It was a rainy Tuesday morning, just before bathtime, when a conspiracy to cut my hair with Papa's clippers came to fruition. There was nothing I could do, nothing I could say to stop the madness before the vibrating hair-killing machine was at its nastiness.
It seems my Mom and Dad had been curious what I might look like with my hair cut close to the scalp. Now they know, and hopefully, knowing was half the battle.
The result of said attack on my golden locks, well, I think the pictures will give you an idea of how the ordeal went for me.
So, therapy continues and I'm learning to cope with change, figuring out how to interact with all the people around me, and finally learning to really communicate. That, I gather, has been the hardest thing for my Mom and Dad. I don't speak, haven't ever even mumbled anything that remotely sounded like a word, and no one knows why except me and I can't tell anyone. It seems that's fairly common with kids like me.
But I've made an exciting breakthrough and wanted to share it with my world (for all those who haven't been able to be around much lately, I love you all too!).
I could tell you all about it, in a bunch of fancy words and frivolous chatter as I am want to do at times, but I think the video says it all.
So, what's new for the new year. From my last entry you probably guessed our life was about to change pretty drastically, and indeed it has. Shortly after my last post, I was diagnosed with Autism by professionals from the Oakland Children's Hospital and that diagnosis was confirmed a week later by the Kaiser Autism Spectrum Disorder Clinic in San Jose. I am autistic, exactly where on the spectrum they can't say because of my age (I just turned 2!!), but the diagnosis is official. So, what doesn that mean? Without all the medical and pyscho jargon, it means a lot of people have taken an interest in me.
On January 2nd, I started ABA (Applied Behavior Analysis) therapy which is 5 hours a day, five days a week for the next year. All of that takes place in my own home, which is pretty cool. I have four skills trainers that will be working with me throughout the week. I've met three of the four and I'm confident I've got a good team to work with. I also have an hour of Speech Therapy on Tuesday's, as well as an hour of Occupational Therapy followed by Feeding Therapy on Thursday's. It's been a little rough getting to know so many new people, especially since I'm not so fond of new faces. The hardest thing is how friendly all these new people are. They want to get close to me, talk to me, and play with my toys. It's a little annoying at times, but Mom and Dad are there and they seem to want this kind of interaction for me so I do the best I can.
Probably the most exciting new thing to happen is I've learned the ASL sign for more. Now, when I'm playing with my bubble gun, or wanting water, or even being pushed in by Indoor stroller, I can just tap my hands together and I get more of that activity. Still haven't got any words, but this simple sign seems to really make my Mom and Dad happy. Guess I'll have to learn MORE.
Christmas was pretty decent. I really got into the gift opening thing and got some amazing stuff from all those with a little love in their heart for me. Not only that, but my two older brothers, Ethan and Caleb, were here for a week. It was fun having them here, but sometimes hard to share my Dad with them. We also had a really cool New Year's Party, with my Uncle Jeremy and Aunt April, Miranda, Logan, Haylie and Hannah, Lauren, and Grandma who all slept over. There was lots of food (not that I ate any of it. My dad sure did though!), and lots of kids running around. I hope we do it again next year.
There's a lot of love in my home right now. I know my Mama stresses and worries about me, but I've seen the way my Dad loves her and it gives me hope that everything is gonna be alright.
Hope. There's not enough of it in the world but there's sure a lot of it where I call home. And that makes me feel pretty good.
For most of my life, now, I've been struggling with eating. Complicated by GERD (that's gastroesophageal reflux disease), food has not been my most favorite thing in the world. My diet still consists of liquid supplements and high-calorie pediatric formulas, a milkshake of sorts like the one I described in an earlier post.
Every afternoon, I munch a Cheeto after my bottle. I like Cheetos. They hardly ever make me gag. But that is the closest I've gotten to eating food.
As some of you know, my life has been somewhat complicated of late as various doctors attempt to determine if I have Autism. It seems pretty clear to my pediatrician as well as Mom and Dad, but we must have a professional diagnosis before I can start any kind of treatment. Autism is a scary thing. It seems there is no clear-cut reason for its onset, nor any surefire cure, just a lot of different theories that seem to help a lot of different kids suffering from this same disease that disables a lot of normal kids like me. But I have hope.
My Mom spends hours every day researching and reading and finding the best ways to battle the symptoms of autism spectrum disorder, and my Dad is always there with her supporting and reading as well. I know it has been hard on both of them. Life pretty much revolved around me before. Now, there is little time for anything else.
Autism in children is best treated if it is diagnosed early. The earlier the better. I'm almost two, and thanks to my parents being diligent and aware, I have a very good chance at overcoming this. My Mom is the miracle worker, always on the phone, getting me appointments, making sure I'm not forgotten by the medical professionals who seem to need sticky notes on the their foreheads to remember they have people they need to help who can't help themselves. Mom's the one that makes sure that sticky note is always front and center on their forehead.
