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.
 

One week later: Mommy has time to think

I cannot believe it has only been one week since we got THE diagnosis. What is funny is that it doesn't feel like THE diagnosis anymore. It just feels like the answer I have been waiting months to get. Along with many ups and downs this week (yesterday's Mommy and Me Class was a bittersweet down), I have been thinking about MY behavior as a mom...a very worried mom. I honestly can't even remember when the crippling worry started; it's hard to assign a day to when you started to lose yourself when you in fact LOST yourself for a time. For all of Bubu's life I have wondered if I was enough for her and that insecurity was compounded by my little girl's apparent boredom with me. I would enough say (sometimes cry) that she didn't really like me and that she plays by herself because I'm not enough for her. And THOSE terrible thoughts were compounded further by Bubu missing milestone after developmental milestone. "I did this. I messed up. Someone else would have taught their baby where their nose is. How could I be so bad at this?"

I have an amazing family, friends and husband that tried to reassure me but the bad thoughts were eating away at me and I was lost. I would sometimes call my pediatrician and ask if Bubu's unique personality was "normal." And time and time again I would hear "it's behavioral." Well, this made me feel even smaller. In my delicate condition I was hearing "she is just reacting to you really not doing your job." I was told that they were a little concerned about her speech but that we should just give her time. I was told that I should try making her ask for things and stop anticipating her every need. "Try to wait for her to ask for juice or lunch."  And so I tried and I failed (or at least that is how I saw it). If I didn't put her in her highchair, Bubu would just completely skip lunch. She would just roam the apartment and EVENTUALLY start making her throat noises that may or may not be her asking for food. I didn't know if they were related because she didn't say them TO me; she was just talking to herself walking around the apartment. Bubu got more out of it as the day wore on. That was our routine, by 4:00 she wanted to be by herself (and I wonder if she thinks she was). She would just sit in her playroom and read, ignoring my calls. I hated that time of day and it would make me irritable when my husband would come home from work. I was feeling rejected before he even came in the door. This cycle I was in was out of control. And I was ashamed to share it with anyone, so now in a counter-phobic move I am putting it on the internet.

This summer the cycle completely wore me down. We were going on a nice family vacation and I was sick with anxiety about it. I was dreading it and didn't know why. I know I was concerned about the heat and Bubu but this thought shouldn't have consumed me like it did. And today it dawned on me why I completely broke down on that vacation (I was a mess). I was consumed by this one idea "she won't tell me if she is hungry, thirsty, or overheated. how can I keep her safe on this trip?" That thought was the tipping point. I was already feeling like a failure and this trip I thought made me a dangerous one. After that vacation I went on Zoloft. I only add that on the off chance a desperate mom like me comes upon this blog entry. I am pretty sure only my friends and family read this, but just in case-it's okay to need a little extra help.

Around the time Bubu turned 15 months was when I really started to panic. While my Bubu was getting cuddlier she was getting a whole lot more quiet too. The throat talking was the main way she spoke and the very few words she had were disappearing. With each passing day, she was retreating a little bit more. I'm one of the lucky ones. My daughter's autism doesn't express itself with hours of screaming or self-harm, she disappears. It was like living with a beautiful ghost and it was breaking my heart a little more each day. We were losing her in pieces. She used to say "bayyyy-beeee" perfectly; it was one of her few words she said. And then she would only say it sometimes when you asked "Who is that [in the mirror]?" And then the word was losing ennunciation. "BAYYEE." "bayyye." "bay." And the last incarnation of "baby" that scared me to my core, she didn't say anything she would just pat her chest. WHERE DID THE WORD GO??  WHY IS THIS HAPPENING SO QUICKLY??? I was terrified. My husband was terrified. And we were losing our words too. We didn't want to say how scared we were. We had a respit from the worry when our pediatrician said "I know what autism looks like and she doesn't have it." He should have said he knew what SEVERE autism looked like and admitted that he didn't know my child's face like I did. I should have been relieved by his assessment. I should have been happy when the speech therapist said we could wait a few months and give Bubu more time. WHY WASN'T I RELIEVED? Why was my home still so tense?

