How do you measure a year?

525,600 minutes. . . 525,000 moments so dear. 525,600 minutes. How do you measure a year?

Those are words from one of my all time favorite songs, Seasons of Love from the wonderful musical Rent. How do YOU measure a year?

I have asked myself this question a lot the last few days as exactly one year ago today, Charlie was officially diagnosed with autism. It's been a bittersweet kind of day as I have reflected on his progress as well as his setbacks. I'm not sure where I thought we would be a year into this journey. Of course, a parent always hopes for optimal outcomes as quickly as possible. But, that is not the name of this game. Still, it is HARD to be patient. I have learned to be happy with even small break throughs. . . actually, they don't seem so small to me.

People often ask me about Charlie's progress. It's hard sometimes for me to explain it, especially to those who are not familiar with autism. Some things may seem so trivial to them, and I sometimes get the blank look in response when I explain that overall he is just "more aware" or his "receptive skills" are very good. Or even when I get so excited when he REALLY hugs me back or uses even one word in an appropriate way. Even Adam often comments that he doesn't see progress. . . I think, though, that he is just hoping to wake up one morning and see big changes, and, in all likelihood, that just ain't gonna happen. Slow and steady . . . it's a hard lesson when you have a child with autism. You find yourself obsessing about the future. . . and getting all stressed out in the process.

Will he ever ask me a question?
Will he ever be able to have a conversation with me?
Will he have friends?
Will he be mainstreamed in school?
Will he be able to live independently?
Will he ever fall in love?
Will anyone ever fall in love with him?
WILL HE BE HAPPY?????

In the end, that's all I want as a parent. I want my child to be happy. I see now that we will likely take a different route to get there, but whatever it takes. Overall, I think we handle the day to day challenges of autism very well. Not to say we don't get down, because we most definitely do. Some days, when the behavior is off the charts (as we have had recently with a phase of aggressive behaviors such as pinching, scratching and pulling hair), I just want to sit in a corner and give up. But, thankfully, those days are few, and when one of us is having a weak moment, the other one steps in and takes care of things.

But, I also admit to moments of terror on my part. Moments that, in the midst of going about my daily business, kick me in the stomach and take my breath away. Seemingly out of nowhere. Those same questions above. And others. Will other kids make fun of him? Will he know they are making fun of him? Will he ever have a girlfriend, assuming he ever wants one? Will he ever know how to play with other children? Or, for that matter, will he ever really know how to play with a toy in an appropriate way ever again? Will he ever get his attention span back again? WILL HE BE HAPPY?? Thoughts like this have even woken me up at night from deep sleep. I run in and look at Charlie while he sleeps, and it makes me feel better.

And, I admit to other, more selfish questions. . . Like. . Will he ever be able to eat food without making a HUGE mess? Will he ever stop throwing the couch cushions all over the floor all day long? (He likes to get under the cushions, probably for the sensation of having them against him.) Will he ever stop mouthing things all the time? Will I ever NOT feel totally exhausted? Will I ever feel totally comfortable at someone else's house instead of feeling like I need to be on top of him all of the time? Will I ever not leave a birthday party or other gathering of his "typical" peers and not feel a little depressed? Where the hell did all of his language GO?? What the heck happened to his attention span? How did I get here?? :)

It's been an up and down ride this year. Sometimes it's hard for me to share these personal thoughts, but this is what it means to have a child with autism. These are our daily concerns. . . But if you look closely, they're not all that different from a parent of a "typically developing" child. . . albeit a little more extreme on our end.

But the positives far outweigh the negatives. We have seen some great things from Charlie over this last year. He is slowly gaining back the language that he lost, and more and more using it in an appropriate context. He seems to have a general understanding of some social situations. For example, this evening he pinched Addison a little too hard which was not intentional on his part. She cried, and I fussed at him. He saw Addison crying and looked really concerned. He started crying, too and appeard to feel bad for making his sister upset. He definitely understands language better than he used to, and will even listen to you from across the room or from upstairs. (Big development considering how "spaced out" he once was, requiring you to call his name over and over and usually get up in his face to get his attention.) He now sits at circle time, hangs up his own back pack, unzips his own lunch box, helps put on his own pants and shirt (and, can almost do this by himself), and is making great strides in the potty department. We still have lots of work to do in many areas. It's not going to be easy, especially when faced with Charlie's sensory issues and extremely short attention span, but we're learning every day to be patient while pushing him to do his best.

This has been a hard year. It's still hard for me to believe that it's only been one year. With all of the changes and everything we have learned, it is almost mind boggling that it has all occurred within the span of one year. But, even though it's been rough, I still wouldn't classify it as bad. We're on this path, whether we chose it or not. So, we have to make the most of it. One positive of autism -- it truly makes you appreciate the little things. When Charlie says "mommy" clearly, it makes my eyes a little misty. When he has a good potty day, I am in a good mood. When he runs to me and hugs me, it makes my heart swell so much it feels like it will burst. We NEVER take these things for granted anymore. It is all so precious.

So, how would I measure this first year on our autism journey? In resilience? Lord knows it has taken oodles of that to make it through. . . In patience. . . we've needed an endless supply of that and will continue to do so. I'm tempted to measure it in hope, as we are certainly hopeful every day. We can never let go of hope without giving up on our son.

While all of these would be appropriate measures for this year, I think I will follow the lead of my favorite song and measure in LOVE. In this regard, this year could only measure as boundless.

1st Round of HBOT down. . .

