Thursday, January 19, 2012

Sydney's Story

As many of you know, we have been through a lot with our darling Sydney over the last 3 years. Her behaviors and learning delays were always chalked up to be caused by her seizure disorder that she has had since 9 months. I have always felt that there was something else wrong, but we could never quite pinpoint it. Her strange behaviors were always concerning to me, especially her wake up calls at 1, 2, or 3 am.  Her sleep habits alone cause me to nearly go insane, but it was the rejection and responses from the doctors that made it worse.  They blamed me for not being "strict enough" with her sleep schedule. For not being "hard enough" on my child.  "Just keep at it" they said, "she will come around", "just keep a routine".  I felt worthless. I felt inadequate.  I felt like the worst mother in the world.  Why could I not get my child to go back to sleep after waking at 2 am? It didn't make sense to me or the doctors, so yes, I blamed myself...for the last 3 years!  It wasn't until about 4 months ago that I really started to believe that I wasn't the one to blame. There was a problem, and I wasn't going to pretend that it wasn't there anymore. So rather than continue to take Sydney to doctors, I became a researcher.    I would spend those early mornings researching on the internet possible explanations as to why she did things the way that she did.  I came up with a few hypothesis, a couple that didn't pan out (sleep apnea, migraines, etc.).  But, over the few months my husband and I really started seeing things in Sydney that could put her on "the spectrum". We thought maybe PDD-NOS. I called her therapist Cami, about 6 weeks ago and told her my concerns and how I truly did not believe that this was all "just a delay".  Once again, she reassured me that Sydney was not autistic, nor did she have these "tendencies", she was just "delayed a bit".

Four weeks later after more research, I was convinced that Sydney had Sensory Integration or Processing Disorder which was to blame for keeping her awake at night.  She has always been very sensitive to light, she screams when she has her socks put on wrong,  she sleeps naked with her "soft blanket" on her, she is very sensitive to touch and hated being cuddled as a baby, etc.  There were/are many signs of this, so I called a local OT who specialized in this disorder to set up an evaluation.  While talking to her on the phone she asked, "does she sleep on the floor?"  "YES!"  I said(feeling validated), "will she sleep in her bed even if you put her there?"  "No, she moves to the floor".  She continued to ask questions that began to make sense, questions that I now knew fit Sydney to a T for SPD. Sydney has a sensory issue, which is why she likes to lay on the cold couch or kitchen floor when she wakes in the middle of the night, which is why she cries when the lights turn on, etc. The therapist quickly told me that Sydney obviously had sensory issues and that I should put her in OT.  That day, I called Cami again at school to talk more about this.  During this phone call Cami told me, "we can't help Sydney for the sensory things because it doesn't affect her learning, but I have been wanting to call you to talk about doing another evaluation, this time for autism".  My jaw dropped.  "after you pointed it out to me Mrs Mount, I have begun seeing the autistic tendencies that you were speaking about, and I really want to get her evaluated again soon, how is next week?"

After hanging up the phone I immediately researched autism.  This was the first time that I allowed myself to really research anything about the subject.  I read about the gluten free/casein free diet and how it has helped many children with Autism.  Four days later Sydney had another early morning, this time at 1 am.  So, here I was researching. Again.  That morning we started Sydney on the Casein free diet.  I just wanted to try it.  I have read that allergies and food sensitivities are different so I thought, maybe she does just have a sensitivity to milk, why not eliminate it and see? While dropping Sydney off that morning (Wednesday) I asked her teacher if Sydney still wasn't talking in class.  She told me, "she will tell me when she has to use the bathroom and that's about it".  After 4 months Sydney still was not speaking in class.


Three days later after starting the casein free diet, I picked Sydney up from school (Friday) and her teacher tells me (without knowing about the diet), "she has not stopped talking all day".  WOW!  We went home and Sydney sang three songs that I had NEVER heard before.  She identified 2 letters (H and O), which again she has NEVER done, and she had her first conversation ever with me. I asked her what she did at school that day (which usually is responded with a blank stare and a grunt or two), and she replied, "I played with Daniel."  What else? "I read books".  What else? "I played in the gym".  The tears began to stream as I was listening to my baby girl recall events of the day, something she had never done before.  Something that was only just beginning.

We immediately took Syd off Gluten and the results are undeniable.  What Cameron and I have witnessed in the last 8 days are nothing short of a miracle.  I have been brought to tears at least once a day, (and Cameron too!)  What seems to be a huge development to us, probably wouldn't be noticeable to someone who has not lived with Syd, but let me give you a few examples of these remarkable changes:

1.  These conversations have continued.  Today after being picked up from school and asked about her day said, "I played outside","I played on the slide", and "I read Humpty Dumpty".  She recalled a specific book!  DETAILS!
2.  A couple days ago we were downstairs and I gave Sydney a task; to get her underwear out of the laundry pile.  She stopped looking and went over to play guitar with Cameron and after about 3 minutes went back to the task saying, "I need to find my underpants".  There was no redirection...she just did it!   This has happened a couple of times.
3. Her sentences are longer, and its as if she is actually thinking before speaking now.  She walked into Grandmas today and said, "I wonder where Grandma is...maybe shes upstairs".  She knows wonder?  And maybe?  Who knew!?
4.  At the dinner table the other night she began using her hands while we were singing songs.  She was mimicking our hand movements (something she rarely ever does).  She did 5 songs in a row with more excitement and accuracy than I have ever seen.  (usually she will sit and just stare during these songs).  This one even made Cameron a bit teary.

