Monday, November 25, 2013

Christmas Has Come Early

I don't post as much anymore but I couldn't let this moment pass without documenting it. We got to see Santa on Sunday! A million thanks to the organization "Spare Some for Autism" for organizing the absolutely perfect event "Sensitive Santa" at Crabtree Mall. I'll start at the end. Ozzy and I were driving home with Sofie in the backseat and a photo envelope in my hand. "We just took our little girl to see Santa." And Ozzy replied with a smile, "I know."

Last year at this time I never would have imagined we would ever be able to take Sofie to see Santa. Ever. It just seemed like a dream. And a million thanks to our therapists for teaching us ways to get Sofie involved with Christmas. I'll save our fun crafty sensory-lovin' holiday decorating for another post. But through all of these tips we were able to get Sofie excited about Christmas and ready for Santa. The night before taking Sofie to the mall, we said "Sofie we are going to see Santa tomorrow and say 'hi' " and she softly replied "see santa, see santa"

When we arrived at the mall, we made sure to have no expectations of how the visit would go. The organizers were simply amazing. The event took place before the mall opened. We didn't have to deal with loud crowds and the usual mall muzak. All the lights were off and only natural light flooded the quiet mall.

When we arrived at Santa's village we were greeted by a sweet volunteer offering to wait in line while we enjoyed some of the craft and toy tables. "I'll come find you when it's your turn." I looked towards the line and saw a line of other young people wearing "volunteer" shirts. Sofie held our hand as we made our way to the sticker table. Along with a sticker table, there was also a lego table and christmas crafts table-even balloon animals.

It was our turn and we made our way to Santa's red carpet. I crouched down and said to Sofie "There is Santa! Hi Santa." Sofie started jumping up and down really hard and smiling. Sofie was excited to see this Santa she read so much about. We walked up to Santa and he asked for a high five from Sofie. Sofie gave a delicate high-five and even a low-five. Amazing. As we discussed with Sofie earlier, we told her she could try sitting on Santa's lap but didn't have to. Sofie wanted to try but took us very much at our word. She sat on his lap and after about a minute (probably way less, felt longer) she wanted off and got very squirmy and whiny. Afterwards she was proud when we said how proud we were of her. She also seemed emotionally and physically exhausted afterwards and spent much of the walk back to the car resting on my shoulder. I honestly don't think I need anything else this Christmas. That was the best :)

Feeling very thankful this evening.

Monday, October 28, 2013

It Just Full

We took Sofie to the Butterfly House in Durham this past weekend. While in there she was all shaky smiles as the butterflies fluttered over her head. At one point she wanted to touch the cobble stone path. We told her she couldn't so she pulled herself up on the nearby bench. She gently ran her hands along the polished wood, clicked her heels together a few times, smiled and said "it just full, just full" as she took it all in. Sofie's word for beautiful is "full", so she was saying "it's just beautiful, just beautiful" I am so thankful for all the therapy Sofie receives but am more convinced than ever that making Sofie more "like us" would be wrong. All I want is for her learn a second language, our boring spoken one, and she seems to be doing just fine with that. I want her to be comfortable in her skin and able to learn about the world she loves so intensely. I don't want any of those beautiful eccentricities to go away. She really does have powers, our little princess.

Saturday, August 31, 2013

Sofie's Words

-daddy, mama, again, "I sighted (excited)", I'm Mad!", I oppy (happy)", "I did that", "I get," "I got," "gapes (grapes)", "bye-bye" chicken, "I love you" "I love you too" "my baby" "outside" "open" "hands" "ses (sesame)" "I really like it" "I like it" "yessh (yes)" "all done" "mine" "nigh nigh" "I don't know" "uppa" "ice" "i said" "I gotcha" "bubbles" I feel like I am forgetting a few. I will definitely update this more often so I don't forget. Now we just have to work on Sofie speaking more often. But it is happening :) Another benefit of taking a break from blogging, I can see how far we have come in just a summer! Going to bed very happy.

Summer Recap

Uggh...just accidentally hit delete. Boo. This will definitely aid in trimming up my thoughts a bit and cut down on rambling. I took the summer off from writing and after reading the last entry I think I have a better idea of why. I was being really hard on myself and I don't think writing was helping. I turned to drawing for therapy. I was trying to work out "our story" in my head and beating myself up that I couldn't find the words. I would love to write a children's book aimed at families with free-spirited kids like our Bubu. At Ozzy's urging I am taking a page from Sofie and letting the pictures come first and the words later. I have some of the visuals of a book and the phrasing is beginning to come. I am inspired to work on this project because I don't want to explain Sofie to anyone. I don't want her to be tolerated. I want her to be celebrated. I want to expect things from her. I don't want to settle on the easy path because the thought of that path makes me sad. I think it is because settling suggests that we are selling Sofie short. I, so often, am worried about my art leading to something ( a few dollars, some vain praise). But this book project has brought me to something more- I am doing it for me. If anyone else is moved by it-great. But that isn't what drives me. Thank you Sofie for that lesson. I choose to twirl. These days we are feeling very hopeful for the future and THAT is scary as hell. Sofie had her six month evaluation in May and her therapy team, Ozzy and I agreed that she was ready to be in a school setting with typically developing kids. With the recommendations from her team and suggestions on what to look for, we started looking for a half-day preschool for Sofie. God bless the internet. We found White Plains Children's Center in Cary. It is AMAZING! During the tour Sofie wanted to stay. That really gave us the push we needed to realize that she was ready. So she started in mid-June going three days a week. She loves it and we are so thrilled that therapy in the months prior gave her the tools she needed to excel there. The teachers are sweet and very knowledgeable. Sofie seems to talk more at school. That has been a real education for us-the words are in there. Can't say enough good things about school. I just love that they see Sofie for Sofie and not as any academic diagnosis. The kids seem to really like Sofie and she seems, at least, intrigued by them. She is improving following directions and most importantly loves going to school. It makes me so hopeful for pre-school and kindergarten. She is proving every school day that she can learn from her peers. One little girl in her class loves dolls and Sofie held a doll at school and patted it on the back and rocked it saying "mah-beh-bee. mah-beh-bee" Feeling so hopeful and that makes me scared. Am I being naive to daydream of Sofie in a mainstream kindergarten classroom? Time will tell. We begin the meetings with Wake County schools in about a month. A fun scary time. So much more to say but I will stop for now.

