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.