Sunday, December 23, 2012

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.

Wednesday, December 12, 2012

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.

Monday, December 10, 2012

Towers of Babble: Trying to make sense of feeling crazy

I can never sleep the night before Sofie's therapy. I am hoping that gets better over time. Tomorrow is Sofie's second speech therapy session. I have to remind myself that she is still a toddler and that I can't get down when she doesn't stay focused for very long. In sports there is a common explanation for when someone loses or fails to meet expectations:  "they wanted it too much." Is that a real 'thing'? I don't know for sure, of course, but it feels true these days. I can't help but wrap myself up in every therapy session. I sometimes wonder if Sofie picks up on my desperation and decides to check out, so to speak. Is that even possible? Don't get me wrong, therapy is going pretty good. I just wish Sofie was more 'into' the therapy. She isn't incredibly interested yet. I am probably expecting way too much from her, which isn't fair.

But the worst is when I am home alone trying to teach her something from therapy. I must say first that it is by far the BEST feeling in the world when my little Bubu listens. She is pointing now (I'll get into that later)! It is those amazing highs that make the lows seem so comically pathetic. Take today for an example: here I am a grown woman cheerfully saying (over and over), "MOMMY IS GOING TO PUT THE BLOCK ON TOP OF THE OTHER BLOCK. YAY MOMMY. MOMMY IS GOING TO PUT THE BLOCK ON TOP. ON TOP. ON TOP OF THE BLOCK." I say over and over while Sofie is running around the apartment and occasionally stopping by to happily knock over my stack of blocks. Every professional keeps saying that Sofie is a unique thinker so I decide to run with this idea. Undeterred by my destroyed block tower I begin stacking random objects-any toy I can find. Maybe she will be thrown off a bit and not instantly knock it down. Maybe she will begin stacking.  This did not happen. Sofie was just more thorough about her destruction. Instead of simply knocking over the blocks, she was now inspecting the toy rubble for pieces to further dismantle. My lego accents to my tower didn't stand a chance. You would think I would let this go at this point. Maybe I would do some laundry or simply play a new game but I was a woman possessed. I had a stroke of genius, "I'll trick her into stacking blocks. And then she will see what she did and swell with pride and become a stacking machine." It looks idiotic reading that. Oh well, best of intentions right? So I take a clear plastic container and try to entice Sofie into putting the blocks in it. My hope was that Sofie would continue putting blocks in the container and get to see that she was stacking the blocks on top of one another. As you might have guessed, Sofie was completely ignoring her crazy mom at this point. What is that they say about doing the same thing over and over again and expecting different results? Well maybe I am a little crazy. I honestly think it is a requirement for this chapter in our lives. "live. love. repeat." I am looking down at the wristband I created for Team Bubulubu and chuckling a bit. "Repeat" truly sums up my days. I am repeating actions over and over hoping that this time the lesson sticks. Ahh the wonders of parenting. I am willfully driving myself crazy because I am on a mission to have that one moment where she surprises me and stacks a block. It's funny how these tiny milestones make you reevaluate the big picture. Having a child diagnosed with autism spectrum disorder you live for little milestones that 'normally' developing children seem to reach so easily that parents often forget when it occurred.  It is this bizarre gift we have been given. Sofie's unique learning style is forcing us to simplify everything. She is forcing us to pause and break things down into steps we didn't even think of before. And Sofie's uniqueness is making us celebrate things we would have taken for granted otherwise. I know this because there is so much about Sofie that I am embarrassed to say I take for granted every day. I can't remember the exact  day (or even month) that Sofie began running. But I know that I will remember when Sofie started pointing.   