Sunday, May 19, 2013

Need to Lighten Up

I am feeling "off" lately. I feel like I can't do anything right. I am trying to draw more and it's not a feel good at the moment. I just feel less than adequate. I think its because I am taking my mommy role way too seriously and its seeping into other areas of life. I just don't feel very capable this evening. I bet there are a lot of moms out there that feel that way sometimes. And I am going to go out on a limb and say the dads of the world feel that way too. But I can only speak for me. I have this nagging feeling that I am messing up and not doing enough to move forward. I'm just spinning the tires. I felt more focused at the beginning of this therapy journey and now I feel like I am not "on it" like I should be. Crazy thoughts are seeping into my head now and then. I read someone's status update the other day about their kid talking. Their child is much younger than Sofie. I caught myself instantly thinking "what did I do wrong? what did I miss?" That secret fear that I exposed myself during pregnancy or Sofie in her infancy to some kryptonite creeps into the front of my brain in my weaker moments. And there is so much to be grateful for. The other night Sofie exclaimed "again!" when we played her new favorite song while she was jumping on the trampoline. And Sofie continues attempting to talk. I even heard "mom,mom,mom" a few times. Awesome, awesome things (huge understatement). But in the current funk I am in, I realize I am having a really dysfunctional reaction to my child's amazing gifts. I am convinced Sofie is brilliant, like crazy brilliant. She remembers things so easily. She is a sponge. But I feel like I tripped her up. In other words, she has this spectacular brain and something happened that made it hard for her to speak (and I think I had something, or everything, to do with it). I don't ALWAYS think this but in my weaker moments I must admit I do think this. Logic and positive thinking tells me "I have to take some credit for Sofie's wonderful traits. It's insane to only credit myself with her limitations." And again, on my good days I have no problem believing that. But tonight I'm struggling a bit. I think it's because success makes you greedy. And Sofie is giving us a word here and there and I want more. She understands so much and I want to understand her more. Greedy mommy. I think all parents are "greedy" for their kids to succeed and be happy. Happy. I have to remember she is happy. Very happy (except when we are not giving her what she wants). And she has a gentle soul. Ozzy and I are amazed that when Sofie meets a dog she lights up and delicately extends her hand to let the dog smell her. She then has this adorable smile and gets shy (or pretends to be) and the dog seeks her out and licks her. Sofie then gently touches the dog's back. It's like clockwork. We have no idea how she learned to be so gentle with dogs. All we know is we have a very unique little girl and maybe it wouldn't kill me to take a little credit. I think I need to stop obsessing over what things need to be, or should be (semantics aren't that important). I am trying to draw a sketch of Sofie and I have started over three times. I got stuck on the idea that it had to look very realistic. I have no idea why I am stuck on that, it's not even my preferred style of drawing. I think it goes back to me being stuck on the idea of trying to be perfect. Again, at the risk of repeating myself way too much, I need to work on being more comfortable with how I see things and my approach to mommyhood. Sofie is VERY comfortable with how she sees things. Maybe I could take a page from the Bubu Handbook and lighten up a bit. And hopefully, my sketch will improve if I am unapologetically me and stop trying to draw the way I am "supposed to." I am about to hit "publish" and I am feeling like I babbled. But what are blogs for if not to ramble a bit.

Thursday, May 9, 2013

Shakin' Things Up: Video Blog Entry

We went to the Pediatrician yesterday for Sofie's 2yr check-up. It was incredibly frustrating. Our pediatrician confirmed what a lot of people have said to me: most GP pediatricians have a scary ignorance about ASD. The doctor actually suggested we put Sofie in pre-school early to get her around kids sooner. Aside from that lovely suggestion (that is impossible to implement by the way), she seemed to have blinders on. Now that she saw "ASD" in Sofie's file she didn't see Sofie anymore-just a walking disability. So dumb. Anyway, instead of wallowing in the negativity I gave myself a project last night when I couldn't sleep. I made a little video to remind myself of the journey Sofie is on and how well she is doing-in spite of ignorant doctors (okay, maybe a little negativity wallowing...but just a little). It felt really good making the video. Our little Super Bubu has a lot to be proud of. And I think our little family and network of support has a lot to be proud of too.

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.

