August 31, 2010

California Dreamin'

We have officially graduated from Chit-Chat Speech Camp! This is a wonderful community-funded program for kids put on by the Scottish Rite (the Masons). The irony of that fact will never be lost on me (a secret society teaching my daughter to speak). I love going there and seeing all of the cool photos, paintings and Masonic memorabilia.  It's such a cool old building that looks like it hasn't been touched by a decorator in 40 years.

The Masonic Temple, and our schedules freeing up, have spawned some California summertime nostalgia.  My family used to come down from rainy Oregon to Southern California every year.  We would pack the Caprice Classic up with all 7 kids and trek down the 1-5 to Anaheim, San Diego, San Francisco... you name it!  You could say my dad had a serious obsession with Southern California.  I can still smell the melting crayons in the back window and hear Peter Ceterra on the radio.  I was my father's only California-born child, and he never let me forget that. He called me "California Girl" all my life.

When it dawned on me that I truly do have a California Girl... I decided we need to take advantage of it! Maybe even make a learning experience out of it.  What a better way to get a kid talking then to put her in funny new situations that she wants to speak about!

For our first adventure, we went on a family trip to San Diego.  Of course, we had to go to the zoo, because Amelie loooooves her furry creatures.  Then we were driving about town and saw these awesome wall murals.  This one is especially cool... check out how big he is compared to Amie!

We decided we like lounging by Priceline discounted 5-star hotel pools! We also decided we need to do more adventures here in Cali, then recount our adventures in creative ways.  We'll keep you posted on what we come up with!

July 23, 2010

Easy Livin'

Summer (and my new part-time schedule!) has arrived and we have been determined to have lots and lots more fun! From dancing the night away at beautiful weddings to chasing each other's long shadows on the boardwalk, we are happy and chatty and silly.

The only work we will allow is the work that doesn't feel like work. Amie has speech camp with Ms. Julie on Wednesdays and we share waffle mornings with Ms. Donna at her school, Child's Play. I have been observing there and really loving being with those kids (and learning some nuggets of wisdom from Ms. Donna!)

Every day Amie has a new, fantastic story to tell about our adventures- which are half true-to-life and half wildly creative...usually involving saving someone in trouble or "feeling" (bad or good) All of the sudden a month has gone by! Now, we have less days of summer left and our little girl is growing up before our eyes- more talking and interacting with all kinds of people and less of the other, worrisome stuff.

Who would have thought that slowing down was all we had to do?

June 12, 2010

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.

May 7, 2010

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".

April 30, 2010

Physical Attraction, Chemical Reaction

One of the conditions that my husband, Tim, gave me for putting Amelie back on the gluten and dairy free (GF/CF) diet
was that she was to be allergy tested. If a bona fide MD deemed her "allergic" to dairy and wheat, then he would be more receptive to a permanent diet change.
I had read and been counseled on a few things that made me slow to act to this request- mostly that gluten sensitivities do not show up on the standardized allergy test panels. We had observed so many positive results from the gluten elimination diet, that I didn't want some doctor's tests to come and debunk everything we've worked so hard to achieve.
Begrudgingly, I made the appointment with Dr. Tubiolo a pediatric allergist in Santa Barbara. In fact, my friend whose daughter has been diagnosed with Celiac Disease (an autoimmune disorder of the small intestine associated with sensitivity to gluten) had recommended Dr. Tubiolo, but also had said that she had finally got her diagnosis from testing done with a Homeopath. Tim is not so keen on the whole homeopathic thing.

We all went to the appointment together. They counseled us about what to expect which included a lot of questions, discussion and a 20 minute test where they stuck 3 panels of 8 common allergens into her skin to observe her histamine response.
Overall, she has allergic rhinitis and has probably inherited her father's tendency toward asthma. In the end, the only thing she showed an allergic reaction to was (drum roll.....) cats and dogs. Anyone who knows Amie knows that she loves (is OBSESSED with) all cats and dogs. I found this very ironic. Here we have been chasing this elusive "dairy allergy"- one that has her coughing into the night and bleary in the daylight- but all the time it was directly under her nose. Literally.
The one frustrating thing for me is that the doctor could not pinpoint an inability to process lactose and gluten with the tests he had. He did make that distinction, but the thing that stands out the most for Tim is his explanation of the "people out there" who would have you believe in these "miracle elimination diets". In a nutshell, he compared the faith in these diets to the faith one might have in religion. The diets being, in his opinion, not backed up by good science. He said that we had done our "due diligence" and now we just needed to ease up on the diet and give something else a try.

He asked us to try some mild children's allergy medicine for 2 weeks just to see if that helps. He explained how the annoying effects of a sensitive, allergy ridden child could be the very likely causing the behavioral issues we have been seeing.
So...another stone has been turned over. The answers and the path are never as clear as you'd like them to be- it's just hard to believe that it could be that simple. But, we're trying it for 2 weeks... doctors orders!

