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Sunday, April 3, 2011

Angels Among Us


In honor of National Austism Awareness Month, I'd like to share my own experience with Autism, and the Asperger Angel who has left her footprints forever on my heart.

We always suspected my daughter was different, even from the time she was just a toddler. She looked like any other sweet little girl, but prickled at loud sounds, stiffened when we hugged her, and though advanced in her speech, she lacked the ability to connect emotionally. Also, physically, she couldn't master eye/hand coordination and balancing skills. She could walk and even ride a bike, but when running or dancing or anything meticulous, she just seemed awkward, for lack of a better word. We put her in ballet and gymnastics, in an effort to help with her physical limitations, but it just frustrated her. 

We talked to the pediatrician, who said she was simply shy and uncoordinated. We accepted that, until  in her third grade year I had a friend, a mother of one of my daughter's classmates, tell me she saw our daughter freeze up in the hallway at school between classes when the halls were chaotic, as if she'd shut down.  It scared us, so we had her tested for neurological disorders. Everything came back normal, and the word “Autism” was never mentioned by anyone. It was assumed that because her vocal communication skills were above normal, as well as her reading comprehension (she could read at a second grade level in Kindergarten), that nothing was wrong. 

That was some twelve years ago, before Asperger -- a high functioning form of Autism -- came to public light via the media and other venues. So, as the medical examinations all came back normal, we decided to accept her differences, adapt our lives around them, and move on. To support her school career, I became very involved in PTA. I volunteered three days a week in her elementary classes to assure all of the teachers knew me personally, and the children as well. It worked wonders. The children liked me, so they were kind to my daughter, and just accepted her as is, even though she could never really relate to any of them on a personal level. When it came time to move on to sixth grade, I knew things would have to change. Public middle school and high school would eat my awkward and painfully shy daughter alive.

I had her moved to a private school with wonderful, loving teachers, small class sizes, and a strict set of rules and routine. What I didn't know at the time, was that was the best thing for her. Asperger children thrive on constancy and regulations. Any change in routine is often viewed as an imposition.  If something upsets their balance, the reaction can be anywhere from volatile to introverted behavior. That's why my daughter shut down in the hallway at school those years earlier. It had been the first time she was required to switch classes between periods, and she basically removed herself mentally from the equation because it was too much to process.

It's not intentional belligerance. It's literally painful to them ... any variation is a disturbance in their world, and this makes them uncomfortable--physically, emotionally, mentally. With our daughter, if we explain why the alteration is necessary ahead of time, it builds a bridge for her emotionally so she can cross to the change. We know that now. We didn't then.

So, we settled into the private school life and though she didn't thrive socially, she found her own little niche and thrived academically. To try to boost her social life, we put her in some modeling classes run by a good friend of mine. It was less demanding than the ballet classes we'd tried when she was younger, and we hoped she might master coordination and confidence through the training. Amazingly, it did help. She started to look people in the eye, something her instructor worked with her on, and she outgrew her tendency to slouch into herself. But she still couldn't forge those social networks other children seemed to ace so effortlessly.

One evening, close to my daughter's fourteenth birthday, my sister-in-law saw a report on Dateline about about Asperger’s and recognized several of the symptoms. She called us, and though my heart broke, it was an answered prayer, because if nothing else we now had a name to put to our daughter's disorder.

All of those years prior we had no idea why she seemed so clumsy in her motor skills, shy and awkward in social situations, and why she couldn’t express emotions (she still has problems with body language and non-verbal communication to this day). With us finding out so late, she was old enough to recognize this means she wasn't "normal like other kids her age" -- augh... what is normal, really?! -- and it’s been difficult to motivate her to work with us to find treatment.

Now she's a senior, and we're contemplating her life as an independent adult. There are foundations that help Asperger young adults make the transition to functioning adulthood and the workforce. Unfortunately, there are none locally that we can turn to. So I'm looking into fixing that in my city.

