Who he’s supposed to be

When I was pregnant with Easton, it was such a wonderful feeling of excitement and suspense.  We didn’t find out his gender, so we were constantly talking about possibilities for boy and girl names.  (My husband will say he suggested Easton very early on in my pregnancy and I vetoed it.  I will tell you I heard a mom say “Easton!” in the store when I was 8 months preggers and the decision was made.)  I would constantly wonder what my baby would look like. (I mean, EVERYONE will tell you your baby is cute, but will my baby REALLY be cute???)  This was my second child, so I kinda figured it wouldn’t be all that challenging.  I already knew what I was doing this time!  I’m a pro at this kid stuff!  I would get excited about the fact that Keegan was about to gain a sibling, and, hopefully, a friend for life.  And I thought to myself, I hope he ends up having unexpected delays in his development, trouble communicating, mysterious quirks, and be diagnosed with autism.

Well…everything except that last sentence.

Because no one thinks that.

No one wants this for their child.

I mentioned an important conversation in my very first blog post.  The one where I was telling a friend I hadn’t seen in a few years about Easton’s autism and was trying SO HARD to keep a smile on my face and be positive and tell her it’s not “devastating” as some people have worded it.  She said (and I will always remember this), “But it’s not the dream you had for your child.”

She had no idea at the time, but this single statement was a turning point for me.  (I have e-mailed her since starting my blog and told her how much her simple and wise words had an impact on me.)

It was when I realized: No one dreams this for their child.

And it was when it hit me: I have to learn to form new dreams for Easton.

Confession time: There are ROUGH days with him.  I know every parent has rough days with their kids.  But, the older he gets, the more challenging it is when he has a meltdown because he can’t communicate what he needs.  He’s almost 4 years old, and I can’t sit with him and have a conversation.  His speech is improving, but there is still so much he doesn’t comprehend and isn’t able to verbalize.  There have been evenings where I am close to tears and think to myself, I wish he could just TALK to me like a NORMAL kid.  I wish he would sit in my lap so I could read him a book.  I wish he could just PLAY with his brother.  I wish he would learn the word “no” instead of screaming at the top of his lungs.  I wish….

And then I have to check myself.  This is the way he is.  This is who he’s supposed to be.  I am one of the luckiest moms on the planet to have him.  So snap out of it.

I have a book called “Ten Things Every Child With Autism Wishes You Knew” by Ellen Notbohm.  It’s wonderful.  I would recommend it to any parent or educator of a child with autism.  I read it last year, and recently read it for a second time because…well…I just need to be reminded of a few things.

Chapter Seven is entitled “Focus and build on what I can do rather than what I can’t do.”  The author mentions that not only is this true for all kids, but for all people.  One paragraph specifically struck a chord in me:

“Yet many families and educators unwittingly and unhappily tumble into the Swamp of Unmet Expectations.  This is where a child’s potential goes to die if we as adults are not successful in detaching our own personal aspirations from those appropriate for our child.”

Swamp of Unmet Expectations.  I couldn’t get it out of my head.

I tumbled into that swamp when I was filling out the stacks of paperwork that ultimately led to his diagnosis.  So many “no” answers.  Some sections completely blank.  A reminder of all the things he couldn’t do.

This is difficult for me to admit, but I still tumble into that swamp occasionally.  Sometimes, it’s when I see what other kids his age and much younger are able to do.  Other times, it’s when we’re out in public and someone is staring at him because of the strange, repetitive sounds he is making.

That swamp is not a good place for me to be.

Lately, he has been showing us all the things he CAN do.  He’s figuring out ways to communicate, he’s mimicking almost everything he sees and hears, he is trying new foods (thanks in huge part to my good friend who also happens to be his teacher at his part-time childcare/preschool), he is trying to socialize with other kids (sometimes unsuccessfully because they don’t always know what to do when he lays on top of them to show his affection…but he’s TRYING).  He started back at his special ed preschool, quickly and easily falling back into the bus and school routine (with, thankfully, the same wonderful staff as last year).  And he makes me laugh really hard EVERY SINGLE DAY.  He is, without a doubt, one of the funniest kids I know.

