Our summer of freedom is coming to a close. Or should I say, our summer of slacking? We've been busy in many ways, including being busy slacking off. We ripped up the carpets and refinished our hardwood floors, the girls took swimming lessons and Anna attended social skills camp. And in-between, when we were not shopping for groceries or swimming at the local pool, we were reading. I was sleeping in - until 8am almost every morning! The girls were playing...intensely pretend playing all summer long. They played for hours and hours together, making up elaborate stories and scenarios while I sipped coffee and read the news...or made meals. It was fabulous. One of my favorite things is to listen to the girls play together - cooperative, imaginative play. Just a few years ago, this was not possible. But it's possible now, and I'm enjoying every last second of it. I will enjoy it forever...the gift of laughter, of friendship, of communication will never get old. I will never cease to be thankful for these small things. But they are not small, are they? They are huge. They are life.
Yesterday while taking Megan to meet her teacher at our local elementary school, I was asked by another mom - what is Asperger's Syndrome? Conscious of children running up and down the hallway and other parents possibly listening in, my brain froze for a moment while several different thoughts ran through my head...the memories of all the therapies, the frustration, the fierce love and pride, the refusal to accept anything other than joy and love for my daughter's future...the years of fear, the tantrums, the screaming, the tears...how could I encapsulate that into one pithy, hopeful statement? I couldn't. I simply stated that Asperger's Syndrome is a high functioning form of autism, and waited. The response? One, how do we fix it and two...looking at Anna, you'd never know.
But you would know, if you knew what to look for. Maybe it's subtle. Maybe to other people, she's just "quirky". A little off-center. It's in the way she does not look at you when she talks to you. The way she turns her body from you instead of toward you while trying to engage you in conversation. It's in the way she says "Excuse me!" when she wants attention...to everyone, even her own parents. The way she spouts facts like everybody knows them and is interested in them. The way she uses formal language and big words, unlike other children her age. The way she starts to spontaneously laugh at something she thinks is hilarious but that nobody else thinks is even remotely funny (except maybe Megan, who I suspect is being nice). It's in the way she launches into the middle of a running monologue that's in her head like her listeners are cued into her internal thoughts and know exactly where she is and what she's talking about. The way she throws herself on the ground and cries "I can't, it's too hard!" when she doesn't get something right. It's in the way she plays younger than her age and is more comfortable around adults than her peers. You can tell. I can tell, it's as clear as fingernails on a chalkboard a lot of times. It makes me feel protective, but not like she needs to be fixed.
What is there to fix, exactly? A beautiful smile? Clear, lucid eyes? A love of learning? A kind-hearted spirit? A desire to engage with the world around her? What needs to be fixed? The tantrums? Well, yes - the tantrums. What else? What am I forgetting? The fear that was so raw that's now melting into gratitude for where we are and how far we've come acts as an analgesic. A balm. Love covers a multitude of hurts. Grace drives out fear. What is Asperger's? It's my daughter. It's a promise of life and love and laughter. It's all in how you look at it.
What I was thinking and feeling and not able to put into words in that crowded hallway is...take the best parts of your child...the energy, the love, the zest, the kindness...all the things that make your child awesome. Put them right in front of you so that's what you see all the time. Then take the things that need to change...the tantrums, the yelling, the anger, the frustration, the fear, the miscommunication, the behavioral challenges...and get some help to knock them down one by one. Speech therapy for communication challenges, social skills therapy for peer relationship challenges, occupational therapy for motor skills and sensory issues. Behavioral management, special diets, allergists...one by one, see what works for your child. Surround yourself with people who support you. It might take awhile. It will be hard work. But it's worth it. Every shared smile is worth it.
What is Asperger's? Maybe someday Anna will tell you herself.
The books that were most helpful to me at the beginning of our journey with autism spectrum disorder (which includes Asperger's, Autism, PDD-NOS, and NVLD) were The Autism Sourcebook, The Out of Sync Child, and Emergence: Labeled Autistic. Other good reads are There's a Boy in Here and Ten Things Every Child with Autism Wishes You Knew. Lastly, this page here explains all the different aspects of autism spectrum disorders.
Yesterday while taking Megan to meet her teacher at our local elementary school, I was asked by another mom - what is Asperger's Syndrome? Conscious of children running up and down the hallway and other parents possibly listening in, my brain froze for a moment while several different thoughts ran through my head...the memories of all the therapies, the frustration, the fierce love and pride, the refusal to accept anything other than joy and love for my daughter's future...the years of fear, the tantrums, the screaming, the tears...how could I encapsulate that into one pithy, hopeful statement? I couldn't. I simply stated that Asperger's Syndrome is a high functioning form of autism, and waited. The response? One, how do we fix it and two...looking at Anna, you'd never know.
But you would know, if you knew what to look for. Maybe it's subtle. Maybe to other people, she's just "quirky". A little off-center. It's in the way she does not look at you when she talks to you. The way she turns her body from you instead of toward you while trying to engage you in conversation. It's in the way she says "Excuse me!" when she wants attention...to everyone, even her own parents. The way she spouts facts like everybody knows them and is interested in them. The way she uses formal language and big words, unlike other children her age. The way she starts to spontaneously laugh at something she thinks is hilarious but that nobody else thinks is even remotely funny (except maybe Megan, who I suspect is being nice). It's in the way she launches into the middle of a running monologue that's in her head like her listeners are cued into her internal thoughts and know exactly where she is and what she's talking about. The way she throws herself on the ground and cries "I can't, it's too hard!" when she doesn't get something right. It's in the way she plays younger than her age and is more comfortable around adults than her peers. You can tell. I can tell, it's as clear as fingernails on a chalkboard a lot of times. It makes me feel protective, but not like she needs to be fixed.
What is there to fix, exactly? A beautiful smile? Clear, lucid eyes? A love of learning? A kind-hearted spirit? A desire to engage with the world around her? What needs to be fixed? The tantrums? Well, yes - the tantrums. What else? What am I forgetting? The fear that was so raw that's now melting into gratitude for where we are and how far we've come acts as an analgesic. A balm. Love covers a multitude of hurts. Grace drives out fear. What is Asperger's? It's my daughter. It's a promise of life and love and laughter. It's all in how you look at it.
What I was thinking and feeling and not able to put into words in that crowded hallway is...take the best parts of your child...the energy, the love, the zest, the kindness...all the things that make your child awesome. Put them right in front of you so that's what you see all the time. Then take the things that need to change...the tantrums, the yelling, the anger, the frustration, the fear, the miscommunication, the behavioral challenges...and get some help to knock them down one by one. Speech therapy for communication challenges, social skills therapy for peer relationship challenges, occupational therapy for motor skills and sensory issues. Behavioral management, special diets, allergists...one by one, see what works for your child. Surround yourself with people who support you. It might take awhile. It will be hard work. But it's worth it. Every shared smile is worth it.
What is Asperger's? Maybe someday Anna will tell you herself.
The books that were most helpful to me at the beginning of our journey with autism spectrum disorder (which includes Asperger's, Autism, PDD-NOS, and NVLD) were The Autism Sourcebook, The Out of Sync Child, and Emergence: Labeled Autistic. Other good reads are There's a Boy in Here and Ten Things Every Child with Autism Wishes You Knew. Lastly, this page here explains all the different aspects of autism spectrum disorders.
4 comments:
Beautiful writing...I see a book in your future!
Thank you, HBL :)
Such a lovely post Erin! I agree with HBL - you should be writing a book, and what a gift that would be for your girls! :)
Thank you Ina. You and HBL are just so sweet. :)
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