And so a week ago, we got the scary diagnosis-autism. But why do I feel so positive only a week later? Why do I feel like my marriage is stronger than it has been in a VERY long time? Why has there been so much laughter and happy tears this week, of all weeks? This was supposed to be when the world crumbled. The other diagnosises were the "good" ones and yet I haven't felt like this in forever. I'm HERE and ready to help my daughter and be a loving wife. I don't feel lost or numb. I feel happy, scared, excited, and sometimes sad (yesterday really sucked).

Ozzy and I adopted the new family mantra "live. love. repeat." We are just going to try very hard to live those words. I spent so much time thinking I was the problem. Bubu wasn't interested in this world because I failed. She wasn't maturing like other kids because of something I did. Now that I know something so much bigger was happening I can forgive myself for something I apparently never did. Maybe I didn't fail. Maybe this is just a crazy genetic lottery. And now instead of being broken by the times Bubu "goes away" I am only a little sad. I know she is going to her little magical world she created for herself and I am so proud of her that she was strong enough to create such a place for herself to regroup and soothe herself when this world's stimuli become too much. And thanks to lots of love and the new GFCF diet she seems to like this world more and more each day because she can see it clearer. I'm just thankful for a lot of stuff tonight. My little girl pretended to give me her bottle today at lunch and she thought it was the funniest joke ever. Today was a wonderful day, maybe I am enough for her.

Time for sleep.

The longest week ever

Tomorrow it will be a week since we found out how unique our little girl is. Ozzy said "I have aged ten years but that could be a good thing." We both feel like we have matured a lot in a short period of time. We always said our Bubu made us better people and this week really revealed that. I never thought that I would be able to handle something like this. But now that I am living "this" it doesn't seem very dark at all. Our Bubu is a healthy little girl that is teaching us a lot about focussing on life's little victories. Things are getting very real now. Today we began receiving bios for possible therapists for our Bubu. And our pediatrician referred us to a pediatric neurologist; we will meet with them after Thanksgiving. Again, things are getting very real. We have so much hope for our little girl. We have felt very positive but I am anxious about starting therapy. We don't want anyone looking at our Bubu like she is sick, because she is not. I hope that we find a medical support team that understands that. Our case worker is very sweet and empathetic so there must be more people out there like her.

And while the road ahead is an absolute mystery, I know that our Bubu is strong enough to walk it. She is an amazing little person with a very sweet spirit. I didn't think it was possible but I love her more deeply now than I did a week ago. And she is doing so well with the new diet. I am happy to say that she had a better appetite today and seemed a lot happier. We had some great stretches of meaningful eye contact. And in a moment that Ozzy and I are completely dumbfounded by and quite frankly a bit confused by, while holding Bubu she took my glasses and I took them back and she looked me in the eye and said the tiniest "no." Ozzy wasn't looking and thought I was doing a baby voice. I don't know how to explain it, it didn't sound like her. Bubu has always held on to her sounds a bit. She doesn't project very much. We have always said that she is a "whiner not a crier." That is what made that tiny "no" stop us in our tracks-she projected it OUT. It was said softly but she wasn't holding on to it in the back of her throat. I hope and pray that means something, I really do.

A-Day...the day it all changed...and didn't.

Thursday we found out that our little Bubulubu has Autism. Looking at the word on the computer screen is still really weird. "My daughter has autism." Can that be true? I know it is. My husband, Ozzy, and I have held our breath for months and months wondering why our little girl reacted a bit diffrently to life than other babies. I was so scared, still am I guess. Our little Bubu is 18 months old. People tell me it is a real blessing we caught it so early. I hope they are right. I am going to work really REALLY hard to make their predictions true.
This has been the craziest most surreal five days of my life. Thursday Ozzy and I collapsed on the floor sobbing after the specialists left our home. AUTISM?!? What did I do? What did I do? What did I eat when I was pregnant? Where did I go when I was pregnant? How could I let this happen to my baby?  I spent the next two days trying to remember how I accidentally ingested or exposed myself to my Bubu's kryptonite. I'm not blaming myself every minute now. I have my moments where my mind goes there but I am working really hard to not stay "there." I'm working really, really hard.
After the first grueling 48 hours, we were lucky enough to have a weekend where Ozzy and I didn't have to work. It was the best weekend we have had, since I don't know when. I think it was the first time we REALLY saw our Bubu for who she is. She isn't this scary question mark. She is an incredibly unique person, and just like the rest of us, I have absolutely no clue what her future will be. That is scary as hell but oddly beautiful too.