Friday, March 29, 2013

Super Powers

Sofie is doing really well. Her sweet little voice is beginning to creep out of her in cute little babble sentences and the occasional understandable word or short phrase. We are feeling pretty undeservedly lucky these days. I feel like we are really turning a corner. Therapy is everything. I can't say it enough. I think when we are farther into our journey I would like to really be an advocate for that. We are learning such great techniques to communicate with Sofie. And we are learning such clever strategies to help Sofie cope with her sensory super powers. All these techniques are helping Sofie focus on the big picture instead of being overwhelmed constantly by a wave of colors and textures. It is such an amazing gift she has. Sofie can look at something and pick out the tiniest detail and appreciate it, and love it, on a level few can. Therapy is just helping her connect with people and keep her powers in check. We still have a lot of work (but who doesn't?!).

I know that the spectrum is very wide and I would like to put a little disclaimer on my views because of the complexity of ASD. I feel it is easy for me to talk about super powers and such because Sofie appears to be a mild case. Any mom reading this that is bravely fighting every day for their child with a severe case has permission to envision smacking me clear across the face. I know I have it easier than so many moms out there. I never ever want my words to come off as the ramblings of a self-involved mom. I just want to share our story with the universe because it is so calming to hit "publish" and know that my words are floating around the internet and not in my head.

I am breaking one of my rules and thinking a bit about when Sofie is in school. I am letting myself off the hook because I am not filled with anxious thoughts about the topic. I have been thinking about how Ozzy and I are really going to have to be her advocate. And of course, all parents are their children's advocates but I mean that labels make people say and do bizarre things-and I want to protect Sofie as much as I can from that.

I must stress that we have been so overwhelmed by the vast majority of people in our lives that have risen to the occasion and have supported us by celebrating the wonderful eccentric character our child is. Admittedly, we have experienced some individuals that were notably scared by the label and consequently absent from our support network. Of this tiny minority, some have expressed skepticism about the diagnosis or have shared odd takes on what "autism" means to them. I mention this minority not out of any negativity but because I think that small population represents a well-intentioned mindset we will have to face when Sofie goes to school. Tonight, as I write this, I am okay with that. It's well-intentioned-there's no malice. I think the more families come out (so to speak) and live proudly with with their little super heroes, the smaller that minority will get.

Enough rambling, it's late.

Thursday, March 21, 2013

Good Times

I wish I posted daily on this blog. I definitely have to post more often than I do. Things are happening so fast that I want to store away every memory. I feel like I take progress for granted. I think as a parent it is so easy to get caught up in now and what is to come and forget where you once were. I had a flash today of Ozzy and me getting teary eyed when Sofie was able to follow the simple direction of "put this in the box." We were so excited because she was able to hear the direction and follow it without being right next to the box. We were amazed and in awe of this seemingly simply act. It's so easy to forget. Now I can say "Sofie would you like some milk?" and she runs with a big smile to the kitchen, straight to the bottle rack eyeing the refrigerator. She is doing so well. I don't want to get caught up in what she's not doing. I think those thoughts cloud your mind and make it hard to recall the magic of her firsts. Ozzy and I couldn't be any prouder of her. She is working so hard in therapy. There is so much to celebrate. Lately she has been saying "I-deh-id" after she does something she is proud of ("I did it"). I wouldn't have been able to imagine she would be able to come so far before her second birthday. I wonder what life will be like before her third birthday-but there I go again thinking too much about the future. It's great to hope but I think I need to work on staying in the moment-especially when the moment has so much to think about all on its own.

Yesterday we started a brushing therapy for Sofie. Her new OT suggested the therapy as a way to help Sofie with her sensory seeking and hopefully help her focus more. Its more of a five minute pressure massage with a surgical brush followed up a joint contraction exercise. We have to give her the massage every two hours she is awake. We might see results in four to six weeks. It's a little daunting to have one more activity added to our daily routine but the payoff could be pretty big. It was encouraging tonight when we did the massage that Sofie was very agitated at the beginning but quickly became calm about two minutes in. She had this calm smile throughout the rest of the massage. If for no other reason, that smile is good enough to keep up the massage routine.

I have a lot more to write but I need to shut my brain off for a little bit. It's funny that we are working so hard for Sofie to make sense of her world and that I find myself having to work just as hard to make sense of mine.

Tuesday, March 5, 2013


I haven't posted lately. I have been binging on educational supplies and social game crafts. This journey has taught me a lot about my own bizarre coping skills. When I am tired or scared I just dig in deeper and make myself busier. I'm a shark. I am so excited about the fundraising events coming up for Autism Speaks but I am also laughing at how I "needed" to do this. I always try to find more things to do so I don't have time to think. But I end up thinking anyway AND getting overwhelmed by my ever-growing laundry list of activities. Not sure why I do this. On the one hand, I find the activities relaxing and oddly empowering. On the other hand, I get stressed because I have given myself this power over the situation. So in other words, it may be soothing to make little educational games for Sofie or research ways to teach her to imitate but it weighs on my soul that I have decided I am responsible for getting her to talk. It's stupid. Especially because my husband is right there in the trenches with me. I'm not alone but I somehow work really hard at pretending I am doing this alone.