To all of you with a young child who's been diagnosed with a PDD—I understand that you feel alone. I understand you're overwhelmed with adjustments, treatments, etc... But take heart. Finding out early on, your child will learn to take his/her differences in stride and grow into a sense of self without comparing him/herself to others. Because really, why does it matter if we're "like everyone else?" We're people either way, no matter our differences. We all have something to contribute to this world. A place where we belong.   

Bask in your child's accomplishments, and don't be afraid to set your expectations high. They will surprise you.  Children with PDDs are incredibly artistic and bright. My own is far above average in English, spelling, and writing skills, and can draw amazing Manga-style cartoons without ever having had an art lesson. The only thing that is keeping her from pursuing an art career is her dislike for letting people see her work.

Also, and most importantly, they see the world with a refreshing frankness and openness and everything is very literal. Which has taught me to rethink the way I look at things; to appreciate life on a whole different level. My daughter has been my teacher, when all this time I thought I was teaching her. 

You’re going to hear the phrase, “You are your child’s best advocate” a thousand times over. Truer words have never been said.

But even those of you who don't have to face these issues in your family can be advocates. Teach your children to approach other people's quirks and discomfort levels with a compassionate heart. I can’t imagine how it would feel to live in a world where you are constantly battling that feeling of disconnection. But that’s what Autistic people face every day. They're stronger than any of us give them credit for.

Teach your children to embrace others as the individuals they are. That differences are what make us unique. Tell them that they might just find that this person has something amazing to offer them, something new to show them. And most importantly, remind them to be kind. Because more likely than not, the person they're taking under their wing is someone else's precious angel.


Helpful links on Asperger and Autism:
RDIconnect
Autumns Dawn.org
Autism Society of America

36 comments:

  1. Wow. Thanks for sharing your family's story.

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  2. Anita, what a beautiful post. Your daughter is blessed to have such a caring Mama who not only strives to understand her, but actively looks for ways to make her life better. To work with her. As sad as it may sound, not every child has that, PDD or not. Thank you for shedding light on this personal topic and educating us on a topic that means so much to you.

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  4. Miss Anita,
    Our worlds collide again. My six-year-old daughter has cerebral palsy--while their diagnoses may be different, the role we have as parents to these earthly angels is much the same: nurturer, head cheerleader, teacher, and when needed: ball buster. Isn't it humbling to know that God has entrusted these unique souls into our care?!

    Another great post--though this one made me cry ;)

    (I had to repost--so many typos...it's a Monday)

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  5. David, thank you for stopping by. :-)

    Rachel, thank you! Sometimes I feel like I'm not doing enough, so it helps to hear someone say that. :-)

    Bethany, oh, wow. Isn't that incredible, how we met through writing but have so much more than that in common. Bless your little angel, my friend. And totally understand about typos! LOL. I had to edit my post about seven times.

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  6. Thanks for sharing this. I was impressed by how involved with your daughter's schooling you've been. You sound like a great mother.

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  7. Thank you, Sarah. I try! But there are times I still feel inadequate. It's been both a challenge and an education for me.

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  8. Hi Anita,
    What a wonderful post. My nephew has Aspergers too, so I can relate to the challenges you have faced. It was obvious my nephew was different from a very early age also. When he was baby, I would make googly-faces at him to try and get him to laugh, but he would just stare blankly at me. It wasn't until he was in kindergarten that it was realized there was more going on then him just being 'different.'

    He just turned 8 years old, and even though he is receiving extra help from the special education teachers, he still struggles when it comes to forming relationships with other children.

    Thank you for posting this. Sharing your story helps other parents feel less alone.

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  9. Anita ~ Beautiful post. Thank you for sharing your journey and for being an advocate to your angel. She's so lucky to have you in her corner. My friend's (Asperger) son is now in high school and dealing with a lot of the same things, having discovered his diagnosis only 4 years ago. Doctors are so much less aware when it comes to Aspergers, but once you know, it makes a world of difference in terms of helping the child.