My crazy repetition paid off with pointing. The play therapist gave me some great advice. She said that we need to help explain to Sofie what pointing means. She said it is too abstract for her right now. The therapist suggested I use Sofie's love of mealtime as a teaching opportunity. The goal was (relatively) simple: have Sofie touch things she likes with one finger.  I started at the very next meal after therapy. I held the chicken and said "Sofie, more?" Sofie did the sign for 'more' and expected to be handed the bit of chicken. She was NOT happy when I held on to the chicken and took her hand and had her touch the chicken. I  fought her stubbornness and held her little hand so that she pointed at each piece of chicken.  I was laughing at the absurdity of the scene. Sofie is yelling at me and trying to get my hand off of hers all while I am cheerfully shouting "POINT. POINT. POINT. POINT AT THE YUMMY CHICKEN." By the next day we graduated to her extending her pointer finger with her three fingers and thumb adorably tucked away. Fast learner! She still needed me to prompt her everytime. I had to hold her wrist in order to get her to make the right gesture. As the day wore on I was making Sofie touch anything she wanted with her pointer finger. "Sofie, point point point?" And I would take her hand and say "point. point. point." After only TWO days Sofie didn't need me to hold her arm to prompt her. I would ask her if she wanted what I had in my hands. She would make the sign for more and I would say "point point point." And she would touch her little finger to the object in question. Amazing. After three days, she didn't need me to prompt her everytime. I noticed she was beginning to extend her little hand towards the wanted object -she was pointing! She hasn't done this COMPLETELY independent of me just yet. I am looking forward to when she sees something she wants and starts pointing-no "point. point.point."

My head is swimming. I think I am going to hold on tight to our little pointing victory and try to laugh off the absurdity of block towers. You can't get too upset over blocks right?

Live. Love. Repeat.   

Bubu Bounces!

This is actually Sofie relaxing a bit before bed. Jumping calms her a lot. We have read that kids on the spectrum are often calmed by jumping. This makes sense because Sofie will jump for twenty minutes or so before she falls asleep in her crib. We decided to give her a head start on this particular night.

Bubu Babbles!

Tonight our little Bubu did some great babbling after her bath. She is making some great sounds. We feel like she is SO close to saying a word. So close! I want to squeeze the words out of her. I know they are in there!

Saturday, December 1, 2012

Learning to think outside the box

I have wanted to write every night this week but holiday preparations and sleepiness kept me from the keyboard. I keep hitting backspace because my typed words feel too small, too simple for our story. So much is happening each day, where to begin?

Our little Bubulubu is doing amazingly well. We are so proud of her. The new diet is a miracle. Anyone who stumbles on this blog that is looking for answers for their little one, please understand what I mean by miracle. The diet has helped clear the fog that was keeping our little girl so far away from us. Sofie is present for the majority of the day. She is making great eye contact. The time she spends in her "magical little world" is minimal compared to where she was prior to the diet change. But the diet hasn't helped her find the words she lost (at least not yet). She is babbling a bit, which is wonderful... but no words yet. For the tireless researcher (also known as a concerned parent), please understand the GFCF diet is a tool not a cure. We feel really confident that the diet change will make Sofie more receptive to the therapy she is starting.

We have such high hopes for the therapy and that is scary. It is sometimes scary to let yourself daydream about where we will be six months or a year from now. When we got the diagnosis I felt like I finally had footing after months and months of being adrift. I felt like we had something to build a plan around. This past week the doctors have made me feel like I was a fool to march forward with such certainty. I knew there were SO many unknowns but at least we had a name for what was going on: Autism. Now they are throwing out observations that carry a lot of weight for me because they are "professionals". But these professionals seem like they are just making guesses based on how my toddler acts on a particular day. The neurologist thought it was premature to "label" Sofie with autism and thinks she is just doing things on her own time. Great news right? And he follows up this observation with an innocent anecdote to explain Sofie's severe language delay. He says he had patient who was diagnosed with autism and after years of not saying a word an MRI revealed that the language center of his brain was malformed from birth and he didn't actually have autism. What a cheery story. What am I supposed to think? The neurologist was kind and spent a lot of time with us. He did his best to answer all my questions. And that was the disheartening thing. This was his best and he was offering anecdotes about patients and stories about his late-talking kids. Telling me his "gut" felt Sofie wasn't autistic. He didn't offer any explanation for why Ms. Bubu likes to go to her magical world where you can wave your hand an inch from her face and she stares right through it. He didn't explain why Sofie doesn't want to point to objects she wants. But this was his best. This man is a specialist and he was diagnosing autism based on his gut. Autism is a mystery to everyone apparently. No wonder parents seek refuge on message boards and alternative therapy websites and books. One thing that made me feel very positive after the doctor's visit was the fact that the neurologist seemed so bored by Sofie. He sees very sick kids and Sofie is a healthy vibrant girl. It's a wonderful feeling to have a pediatric neurologist think your child shouldn't be in his office. We also had a follow-up with our pediatrician. She seemed short on answers too. But she said that we are smart to move ahead with the therapy and that she was happy with Sofie's eye contact during the appointment and was hopeful about the future. She said there is a lot of room on "the spectrum" and that time will tell us where Sofie fits on it.

