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. 

A Happy Holiday and Wishes for the New Year

I am having a wonderful long weekend with family and it is making me wish for an unreasonable gift from Santa: time travel. I want to go back to the day of the diagnosis and tell myself that Christmas would still be Christmas and my little girl was found on that day- not lost. I would say the new normal is so much brighter than the forced normal I was pushing for all those months. I would try to reassure that scared mom that whether this diagnosis is correct or incorrect has no bearing on the journey forward. I would tell her that the medical professionals offer few answers so embrace your mommy instincts. I would share that there are more tears ahead and more days of questioning. But I would be sure to add that with the diet switch little Bubu would become even sweeter and funnier. I could tell myself on that day a long list of wonderful things Sofie has done since the diagnosis. Instead, if Santa granted my wish, I would share one thing that "Diagnosis Mommy" would feel the full weight of-two days before Christmas I asked Sofie to point to the Elmo on my PJs and without hesitation she pointed to Elmo. I picture Diagnosis Mommy having a hard time believing that was possible-especially because it was one of HER far fetched wishes for Santa.  

Knowing the road ahead would be wonderful, I wish ANOTHER future me would visit me tonight and tell me about how Sofie is doing six months from now. Is she speaking? Does she know how to play like the other kids her age? But life doesn't work like that (no hard feelings Santa). Sometimes my head could explode with all of the different scenarios that could play out from a single action. I have to stop myself and keep myself HERE. And to be honest "here" is pretty spectacular. I have my health, the health of those I love, a roof over my head, and much more. And yes, I have a daughter that has been diagnosed with Autism. A beautiful daughter that is perfect and has been labeled with a disorder that doctors know so little about that they can't agree on the diagnosis. One silly stupid label- autism. The word is such an oversimplification. So many different stories are tucked away in that word-and yet doctors feel comfortable using it to label so many kids. Maybe Sofie has Autism but that one word fails in so many ways. It amazes me that doctors don't have more specific labels for the disorder. They simply talk about "mild" and "severe."If it is truly a spectrum, why only two choices?  I find myself thinking less and less about the word "autism" these days. My head is filled with the everyday, love for my family, therapy appointments and wishes for the day I am just sick of hearing Sofie jabber on about this or that. I would love that. I like to fantasize about her talking but I don't do it for too long. Because not so long ago, I was fantasizing about Sofie pointing, making eye contact, babbling and that is no longer a dream- it's reality. In many ways I guess you could say I'm living the dream. :)

Santa, you don't need to get me that time machine but a talking baby would be nice. But no pressure, Sofie is doing just fine. And I am deliriously happy to say that my little family unit is better than it has been in a long time. Sure the road ahead is going to be filled with big ups and downs but I feel like we can handle it. I'm not sure I will feel like that tomorrow. But two months ago I would never have imagined writing that.

I guess I got my Christmas wish early. Happy Holidays and thank you to everyone who has been in our corner.
 

Cracking The Bubulubu Code

Today turned out to be an awesome day. I needed an awesome day. I felt like I hit the wall a bit yesterday. I was feeling like I didn't have a place to plant my feet with this whole diagnosis stuff. I have been offered emails and phone numbers of mothers with children diagnosed with autism, much older children. I don't want to know about anyone else's road traveled. Everything I read says that the journey ahead is going to be very unique. I met a mom with a three-year old diagnosed with autism. I loved talking to her. I felt like we were on the same chapter. We had different interpretations of the chapter but I didn't have to deal with spoiler alerts from parents that have 'been there.' I may sound bratty right now, but I don't want to know about how they know exactly what I'm going through because they qualify it with telling me how hard the road ahead is. I don't want to be prepped for the road ahead with stories of struggle. I met a woman that was very sweet and compassionate but scared the crap out of me. She has a child with an undiagnosed severe developmental disorder. The first thing out of  her mouth "Can she self-feed?" She goes on to tell me about all the services that are available to my 'special needs' child. And then she gives me some advice "Focus on your marriage. The divorce rate for children with special needs is very high." Okay, thank you. While this is a very good piece of advice I didn't want to hear it right now. This very sweet woman is coping with her own unique experience and I appreciate the advice but I didn't need to hear about divorce rates right now.

It reminds me of a quote from one of my favorite writers- David Sedaris. It was a short story about his mother's cancer battle and passing. He was tired of everyone trying to help him prepare for her death. He writes, "you can't prepare for famine, if you have never known hunger." He goes on to write that it is better to eat up and savor every bite. That is how I feel about the road ahead. Thank God I am not having to cope with something as serious as cancer but I am tired of well-meaning (very sweet) people trying to prepare me for what is ahead. I don't know what is ahead. And it isn't helping hearing about their struggles. Their struggles scare me and make me question if I am tough enough for the road they think I am on. I hope I am not coming off as ungrateful. Like I mentioned earlier, I hit the wall-which is why I needed today.

Sofie and I had a PJs day. I was tired of holiday errands and decided we just needed to play. The cold rainy day helped seal the decision. I spotted Sofie while she bounced on her trampoline for about a half hour AND she actually went down easy for her nap. VICTORY! I tried to begin some of Sofie's homework from the speech therapist-that didn't go as easy. I am starting a game with Sofie where instead of Sofie doing the sign for 'more' or pointing, she has to knock on my closed hand to reveal the object she wants. So far she gets really mad when I do it. But I try to remind myself that is how she felt about pointing at first. The game is supposed to lay the groundwork for the give-and-take of conversation. It's cause and effect. The therapist said anticipation is a big part of the puzzle. She gave me some hints on how to create moments of anticipation with Sofie. This idea of anticipation took this afternoon's playtime to the next level and officially made my day awesome.

