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.

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.

Table Time With Mommy & Her Super Hero

http://www.youtube.com/watch?v=OgZ1aF8RoF8

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.

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.

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.