It doesn't help that Sofie is an evil genius. She is so brilliant but she is using that brilliance to avoid basic skills a child her age could do or at least be interested in trying. I hope I am not pushing her too hard. We do at least one (most often two or three) mommy/sofie therapy sessions a day. They last from 15 minutes to about a half hour or so (depending on her mood). The sessions are just games I learned from the real therapists. Sometimes the mommy sessions go well and are fun-sometimes not. The speech therapist got to see Sofie in all her glory today. Sofie was mad I wouldn't let her watch tv. She was especially mad because she did everything "right". She went to her book. She went to the page "Watch TV". She then flipped through the pages and found "Martha Speaks" (one of her favorite tv shows). She pointed to Martha with a big smile and was destroyed I said "no." This all went down before the therapist even walked through the door. The therapist got to see the pouting and hugging mommy's leg. She said it is interesting that Sofie uses socializing to get what she wants or get out of doing a task. From what I gather kids on the spectrum may express anger, frustration, confusion through tantrums or head banging but it is a personal act. The tantrum isn't a means of communication it is simply raw emotion. With Sofie she does stuff that appears to be gathered from observation (yawning when bored, pouting her lip, rolling her eyes in disgust, hugging and begging). I SWEAR SHE DIDN'T LEARN IT FROM ME! But seriously, she takes observations and then uses them in a pretty sophisticated way to get what she wants from someone (or at least try).  After therapy was over she went back to her book and tried again. But this time she wasn't going to bother with mean mommy. She went about her routine. She went to the book and thumbed through the pages quickly. She has already memorized her favorite parts. The book is almost sixty pages and she hasn't had it even a month yet. She flipped to Martha and walked over to the TV and turned it on and off, on and off...hoping this time would the time Martha would appear on the screen. She was out of luck. Hopefully the lesson will stick-she can't do everything on her own (hopefully mommy will learn that too).

I'll explain more about how the book works in later entries. I have been trying to upload videos of Sofie using the book. She is crazy smart...again-evil genius. Adorable evil genius.

Thursday, February 21, 2013

Trying out the new book with dinner

In the video, I am pausing often. Anticipation is key according to the therapists. So even though we are doing it hand over hand, Sofie is initiating the follow through of the task. So in other words, when I say "chicken" Sofie pull her hand towards the image of the chicken. It's a lot of work for everyone involved but I think it is going somewhere.

Wednesday, February 20, 2013

Giant Rambling Nutshell or Ms. Bubu Goes to the Neurologist

This has been a really eventful week and it is only Wednesday! I am so exhausted mentally and physically. Tuesday we went to see THE Autism specialist in the area. Surprisingly, I wasn't really anxious about that visit. Honestly, I didn't expect much from the visit. The last visit with a specialist was a waste of time and left us unsatisfied and questioning if any doctor could give us some answers. Tuesday didn't answer all of our questions but the doctor spoke with authority and didn't pull any punches. She spoke in concrete terms and it made her positive observations carry so much more weight.

In a rambling nutshell, the doctor believes Sofie does have Autism. She is "on the spectrum." Given her young age it is unclear exactly where she fits on that very long band of color. The doctor believes that Sofie has pretty good cognitive skills. She says that sometimes with ASD there are questions about the child's intellect. After hearing tales of Sofie's mischief and adorable manipulative nature the doctor believes Sofie must be pretty smart. I asked why the doctor believes Sofie's ASD is "mild to moderate." She said with severe cases ASD kids avoid social interaction at all costs. She said those kids do not socialize. period. The doctor said the way I described Sofie's social interactions makes her think that it is the WAY Sofie socializes that is problematic and the fact that she can socialize (however bizarrely) is a good indicator that we are dealing with a manageable case of ASD. She didn't say "oh, go home! There is nothing to worry about" and this made me more optimistic than any other office visit Sofie has had-ever. From the time Sofie was approaching her first birthday I began to wonder about little quirks Sofie had and by the time she had her 15 month appointment those quirks were a huge concern for me. But I was told time and time again that all kids develop at different rates and that I should be patient. "Why does she grind her teeth?" "Some kids do that." "Is she supposed to play yet?" "Everyone is different." "She doesn't answer to her name. Should I be worried?" "Umm...???" "She has a really odd visual startle reflex, not auditory." "Everyone is different." "What should I do?" "Wait until she is two years old. Give her time. I know it's hard." The list could go on and on but I will stop-I don't want to relive that time.

I'm not mad at the medical professionals that tried to brush off Sofie's (now obvious) symptoms. I think their approach is characteristic of a much bigger problem. I think doctors are stuck in the past and are stuck on this very rigid view of what Autism "looks like." Society needs to catch up with this disorder! I wish I had a more eloquent way to say that-but it's crazy how little experts know about Autism. And THAT is why I was suspicious of Tuesday's appointment and I am so relieved my suspicions were unfounded.

What is so weird is that if I listened to my pediatrician, Tuesday would have been the day we all found out Sofie had Autism. Before that every doctor either said "too early to tell" or "my gut says she doesn't have it." Thank God for Early Intervention. They weren't going to wait for terrifying red flags to pop up. They simply looked at our daughter as the sum of her parts. All those severe delays and oddball quirks looked at as a whole cannot be ignored. I am so thankful that the compassionate individuals that assessed Sofie really looked at her.

Alright, enough looking back at Diagnosis day, back to the doctor's appointment...