A lot of positive, hopeful things are happening.  He’s a pretty amazing little boy.

Chapter Ten of the same book is called “Love me unconditionally.”

Seems simple, right?

I know some of you are probably thinking, “she has to be reminded to love her child unconditionally?”

Doesn’t everyone?

When your child is melting down in public, do you embrace him in a loving hug and say, “I love you no matter what!”

When your child screams bloody murder right into your ear, do you smile and say, “Oh, that’s okay.  Because I love you unconditionally!”

I don’t.

I get frustrated.  I get agitated.  I get frazzled.  Sometimes, I feel like melting into the floor.  I don’t necessarily show it on the outside, but I can’t wait to get in the car so no one is staring anymore.

So yes, sometimes I need a little reminder of the AWESOMENESS that is my child.

In a lot of ways, the dreams I have for him are the same as any parent has for their child.

  • I want him to succeed.
  • I want him to be kind to others.
  • I want him to have friends.
  • I want him to try his hardest.
  • I want him to find something he’s good at, something that gives him confidence in himself.
  • I want him to be happy.

Someone asked me this weekend, “So…will he grow out of it?” (meaning his autism)

It caught me off guard.

I thought about her question and responded: “No.  Our hope is that he will learn to function in society WITH it and that people with accept him as he is.  He will always have autism.”

I haven’t stopped thinking about that question.  Autism isn’t a “phase” like the “Terrible 2’s” (which, by the way, is totally inaccurate.  I would actually say the “Terrible 3’s, 4’s, and 5’s, and maybe 7’s…but maybe that’s a whole other blog post.)  It is part of who Easton is as an individual.

Autism may not have been the dream I had for my child.  But it has had an impact on my life that I can’t fully express in words.  I thought, when I found out I was pregnant with my second child, that it would be easy.  (A hilarious assumption, now that I think about it.)  I could not have been more wrong.

I lay awake at night and think about his future and what it holds and how people will treat him.

My dreams for him include all of the above that I mentioned, plus:

  • He will be accepted by his peers.
  • He will be loved unconditionally by the people in his life.
  • He will have at least ONE good friend who will always have his back.
  • He will be able to communicate to those closest to him the things that he needs.
  • He will teach people to not judge him.
  • He will find a job that makes him happy.
  • He will show his teachers and peers how incredible he is.
  • He will make a difference.

However, I’m 100% certain the last one has already happened, and will keep happening his whole life.


5 thoughts on “Who he’s supposed to be

  1. My life was blessed with a surprise 5th child 14 years after what used to be youngest, I too fell into the, oh this will be easy, I have done it before. Then the diagnosis came, and every day I remind myself that I need to remember to look at my Carson as the unique and special little man that he is, and that no experience I have had with my other children could prepare me for the love, laughter, frustration and tears that he brings me. I love this post, you have captured an internal struggle I had dealing with Carson’s “quirkiness” – I pray every day that he will find that one true friend, that he will be accepted and that he will know a world and a life that doesn’t involve teasing, or judging.

    • Thank you. It definitely is an internal struggle. We of course love our children just as they are, yet we want them to be accepted, which can be challenging for anyone who is perceived as “different.”

  2. Awesome post! I think we all spend time in that dreaded swamp, sometimes more often than we should. But I love how you pull out the positive things to hang on to, especially your list of dreams. It’s good advice for all of us, to create new dreams and love unconditionally.

  3. Your blog is very inspiring. My son has not been diagnosed with Autism but he is very behind for his age (16 months) I too am filling out paperwork and marking no for almost every single answer, it becomes heartbreaking after a couple minutes and I have to stop. I just want to thank you for reminding me that even though he has quite a few delays that he is still my perfect boy that I gave birth to.

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