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June is the New Spring

April Wrap Up: Wrapped in Love                          

In recognition of April being Autism Awareness month, Just Add Kids welcomes Colleen Nagle, a Burlington mom, as JAK's guest blogger.

Autism is easy to misunderstand, misinterpret and mislead.  My son is the master of disguise and the best way to understand our kids is to assume nothing.  That is, assume only that they are kids, children, teens, silly, loving, intelligent and, well, simply put, no different than any other kid.

Everything I have been told about Autism is wrong. Everything I know about Autism I have learned from my son.  My son with Autism.  He loves me just like his typical siblings love me, he cries when he misses me and he smiles when we are together again.Read more...

He cannot speak.  He has never been able to express his favorite color or cartoon or game.  My heart longs to know him, to know the little everyday things: to know that he has favorites; to know that he likes the food I serve him; to know if he is happy; and to know that he loves me.

But he finds a way.  Always adapting, my son finds a way to let me know what is on his mind and surprises me with his creative way of reaching me.  Now it is my job to reach others.  I must interpret for the world what my son is telling me.  He speaks to me with his eyes.  In a single look I can tell what he is thinking: I know when he is hungry, when he has a migraine, when he wants to take a bath, and when he wants a hug.

My letter to my nonverbal son:  I Can Hear You With My Heart.

I can hear you with my heart.   I listen with my eyes because you speak to me with your soul.  A glance from you tells me what you need: your requests for food, attention, hugs, if you are in pain, sad, or depressed.  All of your inner thoughts become mine through a bond we forged while you were still growing inside me.  A bond that has strengthened and evolved due to necessity, for, for your survival, we must grow closer.

I must be on high alert at all times:  ready to feed you when hungry, hug you when you are sad, play a game with you when no one else knows you want to interact.  As you sit there in silence I must know what message you are sending me.  "Mommy, I am lonely" your eyes tell me.  So I color with you.  "Mommy, I am in pain" your eyes tell me.  So I hug you, but my hugs are not strong enough.  You want squeezes and deep pressure.  You seek what you need, as we all do.  All people have desires and needs, you are no different.  You squeeze me and I look into your eyes and say, "Ouch! Too hard!", but I know what you are telling me.

You are no different than any other 13 year old boy: the puberty, the hormones, the temperament.   I think of your older brother and his daily needs and how his needs are being met, and yours are not.  I think of your brother at school, talking, to pretty girls and laughing.  While you notice pretty girls, all you can do is smile and blush.  I think of your brother and how he plays football at school, he and the other boys running, hitting, yelling, and laughing.  You have the same need to run, hit, yell and laugh, but your needs are not met.  You attempt to find your own outlet: rough squeezes, hits on our arms, pulling on teachers and tackling your peers.  But, you are misunderstood and disciplined and eventually expelled from school.  Alone, at home, we sit together, we work together, we learn together.  Writing in your notebook today’s vocabulary words while sitting at the kitchen table, you pause to look up at me with appreciative eyes.  I hear what your eyes are telling me.  My own eyes swell up with tears, "I love you too baby.  Someday you can go back to school and be with your friends."  My heart breaks that only I can hear your voice:  the sorrow, missing interaction, friends, and being a child on the playground, running, chasing, laughing, and feeling free.  Tirelessly, I fight to be heard.  You are a loving and beautiful boy and someday others will understand your strong squeezes for the communication that it is, and not misunderstand it as misbehavior.  They are your outlet, your way of venting....your brother tackles on the football field, you tackle us on the couch.

The neighborhood kids run through the streets on their bicycles and scooters in front of our house, in front of your window.  They yell and scream, and they fight and misunderstand each other.  This is growth and accepted as a part of adolescence. Yet,  it leaves you wondering.  You wonder why when you make loud sounds that strangers make, even at school you are told to "shhh".  You wonder why when you protest as other children so often do, your mom is called to bring you home.  Together we wonder when the world will see that you are just a child behaving like a child.  I see you for who you are. I love you for who you are. And I admire you for never giving up. For the way you keep smiling, laughing and loving.  Take pride in who you are my sweet child, for you are a genuine soul. I love you and I can hear you speaking to my heart.

Comments

  1. Maureen Cashin BologApril 28, 2011 at 4:40 PM

    Beautifully written. My nephew has Autism, so your story spoke to my heart.

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  2. Wow! The comparisons you made are so dead on. This should be something schools are reading, understanding and implementing strategies to overcome. Thank you for sharing this!

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  3. This is such an important observation. Schools should be educated on this comparison of typical kids vs kids with autism. The same needs, different expression. Implementing programs to address this issue in IEP's could be ground breaking. Also in educating the kids that these behaviors, while slightly different from their own are purposeful. Kids may be more open to forming relationships with children with autism too. I can see you making changes, not just for your son but for others. Thanks for sharing! I have a child with autism but didn't really consider this until you explained it so beautifully.

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  4. Colleen - A beautiful and touching blog expressing your feelings so very well! It is with tear-filled eyes I read this, while knowing D is making progress. May it continue!
    You are a wonderful and loving mom...one of my Warrior Mom heroes!

    ReplyDelete
  5. [...] April Wrap Up: Wrapped in Love                           In recognition of April being Autism Awareness month, Just Add Kids welcomes Colleen Nagle, a Burlington mom, as JAK's guest blogger. Autism is easy to misunderstand, misinterpret and mislead.  My son is the master of disguise and the best way to understand our kids is to assume nothing.  That is, assume only that they are kids, children, teens, silly, loving, intelligent and, well, simply … Read More [...]

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  6. That was absolutely beautiful Colleen :) So touching!!!

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  7. Thank you, it helps to know we are not alone and that others understand how special our wonderful kids are and what a blessing they are to us.

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  8. So very well put Tami!!! Exactly how it SHOULD be and I hope one day that schools will see understand their true role in our kids' lives and help us parents to guide them into understanding themselves and finding ways to seek the input they need and ways to express what they want. Thank you Tami :)

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  9. Thank you Carol, you have always been there to support me and I love you so much for giving me strength.

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  10. Thank you Tanya!

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  11. I am proud of the person that you have become and all that you do for your wonderful son - the teaching, playing, care and love. He is a loving boy - just like his mommy!! Your article is very beautiful. Love you sis!

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