Monday, April 29, 2013

Very much untitled.

Note to self: It is always better to blog frequently. I say this because I have been on a wonderful high with Sofie and today was a terrible day filled with Mommy insecurity and NOW I choose to write.

Before I launch into a pity party monologue let me start things off with great news. Sofie is starting to talk a little bit! She is making sounds more often to request things. And she is doing great saying words. She has said "please" (peez), "ready" (reh-eee), "daddy" (dah-deee), "ups" (for 'all done')...just to name a few :) :) Sofie is also beginning to sleep in a 'big girl bed." It's a move we HAD to make after Sofie was found sleeping on top of the attached drawers like a little house cat. NOT safe.

So many changes and I feel I have multiple personality disorder. On the one hand I am over-the-moon excited about Sofie beginning to talk a little. I am proud of her for wanting just a sippy cup and not a bottle. I am amazed she is in a toddler bed now. All great things. And on the other hand, I am feeling rejected and a bit sad tonight because lately I feel like I am not enough for Sofie. She seems bored by me and is retreating a bit. Maybe it is as simple as a case of big transitions mixed with being under the weather (she has inherited my allergies) and not remotely close to an ASD thing. But it hurts double when she ignores me. I bet its just a toddler thing. But it still hurts a lot. Doesn't help that I am a bit exhausted this evening (did I mention the allergies?) and that always leads to guilty feelings about how I am not doing enough. We have so much to be grateful for and again it's Kristin Math. I feel double-y guilty for feeling sad and not appreciative of my good fortune. I mean I am appreciative but for some reason I feel like if I cave to feeling sad or overwhelmed one day (or a couple) I am in other words, I am saying I'm crazy.

I think I need to rest. I would like to say thank you to all of our family and friends for your support. I'm sorry I am behind on getting thank you notes out for the walkathon. It's been a crazy month. They will get out!

Saturday, April 13, 2013

The Super Hero Convention

Today was the Autism Speaks Walk in Raleigh. It was really fun. It felt amazing to know we had such support behind us-between our teammates and the dozens of donations we have received. I saw a lot of families have identified with the Super Hero narrative. I really did feel like today was a convention of Super Heroes. I loved seeing this little boy happily tracking one bubble up into the sky-just like Sofie would. I loved seeing Sofie among fellow treasure seekers that were combing the landscape for treasures the rest of us can't see. Sofie really seemed to get that the day was a celebration of her. Although I suspect that is how she feels about most days.

One of my favorite moments was dancing with Sofie while the DJ blared pop music. Sofie loved bouncing in my arms and had this big smile. After we completed the walk, Sofie grew tired of party music and began to zone out a bit. I think most toddlers would have reacted the same way. I saw a little boy who was much more sensitive to loud noise. He said the National Anthem at the opening ceremony. He had his hands over his ears and struggled with people clapping for him. It makes me so grateful Sofie is not a sensory avoider. My hat goes off to every family helping a sensory avoider-that is a challenging super power. The day left me feeling like we really hit the lottery. One of the organizers had asked me yesterday if I would like to say a little quick thing of why I walk for Autism Speaks. She made it sound very casual and brief so I agreed. Thank God time did not allow for me to speak because I didn't feel like I deserved to share the stage with the warriors that would have spoke before me. One mom spoke of her child that was diagnosed two months ago-her child is TEN. Another speaker was a young woman speaking about her blind autistic brother who is struggling to cope with life at his new school for the Blind. She spoke of terrible tantrums and an inability to speak intelligibly. How do you follow that? Especially when I had planned to simply say that I was so grateful for Sofie's early diagnosis and that therapy is a God Sent. And I would have closed with saying that I was so thankful for Sofie's progress. I can't imagine my cake-walk story following the sibling of a brave blind autistic boy. I am a really lucky person.

The best way I could describe today would be to ask you to imagine a Super Hero Convention. And all these sweet beautiful super heroes gather there. And Sofie, along with a few others, is loving the opportunity to enjoy her powers. They are flying high. Wind is in their faces and they can't get enough. Sofie is using her treasure-seeking powers and is spotting beauty in little objects boring people like me would pass over or step on. Sofie is spotting the rays of sunlight on the concrete and is making a point of touching every spot of golden yellow. Sofie bounces to the bass of the music gleefully and when it becomes too much she uses her super coping powers and grabs onto her ear and goes to her "happy place" (a place she has an easier and easier time coming back from, thanks to therapy). I delight in seeing these playful super heroes with Sofie and I catch myself wanting to say "Aren't their powers amazing? Aren't their brains fascinating? How they see the world, what a gift?" But I stop myself because I see the families of super-sensitive super heroes wiping a tear away now and then. If I was to stick my foot in my mouth with these parents and say "Aren't their powers amazing?" I imagine I would get a complex answer.

It's easy for a parent of a treasure-seeking super hero that gives hugs to say "isn't this amazing?" I can oddly enough here the response to a question I dared not ask today. I hear this tearful mother or father saying:
Yes, we are so proud of our child. We love him with all of our heart. But can our child fly? We don't know. He wouldn't dare. The wind on his face feels like a thousand needles. Is our child a treasure seeker? I suppose in some ways, yes. If you count only seeing a few things in the entire world worth noticing.  And on most days our baby's family doesn't make the cut. Does our child love music and being silly? I don't know. He is so sensitive to loud sounds that the agitation makes it pretty impossible to enjoy any melody. As for being silly, yes, he can be silly sometimes. I just wish with all my heart I knew how to make him laugh when I feel like I'm an expert in what makes him cry, yell, or bang his head. Yes, our child has powers but it shouldn't be this hard to have them. Yes, our child has an amazing brain but it shouldn't be this hard for him to share his gifts. It shouldn't be this hard for me to give him a hug or for him to look me in the eye. It's not fair. Why do some super heroes fly and others sit in a corner alone?