April 13, 2010

Denial and "Advocate Fatigue"

Throughout late fall and early winter of 2010 we had made some great successes. We completed Amelie's autism testing; changed her diet; hired a speech specialist; diligently took notes at our weekly meetings with Donna; did our homework and journaled all of our successes in our blue notebook...we were on track and improving by leaps and bounds!

Then, suddenly things came to a screeching hault. All of the sudden I started slacking off in different areas. First, because things were going so well, we decided that her wheat "allergy" was probably bunk and that we were going to embrace, wholeheartedly, the bread basket when it arrived at our dinner table! Gone were the enormous weekly shopping trips and meal planning. We began eating out more and I even would send parts of leftovers to school with Amelie for lunches. (always done with a pang of guilt...but with the internal excuse of having spent time with Amelie being more important than slaving away in the kitchen over the 'perfect' meal.)

I lost the blue notebook. Actually, I didn't lose it...I put it in a bag with all of our GFCF cookbooks, testing results folders and other info I've collected for this blog. I put it under a table in the back corner of my studio- ostensibly to have it all localized to construct this blog. I couldn't look at it anymore. My "new" Amelie had grown out of all of those behaviors and was well on her way to being a "normal" kid. Even having this blog felt like a betrayal to all of the other mothers out there who were dealing with a "real" spectrum child, so I stopped writing for it and thinking about it.

Gradually the reports of the "bad" behaviors started filtering back from school. Things like spinning, barking, blank stares, inability to call up answers or information, aggressive playing with other kids, meltdowns had become a thing of the past and were, again, rearing their ugly heads. As Donna put it, "It's like there are two Amelie's coming to school, and the old Amelie is back."

Then two things happened that hit me over the head- making me realize that I'm further from "normal" than I wanted to be.
1) We were at Easter Brunch and a woman said, "My son has Aspergers too" (unprovocated)
2) One morning as I dropped her off for school, I witnessed Amelie try to call up a story from the night before. It was painful to watch her try to pull the words out of her head and see the other kids...clearly more verbal...get frustrated waiting for her to tell the tale.

I cried all the way into work that morning. All of the sudden I realized that I just need to go back to square one. I had fallen off the wagon (one that was working!) and I needed to center myself and proceed. I had been experiencing what I call "Advocate Fatigue". I decided this time I would do a few things differently, more organized and planned to set us up for a bit more success.

1. I made a steadfast effort to make sure that Tim was on board. It took a couple of discussions (and, let's be honest, a few frustrating eye-rolls) but we are now 'on the same page' with the gluten thing.
2. I really planned my meals and leftovers for lunches to ensure I would not be having any more $200 grocery bills. I saved the plans to be used for later weeks so I wouldn't have to re do my work.
3. I took everything out of the house that could be a distraction for her- anything that I would have to turn down. That way, none of us would "cheat" and she wouldn't feel left out.
4. I started following recipies. Sounds easy, right? Yeah, instead of thinking in some 'Bridget Jones' way that every concoction I improvise will suddenly turn out to be a masterpiece...I now follow recipies so I'm not torturing my family with a limited diet of green mush (or brown kale flavored smoothies...)
5. On a non-diet note, I'm taking copious notes of my meetings with Donna that I have decided to post here. Hopefully that will help with my knowledge absorbtion as well!

March 26, 2010

Baby Steps

It was a fantastic day in February, not long after Amie's 3rd birthday, when we got the 'official' news that she was not autistic. The official/non-official "diagnosis" is "Rule Out PDD". In two years, Santa Barbara's Tri County Regional Center has recommended that we have her re-tested. Until then, her problems are deemed not severe enough to warrant state assistance.

So, ok ok I know I'm supposed to be happy about this...and I am. But I find myself obsessively wanting a "real" diagnosis. Something tangible that we can attack with full force. It's like we've come to the end of this marathon of testing and worrying and planning only to be told to wait for 2 years to run it again and then maybe they'll tell us our time.

This points to the larger issue at hand which is less about Amie and more about me. The thing is, no matter what she "has"- she is Amie and we will do the best we can for her because we love her. And we will teach her, using whatever methods we can employ, how to take care of her little self in this big big world.

We have hired Julie Diangeles, a fabulous speech teacher, and we continue to learn every day from Donna at Child's Play. We are still on the diet and it's getting easier. At this point it feels like we are all working as a team. Amelie is carrying her own weight, and she not only acknowledges it, but is very very proud of it.

Yesterday, she was fumbling with the buckles on her shoe. I reached down as I've done so many times in the past to help and, instead of the usual screaming and outrage, she just shooed my hand away and said, "This time, it's my turn."

Baby steps...literally.