It's confusing to be given so many opinions. I felt weird after the neurologist appointment. When we got home I noticed the evaluation arrived in the mail. THE evaluation, the one that diagnosed Sofie with autism. It was very long and detailed in explaining their findings. It scored Sofie as 14 months old socially and emotionally. And it scored her as 5 months old in regards to language. That's sobering. But reading the report it reminded me where we were a month ago. That was a different kid. The evaluation describes a toddler that roamed around the room and didn't look anyone in the eye, not once. It mentioned how Sofie was silent and never responded to her name. Seeing it all put out there in a two page report wasn't scary like I thought it would be. It was so much scarier when those observations were floating around in my head. Seeing it on paper just reminded me of how far we have come in one month. This diet is lifting the fog. We are moving forward. It was a great feeling after so much confusion with the doctors.

I apologize to anyone reading this, I am rambling so much tonight. My thoughts are all over the place. I will definitely have to get back to writing more often. There is far too much in my head.

I think with all this confusion I am learning that I need to embrace the diagnosis without letting it define Sofie. I don't KNOW if Sofie has Autism. She is showing a lot of signs of having mild autism. But she is also contradicting a lot of autism stereotypes. She loves hugs and kisses. She loves a good mess and taking things apart. She sleeps great. She eats well. She loves going to new places. All these wonderful things are making the professionals scratch their heads. It may be scary sometimes but overall it feels amazing to be the mother of someone so unique. She doesn't fit any labels. Isn't that amazing? My child is a true individual. She is such an individual that it appears she sees the world in a different way. She isn't blind to the world around her; she just sees it differently. When I think of it that way the road ahead doesn't seem as overwhelming. I don't feel like I have to make every decision based on a diagnosis. I just need to know my child. I just need to see her for who she is. I can do that.

Sofie's play therapist helped me with that realization. She came on Thursday to observe Sofie. She was attempting to get Sofie to stack blocks. Sofie knocked them over each time. And she made a point of scattering them all over the room. I was only seeing that Sofie was falling short of what the therapist wanted her to do. I sighed and said "She never wants to put anything together. She only likes taking things apart." The therapist said that Sofie thinks it makes sense for things to be apart. She isn't 'stuck' on the idea of chaos...she just prefers it. That gave me pause, I never thought of it that way. And then the therapist took Sofie's block box. It is this little box with a top that has shapes cut out. I have often tried to get Sofie interested in putting the accompanying blocks in those little cut-out holes. The therapist tried a couple of times to get Sofie to put the blocks in the box. Each time Sofie grabbed the box and ripped the top off and threw it behind her. I interjected "See? She loves taking things apart. It makes it hard to do games like that." And with that the therapist took the discarded top and placed it on the floor in front of Sofie. The therapist began taking the little plastic shapes and fitting them into the holes. She handed Sofie a little plastic star and she began trying to fit it into the square hole. I couldn't believe what I was seeing. Was it really that simple? Was I stuck in the box (so to speak)? Sofie sees the world differently. Why was I fighting that? She is exceptional. Why am I killing myself everyday for her to be an average kid? I just need to see her. If I see her maybe I can help her see me and maybe one day call me 'Mommy.' I think that day will come.