Whew. We have been a busy crew over the last 40 or so days. As my previous post indicated, Charlie started HBOT on February 1. What an interesting experiment it has been. Of course, because he is so young, either Adam or myself had to do every "dive" with him. Since Adam is working and traveling during the week, I did the week day dives, and Adam covered the weekend shifts. We tried our best to do 40 days in a row, but did have a few missed days due to illness, weather, etc. Over all though, we stayed on target very well I think.

The first few dives were interesting for me. As you can imagine, being in a small, confined space with a very hyper 3 year old can make for challenging times. There weren't a whole lot of things for Charlie to play with in there, so he took to "playing" with mommy. I got poked, scratched, pinched, kicked, rolled on, kneed in every possible part of my body. Needless to say, it was no fun for me the first couple of times. . . except for the rare moments when Charlie would calm down and let me cuddle with him.

But, after a few dives, Charlie got the hang of it and even started sleeping through most of them. I must admit, part of me looked forward to our daily HBOT dive, because, if Charlie was asleep, it meant some assured down time for me to either just veg, or, usually, to read. Like most busy moms, I don't really do down time. However, when you are laying in an HBOT chamber with a sleeping 3 year old, you have no other choice.

Near the end of our 40 sessions, I took Addison in with us when I had no one to watch her. That is an exercise in patience if I have ever had one. She was ALL over the place. . . and ALL OVER ME. After about 10 minutes she was asking to get out and then crying because I told her we could not get out. She did get better, but I earned my mommy salary that day. She will be going back in with us for the second rounds. . . I am feverishly searching for our portable DVD player so as to have something to distract my busy little 2 year old.

So, on to the most important part of this post. . . what changes have we seen since Round 1 of HBOT??? Well, I think, quite a few. Most notably, we have seen a nice increase in language. And, more importantly, appropriate use of this language. Sure, we still have lots of random repeating and words out of context, but increasingly more appropriate use of words. For example, and perhaps my favorite, Charlie has been using "oh shit." Okay, oops. . . that is my fault. BUT. . . he uses it appropriately. One day, he dropped some grapes in class and said "oh shit." As his teacher said, he certainly won't be getting into any trouble for using appropriate language. . . no matter what that word may be. That same day he also stole another student's shoe and made the little boy cry. Charlie started crying, too and said "I'm so sorry." He has also manded (or requested) lots of items, particularly food items, such as "waffle," "chip," "baked beans," "melon," "juice," and "water." His echo has gotten stronger and he will repeat more things he has heard right after he hears them. On another occassion, he told the secretary at the school's front office "good morning" right after she said it to him. In addition, he mands with signs more frequently. He most often signs for straw, chip or sandwich. This is the first time I've really seen him sign without having to be prompted for it first. What I consider to be a HUGE development for us, Charlie has answered a few questions with "yes" or "no." This is a very big deal, because it is the first step to conversation. He acknowledged he was being asked a question, and answered it. This is not an easy concept for lots of people with autism. (Come to find out, he has also answered "yes" in class -- when they asked him if he wanted to wear his squeezy vest).

I was very excited a couple of weeks ago when we went to the park one day after school. It was a beautiful day, and I had a major case of Spring fever. At first, Charlie was quite upset. I'm not sure why except that I knew he was very tired. I think he may have also been confused about why we were at the park and not at HBOT since this had become the routine. He calmed immediately, though, as we started walking. We made our way to the playground, and as I pulled the stroller up to the play area, Charlie started wiggling and trying to get out of his seat (he was strapped in) saying "go slide, go slide!" Let me tell you, I could not get him out of that seat fast enough so he could "go slide!" Then, while at the swings, he heard one child tell his father "go faster" and he turned and immediately repeated the phrase to me. I was pushing him as fast and as hard as I could to oblige him and encourage the use of language. It was a good day, even if Charlie was quite agitated . . .the park was very crowded and a little overwhelming for him that day.
He also just seems to be more aware and in tune. He listens fabulously to instructions and seems to understand everything that is said to him. On at least two occasions when I asked for a hug/kiss, he put his lips out to mine and threw his arms around me, as opposed to the ol' lean in of the body to let ME hug him. (And, believe it or not, the pucker manuever to kiss someone is quite hard for many autistic children). When he did that, my heart felt like it would leap right out of my chest.

We have seen some other changes, too. Some not quite as good. Mostly, increased hyperness and stimming. We were told to expect this, and everything I read also indicated this was a possibility through the first few dives. The first couple of weeks, Charlie was spinning A LOT. And we definitely saw increased laughing spells, night waking and "jibber jabber" (the constant background talking Charlie can do at times). This did get better over the course of 40 dives, but it did remain an issue, especially the sleep, or lack thereof. Charlie has taken to getting up at 4:00 a.m. at least 2 or 3 times a week.

I also feel like we saw increased moodiness and fussiness. I'm not quite sure what is going on here or how much it may or may not be related to HBOT. Or, is it just that Charlie is becoming more aware of his surroundings and realizing how hard it is for him to communicate?? His teacher thinks it may just be a natural progression and not necessarily a bad thing, and, in fact, a good thing. That may be, but it ain't easy to deal with. He gets frustrated more easily now, and seems to be more vocal about it. In fact, one night he downright scared me. It was bed time, and, as usual, I was having a hard time keeping Charlie in bed. He came out of his room, and I caught him trying to climb up in our bed. I sternly told him "no" and he screamed/growled very loudly while running at me. Louder and more intense than I had ever heard him do before. He ran to me, but immediately put his arms up so that I would pick him up and comfort him, which, of course, I did. He was absolutely trembling like he was scared to death. I'd never seen anyting like this before with him. I walked him back into his room and talked to him. He seemed to be freaked out by his aquarium night light so I turned it off. The trembling subsided and he went to sleep. I, on the other hand, was freaked out for the rest of the night and could barely sleep at all.