So what are my symptoms:
1. (And this is the big one) I don't talk. Not one word, and although I used to do a little babbling, I stopped that some time ago. Most of my communication is done by leading. When there's something I want, I go to my Mom (or Dad but only if Mom's not available), grab her hand, and lead her to what I want. I don't point or communicate my desires, needs, likes or dislikes in any other way.
2. Tip-toe walking and hand-flapping are two things my parents noticed at a relatively young age; of course, then they thought these self-stimulatory acts were just me being cute. The truth was much harder to swallow as these two things are commonly seen in children with autism.
3. I'm a Grouper. While my parents have filled my home with all sorts of toys, I rarely play with them appropriately. I mostly find balls, Easter eggs, and cars and put them in large groups throughout the house or line them up along the windowledge.
4. The mundane fascinates me. The park near our home has a water fountain that leaks constantly. This is why I like to go to the park. I could care less about the other kids playing or even the toys, its the water that I want, and if Mom would let me, I would spend hours and hours there touching it, looking at it, watching it without any care for the things going on around me. Some of my other fixations include elevators, sprinklers, the flower pot outside the front door (also filled with water), well, those are probably the big ones.
Those are the things that have gotten me a lot of attention recently and I'm scheduled for several evaluations in the next couple of weeks to determine just how to get me back on track with other kids my age. It's been a rough few weeks for us all.
So, as I said before, there's not really any one thing that experts say is "the cause" of autism. What it looks like, is any number of things happening at the right (or wrong) time which seem to trigger autism in children mostly between the ages of 18 months and 3 years. 1 in 150 children are diagnosed with autism. What triggered my symptoms? Well, after much discussion and research, the following seem to be high on that list:
1. My reflux. It seems about 70% of children diagnosed with autism have a severly impaired gastrointestinal tract from disorders like GERD. Between the medications and my limited diet, it's very likely my body wasn't able to absorb and digest the nutrients I needed (Calicium, Protein, Iron, and Zinc to name a few).
2. My vacinations. In 2001 vaccine makers have been taking toxic levels of mercury out of childrens vaccines. I've had the same injections every kid is suppose to have with the addition of Hepatitis A and a Flu shot. The Flu shot was probably the worse of them all because manufacturers are still allowed to use mercury as a preservative in this vaccine. My Mom was also given Rohgam before getting pregnant with me because of a miscarriage, and instead of listening to my Dad and what his blood type was, they gave it to her anyway, saying "It can't hurt anything if she gets it." Mercury is also used in Rohgam as a preservative.
Those are two big red flags when looking at what might cause autism, but again, no one can say this causes autism or that causes autism, which kind of sucks for parents of children with autism. With all that, the last question is "What are we doing about it?"
1. A new diet. Mom and Dad are working to get me on a gluten free/casein free diet, which has been something of a headache since there is so little I will actually eat. I don't eat food. My entire diet consists of liquid and vitamin supplements, and getting me to eat something different that fits into this special diet is not only difficult but expensive, really expensive.
2. All new play. Mom has joined a Mother's playgroup that not only has playdates for me but mother gatherings for her. Don't know what Dad's gonna do. We also spend a lot of time at our local parks trying to get me to interact with or at least notice other little kids and what they do. And there's a lot more one on one face time with Mom and Dad.
3. Doctor's appointements. Oh yes, over the next six months we have appointments with the Regional Center of the East Bay which will help diagnose my condition and determine what therapies are needed to help me develop the areas that have been affected, as well as appointments with the Autism Spectrum Disorder Clinic and a DAN Doctor, for pretty much the same reason, although the DAN Doctor will look a lot more closely at what's going on internally.
Once the doctor's appointments get going, I'll have a lot more to talk about. Looks like the next year or so is going to be pretty busy for me, Mom, and Dad. We appreciate all the love and support we've gotten and will try to post updates as often as we can. Enjoy the video.
My Grandpa R asked to see more pictures of my amazing family, so I put this little flick together with some of the pictues I have from our time together as a family. It's been a lot of fun with some good adventures and a couple of tough spots, but we're a family and being a family is what we're all about.
As I approach the age of two (only a couple short months away), I find I have much more to think about. Not thinking enough about a certain subject seems to bring on fits of rage which I unleash on my Big People, who then counter my rage with a knowing look.
I'm still not talking, don't know why everyone's making such a big fuss about it. Look at me, I love life!!
So, as I approach that point in my life when fits of rage and moments of mischievousness abound, I once again found myself caught in the act by my parents. They actually caught me much earlier on in my destruction of the wipes' box; however, they seemed to think my antics were quite amusing.
Not only did they take the time to capture me in photograph at the scene of the crime, but there was also video of this vandalism in progress. The video, I'm sure, will find its way onto this web of information and my image will be ruined until I do something undeniably adorable, a feat I am very capable of, despite my current, virtually unstoppable urge to get myself into trouble.
Not much is said (mainly because I still refuse to speak), and there's not really any point of formal discipline (because I still tune most things out, not to mention I'm so dang cute), so Ma and Pa are left with the alternative, record my behavior and blackmail me with it at a later date and time.
