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.