The next night, I could not get the child to go to sleep for the intensity of his giggling fits. He sat in his room and laughed non-stop and, for the most part, uncontrollably for over an hour and a half. I have seen and heard many giggling fits over the last year or so, but this one was different. I went in to tell him to quiet down, and I couldn't get any words out over the loud giggling. It may sound like it was cute and funny. . . but it was anything but. It was downright freaky, to be honest. I still have no idea what that is about.

Just over a week ago, I received a call from Charlie's teacher one Friday morning. She asked if Charlie had a history of panic attacks. My immediate response was "NO. WHY???" She told me that he had been at the table eating snack. He was very happy, eating a yummy snack and holding a straw (which, for those of you that know Charlie, you know how much he loves straws). Out of nowhere he started pouring sweat and got very red in the face. She said it sounded like he was hyperventilating, and she actually got nervous that he was choking. He started to scream loudly over and over. She said it sounded like he was in pain or being tortured. Other teachers came in and saw what was going on. None had ever seen anything like it. . . and this is a school and group of teachers that are experienced with autism and have seen many seizures and strange behaviors. Once the screaming stopped, he was dazed and confused, like he didn't know where he was for a while. When he "came to," he started saying "daddy, daddy." He had 2 other minor spells where he seemed to get agitated again. I was freaked out about this, but, I admit, at first I thought it was just another tantrum of some sort. Until I called the doctor.

The doctor started asking me all of these specific questions and, after I told him everything I knew, he said it sounded very suspicous of a seizure. I went online and, unbeknownst to me, it's not uncommon for people to scream bloody murder when they are having a seizure or, for that matter, giggle uncontrollably.

Naturally, my mommy brain just started spinning out of control at this point, now feeling assured that my child had at least one seizure. (I don't think the giggling incident was a seizure because of the long duration and, more imporantly, because he was totally aware and did everything I asked him to do during it. He just laughed the whole time. Nevertheless, it will be discussed with the neurologist.)
I asked the doctor if HBOT could be the cause of the seizure. I had read that HBOT may not be recommended for children who have seizures because it may increase the frequency of the seizures. The doctor said he had never heard of mild HBOT (which is what we are doing) contributing to seizures in any way, and he does not think it is related. He did, however, think it was possible that our evil nemesis, gluten, may have been the culprit. (Not a certainty, but he said he has seen gluten cause seizures.) Charlie had gotten hold of gluten (a roll and a cupcake) the previous Saturday at a party. I swear, the child can sniff it out from across the room and makes a beeline for it. I was planning on doing another gluten challenge next month, but I decided we'd just try it early since Charlie had helped himself. So, that entire week he got gluten filled products -- regular pizza, regular chicken nuggets, etc. And, in fact, we did see strange behaviors all week. I admit, I still have a hard time wrapping my head around the notion that gluten could cause all of this, the increased tantrums, giggling, seizures, etc, but ya just never know. Needless to say, gluten has been removed once again.

I called around frantically on Monday to make an appointment with a neurologist for an examination after Charlie's seizure. (This was after a weekend where Charlie slept every night in our bed because I was too afraid to leave him alone all night.) The first available appointment I could get was October 1!!! Yikes. . So it is with the unbelievable rise in autism that the pediatric neuros here are booked out for MONTHS. I did talk to the nurse. She made me feel much better. She told me it is not uncommon for children to have one seizure and then never have another. If he were, by chance, to have another, we were to go straight to the ER and the doc on call would see us right away. She said one seizure does not raise a red flag for the doctor, but two, and they start wondering what is going on. We spoke a little more, and she sent me some paperwork to have Charlie re-evaluated for ADHD. She also said I would be placed on the waiting list and would likely get in much sooner than October. Let's hope.

So, all in all, it's been an extremely busy time for us. Between taking Charlie to school, OT and HBOT, (and my very meagre work schedule) I practically live in my car. But, I am not complaining because I feel like we are doing the right things for our little man.

Our second round of HBOT starts this Tuesday. Once again, we are going to make every effort to go 40 days in a row (or as close to that as we possibly can). I am so proud of the things Charlie has accomplished in this short span of time. I look forward the endless possibilities.

Winter Update

Hello from our mini Winter wonderland here in Waxhaw, NC! We got a piece of a winter storm that passed through this weekend. Not much snow to speak of, but we did have some sleet and freezing rain. It was just enough to cover the ground so that the neighborhood kids could go sledding on the little hill across the street from our house. Adam and Charlie went sledding yesterday for a bit.

We've had a busy 3 months since my last post. We had a fabulous Christmas this year, celebrating with Adam's family in Ft. Wayne, IN. We finally got to see Che Jacobs (aka the new house on Big Long Lake). It is just beautiful, and we really did not want to leave. :) Charlie and Addison just love spending time with their big cousins George, Alice and Sophia. Charlie, in particular, has always taken a liking to George. Addison was quite smitten with Alice who just showered her with attention. (A sure way to win over Addison's attention seeking heart.)

