Archive - April 2016

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Ten Reasons The Library Rocks
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Our Autism Life

Ten Reasons The Library Rocks

John took me on a library tour last weekend. Both of my boys love maps: Sam likes to draw them and John likes to scroll them. That is, he likes to pull them up on his iPad and peruse the roads in real-time or street-view. I first noticed something was up when I saw him magnify the iPad with one hand and use his finger to “walk” down the street, stopping and rotating the view to take everything in. The world is your oyster when you can visit real libraries virtually — even if they are in states far, far away.

But last weekend we were on the road, headed south with Sesame Street Live show tickets purchased last Fall, and from the backseat, John started to call, “Exit 21, Ware Public Library” and then: “Find the exit! New Bedford Public Library,” and later: “This library please,” which is how we found ourselves at three different book repositories in one day (four if you count the drive-by of the closed Spinney branch).

And one of these libraries, even though out of our geographic network, allowed us to open a library card anyways. We may be the first patrons ever who will return checked-out materials via the U.S. Postal Service ( 4 Sesame Street DVDs that we already own, by the way).

Ten Reasons The Library Is Its Own Reward:
1. Every single library adheres to a similar flow…
2. Children’s section with DVDs
3. Children’s section with CDs
4. Children’s section with interesting computer games (with bonus points for Sesame Street-installed)
5. Large smorgasbord of titles to check out and Mom never says No, no DVDs today
6. Large open spaces in which to run
7. Large open spaces in which Mom always says, “Please walk, don’t run”
8. Large open spaces in which Mom always says, “Shh… inside voices”
9. “First grocery shopping, THEN library” and “First post office, THEN library” and “First doctor visit THEN library” and so we do AND we get stuff done
10. The library is less expensive than the book store. Or Target. Or any of the million places where a DVD display sits. Which is most places, you’d be surprised. (Or not — maybe you know exactly what I mean.) 🙂

Our Autism Life

Awareness. Acceptance. Autism is both just a word and the catchall of our life. I thought it might be time to open the blog windows again — even though two years have passed, maybe because two years have passed. There is no way to recapture all of the moments that have filled that time but I can try now. My boys are two years older than they were when I wrote this post back in 2013, and although we have struggled mightily this past year, the sentiment with which I wrote this is still true — I would not change either one of them for anything in the world but I would make John’s path through life easier. I would clear the road he travels of the rocks and debris, the obstacles and struggles just to get through his day. I’m just a mom, an imperfect one at that, but I’m their mom. And, boy, do I love them. Autism is both just a word and a catchall of our life, both good and bad — just like any other life.

Dear Sam and John, The world is vast and yet I am afraid you will come across hurtful words someday and for that I am sorry because the last thing I want you to think is that YOU, my dear boys, cause me a moment of fear or despair. Sometimes people look at the world in black and white and this is in direct contrast to what I tell you every day: You have gifts and challenges just like everyone else. Some things are harder for you, some things are easier, but be kind. Have compassion for our shared humanity and when you mess up, apologize.Img-2015-sj

Yes, Sam, sometimes I am exasperated when you talk non-stop about Star Wars and Darth Vader and Mommy, can I tell you about my theory about poor poor misunderstood Anakin? and I say, “Do you mean Evil Darth Vader?” and you tell me Well, yes, but it’s complicated. I ask if you want a snack but you ignore me and say, as you jump up and down, Can we call the library and find out if they have the John Williams’ CD because the Star Wars theme song is important to me and I really want it! I want it now!  I ask you to do your homework and you say: There are many Sith lords pushed off their path… and I’m all “Sam! Homework please. I Am Your Mother!”

And John, I will not lie, I fear that we are being taken over by the numerous DVD and CD cases lurking in every corner of our home. I fear for all of the future trees that will give their lives to the paper industry. I would not be surprised if it is you, John, that keeps the industry going. I am hard-pressed to think of anyone who could find and print, one by one, hundreds of 2-inch DVD and CD images via Google search. Each one spits out of the printer hugging the upper left corner of the page leaving 15/16” of paper sad and empty. One by one you bring them to me and one by one I cut them out. And then one by one you place them atop your pile. Talk about a tragedy, all of this paper!

The truth is the exasperation is all part of being Mom, it’s part of the parental experience and I am grateful for it. I am grateful for you.

Autism is both just one part of you and everything about you, it is so entwined in your very personhood and I love your personhood, and I love you. How could I possibly separate you from you? And why would I when who you are is just right. I love your brown eyes and silly grins and even your jumping and flapping because it tells me a story of your happiness. As you race by, circling me and finally land heavy in my lap, I am content because your joy —it makes everything worth it.

Autism is rolling on the floor laughing because John, you saw a breakdancer on an old Sesame Street episode and paused the DVD player in order to pull me down because you want ME, your middle-aged mommy to get down on the floor and replicate those moves. I CANNOT, but you smile as I try and even though you can’t always tell me what is going on inside that brooding head of yours, I do know, right now because I see it radiating from your face that you are happy.

Of course there are hard times. Sadly, no one is exempt from them in this life. Some things are without question, hard. Sometimes, no matter how hard we both try, I am unable to figure out what’s wrong. Sometimes the gap between our methods of communication is too wide and we both flounder, sad in our respective corners. We’ve had to abandon many an outing because we misjudged the sensory overload, the power of a bad day. And there were the THREE years, John, that you did not sleep. Up and ready for a party every single night from 2-5 a.m. That was an emergency, that right there — incredibly hard. I was tired ALL. THE. TIME. You were tired ALL. THE. TIME. We were grumpy, you and I, but we manage, we live, we are living. This is no shell, no need to call in the armed forces— this jumping, pulsing, humming, cacophonous life is just fine, thank you. It is full, it overfloweth.

Life is rarely perfect. Perfect is when you see that what you have is enough. Perfect is when you recognize your gifts and understand It’s complicated is the best way to roll.

You are not lost, if anything I was lost before you came barreling into my world. You are everything good and wonderful about this life, my deepest wish is that the rest of the world takes the time to see it, to see you.

Love, Mommy

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