I asked the doctor about some odd moments I have had with Sofie surrounding written words and letters. Sofie is in love with books. She has been obsessed with them for a long time. Prior to the diet change Sofie would look at them for REALLY long periods of time. Thankfully her attention span is closer to normal these days but she still loves books. She "reads" books by looking over all of the words and has actually picked out words on a few occasions. Once while I read "Brown Bear, Brown Bear.." I asked "Where is the Black Sheep?" And after protesting a bit, Sofie finally pointed to the sheep and then pointed to the words 'black sheep.' She did the same thing for the words 'white dog' too. It was crazy. I also saw her pick out the letter 'h' when a pbs show asked her to find the letter 'h' (after they had shown the audience the letter). Sofie is not even 22 months yet. There are other times Sofie has proven to have a really good visual memory and I asked the doctor about it.  

She said some of her patients have read before they spoke in sentences. She said kids on the spectrum tend to have amazing visual memories. The doctor said she has had two-year olds that can pick out DVDS by simply looking at the writing on the spine of the case. Like so many things about Sofie, it is hard to say with certainty what she is reading or not reading because of her young age but it would explain a lot. Sofie loves letters, there has to be a reason a child that isn't even two yet loves written words.

We left the neurologist with an appointment in 7 months and some guidelines for us to follow. The doctor said we should continue pushing proper socialization skills and giving Sofie opportunities to engage with the world around her. One way to do this is limiting TV. We already limit TV but are going to be a bit more rigid about the amount of TV Sofie watches. The doctor said to limit TV because her shows offer predictable one-sided mock socializing. In other words, we need to make Sofie work a bit.

Fueled by the great appointment I searched online for ways to better teach Sofie. In my search I found a lecture by Temple Grandin (I linked to the video in the previous blog entry). I knew very little about this woman and really only remembered the Autism Society Workshop using a quote from her to cap off the pessimistic workshop my mom and I went to. The quote was "different. not less than." I resented the quote because it was after 2+ hours of hearing how I should be prepared for Sofie to be less than my expectations. But after watching the video lecture I feel differently about that quote. This blog entry is already a novel, so I won't go into too much detail about it. Essentially she said take whatever an ASD kid is fixated on and use it to reach them. After watching that I felt I knew how to use my latest tool for Sofie. I had just made a 58 page picture book for Sofie. It was my alternative to the less-than-successful PEC cards. I'll talk about that in my next entry (it's a really involved, tiring process that could offer some really cool results-fingers crossed). Before the appointment and Grandin video I was tentative about fully committing to the book. Would it be too much? Would I frustrate her and make her pull away? Now I have this overwhelming feeling that she needs to be challenged. I know what her frustration sounds like and I know what her anger sounds like. I can work around anger and be cautious not to frustrate her. I can do this. It will be a ridiculous amount of work (again, you will laugh when you read how involved it is) but if Sofie is visual like the doctor said and possibly hyperlexic (word junkie of sorts), this might work.

I'm exhausted and excited for this new experiment Sofie, Ozzy and I are going to try. Let's see what the rest of this week holds. All I know is, so far so good. Okay, I will stop rambling-for now.

Stay tuned for Sofie's word book review!

Tuesday, February 19, 2013

Sleepy and Happy About "Tomorrow"

I meant to blog tonight but I am exhausted! Sofie had a big day. Neurologist appointment went great and speech therapy wasn't a disaster. I will call that a victory! BUT I do need to clear out my brain tomorrow night about Sofie's appointment and such, so stay tuned :) In the meantime, click on the link below. It's awesome and fills my head with a lot of positive thoughts.

For Anyone Who Loves An Independent Mind

Tuesday, February 12, 2013

Here and There

It has been too long since my last entry. Maybe in some ways that is a good thing. The reason it has been so long is because other areas of life were occupying my time-things not related to Sofie's diagnosis or even Sofie. "Live. Love. Repeat." This is a marathon and I think it's really healthy to spend some time spinning the other plates in my life. Not to mention thinking about Sofie's therapy techniques 24/7 is exhausting. I can't live and breath it every second of every day. You stop seeing your child if you do that.

Seeing Sofie is VERY important to me and Ozzy (and all who love her). I am still confused or conflicted over the competing schools of thought regarding "labeling" and "testifying." I think I am coming to a solid footing on the topic. I understand where some are coming from when they say "don't tell everyone about her diagnosis. that is all they will see." But at this stage in Sofie's life I don't know if that thinking makes it more about me and less about her. I want to be able to tell Sofie about this time in her life with great pride in her- and us. I never want to have to explain to her that I kept any part of her a secret. I don't think that means me introducing her as "my daughter with Autism." But I will proudly testify how amazing my child is and how hard she works to attach herself to this world. I think of it like if Sofie got an amazing grade on a chemistry exam and someone said to me "wow! Sofie is so bright! That girl can do anything!" Keeping it to myself that she studied hard for a whole week and struggled with balancing equations doesn't make the victory any sweeter. I'm going to share with great pride that my daughter works hard and, yes, can do anything.

Now when Sofie is older the story will change a bit (as it always does). Autism is one part of her identity. And in the same way we all process identity, Sofie will decide how much she wants to share with people. I hope and pray that it is something she can choose to share and not something that is an obvious barrier between her and socializing with people. I really believe in my heart it will be the former. How can you go on this journey and think anything else?

