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." :)     

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.
 

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.