Moving Forward

Days blend into weeks, and now a month. Getting caught up in the daily routines and successes-and a new work plan which will allow me to spend more time at home during the day with Amelie. Suddenly, it dawns on me that I have not spoken to Whitney from UCSB's Koegel Center for weeks since our Autism Evaluation. Though, at this point in my research and Ami's development, I have ruled out Autism all together in my mind, I still want to follow through. I call her and we schedule a phone conference for the next day, wherein I will hear the results of their research on my daughter.
It's the most bizarre feeling- one that, as parents, we surely face over and over again- watching helplessly as your child is observed and put under the microscope. So, I play out all of the scenarios in my head before I go to sleep that night- imagining the "worst" (Amelie is diagnosed with Aspbergers, I will call Tim and we will talk quietly, cry and make a plan. I will listen supportively to him despite my emotions. I will not be sad, but find strength in this)... to the "best" case scenario (Amelie has developed so fantastically during the last 2 months that she is deemed on-track and we can move forward into the bright future as a "normal" family. 'This was just a little developmental delay...a bump in the road!' Hell, I would even delete this blog. Case closed).

Well, like most "worst case, best case" scenarios- it did not turn out as expected. She has been identified as exhibiting enough symptoms of Autism, not Aspbergers, to require further evaluation and treatment. Since Autism is such a big umbrella these days, it seems like anything can fit under there. Looking at the 4 pages of notes I took while on the telephone with Whitney- it's literally there in black and white, though. Ami's odd and sometimes anti-social behavior... "delay and lack in expressive language" which sometimes leads to her barking like a dog to strangers or alone in the middle of the playground; "inflexible adherence to specific non-flexible routines" which almost always lead to a power-struggle and meltdown with both parents.

After I hung up the phone, I did call Tim and he came to pick me up immediately. We sat in the van and hashed out the notes from Whitney, our thoughts and fears around it and our plan. I'm not sure how it happened, but I had literally prepped myself for this the night before. I imagined the best way that Tim and I could possibly have taken this news (together, with no arguing or denials) and we made our own best case scenario happen together. He hugged me- so strong and assured that I was reminded why I chose him to be my child's father in the first place. We talked about the plan going forward, then we went and picked up Amelie in the middle of her school day just to hang out. It was nice to have a few bonding hours with our family together. I hugged her and her little hot head on my chest and cold fingers around my neck sealed the deal. We are going to be o.k.

As we were leaving, I told Donna about the call from Whitney. She said, "It's just a label. Now you know how to move forward".

I am numb, yet there's a strange feeling of relief. I see these things in her and I worry. People frequently try to assuage my apparent concern with their denial or explaining away of her odd behaviors. Unfortunately, this doesn't help the situation. It just opens up the anxiety doors for me and at the same time builds a wall. At least now I feel that my parental intuition was correct. We have our plan and can get on a sure track of "recovery", instead of this nebulous searching for some kind of answers on what's happening with our little girl. At times, my worries have manifested into the most frightening diagnoses (brain tumors; un-named, yet scary, degenerative development syndrome). Now I have a shred of a plan- upon which we can build a foundation and get her the kind of help that will really make a difference.

Waiting and Hoping

I should have known the minute I began reading the PSI Short Form Test, one of the questionnaires I was asked to complete prior to our appointment at UCSB's Koegel Autism Center, that today was going to be another gut wrench. "Question 1: I often have the feeling that I cannot handle things very well. Strongly Agree? Agree? Not Sure? Disagree? Strongly Disagree?"
It is a beautiful facility and similar to our experience with Tri County, the testing room was a pretty sterile office space room with toys scattered about the floor. The tests were performed over 2 hours and ranged from reviewing the aforementioned paperwork to discussing concerns that we had about Amie's behavior and language to videotaped "play" segments.

We arrived happy and up-beat and I explained that while we feel pretty confident at this point that she is not on the spectrum, there's always that lingering doubt given some of the things we have seen. The sooner we can address them- no matter what they are attributed to, the better. Our hope is to gain a better understanding of what this is and obtain as much help and guidance from professionals as possible.

At first, Amelie did great at imaginative play. She was sharing and showing us the toys and chattering her little role playing games.
Then came a 10 minute "test" where I played with her while they noted and video taped our interaction.

After more time and questioning, Amie was starting to get tired, and her attention span was waning. The doctor then requested her 10 minute play time with Amie wherein she only half-heartedly engaged in play, and became bossy, then moody and withdrawn.
When the doctor would entice her from the chair she had clumsily climbed under, she would come out quickly, bark, grab the toy the doctor was wielding and retreat back to her isolated corner and play. "Question 20: My child is not able to do as much as I expected. Strongly Agree? Agree? Not Sure? Disagree? Strongly Disagree?"

In the end, the doctor stated that she is going to observe Amelie at her preschool and get back to us within the next few weeks. She did an informal evaluation at the end summarizing what she observed and categorizing her behaviors as either encouraging, normal or troublesome. She mentioned that our comments on the paperwork were probably correct- that if she is considered to be on the spectrum, it would be very high functioning. However, she could also have "something called Aspergers". As if to say that would be a good thing - a "lesser than" thing. That's when my stomach turned.

Nothing ever seems to prepare me for these tests and no matter how well she does, I always leave feeling this great emptiness. Drained. "Question 07: There are quite a few things that bother me about my life. Strongly Agree? Agree? Not Sure? Disagree? Strongly Disagree?"