For the thousandth time I started stacking blocks. And for the thousandth time Sofie quickly swatted the blocks away. I then remembered that the therapist said some kids will stack other objects. I had tried stacking random toys but I hadn't tried stacking books. So I began stacking books. "Mommy puts the book ON TOP..." Sofie didn't swat the books away but she didn't come over to me either. I wasn't very interesting, I guess. And then it dawned on me-anticipation. I have been performing this block routine for Sofie a thousand times but I never brought her into the performance. If you are watching a play you don't hop up on stage and join in. I thought I was acting out the task I wanted her to perform but she was just seeing a boring show. We tried forever with pointing in a similar failed effort. We performed 'pointing' countless times and it didn't mean anything to her. So I took the therapist's lesson to heart. I took the books and gave it another go but this time I added the important element of anticipation. "I'm going to put the book onnnnnnnnnnnnnnnnnnnnnnnn top. Mommy is going to put the book onnnnnnnnnnnnnnnnnnnn...." And I saw Sofie give me this big smile while she looked at the book hovering above the table. She knew I needed her. She ran over and pushed her hand on top of the book telling me to put it on the table. "....Top! Yay Sofie!" We did this a few more times before she lost interest. This was huge! She did something similar when she began putting toys in her toy chest. I hope that means we have cracked the code on stacking! I got ambitious and switched to legos. I was fully prepared for this to fall flat but she went with it! I said "onnnnn...." and she pushed her little fingers on top of the block to attach it to the lego base. I was so happy. This made my week! The lows suck but these little victories reinvigorate me instantly.

After the blocks we just kept playing and being silly. I took a little cup and asked Sofie to put her pacifier in it. I helped her the first time and then she did it on her own from then on. She was a little Bubu possessed after that; she started taking all her toys and tried shoving them into this little plastic cup. It was so funny. We can work on spatial relations another day. Today was just wonderful and it didn't start out that way-that's a wonderful lesson. This afternoon was filled with giggles, laughing and rolling around on the floor. We have already come so far from where we were a month ago. Usually at this time of day Sofie was off in her magical world. But now she was running around playing with me. And with all the silliness Sofie found time to do her new job. She has the thankless job of throwing her toys over the half-wall that separates her playroom and the living room. She throws them back and forth. Object permanence has been a bit of question mark for us. I laugh thinking of her throwing her Abby doll over into oblivion and then coming around the wall saying "Are you kidding me? They have an Abby in here too? Oh well, let me make this one disappear too. Back to the playroom...Wait! Are you kidding me? Another Abby!?"

Today was great. I needed it. I'm going to go to sleep happy. Tomorrow is more therapy. Live. Love. Repeat.

A little victory feels huge

Our little Bubu has never really understood how to express her thoughts outside of crying or that adorable smile. In recent months it was a big deal when Sofie was able to communicate what she wanted. And for the past two months that communication was largely limited to waving her arm at you to go away. "Sofie want water?" *Arm wave and walks away with no eye contact. There was a brief window where my little Bubu said no and shook her head in disagreement. But this was truly a short period of time. The head shaking was replaced by the frustrated arm wave and we couldn't seem to shake her of the new habit. And that is why the little accomplishments of this week feel so immense and exciting.

We had been working with a few baby signs since sometime in September. She hated when I would make the sign for "more." She would yell and wave her arms. She seemed to hate being put on the spot with a dreaded lesson from mommy or daddy. It made teaching her new things very overwhelming. A big part of me thought that I might be doing it wrong. That idea of "it" was pretty expansive for me. It covered a long list of mommy-duties and the fact that my Bubu was so frustrated made me feel like it could be handled better by anyone but me.

The diagnosis refocussed me and Ozzy. Speaking for myself, I could see this wasn't about me. Bubu had a challenge and we need to take steps to help her move past the obstacles and embrace how unique she is. After taking some time to process it, I realize that autism isn't going to define her. She has so much to give this world that I can't imagine putting a limit on her. The reason I often refer to Sofie as "Bubu" in this blog is because of the long nickname we gave her- Bubulubu. It's a candybar in Mexico. It's insanely sweet. Imagine a candy company getting very carried away with trying to squeeze every sweet ingredient into one bar. The result (in my opinion) is a candybar that is just too sweet-and that is our Sofie, too sweet. I like reminding myself of that while I navigate my way through this time. She is still Bubulubu. Nothing has changed about that-we just have the tools to help give her a voice, now that we know what is going on.

One of the many tools we have is possibly the simplest-the diet change. Bubu has been gluten and dairy free for ten days. I know it's a controversial diet but all I can say is my little girl shakes her head "no" in response to a question. She shakes her head no when she is upset with you taking something from her. She didn't "speak" this clearly 11 days ago. A bigger accomplishment is that Sofie is using the sign for "more" correctly. She asks for more food with the gesture. She also uses this gesture when she wants something. It still shocks me when she comes over to me and makes eye contact and then quickly hits her hands together in two quick moves (sign for more). She is beginning to see that she can express herself. This is huge.

This morning Ozzy was leaving and Sofie shook her head no and then tugged on his pants. After pulling on him, she made the sign for more. Ozzy said he had to leave and she shook her head no and repeated the sign for more. She wanted more of daddy. Our Bubulubu is too sweet. We are so lucky.