. To be able to put into words the universal thoughts of parents everywhere – truly a gift. For me it took having an ASD child to really appreciate all three of my children. A huge epiphany for me was the day I realized my hopes and fears for my ASD child were absolutely no different from my hopes and fears for my other two. I want them to be happy, healthy and have someone to love – and most of all, there were no guarantees – for anyone.

  15. Melanie says:

    My heart is aching. You have given me so much to think about.

  16. Gina says:

    I think I could have written this letter myself! I am a mother of a 6 year old boy with Aspergers. I vividly remember a conversation I had with a friend many, many years before I was even married, let alone knew I would someday have such a wonderful son. In that conversation I told my friend that I just didn’t think I would have the patience to have a special needs child. I too know that God didn’t do this to teach me a lesson, but more to show me my strengths. I think God said, “yes, you are patient enough for this beautiful child and he needs a mama just like you!”
    I stumbled across your blog recently while researching to start my own. I have enjoyed it emensely! Thank you so much for sharing your feelings!

  17. Very well said. That quote (the you put at the beginning) scares the crap out of me too!

  18. Lisa says:

    What a beautiful letter….Callum is so lucky!

  19. Ava's Mom says:

    Thank you for this letter. It brought tears to my eyes, but welled up my heart with a keen reminder of what unconditional love and acceptance truly mean for our family and our daughter.

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s