There's no way to describe it, but I think my friend Lucinda said it best. It feels like you are desperate to have something tangible to grab onto, but Aspergers is something you'd rather not grab onto. Of course, I know in my heart she will be fine no matter what. I guess the only way to describe it is like the feeling of grief, which they tell you that the only way to get through it is to...well... get through it. That's what I'm doing. Waiting as patiently as possible for the final answer , but for now the answer is "Not Sure".

"The Diet" (Part One)

In the beginning days of facing the fact that Amelie might have Autism, there were some tortured and sleepless nights. What did I do wrong? Was it the red wine I drank at my baby shower? What about the time I wasn't paying attention and she cut her forehead so deep she had to get stitches? And what about those vaccinations...??
Jenny McCarthy's book "Louder than Words" had me up reading half the night- bundled up on my couch with blankets and a box of kleenex. I laughed until I cried- and I cried a lot. I knew that if Jenny could be as brave as she clearly was, then I could too. She claims to have "pulled (her son) out of autism" by following the Gluten Free / Caesin free diet.

Deep down, I was feeling a very real lack of control with this situation. A diet is something I could tackle with wild abandon and possibly get results from quickly. I did my research (online and by talking to people I knew who also follow it). I started attracting these people like fly paper! At the grocery store, at the cross walk... All of the sudden, it seemed like everyone in the world knew about the benefits of living Gluten and Dairy Free.

I knew this was not going to be easy. Let's be honest- it's hard enough to quit cheese and bread as an adult. Turning the train around with a string-cheese-obsessed toddler is a whole different story. What? Frozen chicken nuggets and pasta are made with wheat? Mama was going to learn how to cook--really cook-- and fast.

I'll never forget the first time I came home from the grocery store, $200 receipt in hand, after having spent hours reading labels. Tim just rolled his eyes at me- which caused mine to tear up with anger. But I persevered. To make things easier, I separated all of the "safe for Amie" foods. Then I began to research websites and recipies and pre-made foods and condiments. The tastes were wide ranging- but we found some winners.

Eventually, after 3 months of learning my lessons the hard way, things have gotten easier, and less expensive. I finally even have Timmy on board too! The key has been preparation- which is good for us on every level...

The Charger and the Thinker

I am a charger. If a problem arises, I'm one of the first people to identify it and (putting ego aside) work to correct it.

Tim is a thinker. He is more comfortable calmly pondering the information and possible solutions..." sit on it and let life take it's course" ... "watch and wait".

When our daughter- the most important thing in both of our lives - became "afflicted" with this unknown diagnosis, we each did what came naturally...

I went running from the building, straight to a computer. I cried through the most touching videos - parents describing the journey's they have taken, watching their children degenerate. I began to get anxious. I spoke to my mom, who not only is an amazing mom, but has also been trained to care for autistic children. I spoke to my sister, Melissa, a special-ed grade school teacher. She confirmed that Amelie did indeed show signs of Aspergers Syndrome- particularly in her frequent shows of resistance. I read articles, books and interviews. I stayed up all night long and read Jenny McCarthy's "Louder Than Words". (A great and empowering book which gave me strength through some dark days. I heart you Jenny)- then I put the whole family on the GF/CF diet. I paced. I fretted. I talked and reached out.

Tim, on the other hand, retreated. He lay horizontal, catanoic, staring at the TV screen. His voice was quieter, his hugs were longer, his eyes were tired. He became frustrated at my buzzing energy and boundless "solutions". I became irritated with his seeming lack of caring.

One morning I called Melissa with this problem. She laughed and said that it was normal for the father to experience more "denial" or at least to deal with it differently. Her casual demeanor regarding what I thought was going to be a major issue somehow gave me comfort. "It's very common." she said. "Try not push him. He needs his space right now to handle it in his own way."
"Besides," she added, "You don't even know what this is yet..."

The difference in parenting and living styles is something I'm sure all parents and partners struggle with. Dealing with a child with 'special needs' just puts those struggles under a microscope. So many times I've screamed to myself, "It would be SO much easier if I could just do this on my own...make my own choices and solutions with nobody fighting me!!"

But, time has shown me that is not the case. He is the only one who can comfort me when tantruming just won't end. He's the only one that secretly chuckles with me when she says something that sounds absurd because she can't find the words yet. He's the only one that loves her as much as I do. Maybe we don't always agree on the methods, but I could never, ever do this without him.

The Beginning

Hello,
My name is Denice. I am mother to Amelie, a three year old girl living in Southern California.
One of the most scary days of my life was when my husband and I were seated at the small table in her preschool class and told that she was delayed in speech- possibly due to neurological problems.
"They are calling it Autism these days." her teacher said, as my eyes glazed over, gut churning.
Like many parents, we had heard some general statistics- that Autism diagnoses are on the rise, that there are many advocates and programs out there, that there is no real "cure"... And, like many parents, we went through the same stages of outrage, numbness, denial, anger and depression. Over time, we each tackled this knowledge in different ways- attempting to work together but finding the differences in our individual problem solving styles as challenging as the news itself.

The first few months have been difficult, to say the least. We've done exhaustive testing, reading and diet experimentation -at least as much as one can do while raising a toddler and working full time.

We certainly don't know everything yet- we don't have a diagnosis, a permanent plan or any medically definitive results from the things we have tried. What we do know is that we are on a journey- like every parent. There is still a lot of inner debate, turmoil and exploration. We want only to do right by our little girl and we love her enough never to stop trying- but also enough to keep her from feeling continually under the microscope or "different". We've observed that sometimes kids don't know how to share things with us verbally. We learn from them in the quiet moments- through their tiny whispers.

This is a place we've established to share the things Amelie is teaching us. We hope it can help you too.

Thanks,

Denice