Sunday, November 27, 2011

Hello to all you Sam fans! :)

Just a brief update, Sam is doing great! He loves his new program (and second home) Spectrum of Hope. It is 30 miles from where we live/work, so we're clocking in about 120+ miles per day going back and forth, which in Houston that means about 5 hours of driving time (2.5 of that with Sam in the car). It's been a difficult routine for me to get used to, but Sam loves it. He reads or plays Ant Smasher, watching the crazy Houstonians drive in their crazy huge trucks.

Check out Spectrum of Hope's website if you are interested in seeing some photos of the environment Sam is working in now. He plays outside a lot, and has a handwriting (Handwriting without Tears), math, and reading program. According to his VB-MAPP and ABLES assessment, his strength is in reading. He's repeating lots of word approximations and uses the iPad like a pro when he is unable to say what he wants verbally. His verbal communication has improved dramatically over the last month - we are very excited! And Spectrum is doing a marvelous job making learning fun again for Sam! His appetite is back! He's eating everything! And his interest in interacting with people is growing as well. All of these improvements are because of how comfortable he is with his new friends and in the positive environment created by Spectrum of Hope! It's so nice to find a provider that sees Sam's potential and makes him happy to be himself. A big thanks goes to CARD as well - if we didn't have a baseline to reach for, we would have settled like so many other parents we have met along the way. CARD always had a positive outlook and saw Sam for who he is, not for who society would want him to be. I didn't realize how difficult it would be to find that again.

Since we are driving all over Houston, we have decided to pick up a few new hobbies. Hiking is one of them. We've been using a second hand 60 hikes within 60 miles hikers guide (thank you Ian!) and are working our way through all of the wooded bayou trails Houston has to offer. Sam's favorite is the Arboretum. It is on our way home (about 1 hour into Houston from Cypress during rush hour), so it's a great place to take a break from our commute and walk around for an hour before driving another two on our way to get Ryan from work - I really wish this was an exaggeration. I've signed up for a flying lesson at the Cypress airport (I have a coupon - I'm terrified really, but flight is one of man's greatest achievements - it'd be so totally lame of me to pass this opportunity). On December 2, Sam will be joining all of his friends at Spectrum of Hope to play games, do crafts, get pictures with Santa and eat treats from Mrs. Claus - while mom and dad enjoy a date night (we haven't had one since Nancy came to visit us!).

We're excited to see everyone in Phoenix this Christmas!!

Thanks everyone for your love and support! Big hugs from Sam and the family!


Saturday, September 10, 2011

The grass is always greener....

Good Morning!
Sam had a really great day yesterday. He slept through the night (very rare) and woke up on his own. I couldn't help but think that the smoke from the Magnolia and Bastrop fires had something to do with this, but then he woke up at three last night, and it's still pretty smoky. A full nights sleep really makes a huge difference for Sam.
He came down stairs in such a great mood, looking for hugs and smiles. Potty time occured without protests, and he was absolutely adorable during breakfast. He didn't want to finish his banana, so he patiently held it up for me to eat (really great interaction!).
He pointed to a few desireable items throughout the day (apple, inflateable bed, shoes) and while he waited for us to give a verbal approximation of the word before he would say anything, the fact that he was pointing on his own, spontaneously, is fabulous!
We went for a walk after the sun went down to a park hidden in a nook of town houses down the street. The swings and the slide are his favorite activities. Ryan and Sam had a blast on the merry-go-round, but I think he was on for too long. He looked a little green afterwards. :) It might be a while before he rides that again.
After we put Sam to bed, Ryan and I had one of those moments where peace would settle in long enough for a glimmer of hope to shine through.
"I think we're doing really good," Ryan said to me, then proceeded to list all of the things we are working on and how these are all coming together in a healthy, albeit slow, progression for our family. I took a deep breath an allowed myself to believe it for a few minutes. It's important to have moments like these; they happen so rarely and so breifly.