There are so many things that we are seeing on a daily basis. It is amazing.  Yes we probably are seeing some things that have been there all along, just because we are looking, but I guarantee that this diet is doing something.  Her teacher said again yesterday, "I have never seen her talk like this".  It is wonderful.  It makes sense that diet effects our bodies, I just hate that it took me so long to see these "intolerance's.

Sydney was evaluated on Tuesday with the autistic specialist and was unofficially diagnosed with some form of autism.  The social integration and epilepsy are believed to all be part of the autism. So now what?  My heart sank, the tears ran, and the therapist just apologized again and again for not seeing it sooner. "We are very upfront to parents when we see signs, I just always thought these things were caused by the seizures" she said.  Who can blame her?  Everyone has felt the same.  Everyone but me.  Now I have a bit of validation, but who cares?  There wasn't a sigh or relief, just pain and worry.  I am just so upset worried for my daughter and her future.  I just can't believe it.  Truly, I still am in denial.  It is one thing to THINK something,  but it is an entirely different thing when you KNOW and have proof of something. The news hit me pretty hard.  I still wonder when I will come to grips with it.

For now I am just doing everything I can to control the situation and keep my mind from getting too depressed.  I don't want to dwell over this because really,  Sydney is still the same old sweet Sydney.  Nothing has changed.    But there is something so daunting about the word Autism. Its so harsh. Its so real. There is too much uncertainty that comes along with it. I immediately went out and bought a mini trampoline (I read it helps), I decided to enlist the help of my mother in law to make a special weighted blanket, and I have been gung ho with this crazy diet. I don't know what is harder, making the food, or driving around the city looking for the nasty stuff. It took me about 3 hours the first day just reading labels, which of course, again, had me in tears. Luckily I met a sweet lady who helped me along the way (she told me that she instantly knew I was crying over ingredients as she had been in that same position 10 years prior). It was comforting and a bit humorous, I felt pretty ridiculous.  But really, YOU try doing a food search (but don't try walmart!) There are few foods out there that dont contain both milk and gluten. I had no idea!  This diet is so dang hard to follow, and so time consuming, but I am doing it and doing it right. Sydney is worth it even if it turns out to all me a hoax. I have to try it. I have to try something!  I am keeping busy and keeping my spirits up and when I find a good recipe (like the banana oat bars, it makes my day!)  I have faith, probably more now than ever before, and that is  strange for me. I know that it will work out, I am just worried about figuring out the kinks along the way.

I hope that we will continue to see more improvements, and that I will see this as a blessing and not a curse.  It is good to finally have answers. Its sucks to have these particular answers, but now we can help Sydney in the best possible way and that has to account for something right?  Had the word autism never come out of Cami's mouth, I never would have even considered this crazy diet.  There is a positive right? Lets keep em comin!

(Oh and did I mention that during all of this (this week), Macey had bronchitis, and Cameron started teaching early morning seminary?  Life is awesome.


coco said...

I am sitting here with a lot of tears and mixed emotions reading about you and Sydney. I am so grateful the new diet is proving to help! I can not imagine being in your shoes, but please know how much love and concern I have for you Cameron and CC as you are going through the initial shock of all of this. It is amazing how the information you have gotten explains so many of her behaviors that have perplexed us for years. (The skin and cool surface sensitivities is so interesting to me.) I want to take all of this away from her so badly....I am so thankful she was born to a mom and dad that will stop at nothing until she is safe, comfortable and has what she needs. Hope you know how much I love you all!

coco said...

ps- I have a friend here in UT who has experimented with several dietary things for her 4 year old son with autism. He had about 50 words and then lost all of his speech except for 5 words. She told me that cutting out casein and dairy really helped-and he gained back a lot of his lost vocabulary. (Stuff like that is so amazing that people figured out might work.)

Kristine Pratt said...

Brit, I am so glad you are starting to see improvements. I wrote you a message on FB before reading this post about the therapy my brothers did and some sensory stuff. But I was tearing up reading it too. I still get sad thinking about my brothers and the fact that they have to deal with this for the rest of their mortal lives. It just doesn't seem fair at all. But I just know Sydney is going to be a high functioning person. She is not like the other children with autism. Also, my sisters husband can't eat gluten and avoids a lot of dairy, so if you want her email address, she has been doing tons of research on foods he can eat and what brands of foods you can trust...