I don't think I am blissfully naive either. Sofie's speech therapist thinks that she has made a lot of progress in a short period of time. The new obstacle in focus is imitation. If we can get Sofie to consistently imitate us then it will open up the door to Sofie catching on quicker with expressive language. I say "quicker" because Sofie is babbling a lot these days and little words are coming out. It's VERY exciting and gives Ozzy and me so much joy. Sofie says "yeah" for an affirmative response and even said "yeahbaybay" for an emphatic affirmative. She also repeats the word "ready" in 'ready, set, go.' And in an awesome moment, Sofie ran over to Ozzy when he came home the other night and said "hey daddy" with a big smile and a lot of eye contact. :) :):)

We have a neurologist appointment next week. I am not holding my breath or scared of what they will say. I have lost a bit of faith in what doctors say. I trust the therapists' opinions more because they actually know my daughter. Sofie doesn't fit any stereotype of Autism and part of me is expecting to hear "your child doesn't have autism" or "oh boy, prepare yourself for surprise scary hypothetical that I can't back-up but I will say anyway." You would think I would be praying for the former but there is no biological test to prove that Sofie doesn't have Autism. The only way to say Sofie isn't on the spectrum is for Sofie's language and socialization to improve. Doctors obsessing over this idea of "does she or doesn't she have autism?" is really doctors focusing on a label. Do they really think it is the label that keeps me up some nights? No, its the symptoms. The last neurologist we saw was happy to say Sofie 'didn't have autism and it was too early to diagnosis' but had no concrete reason Sofie was so delayed in some areas. I honestly don't care about this label. Maybe that is why I am so comfortable saying it these days. It's a name scientists gave a list of symptoms. It is not a tactile thing or person. And the more times you say the more trivial the word feels coming out of your mouth. I am lucky. Other words don't have the same powerlessness when you say them over and over. And my heart goes out to all those who are confronted with THOSE words.

I am not saying I am not scared of the future. I am just getting better about not thinking of it too much. I try to remind myself that if Sofie was a typically developing child I would be psychotic to worry how she would adjust in high school, so why bother? We will get there. Time moves fast enough on its own without me imagining scenarios of Sofie's schooling and teen social life. Pre-school and nursery school scare me sometimes but again I have to keep my thoughts here. And "here" is not a bad place to be these days-plus "here" keeps me very busy with therapy appointments and therapy homework for mommy and daddy. It reminds me of a childhood song on one of my favorite shows, "Fraggle Rock." A character sings that you can never be 'there' you are always 'here.' The character is singing it in a sad tone because he feels stuck but today, for me, that is a comforting song.

Saturday, January 26, 2013

Late Night Short Ramble

I just accidentally deleted the post I was working on. It's that kind of a day. Maybe it's for the best. Brevity might get the message across much better than the clutter of my brain on the keyboard. I really do picture it like I just dump the contents of my brain on the laptop. And these days most of that is centered on Sofie. I am having a hard time balancing things. I don't think the human brain is meant to think about something so often. And I don't mean Sofie, I am happy to have that little girl wander through my thoughts all hours of the day and night. It is the lingering questions that are draining me. I can't get off the idea that there is SOMETHING else I should be doing to help Sofie. Maybe one more exercise, therapy or vitamin that I missed would help her speak. It's stupid when I see it typed out like that. Perhaps that is why I blog, to see it written out and realize I am being way too hard on myself. Our daily routine doesn't really help squash the Autism 24/7 narrative. Sofie has therapy 3 times a week (hopefully 4 times sometime soon) and has homework to do when the therapists are not here. I have to remind myself I don't have to do the homework 12 hours a day. It's hard not to press for each moment with Sofie to be a teachable one. But maybe my perfectionist thinking isn't completely off-maybe each moment with Sofie can be a teachable one but maybe I shouldn't be hellbent on always being the teacher.

Wednesday, January 23, 2013

Check out my PECs

So yesterday I found out that we are going to up our game with Sofie's therapy and begin using picture cards or picture exchange cards (PECs) to help Sofie's frustration and ultimately her language abilities. I was overwhelmed by hearing this. I began crying while talking to the speech therapist about what she thinks is going on with Sofie. Nothing she said scared me. But the fact that she offered no concrete idea of what is going on scared me. 99% of the time I feel like I can do Sofie's therapy requirements but that 1% of the time is a killer. The idea of creating a language on cards for Sofie to speak feels daunting. Luck would have it that I hit the wall the same time my family was coming to help with Sofie so Ozzy and I could go out TWO nights in a row. Aside from the dates, I also got a lot of help during the day. That makes all the difference for a mom on the edge. Today I started taking photos of Sofie's favorite food and we will laminate them and place them on magnets to attach to a board. And with a little luck Sofie will hand me one of those cards to help me know what she wants to eat. And from there we will keep adding more and more cards. After a little rest and some time out as a wife and simply as me, I think I am ready to work on my PECs. 

Saturday, January 19, 2013

Shaking up the daily routine and other experiments

We are embarking on a little experiment inspired by something Sofie's Speech Therapist said. We were playing with a little fishbowl with stuffed fish Sofie had to pull out with Velcro fishing pole. The therapist said she was gently holding onto Sofie's hand "to break the cycle" of putting the fishing pole in her mouth after each time she pulled a fish off of it. The therapist said that it is easy to get into a routine and that Sofie's mouthing of objects can easily become just part of how she does stuff. That observation got me thinking about Sofie's casual rituals. She is not one to obsess about doing a particular act but there are certain activities that work their way into her daily routine. One activity that is proving to be hazardous is Sofie's cha-cha tip-toe move when she gets excited. I have believed for a very long time that Sofie's tip-toe move occurs when she is really happy and is connected to her challenges expressing excitement in a more traditional way (squealing, dancing, etc.). I think Sofie's challenges with expressive language have created unique ways of communicating passionate emotions. When Sofie is VERY angry she scratches the ground or her legs with a very angry grimace. She sometimes squeezes her hands and shakes with toddler-tantrum-rage when she is mad.

