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September 6, 2010 / paperkids

Just the way you are

Our son, Hayden, just turned five years old.  I remember when we were thinking about having another child, I was a little overwhelmed by the thought at that time.  Emma was about 3 1/2 years old then and I was consumed with all things autism.  But deep in my heart there was no doubt that I really wanted Emma to have a brother.  I wanted her to have someone to share her childhood with, and someone who could help her and be there for her.

I couldn’t help but think of the wonderful closeness my younger brother and I shared.  Our childhood spent together is so precious to me and ended all too soon when he passed away at the age of 13.  It’s hard not to think of your own childhood when you start a family.  It left me always wanting someday for my own children to have such companionship in their lives.

The possibility that we could have another child with autism  wasn’t really in my mind.   I just wasn’t sure how much I would be able to give to another child.

But when Hayden was born, he brought a whole bunch of life and sunshine into our home. He is the happiest and most and fun-loving child I’ve ever known – such a sweetheart with the sweetest cherub cheeks that I could just pinch all day long.

And just like Emma, Hayden was also diagnosed with autism.  It came when he was around 15 months old during which time he was quickly thrown into all the early interventions as soon as possible.  And like Emma, I really didn’t  see the earliest signs of autism that I could have seen in Hayden.  Maybe some people might say “should have” .   Maybe I just didn’t really want to.  This is when things got really hard for me emotionally.  Hayden’s diagnosis hit us hard.

Despite the kids both having this label we call autism, they could not be any more different. They  always happily run around each other.  They haven’t always appeared to be on the same page – when Hayden wanted Emma’s attention, she wasn’t giving it and vice versa.  But the bond is natural and strong.  Their closeness isn’t hard to see and it brings joy to my heart.

One day Hayden was in his room with the ABA therapist and not happy about it at that moment.  Emma and I sat on the couch with the keyboard.

Me:  “Do you think Hayden still needs therapy?”

Emma:  Yes.

and then she typed more..

Emma:  I wish he talked more

I was caught off guard by this comment.   She was expressing sincere worry and love for her little brother and this was the first time I had seen it this way.  She was the big sister.

Me:  “Do you think he will?”

Emma:  I don’t know

Me:  “Do you think he understands everything that we are saying to him?”

Emma:  Yes

It was then that I realized something else.  While all of this is going on with Emma, I have still been having a hard time thinking differently about Hayden.  I’m still this confused, desperate and stressed out mom when it comes to him.  Yet Emma believes in him.  She knows that he understands!

What touches me most is knowing that she can relate to him.  She can empathize and understand him.  What a gift that is!.  It’s helping me to have a whole new outlook on having two children with autism.

I asked her if she wanted to write a note to him on his birthday.  She typed it out on the computer and did it with minimal assistance I might add.

Hayden

You are fun and sweet just the way you are

Sometimes our kids teach us things when we aren’t expecting it.  There’s such beauty in Emma’s unconditional respect, love and acceptance for her  brother just the way he is. It reminds me that we should all be so lucky to have someone love us just as we are.  My children are blessed indeed to have each other.

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11 Comments

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  1. Katie Cameron / Sep 6 2010 7:05 pm

    I just love you. That’s all.

  2. Lisa Flaherty / Sep 6 2010 7:11 pm

    Happy Birthday, Hayden!

  3. Lynn States / Sep 6 2010 7:39 pm

    None of us would want to imagine life without Hayden; what a wonderful gift he has been as a brother, a son, and a grandson! He lights up the house, doesn’t he.

  4. Candy / Sep 6 2010 8:07 pm

    Hayden is such a handsome little boy! I can still remember when he & Brandon had ABA together–and that’s when I first met you, Emma, and Jared. Those were fun times for us, despite being stuck in that hot room for several hours.

    It’s really sweet that Emma looks after Hayden and just wants the best for him–to talk. She’s a great sister. Even though they don’t communicate with each other, you know they love each other!

  5. Laura Tacinelli / Sep 7 2010 12:50 am

    You must be psychic, I was just going to ask you the other day about Emma’s opinions on Hayden! Happy Birthday Hayden! I can’t believe it has been so long!

  6. Grandma / Sep 7 2010 4:52 am

    Happy Hayden! He wakes up singing. Like his cousin, Ryan, did, at that age, he likes Toy Story. On the phone one day, I heard him ask Jared for “milk,” he pronounced the word succinctly, the emphasis on the “k.” He is practicing getting his mouth around the sounds. He hears, he understands.
    Autism has given us all a larger understanding of the meaning of family, of love. The word “normal,” leaves our vocabulary. These children are “special.” And so are each of us, in our own way. We are all part of the whole, and needed for our special selves to round out the world.
    Hayden is full of energy, a small bright boy. He lights up a room. He and his sister are so blessed to have such caring, thoughtful parents.

  7. Annie Torsiglieri / Sep 7 2010 4:24 pm

    Wow! I just discovered your blog. It (and all of you!) are so inspirational!! I have 6 year old twins, one of whom has an autism diagnosis. I am also creating a theatre piece about autism and have a few grants from UCSB, where I teach, to do so. I would absolutely love to interview you (and any of your family) for my piece, which I’m hoping will be a tool for education, acceptance and advocacy. You can look me up at: http://www.theaterdance.ucsb.edu/people_facultyprofile.php?ResearcherID=200
    Please let me know what you think. Also, please feel free to pass this on to others in the autism world who have a story to share.
    Wishing you and yours all the best-
    Annie Torsiglieri

  8. Rachael / Sep 7 2010 8:35 pm

    I find time and time again that kids that have autism and things like that and are able to communicate have this odd wise quality about them. These kids that are autistic, or even just the ones who are ‘quirky’ but not really diagnosed? They are often so smart, and not just book smart. I love reading your stories.

  9. Rita / Sep 8 2010 2:27 pm

    Sabra, Emma and Family, I’m at a loss for words every time I get on here to read. I cry, laugh and feel such a deep appreciation for getting to know of your existence. I don’t really know all the reasons why but don’t need to. Sabra I love your willingness to be so transparent and imperfect. We need this in so many arenas. God couldn’t have chosen a better family to speak to the world about Autism and what the world calls normal or not. Thank you so much and hugs and kisses to you all!

  10. Paola / Sep 8 2010 5:17 pm

    You write so beautifully. I always leave your blog feeling encouraged and enriched.
    I don’t know if you saw my answer to your sweet comment in my blog, but I wanna make sure you know how honored I felt when “saw” you there. 🙂
    Thank you so much for sharing these treasures in here. 🙂
    Your son is so handsome! 🙂 I love the pictures!

    Ps: my Brazilian friend (the one who wrote u in Portuguese) who is also a huge “fan” of Emma told me she dreamed about Emma giving her a big card with her drawings inside. Isn’t it funny? 🙂
    I’m also Brazilian, but I’ve been living in the States for 2 and 1/2 years.

  11. Sarah / Sep 10 2010 4:35 am

    They’re beautiful.

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