Wednesday, September 14, 2011

Reality Check

I write a lot about the funny side of raising an autistic child, and that's easy for me to do.  Little Dude is verbal, high-functioning, and in a mainstream kindergarten (albeit with a lot of support).  But I worry that sometimes my blog gives people the impression that all autistic kids are like Little Dude.

They're not.

Autism is called Autism Spectrum Disorder because it is a spectrum.  A vast range of symptoms and capabilities and behaviors.  I have friends whose children are nonverbal, and that is something I always try to keep in the back of my mind.

I read a post by Christine at A Sugar and Spice Life yesterday, and with her permission, I am sharing it here as kind of a reality check.  It's exceptionally beautifully written; honest without being maudlin.

You can follow Christine's blog at A Sugar and Spice Life, and follow her on Facebook and Twitter.


It hurts to remember ...
...but it also hurts to forget.

Sam is who she is now, and I couldn't love her more. But sometimes my mind drifts back to the things she used to do....the things she doesn't do anymore. I'm conflicted. Should I remember or should I forget? I want to do both and I want to do neither.

It hurts so much to remember the way she used to be, before her regression. She was always behind, but she was making progress. Looking back, she always had some things about her that now make me think "autism". Like twisting her hands and feet, and clapping her feet together. We thought they were quirky traits. She also didn't get into things like most babies do. She never emptied out her toy box. She didn't get mad when someone took something away from her.

She had some words. She could say mama and Emily (emma) and Sam (am). She said apple one time in the grocery store. She had some signs...."ball" and "baby" and "more". She knew some of her body parts and would touch them when asked. She took a long time to learn to wave, but she did. She wanted to be read to. She would anticipate parts of books. She would snort like the rhinocerous. She would do "so big". She could clap. If we clapped after she did something she would do it again and wait for us to clap again. She was starting to do some pretend play, like talking on a phone. She would imitate some facial expressions. She would smile for the camera.

Then she hit 22 months...she quit doing all of those things. It happened pretty abruptly. I don't know what the last word was that she spoke. I wish I knew. I know the last sign she used was "more" but I can't tell you when it was.

What happened?

It hurts to remember.
It hurts to forget.

It just hurts.

..............................................................

Christine also makes the most beautiful cloth dolls, tree toppers, and accessories, which are available at her Etsy shop.  Some of her dolls promote autism awareness and epilepsy awareness, and some are just adorable. 

The dolls are custom-made and are available in all skin tones, because autism does not discriminate.

23 comments:

  1. Thanks for the reality check. I have a friend with a non-verbal autistic son, and when we're around them I often feel a little guilty, and a whole lot grateful, that my son is so high-functioning. I wouldn't love my child any more or less if he couldn't tell me he loved me...but I think it would hurt a whole lot more.

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  2. What a beautifully written post. It really makes you count your blessings for your own healthy children. My heart goes out to her. And I ordered 2 of her handmade dolls last Christmas for my 2 "dolls". And my girls love them! So thank you for sharing both of your gifts with us.
    Sincerely, Loren

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  3. Christine: Your little girl is beautiful, and so are you.

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  4. Beautiful. My son has also lost his words and I find myself constantly trying to remember the sound of his voice. I watch videos that have him speaking on them. He only knew about 20 but they were magical to hear. Now we have 3 signs that he uses on and off and lots of pointing and pulling. It breaks my heart every day to watch this struggle.

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  5. Thank you for introducing her to us. She is a beautiful writer, and I'm sure a wonderful parent.

    Stephanie
    Coffee Fueled Family

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  6. It really is a spectrum, and all of our experiences are so much more vastly different than anyone knows. Beautiful post Christine!

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  7. Nicely written. It seems like I'll probably have to add yet ANOTHER blog to my growing list.

    I have my own built-in reality check. . . aka my daughter, but it is comforting to know I have company.

    One of the reasons I come to your blog, and a few others, is that I do appreciate the lighter side, the humor, the warm feelings, the ability to laugh about things without feeling like it's mocking, because you, and some others, "get it".

    But I enjoy a well-written blog regardless of content, joy, sorry, humor, information, etc. Thanks for sharing the post with us.

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  8. Heartbreakingly beautiful post. Thank you for sharing it with us.