Over all, Charlie did seem to be excited about Christmas although he never spoke about it (beyond a few attempts at singing what sounded like Christmas carols). He did a great job at sitting through church on Christmas Eve and enjoyed a few of his presents, including an array of sensory balls and a slinky. However, he was not a fan of opening presents. In fact, it seemed to almost upset him or make him nervous at first. He got more used to it, but never got into the act of ripping open wrapping paper. Guess it just makes life easier for me for future gift giving occasions if I don't have to wrap. :) Addison was more than happy to open presents her big brother did not care to open himself, as you can imagine.

Charlie has continued to do well at his (not so) new school. He is now sitting through circle time all on his own. In the past, he had to be repeatedly prompted and reinforced to sit through circle time. Now, he has learned that this behavior is expected and does so all on his own. That's a big development for us! He has even clapped along with music all on his own as well. Another big and exciting development for us. To me, this shows he is more aware of his surroundings and what is expected of him in a school environment. He's doing really well, and I am very proud of him.

Charlie's tummy issues are much better now. For the first time in a long time, we are seeing some solid BMs. After the last OAT test, we were delighted to see that Charlie's clostridia levels were in the normal range. We are still working on potty training. He will pee in the potty, but no poop yet. And, to be frank, he will just as readily pee in his pull up as the potty. So, we have to try to stay on top of him and put him on the potty regularly if we want to go an extended period of time with a dry pull-up. I have been reading a little about potty training a child with autism. I'd like to work on this over the summer when Charlie will be home with me a little more. It is not going to be an easy task.

In the last month, we have added some homeopathic remedies into our treatment protocol. I met a wonderful doctor of natural medicine through a local on-line autism web group. She contacted me for some legal advice. At the same time, I was reading up on homeopathic and natural remedies so I was very interested in her practice. She recommended some new supplements for us. We started 3 new ones -- GabaFlo, AcetylFlo and NeuroTrans Active. All of these are sprays which we spray in Charlie's mouth 2-3 times a day. We have seen some changes since we started these supplements, most notably an increase in language. Granted it is mostly echolalia, but I'll take any increase at this point. His teachers at school even commented that he was more talkative than he had been. (Apparently he recited a line one of his teacher's likes to use quite often: "That's the bottom line." Around our house, he repeats "That's enough" and "Knock it off" which are two things I say daily around here.) He has also spontaneously requested things like "water" and "chip." A couple of times it really sounded like he said "thank you" when I handed him something to eat or drink. His pronounciation is not always clear so sometimes it is kind of hard to tell. But, it gets a little clearer every day. However, we have also seen some increased stimming, mostly spinning. This isn't too surprising as any new supplement can cause increased stimming or other behaviors until you get used to them. So, for now, we will just keep our eye on the frequency of the stims.

We are also extremely excited to be starting HBOT tomorrow!!! We have wanted to try HBOT for some time now. When Charlie was first diagnosed, we took him to see a neurologist on the advice of the developmental pediatrician who diagnosed him, mainly to rule out any seizure activity. The neurologist recommended HBOT as a helpful treatment. Also, Charlie's DAN doctor highly recommends it and actually runs a HBOT clinic out of his office. The downside is that HBOT is EXTREMELY expensive, average of $90-$100 a "dive" with 40 dives each round being typical. So, you're talking about $4000 for a round of HBOT, and usually repeated rounds are recommended. It's a very promising therapy, but it's a hefty price to pay, especially when there is no guarantee your child will respond to it. But, as fate would have it, the doctor that I met has a hyperbaric chamber in her office and is going to allow us to try this treatment for Charlie. I cannot even express how grateful we are and how lucky we feel to have met this woman.

So, Charlie starts HBOT tomorrow. Either Adam or I will have to go in the chamber with him as, almost certainly, he will not want to go in there by himself (and certainly will not want to stay in there for an hour by himself). In the beginning, it is recommended that Charlie go every day if possible for the first 40 days to see if he responds favorably. So, we are going to try to make this happen. It won't be easy juggling Charlie's school and therapy, a feisty 2 year old, a husband who travels a lot for work, my meagher work schedule, and traveling up to Cornelius for HBOT. . . but we are going to make it work!!! My mom is coming down this week to help while Adam is away. The second week of February, Adam's mom will come down to help out, and the next week Adam's dad will be coming. We couldn't do this without our families so we are, again, ever so grateful.

I am anxious to see how or if Charlie responds, but I am cautiously optimistic. I know not all children respond, but many do. And, like other interventions, some respond in dramatic ways while others show only small improvements. You never know until you do it. I am just so glad that we get the chance to try this therapy for Charlie as many parents never get the opportunity. Please keep your fingers crossed for us and say a little prayer. We'll keep you posted on our progress.

We're still here!

OK, OK, OK. . . I am officially the worst blogger in history. I know it has been literally forever since I last updated. But, not for lack of anything going on in our lives. In fact, we've had some MAJOR life changes. . . which is the main reason I have neglected this blog for so long. Plus, I must admit. . . I am just tired these days and frankly, haven't felt much like blogging. But, I am getting back in the swing of things and feeling more energized.

So. . . where to begin?? For starters, we have moved to Charlotte, NC. Yep. In the space of about 6 weeks, we put our house in Tampa up for rent on Craig's list, rented it out to a great family, made a trip to Charlotte to sign Charlie up for school and find our own home to rent, packed and made the big move back to North Carolina. Did I mention we packed and moved ourselves entirely?? (With some help from family and friends packing.) No small task considering the unbelievable amount of CRAP we have. I have no idea how a family of 4 can have so much stuff! And how we fit it in our Tampa home is mind boggling. Our new home is almost twice the size and we filled it up with our stuff.