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  10. Mary, I appreciate your words so much. I read somewhere a while back (wish I could find the article again) that a high percentage of today's Asperger kiddos didn't get diagnosed until their teen years, and I have to wonder why that is. But I also have hope that it's changing now that there's so much more publicity and public awareness about high functioning Autism.

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  11. Angela, thank you so much for your insights. And how wonderful that they diagnosed your nephew so early! Bless his heart; I know how hard it is to forge friendships, even to just have a conversation is difficult for them.

    Have you heard about a program called RDI? It's fairly new, and is supposed to work specifically on the socializing aspects of Asperger. Here's a link if you're interested: http://www.rdiconnect.com.

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  12. You could've been describing my daughter. Thank you. What a beautiful post.

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  13. Thank you for the link! I will pass it on to my brother and his wife!!

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  14. Thank you, Margie. And it's so nice to meet you.

    Angela, you're welcome! Maybe I should link that up along with another couple of helpful URLs to the bottom of my post...

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  15. what a wonderful success story! And so glad you were able to get your daughter into the classes and environment where she could thrive. Awesome~ :o) <3

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  16. Thanks so much, Leigh! I'm just grateful such a wonderful private school was available to us!

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  17. My two oldest boys were chosen by their school to interact with handicapped kids in a special inclusion classroom. They grew up with an uncle who was profoundly mentally impaired, so they never saw 'different' as 'different'; they simply understood that God made each of us unique in our gifts and they understand that everyone has a special purpose in this life.

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  18. Amazing post Anita, and thanks so much for sharing this part of your life. There's so much we take for granted and personal stories like yours are the only to truly spread awareness and remind each other that we all have our own unique demons to battle and struggles to fight and awareness and not being afraid to ask for or accept others' help is one of the most vital weapons in facing them.

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  19. Hi Elizabeth! What a wonderful outlook your children have! Maybe they can be role models to their friends and help others to see things the same way.

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  20. Hey Kalen! Thanks so much for the comment. And what you said is so true; never let pride get in the way of accepting help, or of offering it for that matter.

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  21. Wow - what a wonderful adn touching story. You're to be greatly admired for your sensitivity adn strength. Your daughter sounds wonderful.

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  22. Thanks so much, DU. She is wonderful. :-)

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  23. Beautiful post, Anita! Your family is so blessed to have you, plus, this was very informative for people like me who've not really had much contact with this.

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  24. Thank you Jessie! I'm the one who's blessed, no question. :-)

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  25. Beautiful post Anita! Thank you for sharing!

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  26. Thank you for stopping by, Becky. :)

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  27. Thanks for sharing this; I just read it! I did not know any details of your family life before. I applaud you for being open enough to write about it. I know other kids in this situation and they are all doing great (one is an adult who is extremely bright and just got married!)

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  28. Just a big hug, Anita. I'm late in commenting and others have said it all. Hope you have a wonderful Friday.

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  29. Thanks so much Kristine! Hope you have a great day too. :)

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  30. An amazing post from an amazing woman and mother. As you know, my nephew is autistic. I will pass your words of wisdom on to my brother.

    Hugs

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  31. Anita, I'm super late to this but I just want to say that not only do you have an angel for a daughter, you are an angel mother. Your love for her shines throughout this post. It is more than beautiful.

    <3 hugs to you...

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  32. Cherie~ Aw, thank you my sweet and beautiful friend. :) It's been a long and challenging road with her, but she's such a precious blessing. I see that more every day.

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  33. Oh my gosh, this is the most beautiful post. Thank you so much for sharing this story with us.

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  34. Lisa~ And thank you for coming by and offering support. I'm SO glad we met through QT and have continued to be friends throughout our publishing treks.

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  35. Wow, thank you for sharing this, Anita! This is truly one of the most inspiring, and beautiful posts I have ever read on this topic (and I have read a lot! Lol) I knew you were a fabulous writer, but clearly you are a fabulous parent, teacher and advocate as well! The world needs more people like you! Blessings to you and your family. Xoxo

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