As I mentioned earlier, it is Sofie's fits of happiness that are the problem. The other day Sofie got so excited watching a TV show that she did her cha-cha move so fast that she got tangled in her feet and hit her cheek on the entertainment center. Luckily she barely had a scratch but the incident made me wonder how we can curb the cha-cha-ing. I think I am going to try to use the therapist's advice about breaking cycles with Sofie's risque dance moves. So the experiment begins...

Ozzy and I are going to try to gently intervene as much as possible when Sofie is cha-cha-ing. We started delicately running our hands down Sofie's calves to her feet and saying "feet down." Amazingly enough, Sofie puts her feet down when you do this. And she keeps her feet down when you keep your hands on top of them. And even when you pull your hands away, her feet stay planted for a little bit. She returns to cha-cha-ing only when she can't contain her excitement any longer. I am hoping that through some gentle intervention we can help train her brain to express her joy with her mouth. Of course, she is yelling and babbling more these days (thank God) but I am hoping this will help bring things to the next level and perhaps save her from a few bumps and bruises too. The Speech Therapist said Sofie's wonderful progress forces us to up our game and expect more from her. The curse of having such a smart girl :).

Along with working on Sofie's cha-cha-ing I am trying to push sign language more for the same reasons-Sofie's amazing brain. She caught on to saying 'please' after only a week of working on it. I want to introduce the sign "angry" for when Sofie is very upset. MAYBE she will be less destructive if she can say how she is feeling. Who knows, right? Worth a shot. Regardless, we just have to keep building Sofie's vocabulary. Sofie has a pretty natural way with sign language. We are so amazed by her intelligence. What an amazing girl.   

Thursday, January 17, 2013

Defining Sofie

Today was not a wonderful day. Sofie has had a cold all week and since she is mommy's little shark she has been in a crabby mood. That girl loves to move and go out and about. We have some serious cabin fever. And today she had two therapy appointments. Two therapy appointments that illustrated perfectly two of the three schools of thought I have seen with an Autism diagnosis.

First school of thought is to treat the symptoms and ignore the labels. I like that way of thinking. We are lucky that our established therapists are students of that school. From a practical standpoint, I like focusing on TODAY. I like the little goals. It makes it so much easier to just live life and be happy. It keeps us grounded and focused on how lucky we are. Life is good. We are able to just enjoy our family and not try to map out the next ten years of Sofie's life.

Second school of thought is to embrace the label and let it 'empower' you because you somehow have a crystal ball with this diagnosis. I have observed that professionals that follow this line of thinking are eager to 'help' you by mentioning things to think about. And out comes the crystal ball, they tell me about how Sofie will adjust to school, and the many opportunities kids "like her" have in life. A potential new edition to our therapy team seems to carry a crystal ball and a medical dictionary. I felt like she wasn't seeing Sofie. The therapist was VERY qualified and very kind. I just felt like she was seeing the diagnosis and not the symptoms, if that makes any sense. And I felt the diagnosis was blinding her to Sofie's strong personality. I felt like saying "she isn't paying attention to you not because she can't, she won't because she is annoyed you are coming on so strong." Again, I'm not vilifying professionals that have this brand of bedside manner. I just wish I could say to all the crystal ball medical psychics, "Can you please just LOOK at my kid? I mean REALLY look and maybe listen to what I'm saying too." I know they care (why else would they be in that field) but it gets frustrating.

The third school is the one I see most often in the doctor's office. That school says that we should "wait and see" or "give her time." I am asked to trust the 'gut' of the doctor (based on nothing). I am told that I should wait until Sofie is two or three to intervene with therapy. I am told overreacting and doing too much therapy will be harmful. You might have guessed, I hate this school of thought. Again, I know they mean well but COME ON!

So where does that leave us? Well, like I mentioned earlier I am eager to focus on symptoms. I think it is the only sane option. The thing that confuses me is how I am supposed to feel about the word "autism." I have been told that we should keep the diagnosis to ourselves because it will change how they treat Sofie. I have been told that I should embrace the diagnosis and prepare myself for special schools and work placement programs. I have been given a long list of possible limitations with Autism and then quickly reminded that it is "different, not less than" Hmmmm well it seems like they are building a case for "less than." So again where does that leave us? How do we move forward with this word 'autism'?

A former co-worker with a son diagnosed with autism said to me in a sweet email that "if you know one child with autism, you know one child with autism." That makes so much sense to me. It's true. The reason Sofie has confused her pediatrician and neurologist is that she is unique. She doesn't fit some preconceived notion of what Autism should look like. She is far too complex for some checklist. Why am I happy or sad based on how many stupid checkmarks Sofie gets on some riddiculous development test? And let me add it is a development test that I have the joy of hearing from one professional after another that there is something 'biased' or wrong about it. It seems so simple writing it-why let the tests dictate our happiness? And yet some days the checkmarks (or lack thereof, depending on the test) get me down. The new potential therapist gave her assessment results today-not a feel good. But I chalked it up to her chaotic testing style. In short, she pissed Sofie off and Sofie had no interest in being her dancing monkey. When I think of it like that I don't have a developmentally delayed toddler, I have a little girl that doesn't like being pushed around and won't engage with anyone who tries to. That sounds much better.