Today I feel undeservedly lucky to have a super hero that can fly. And the list of things I wish my super hero could do and the list of anxieties I have for the future seem trivial. My super hero can fly and I pray to God she always can.

And to all the families with super heroes sitting in the corner, I wish I could give you a hug-and I pray one day we figure out how to get your super hero to do the same.

Thursday, April 4, 2013

They can't all be sunny days

I have been on a real positive quick lately, I was due for a really insecure streak. I think this picture summarizes my day. Sofie was being impossible. I can't blame her; it was a terribly rainy day. She is "dumping" more than usual and she is mouthing EVERYTHING. I had to scrape out chalk bits out of her mouth today. Her therapist was trying to get Sofie to draw on dark paper and Sofie tricked her into a false sense of security and BAM! shoves a piece into her mouth and starts chewing. The dumping was probably the most aggravating part. Around 5 o'clock I snapped and trapped her in this blanket like an animal. In the middle of destroying the apartment I spread out this quilt. Sofie smiled and sat in the middle of it (thinking we are going to play parachute). I quickly started wrapping her up like a little baby burrito. She quickly became relaxed and I just left her there on the floor. She stayed there for thirty minutes before she got up and continued her path of destruction. One thing that stinks about ASD is you can't just have a crappy day and let that be that. I was wondering if her crabbiness was part of our new body brushing therapy (immediate side effect can be increased dumping and irritability). I was also was wondering if I am staying on top of her therapy routine enough. Sometimes I let things slip and I wonder if I am messing stuff up. It's a lot of pressure trying to get all of Sofie's little brain signals up and running the way they should. I mean I know that Sofie is an incredibly healthy girl and her beautiful brain is firing away. But knowing that we are doing a brushing therapy to help her sensory processing mature a bit carries a lot of weight. And knowing that we are using the PEC system with her talking book to help her understand the symbolic nature of language and a list of other developmental therapy tools stresses me out some days. Today was one of those days. I am tired. I wish I could be "on" all the time and follow our therapy plan to the letter-every second of every day. Oh, rainy days- you drain me.

Tuesday, April 2, 2013

Clark Kent, Puzzles and Princes

Today is World Autism Awareness Day. The charity I advocate for, Autism Speaks, has a "Light it up Blue" campaign today to mark the occasion. Buildings across the globe will glow blue when the sky goes dark. It's funny because it once again reminds me of this super hero parallel I have in my head with Autism. It's like the bat signal and in many ways it is. No, the Joker isn't involved but "lighting it up blue" is letting us all know help is needed. It's easy to forget this when the light isn't shining. I never thought about Autism in the way I do now as a parent of a super hero.

Why the super hero obsession? Short answer: I can't help but see this story any other way. When I was little I loved the Superman movies (as corny as they were). I admittedly did not follow the comics but the image of an awkward Clark Kent trying to fit in our world has been swirling in my head a lot. I keep having these flashes of Clark Kent trying to be "normal" and his powers often getting in the way. As time wore on he was able to use these powers to help people. Often the audience sees that he wishes he could be like everyone else-he is aware life would be easier that way but he also knows that wouldn't be him.

I think of this when Sofie is doing a puzzle. She is completely capable doing a puzzle at the same level of skill of her peers. But those super powers often get in the way and distract her. Sofie will inspect each piece and run her little fingers along the edges of the pieces. She meticulously checks out the pattern of the wood grain. She doesn't like letting go of the special pieces. She notices the little dark spots along the grain and any small indention in the wood. She doesn't care too much about our simple little puzzle. You can tell she feels like the rest of us are missing the point. She will drop a piece on the floor or half-heartedly concede to our wishes by placing the piece slightly over the correct spot. Sofie's speech therapist and I noticed she has began trying to put the pieces in upside down. Is she trying to resist inspecting each piece so she can finish the puzzle? Only Sofie knows the answer to that question.

I just can't shake this idea of Sofie having exceptional 'powers.' And quite frankly who would want to let go of that idea? I think whatever mommy instincts I have was tuned into my super hero before the diagnosis. This summer I became overwhelmed by a bizarre need- a copy of 'The Little Prince.' I read the children's book in High School, in French (back when I could read in French). I took Sofie to the bookstore and made a b-line for the kid's section. And in little spurts I quickly read the brilliant little book. I kept thinking of my Sofie throughout the book but now I know why. The story of an other-worldly child that sees our planet differently and is filled with love and boundless appreciation for the little things. It's not a big stretch for my mind to wander to Sofie. The Little Princess? Nah, I like Super Bubu better if I had to pick (but that's her call).

After a long and winding post, let me summarize that I don't think Autism is the disorder so many see it as. The disorder part is the brain getting in the way of an individual being able to be calm in their own skin, not tortured by change in routines, and countless other ways ASD keeps millions of amazing people from being peacefully connected to this world. The discomfort and disconnect-that's the disorder. The ability to see things differently, the ability for the brain to process its environment in such a spectacular way that it makes us all boring people take notice-that's a super power. We don't need to teach kids to lose their super powers. We need to research new ways to help our super heroes cope with their unique gifts and embrace, and understand, the love we have to give them.

Happy World Autism Awareness Day :)

I am in a rambling mood and it is late. Good night everyone.