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her 10 minute play time with Amie wherein she only half-heartedly engaged in play, and became bossy, then moody and withdrawn.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".

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!

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!

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.

"The Diet" (Part Two)

The real test of "The Diet" was going home to Oregon for the holidays. We decided it would be impossible to limit her exposure to the "bad foods" so we just let up completely. By the end of the three day period, my sister and I witnessed Amie running around in a tight circle flapping her arms around like a severly autistic child. It was like she was on drugs. As our eyes locked across the room she said, "It's amazing...the difference between the kid that arrived here 3 days ago, and this one..."

It wasn't scientific, but I felt it was a sign.

We went back on the diet immediately and I've been documenting that and other successes and failures ever since. I have started a few free-standing pages here with kid-friendly GF/CF foods and recipies and tricks for making foods, snacks and going out to eat Gluten and Dairy free. I'm not making any claims here...this is just the Cliff notes from a kitchen and parenting novice who spent a lot of time and waaay too much money learning...

I figure, if you can get a toddler to like it, then it's probably pretty tasty...and, as we are teaching Amie, it's nice to share.


P.S. All of the stuff posted here is only if it's worth trying.
The foods we have that haven't worked are not posted.
The things that she particularly loves or responds to, I've marked "Amie Approved".

"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.