Friday, April 22, 2011

How Do I Explain It to Her?

She's almost ten, and she doesn't understand. Why is she different? Why does she still love and need her stuffed animals? Why isn't she interested in boys, or Miley Cyrus or Ke$ha (shudder) or makeup or Abercrombie & Fitch? (not that I would buy her clothes there...ever!) Why is it so hard for her to read? Do math? Talk quietly?

Why do her cousins tease her for things she cannot control?

She's almost ten, and she doesn't understand. Why is it so hard for her to control her frustration, disappointment, anger? Why does she clam up when she gets really upset? Why do her words fail her? Why does she see a speech therapist, reading tutor and feel so "little" (her words,not mine).

She wants to be a big kid. She wants to do the things they do. Sleepovers, going to the movies with friends. After all, she's almost ten. She watches Nickelodeon and the Disney Channel, and though I explain until I am blue, blue, blue in the face that those kids are fictional, their life is not reality, she still aches. For what she doesn't have. Maybe won't ever have.

She's small. She still wears dresses almost always, and has since she was a toddler. It's just what she likes. But she wants to be older, and look her age. She needs help to brush her hair, hates to take a bath. Her self-care skills still need...coaxing.

She's almost ten, and she doesn't understand. Why autism? Why her?

I can't explain it to her. I wish I could. I am in my forties.

And I still don't understand.

Tina blogs here, and at Send Chocolate Now. Autism Sucks is her brainchild. Want to write? email her! autismsucksblog, just add gmail.com

15 comments:

  1. I think all of us parents wonder...Why my child, and how do we explain to them?? Hell, I get tired of explaining to other people, why my son doesn't say hello back...(He's non-verbal)...Personally, I'm glad she doesn't like Miley Cyrus or Ke$ha (ugh), my older child, my daughter like them and Ke$ha is no role model for young girls...

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  2. Poetress:: I don't WANT her to like those singers, or those clothes. She just feels weird because she doesn't, and probably never will. She watches Victorious, and iCarly, and goes through the motions, but she is really closer to 6 developmentally at this point. And she is beginning to know it.

    Territory Mom: Thanks. That helps more than you know.

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  3. We have yet to face this with our son. He's 10, and probably around a year behind your daughter developmentally. At the moment his older brother notices his autism more than he does.

    I think for us it will be a case of explaining who else in our family is similar, as we have autism and bi-bolar in multiple generations, so he knows he's not alone, and he knows what it can look like to others, then explaining that for some people life is different... He's not deaf, blind or in a wheelchair, but his life will be impacted and different... And that he is lived no matter what.

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  4. Loved no matter what... , not lived

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  5. I don't know how you can explain it to her but maybe you don't need to? Tell her all of us keep our inner child, some more than others. My oldest still sleeps with Littlefoot, he does not hide it from his peers. Then again his mother still has Pandy on her bed, who has been the best bed buddy since he came to live with her when she was five.

    It is a bit like that quote "serenity"...
    “God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” This is how we have encouraged our children: believe in who you are, like who you are, change what you can if you dislike that part of you, but stay true to yourself.

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  6. Yes, I understand ...my son more to age 4,(he's 8 now) but is non-verbal so other people are asking the questions than him...

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  7. My kids have grown up knowing that they have aspergers. We use the word a lot at home to talk about being different, special, sometimes hampered and sometimes gifted. We also talk about being an individual.

    It's part of my kids and they've never known a day without it. We know about autism heroes but we also know about everyday people who struggle with autism.

    My kids know that they're not alone.

    (Opinion - ignore if you wish)
    Tina, you need to start explaining it to her asap because she's nearly a teenager. It's not a good idea to start explaining to a teenager because by that age they already have a lot of self-esteem issues and the addition of a significant new issue could be destructive.

    Of course, if she doesn't know by then, she'll figure it out - so it's best to tell her before then. Like now.

    How do you tell her? Just follow your heart, tell her how it is, how you feel, how you love her and will always support her regardless. Remind her that she's an individual and that there are lots of autism heroes - everyday heroes and famous ones. (Good book; Different Like Me: My Book of Autism Heroes).

    (End Opinion - sorry if I was pushy).

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  8. Great post Gavin. We use the term loud and proud here. We use very similar terminology and must admit, when a more specific explanation was requested by Boy 1, we took the professional route (very lucky to be physically close to the Tony Attwood affiliated clinic: Minds and Hearts). Also, as Boy 1 is a voracious reader, we give him books to read. He is about to start "Look Me In The Eye", as he has read nearly everything else.

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  9. In many ways she sounds just like me as a child and as an adult. My parents didn't know anything was different about me and it's only in adulthood that I've had a chance to come to terms with the fact I'm not abnormal, I'm just differently normal. Your little girl needs openness and honesty about her difference, she needs to appreciate her quirks as individuality. She will probably never like those things you list but you need to value it and show her it's ok. She's not the only one like that but it reads as if she is isolated amd highlighting how different she into her peers you may isolate her more.

    Concentrate on the similarities not emphasise the differences.

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  10. An Autistic WomanApril 30, 2011 at 7:43 AM

    She is beautiful, in all aspects of the word. I pray she one day realizes this.

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  11. Like normalweirdo, I was a lot like your daughter at her age. It seemed that more and more, the other kids were growing up, and I wasn't.

    But I've learned that my perception was wrong. I *was* growing up -- just differently. In some ways, I was more mature than they were, and in some ways less. These kinds of comparisons were ultimately not helpful to me, because I was on a different trajectory.

    And now I'm 52, with a great marriage, a great kid, friends I love, a community I feel safe in. I found my way. Your daughter will, too.

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  12. Oh she knows that she has autism/Aspergers. That isn't a surprise for her. She has known for a while, and because her older brother has it as well, she knew what it was when she was 6. At least as far as she can understand. We add more information as she gets older and can handle it. My frustration was just watching her know that she is different, and starting to accept it, and grieve for it. I know it is part of the growth of acceptance, but as a parent it is hard to watch, as you all know.

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  13. My son and I did the workbook together "Aspergers What Does It Mean To Me?" It was an awesome tool that explains the diagnosis but also focuses on the positives of Aspergers, like that keen concentration they have in areas of interest. After reading this together, I watched his self-esteem rise. It was a huge light-bulb moment for him.

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  14. Hi Tina! As Rachael and Normalweirdo have said, I, too, see some of your daughter in my younger self--I was never into *normal* teenage things, like guys, makeup,pop culture, etc, and my self-care skills were...well I needed a lot of coaxing too. :) Even today *I'm 25*, my music tastes range from Makem and Clancey *a group of Irish folk musicians* to Flogging Molly *Irish rock and roll*. I'm not much of a one for mainstream music--or fashion. I tend to run around in skirts a lot of the time *especially if I haven't done laundry in a while...* and if I had my way, I'd probably look like a refugee from a bad Hollywood medieval flick most of the time.:) I have my hair cut in a bob because managing long hair is, for me, a huge pain and this is easier. I also collect stuffed animals and have several living on my bed. They're still special to me and that's not likely to change any time soon. :) Anyway, I just wanted to comment and let her know that there are other people in the world like her, and she doesn't have to feel alone. Tell her to hang in there. :)
    God bless,
    Blackbird

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