Maybe this is all semantics- autism, autistic, challenged, delayed...blah blah blah. If that's the case, then I will never hide Sofie's diagnosis based on fear of that word. Sure, Sofie has been diagnosed with Autism-no secrecy. But I will work hard for it not to define her either. I don't want to give people an easy way to summarize who they think my kid is. She is far too complex for that. My sister  came up with an awesome line for our team tshirt for the Autism walk in April. "One of a kind in a million and one ways." I love that. I took it one step further and made it the defintion of a Bubulubu. That's a word I don't mind calling Sofie a dozen times a day. It's a cute little pet name but it sprung out of my love for her. Ozzy and I didn't assign it to her. The pet name fit because she is too sweet, like her Mexican candybar namesake. And the very name is silly and nonsensical. I say the phrase "Sofie is such a bubulubu" and I immediately think of a few dozen adorable things about Sofie. I can see her sassy smile and I am reminded of a bunch of times she made me laugh uncontrollably. If I say the phrase, "Sofie has autism" it seems out of place and void of any whimsy or any other magical part of Sofie. I don't see ONE part of what makes Sofie, Sofie. Using that logic, the label of Autism is for doctors and insurance companies not for anyone that really knows Sofie. I think Bubulubu fits much better. BUT I think I will refrain from telling the little gym director "Sorry my daughter licked your window, she is a Bubulubu." :)     

Monday, January 14, 2013

Team Bubulubu gives rise to the Bubu Babblers!

Sofie is doing so insanely well. She is making such amazing progress. While it has been tough at times, and a little scary, I am feeling overwhelmed with optimism tonight. I want to translate that excitement into action. Ozzy and I are going to co-captain a walking team for the 2013 Walk Now For Autism Speaks on April 13th in Raleigh, NC. We are the Bubu Babblers!

 If you would like to make a donation please click on the Autism Speaks Icon in the right hand column of this blog. And thank you all for continuing to follow our journey. Ozzy and I said we feel like we have aged ten years-in a good way!

Sunday, January 13, 2013

The Adventures of Bubu the Window Licker

Sofie is keeping us running around 12+ hours a day, so we thought we would return the favor and let her run off some energy at the gym. On Saturday we took her to the Little Gym for a class. We had so much fun. She did great. She handled it so much better than our last attempt in November. She seemed more comfortable in her skin. I really think the diet is helping calm her a bit. What is funny is that calming Sofie means helping her run MORE and yell MORE. There was so much congestion in that brilliant brain; I think the diet and therapy techniques are helping clear the fog more and more-every day. Ozzy and I were so happy to see Sofie running around the gym squealing. There were so many kids and Sofie didn't check out. She stayed in the moment. The first 20 minutes of class she was very present and seemed to be loving every second of it. And after the first 20 minutes, those shiny windows were calling to our little mischievous Bubu.

We could tell the chaos of a dozen children running around was getting to her. She was munching and sucking on her fingers, pulling on her ears, and licking the windows. These things she does are so intimate. The cute little blond girl having a tantrum next to us was getting way more attention than our sweet little window licker. Sofie's unique ways of coping are executed with a coolness that her parents certainly never came close to having. I hope she does these things in such a cool manner because she is so comfortable with herself. I never want to think she does it in such a quiet manner because she is trying to hide it. I really believe that little girl KNOWS who she is. She will have such a unique voice- she already does without saying a word. At the end of class, the teacher blew dozens of bubbles and all the other kids were waving their arms in excitement trying to pop as many as their little arms could. And in the middle of that storm of cute little arms was Sofie quietly walking with a smile on her face intently looking at all the bubbles and selecting bubbles one at a time to pop. How did we get so lucky to have such a sweet girl?

On the topic of sweetness, I need to share a story from gym class. Sofie was trying to lick one of the windows AGAIN and Ozzy gently picked her up and said "I know Sweetie, those windows are nice and cold but they aren't ours-so we can't lick them." He said it so naturally. It was the highlight of my weekend. We are doing great and as long as we remember to "live, love and repeat" we are going to grow stronger each day (even on the crappy days).

Love to all of our family and friends, we are the luckiest family in the world.

Tuesday, January 8, 2013

She found the purple cat!

Big stuff is happening in our house! I feel like things are really starting to connect for Sofie. She is babbling consistently now. I am so happy to write that. Around 15 months she began to babble less and less. Yesterday Sofie said "Bay" for the first time since mid October. That was wonderful because it was Sofie's answer to "Who is that [in the mirror]?"That was really exciting. It was especially exciting because it was after a few days of Sofie seeming to return to her problematic habits (licking walls, putting everything in her mouth, not answering to her name, not playing). I was beginning to worry that we were losing our footing after so much progress. Sofie's speech therapist reassured me that it was probably Sofie reacting to being away for the holidays and was returning to her sources of comfort. What is more soothing than a nice cold wall to lick?

I wish I could organize my thoughts a little better this evening. Maybe after a good night's sleep I can put something together that is at least a little coherent. Right now I can only ramble. I am all over the place. The video above will do a MUCH better job illustrating how wonderful tonight was. I am going to go to bed tonight hoping tomorrow is half as good.

Going to bed a happy mommy and proud of my Bubu.