So, why the big move?? We did a lot of soul searching and research since Charlie was diagnosed with autism. It's not that we were unhappy with his therapies and therapists in Tampa, I just felt like we could do MORE. I wanted him in a school environment where he could be around other kids. I know he doesn't exactly "play" with the other children, but I also know he is aware of their existence and does observe what they do. I think the best way for him to learn socialization skills is to be around other children. I also wanted to keep him in ABA. I just did not like the idea of sending him to the public school program and then doing ABA on top of that. It just seemed like too much, and just never FELT right to me. While I did like Sydney's School in Tampa, it really was only a preschool which left us with no real options for post-kindergarten.

So, while researching I came across Garr Christian Academy in Charlotte. Just this year, Garr merged with another Christian school in the area and is now called Charlotte United Christian Academy (CUCA). CUCA is a general education school, ages pre-school through 12th grade. It's a very small, very tight knit Christian school. I think total population, not including pre-school, runs about 150 students. Of that 150, approximately 30 of the children are on the autism spectrum somewhere. CUCA implemented an ABA program approximately 6 years ago. Charlie is now the youngest ABA student there (although many of the current ABA students started at about the same age as Charlie). Charlie's class has 5 students and 4 teachers and is headed by a BCaBA. Everyone there seems very dedicated and professional. They adhere to the Verbal Behavior approach of ABA and do lots of natural environment training, teaching the kids to play and work on language and social skills. They have different levels there with kids across the entire spectrum. The early learners are usually in an ABA classroom all or most of the day. Gradually, they work on inclusion and introducing the student into the general ed classroom. So, eventually, Charlie will spend some time in the pre-school classroom with an inclusion specialist (or "shadow") to help him as much as necesssary and to teach him the rules of the classroom. The ultimate goal is to have the child included as much as possible. Some of the older ABA kids are in the general ed class all day, with no special supports, others are in the general ed classroom for most of the day and are pulled for special services, still others spend more time in an ABA classroom. It is all based on the needs and skills of the student.

Charlie seems to really love it there. From day #1, he has had a big smile when we drop him off and pick him up. (Not like his previous pre-school experience where he cried almost every day we dropped him off.) Admittedly, he is a little exhausted by the end of the day since it's a longer day than he is used to, and Adam and I miss him terribly since we are not used to being away from him for the better part of the day. (He goes M-F from 8:30-3:00.) But, I feel that this is the right place for him now, and I think we made the right choice. Who knows where Charlie will be in a year or two, but CUCA has the potential to be a long term placement if we choose to keep him there. The most important thing is to have him in an environment where he is happy and can thrive. I could go on and on about the adorable kids in his class, but I'll save that for another time.

Addison and I had the privilege of attending Charlie's first ever field trip to Hunter Farm for pumpkin picking and a picnic. What a fabulous day to spend time with my children, Charlie's teachers, and his wonderful and sweet classmates. It was a great day! On another note entirely -- the pumpkin patches here put the ones in Florida to shame. I have been in heaven with all of these wonderful Fall festivals, pumpkin patches, hay mazes, etc.

Addison has adjusted beautifully to the move. I was worried that she would miss our neighborhood terribly. While I am sure we could go back tomorrow and she and Charlie would carry on as if nothing changed, she has really treated this like a new adventure. I have really enjoyed having a little more one on one time with her now that Charlie is in school all day. I get to do the things with her that I did with Charlie before she was born -- toddler time at the library, playground, long walks in the park, lunch at the mall. . . and even a random Starbucks visit here and there. We love our girl time.

Adam and I are also very happy to be back in North Carolina and be closer to our families. I just love that we get to have a real Fall this year since there is no such season in Tampa. I just love that crisp feeling in the air and the beautiful leaves. But, I will readily admit. . . I miss Tampa more than I thought I would. Really, I miss our neighborhood and Westchase the most. This is a great house, but it doesn't have that "home" feel like our house in Westchase did. I miss our wonderful neighbors and being able to walk everywhere like I did in Westchase. We also miss our pool terribly. This is what I miss the most for Charlie. He had turned in to quite a little fish and could swim the length of the pool. I hate that we don't have a pool in our backyard anymore. There is a community pool, but it is only open during th summer. I hope to join the Y so we can get an indoor pool for Charlie to swim in this Winter.

Since I am with Charlie every day, it is really hard for me to assess his progress at times. As usual, it seems like we take two steps forward, then one step back. I know the adjustment to a new home and a new school may have delayed things, although, I am so impressed how well Charlie did with it. He is very go with the flow. We are lucky not to have an ASD child who is stuck on routine, or we would have been in a world of hurt. My mom was in town last week and thinks she sees improvement in Charlie. She thinks he is more "aware" of what is going on and not as "spacey." I would agree with that over all. Don't get me wrong, he is happy to go off in another room and stim to his little heart's content, or run up and down the hall all day, but the second you tell him to stop or come, he's there. I think his verbalizations have increased, although not significantly. He continues to have days where he says words spontaneously, and other days where almost everything is gibberish. I have noticed, however, that the gibberish is taking on more of a decipherable (is that even a word?) nature. If you listen close, many times you can tell that he is trying to say the beginning of certain words or is repeating what you just said. You also have to listen close as he likes to whisper words at times. This is not uncommon with autistic children. It is easy to miss though so you have to always pay attention. I've noticed on numerous occasions that I will be standing in the kitchen preparing a snack, and Charlie will walk up and see what I'm doing, then very lightly say "carrot" or "raisin" when he sees what is on the counter. I also think he has made some efforts to tell us he has to go "poop," but again, this is hard to tell because you can't always tell what he is saying and sometimes he says it so softly you can't be sure you even heard it (especially with a loud 2 year old talking in your other ear).