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  9. This made me cry and I NEVER cry! My heart goes out to all parents dealing with special needs.
    I pinned her Annie for Autism Awareness Rag Doll onto my Autism and ADD Pinterest board.

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  10. God that's a beautifully honest and articulated post. It made me cry like a baby. Sometimes parenthood is shockingly painful. I needed to let go of some of that pain and your words allowed me to do that. Thank you.

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  11. took my breath away for a second. thank you for sharing.

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  12. I started following Christine after she left a comment on a blog post of mine yesterday. I knew from her comment that she has a special way of sharing her heart. I'm so thankful that we were able to be linked up. Love the power of social media.

    Thanks for sharing such a wonderful post about the heart of a hurting momma.

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  13. Thank you for sharing this. It really is a spectrum. I have a high functioning Aspie much like Little Dude, but then his younger brother is farther down the spectrum, and people just don't understand- especially when they're from the same family.

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  14. Well said, Christine. Sometimes I watch videos of my little boy as a toddler, looking right in my eyes and saying "mama," making all his animal noises, showing off all the colors he knew... He has lost all of his words for now, and while I'm glad to have those videos it is downright painful to watch them. Thanks for sharing this.

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  15. Thank you for all of the kind words! I try not to let these thoughts creep into my mind everyday. I try to just live my life as it is today. But sometimes the pain does surface, and I've found I do better if I deal with it and allow myself to feel it.
    Sam has definitely made progress since her regression, but she's on a different track than she was on before. I hope someday to hear her speak, but it's ok if she doesn't. I couldn't love her more. :)

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  16. So wonderfully put. I am full of tears.

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  17. My daughter Rileigh, will be nine next month. Your story reminds me alot of what we went through. She too has regressive autism. The person she was, dissapeared at about 3. I love the person she is now equally, but sometimes, I feel like she is trapped behind a sheet of glass banging to get out. I can't ask her what color she likes, or if she had a good day at school and she has a hard time being around people. It makes me sad that we can't go places without people judgeing her when she screams or cries out. She gives me hugs when she can, and at least once a year she says "I love you". She is repeating me, but it doesn't make it any less special to hear the words. Rileigh makes beautiful pictures and she is a beautiful person inside and out.
    Leslie Gilpin

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  18. I too felt like I was reading my own daughter's story. She is four and a half now. She too regressed after 18 months, having had some speech and then 'losing' it. I do however remember when she last spoke, it was February 2009 when she was 22 months old. Ironically it was 'Bye bye' that she last said...
    Almost 2 years after adopting silence she started signing. She is now able to sign (Makaton) a range of single words. It hurts me to remember too... but remembering also gives me hope for the future. Just as one day she said 'Bye bye,' I know that one day she will say 'Hello' too. And much like you said for your daughter, I too will continue to love my daughter immensely, regardless of her social and communicative capabilities :)

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  19. It can be really tough to deal with that kind of pain. We always thought our son was exceptionally easy when he was a baby...right up until he was about 2 and a half years old and he changed. Thankfully, he's not nonverbal. He does express wants and needs in words. But there is still a language problem. He still has social issues. He still has meltdowns. And I think the hardest thing is remembering just how easy he was to please as a baby. How little attention he needed... And now we have to watch what we say to him and be careful about saying what's going to happen, making sure that if we say we're going to do something, it'll happen. We walk on eggshells. And I don't think a lot of parents understand.

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  20. Oh this post really breaks my heart. I want to punch the universe in the throat for doing that to Sam. I wish we truly knew what this disease is, what causes it and how to un-do the parts of it that suck and are so utterly unfair. I know her family will always love her for exactly who she is but I can only imagine the feelings of loss, and how frightening and frustrating the world may sometimes be for Sam. Hang in there, baby!

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  21. Beautifully written.

    I too find myself sharing the funny parts of Aspergers and Tourettes with people. Those closest to me get the other stuff.

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  22. I too have felt this way. Thank you for sharing. My son is 9 years old now. For many years I grieved at the "loss" of my son I had before Autism took him away. I never spoke to anyone about the changes he went through and what he didn't do or couldn't do anymore. If I could stop crying, this may make more sense...

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  23. Sometimes it hurts to remember those once precious memories before a dramatic change in life. I lost my sister less than a year ago and at times it hurts to remember. It's heartbreaking to hear the changes that Sam underwent. I can't even imagine how her family is coping.

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