One thing I have noticed is that Charlie seems to enjoy interacting more than he did before. He seeks it out more, coming up to you and hugging you or putting his arms around you and looking at you and smiling. I know his gibberish is not gibberish to him -- he is really having a conversation with you and knows exactly what he is saying. He'll look right at you and speak some gibberish and then give you a big smile. Man, that smile is the most beautiful smile on the planet and just melts my heart every time I see it. The teachers and therapists at Charlie's school believe it is a motor problem. I tend to agree as I have been saying that Charlie actually reminds me of my dad in a lot of ways. My dad has now had 2 strokes and, unfortunately, his speech has declined significantly as a result. He still talks, but his words are very slurry and he is hard to understand. He knows exactly what he is saying, but it often comes out as gobbeldy-gook (or gibberish) and you have to ask him to repeat himself and really strain yourself to understand at times. My dad says he knows what he is saying and can see the words in his head, but has a hard time getting them out. I know it frustrates my dad when we don't understand him -- imagine how it feels for Charlie when he wants something to eat or drink and can't get the words out. I do think, his little brain knows what it wants to say, there is just a problem getting it out sometimes. What is super frustrating, though, is that the next day he'll turn around and say the word crystal clear. Ugh. . . Oh well, no one said this autism thing was easy.

On a biomedical note, Charlie continues on a whole slew of supplements. His last appointment with the DAN doctor was in early September. We ran another OAT test. Charlie's yeast levels came way down, but his clositridia markers almost doubled. Yikes. So, we changed his probiotic to a strain that includes lactobacillus acidopholus and Sacc B. He also takes an herbal blend of oregano, turmeric, cumin and thyme. It stinks to me, but he drinks it down bless his heart. We also doubled his Co-Q-10 and Riboflavin. We just did another OAT test last week to see how the clostridia levels are and should have the results in a couple of weeks.

We decided to challenge the GFCF diet since Adam was never convinced of any change as a result of the diet. I was starting to wonder about it too after Charlie had a couple of infractions that seemed to have no effect on him. So, after consulting with our DAN, we decided to challenge each food group, one at a time. First, we reintroduced dairy. Hallelujah! No issues with that. Charlie ate his first piece of cheese in 6 months and absolutely loved it. The school did not notice any behavioral issues either. So, we decided to reintroduce gluten. We didn't have the success we did with dairy. Charlie got very agitated, became almost rough in his sensory seeking behaviors (head butting Adam, smushing you until it was almost painful), pinched, was removed from circle time at school for pushing and pinching, and bit someone at school. And that does not even touch the funk that the poor child left behind in his diaper after eating the gluten. That, and that alone, is reason enough for me to keep the kid off gluten, at least as long as he's in pull-ups. I'll spare you the gory details, but suffice it to say, the military could use this stuff to force Bin Laden out of his hiding place in Afghanistan it smelled so atrocious. I also suspect that the DAN will recommend the Low Oxalate diet for Charlie based on his prevous OAT tests. I just hope to get the little guy's tummy straight so he can have regular, solid BMs.

A few weeks after moving up to Carolina, we participated in Autism Speaks' Walk Now for Autism. Shortly upon making the decision to move we signed up to partipate in the walk, which was held at Lowe's Motor Speedway in Concord, NC. It was quite an experience seeing so many people there on walk day. It really hits home how many families are struggling with autism every day and just how widespread it is. New research numbers from the American Academy of Pediatrics show that 1 in 91 children are diagnosed with an ASD, 1 in 58 boys are diagnosed. That, simply, is unbelievable. This number is way too high, and we just can't sit around and hope something will change. We decided to be proactive and help raise money to find a cause, a cure and to support families that live with autism every day. We are so grateful to have such generous family and friends. Their support in our journey and our efforts to raise money for this cause mean more to us than words can ever express. We are still collecting donations, but as of the current date, our team has raised over $6,500 for autism research and advocacy. We are so very blessed to have such wonderful people in our lives.

A Fabulous Vacation

We took a week-long trip to San Francisco and Sonoma, California for a combo vacation/wedding. What a great time! I can honestly say I have probably never needed a vacation so badly. I was worried about the cross country plane ride, but the kids did pretty well. Actually, Charlie did great. . . Addison was another story. That girl does not want to sit still and is not content unless she is getting into something or voicing her opinion. Thankfully, though, she fell asleep for at least half of the trip.


We did a whirlwind tour of San Francisco, Muir Woods and Sausalito. Then we headed to Sonoma for 3 nights for my cousin's wedding. Charlie was the ring bearer. I must admit I had quite a bit of anxiety about this, worrying that he would not want to walk down the aisle. I finally got over it when I realized that he's only 3 years old, and you never know what you're going to get from any 3 year old child involved in a wedding. Charlie was "spacey" during the rehearsal and had to have some help from daddy in walking down the aisle. But, about 1/4 of the way down, he saw me in the front row and walked on his own the rest of the way. I was so proud of my little boy! He seemed to have a great time the rest of the night, even dancing a little bit at the reception. He LOVES his music!


I had a reminder that in every situation, there is always a little humor and laughter. After performing his ring-bearer duties, the father of the bride escorted his daughter down the aisle and gave her away. Just as the father of the bride stepped away and handed off the bride to my cousin, Charlie said, very clearly "walk away!" I just about fell out of my seat laughing. Obviously, this was another example of delayed echolalia and Charlie had heard this phrase at some other time before. But the fact that he chose to repeat it right at that exact time had me in stitches. Thankfully most of those around us did not really catch what he said. When we told everyone afterward, it provided all of us with a good laugh. Life is always in adventure in the world of autism!


Charlie was extremely hyper during most of our trip. I'm not sure if it was the excitement of being on vacation and being in a new place, or the addition of some new supplements. Or maybe a little bit of both. We added DMG to his list of supplements about 10 days ago. DMG can increase hyperactivity so I am keeping my eye on this. We will add some folinic acid in about a week to hopefully combat this. Charlie did have some very good days while in California, especially with regard to language. In one day he said "want apple" and "want cookie." He also counted to five repeatedly and echoed other people's words frequently. He also protested a couple of times when we attempted to either dress him or put him on the potty with either a "no!" or a "not yet!" These are all very positive signs. We have noticed that the day after he receives his MB-12 shots, we tend to see increased language.


I am working hard on learning more and more about ABA. Adam and I are really trying to do more ABA with Charlie at home and throughout his day. I am also working on collecting my own ABA teaching materials so I can implement more therapy at home. This, in an of itself, is proving to be a full-time job. I watched Charlie for an hour in ABA therapy this morning. He is still working with puzzles and shape sorters a lot. Some of the shapes he seems to have down, then the next time around, he is trying to put the triangle in the circle spot, the square in the triangle spot, etc. I feel that much of this is based on his attention span. When he really pays attention, he gets it right. When he really could care less, he tends to put the piece anywhere in hopes of just getting it done. The therapist did say that in the last hour, she put a puzzle down in front of him and he put every piece in quicker than she could have done it. I know he's got it in him.


I read an article on the Huffington Post yesterday. It was quite scary. Apparently, new numbers are coming out as a result of some federally funded studies. Autism continues to be on the rise, with an estimate of 1% of all U.S. children diagnosed with an ASD. To put this in perspective, the CDC's estimates in the early 90's were 1 in 150 children suffered from ASD (with males being four times more likely to have autism). If these new numbers are to be believed, the rate has jumped to 1 in 100 in just over 10 years. Even more scary, a poll of parents puts these numbers even higher -- at a shocking 1 in 63 girls suffering from ASD and 1 in 38 boys (or 2.6% of all males being diagnosed with some form of ASD). If this doesn't scare the hell out of you, it should. These numbers are exponentially higher than just 10 years ago, which were, in turn, exponentially higher than 10 years before that.


There is a light at the end of the tunnel though. . . research showed that an increasing number of children shed their diagnosis. And, even those who don't lose their diagnosis can make significant gains. This is the news that keeps me going. I know it is possible, and I know we can get there.

"NO!"

"No!" What a wonderful word! I never thought I would be so happy to hear this word as I was when Charlie said it to me yesterday. I was trying to convince Charlie to come to me last night. He just wanted to run around and play and knew I was trying to get him ready for bed, brush teeth, etc. I told him to come here and he flopped on the couch and half-cried and clearly said "No!" twice. I was so excited to hear him talk back so clearly, shows he understood what I was saying and what I wanted to do. More importantly, he was vocalizing his own thoughts and intentions.
He also told me "wanna play with cars" when he was on the potty yesterday. Now, I know he didn't really want to play with the cars and was using this as a way to get off the potty, but, again, I was excited to hear him put together a sentence that I had never heard him say before. Tomorrow will go down as a very good day!

Summer Update

We spent the first 1/2 of the day at Clearwater Beach. It was a perfect beach day as it was overcast and not hot at all. Absolutely perfect weather. Both kids love the beach. Especially Charlie. He can sit in the waves for hours. He seems to love the sensation of the water crashing around him. (He also loves to throw sand, which we let him do as long as there is no one near that he can throw sand on!) He loves the water, whether it be the pool or the beach. He has come far with his swimming lessons and now goes under water ALL OF THE TIME. He is doing better kicking and actually swimming and has even gotten fairly comfortable floating on his back. Addison, too, has made great progress in swim lessons. She's quite the dare devil, which makes me quite nervous at times. I have posted some pictures from our fun day today. . . you can see that daddy cut Charlie's hair quite short! I'm not sure if I like it because it makes him look so much older. He's already growing up too fast for me.

I feel like I don't get much of a chance to post these days. I sat down last night and wrote out a nice, long update only to have Adam's computer boot me off and I lost almost the entire post. GRRRRR. . . . Since time is precious for us these days and I want to take advantage of this moment when both kids are actually napping (a slight miracle in our house these days), I'll make this update more brief than it was originally intended to be.

Since my last post, Charlie has had some really good days, and some not so good days. Right after my last post, he had 3 or 4 bad days in a row, with lots of verbal stimming (mumbling that I call gibberish and jokingly refer to him as my little martian), with very few actual, comprehensible words mixed in. I was downright depressed for about a week. I try hard to keep my spirts up, and overall I think I am doing quite well, but it is hard to stay upbeat when your child is having a hard time. I have to work hard to keep myself grounded and in the moment, trying hard not to worry about the future, especially since I have no idea what the future holds and I do think Charlie is making progress. It's a task in patience, faith and acceptance. I think it's the hardest part of parenting a child with ASD.

Thankfully, the last week or so has been pretty good. Charlie's verbalizations have increased. Today at the beach he repeatedly said "ocean, ocean." The other day when the babysitter arrived he looked at her and said "how's it goin?" We all got a nice chuckle from that. At bath time the other night I announced we were going to take a bath and he said "splashing in the tub!" His echo is stronger now, too, than it used to be. He is repeating what is said to him more frequently. It is so funny to me, though, how he uses his echolalia in the appropriate context. Last night I dropped a bunch of raspberries on the floor. I said "Shoot!" and leaned down to pick it up. Charlie said "Gosh dammit!" Ha! (Obviously I don't want him to say that word, but it shows that he remembers how he heard that statement and in what context it was used. He does this a lot. Soothing himself when he gets nervous -- "You'll be ok Charlie" or "she's coming right back" if Adam or I walk away.) I think the increased echoing is a good sign over all because it shows he is imitating more. It's almost like we have to go back in time developmentally, which considering we are dealing with a developmental delay is exactly what we are doing, to when Charlie first learned language. Children learn language through imitation -- they imitate the words and sounds they hear, then learn to label appropriately. At ABA and ST, his therapists have started to sign with him. They are signing "apple," "cracker" and "more" and will work in "jump" and "cookie." The theory behind this is that it will increase Charlie's vocalizations (and research supports this theory). A lot of these children, Charlie included, get so frustrated because they can't communicate their needs or wants, so we have to find alternative ways for them to communicate. The goal is to open up the pathway of communication, then hopefully the words will start coming back at an even quicker pace.

It is a painstakingly slow process, so, again, I must ask myself for patience. I must admit, it is hard to sit and watch ABA sometimes when they do ANOTHER shape shorter or the same puzzles or ask him to do the same things over and over. I was getting quite agitated until we met with the owner to discuss Charlie's progress. She is going to let us borrow a 9-cd disc set, which is a presentation on the ABA-Verbal Approach. It is a seminar hosted by Vincent Carbone, a big wig in the world of ABA and Verbal Behavior. I have watched 2 videos so far, and it does shed some more light on why they do what they do in ABA. Still, I have to remind myself every day, this is a marathon, not a sprint. It will take time.

I am also teaching myself more and more ABA as we are considering setting up an ABA home based therapy where I would be Charlie's therapist. We are still just considering this as an option, and have made no decisions yet. But, it is rather obvious that practicing law is no longer where my heart lies, and probably never was but that's a whole other topic. We have really been doing some soul searching about our approach with Charlie and what is best. Not that I am not happy with his current therapies, but I feel like we could make some changes for the best. I have also read a book about Floortime and am learning more about RDI. These are two therapies that work more on the emotional and social aspects of autism. The parents are the primary therapists in both of these approaches. I think all of these approaches, including ABA, have their strengths and would like to incorporate elements of each. I suspect we will see a plateau with ABA around a year mark, but I think it is good for now because it seems to be the best method for intial communication and attention to task. (Charlie's attention span is fleeting at best.) I have also been researching the TEACCH method, which is heavily used in North Carolina.

From a biomedical perspective, we had another appointment with the DAN doctor. Charlie's second round of tests came back. His glutathione and sulfate levels were very good. I was actually shocked because I suspected all along that Charlie would be low in glutathione. I am not sure if all of the supplements he has been taking increased his glutathione or not. Speaking of supplements, we are taking all of the same ones. Amazingly enough, Charlie drinks his juice down with no problem. Bless his little heart -- I think I would gag from all of the stuff in there! We are going to add in additional Vitamin D as studies suggest that many autistic children are low in Vitamin D, and Charlie's tests did show he was on the low end of the normal range. We are also adding in some Folinic Acid and DMG. I am a little nervous about the DMG because a lot of kids can get quite hyper from it and Charlie is already hyper, but the Folinic Acid is supposed to counteract this. We will also do a follow-up test to see if the yeast and Clostridia have responded to the first round of supplements and meds. Once we do this, we will go off Diflucan and start Nystatin for the yeast issue. (For an interesting discussion on yeast and the effects it can have on all of us, I would highly recommend Dr. Shaw's book Biomedical Treatments for Autism and PDD.) Charlie's stimming has gotten much better -- hardly any hand flapping anymore and very little circle walking. However, he has picked up some new stims -- mumbling (the gibberish I referred to before) and mouthing objects. I'm not quite sure what sensory input he is getting through his mouth, but his senses are definitely seeking some sort of feedback. He would also eat every waking hour if we let him. We have to hide food from him now and be very vigilant in stopping him from eating off other people's plates. Thankfully, he listens very well to discipline and being told what to do. The last few days have actually been better with the eating, so hopefully this is on the decline.

Adam's dad and Sue arrive tomorrow. They will be with us for a week. I think the kids will have a great time with them. Dee Dee (my mom) was here while Adam was in Alaska. The kids just love her, and Addison in particular wanted nothing to do with anyone else the entire time Dee Dee was here. It certainly would be nice to be closer to family. . . which is an option we are heavily considering now. Lots of life decisions to be made for the Taylor family.