Sam had a hard time sleeping last night. Saturday jobs, Farmers Market, swimming, and painting are on the schedule today, with an evening walk to the park again. I put together a summary of programs we are going to be working on at home, including dressing, opening mouth wide while brushing teeth, spontaneous manding, compliance, colors, shapes, animals, object labels (starting with household objects), hair cutting, and pill swallowing. All of these were programs that CARD had worked with us on. He's not working on these with TYAP and we would like to make sure he is maintaining what he has learned in the past. We're also taking Sam to public restrooms once a day to try and overcome the anxiety he has associated with the toilet. We need to do this before we can move forward with potty training. If he refuses to tell us he needs to go potty because he's afraid of the toilet at the store, we'll be cleaning up a lot of accidents. Sam seems to be more aware of the fact that he is peeing, though I don't think he always shows it. I have a stack of books on potty training that I need to get through this month. We're not terribly hurried about potty training. Like all parents, the sooner this is accomplished, the better we'll feel. That being said, if he doesn't realize he's peeing, it's hard to expect him to let us know before he's wet himself. A lot of parents who struggled with potty training a special needs child have advised us to be patient; it happens when it happens. We never just wait for anything to happen though. :) We've been taking wet-dry data for the last two months. We'll continue to do this every hour and take the steps needed in order to overcome his anxiety in public restrooms. While we can't control whether or not Sam knows he's peeing, we can control his environment (to a certain extent), and we intend to make every effort to ensure that peeing on the potty is a most thoroughly rewarded experience for him.

Friday, September 9, 2011

I've got a few minutes to post a little bit about the last couple of days. Sam seems to be feeling much better. He has been resisting attending TYAP. I think we decided we are going to wait 6 months before deciding whether or not this is the right place for us. They don't know how to utilize the iPad, and while their follow-thru is great, they are ice cold and rigid. The communication lapse between clinicians and parents bothers me more than anything else. So, I've already collected some alternative providers and will be touring (yet again) throughout the next few months to see if there is a program that follows through while encouraging positive growth. Sam is not happy here. We are not happy here. I'm terrified that we left Sam's best chance to overcoming autism when we left Phoenix. There wasn't much we could have done to avoid it, and there's no way of knowing that for sure. We really have to try and make this work. I've spent the last few days writing out goals and programs for each goal. I have a list of research papaers and books I need to get through as well (focused mainly on speech therapy and communication devices). Once we have established a solid ABA provider (that is not TYAP), I can branch out and look for speech and occupational therapy providers. I've tried talking with the other moms, they seem to be on a whole different path than we are (very big on biomedical). We are trying to find a more natural, educational path towards accomplishing our goals. So my goal is, by Christmas, to have a new ABA provider (if TYAP produces little to no results), and to begin speech and occupational therapy. Once I've finalized Sam's home programs, I'll post those. Thank you everyone for your support. As always, any references, articles, books, or questions you may stumble across are welcome and most helpful.

Tuesday, September 6, 2011

A Smoky Tuesday Afternoon

Sam and I are staying home today. The smoke from all of the fires around the state of Texas is over-whelming. Sam has a habit of wiping anything wet on his face with his sleeve. The smoke has made his eyes water and his nose run quite a bit throughout the last few days, so his face is very chapped. We took his shirt off to avoid further chapping. He can't really handle lotions or chapstick right now (something we will need to work on, for sure). We made sure to stock up on fruit snacks as a reinforcer for taking cold medicine (Children's Allegra); it seems to calm his cough and slow the flow of mucus. I know that these are reactions to the smoke and it's important to flush the smoke out, but aside from alleviating some of the painful symptom's there's not much we can do. Staying inside, avoiding much cardio, increasing fluids, this is all we can do at this point.
We drove to Austin this past weekend. It was a fun trip for the most part. Sam really enjoys watching trees and cars. As long as the road trip stays between 1-2.5 hours, he's very happy. Austin is a three hour drive, so the last half hour can be a little rough. Movies don't help much with this. He becomes so over-stimulated with the music, the sounds, the visuals that he usually pushes the small DVD away violently, obviously uncomfortable with it being on at all. Even if we turn the screen away from him, he tries to find a way to turn it off entirely. He loves his books though. We try to make sure a stack of his favorites are available on every trip, right next to a few of his favorite cars and a toy that plays music and lights up (he has a few of these- they seem to be more of a way to pass the time for him). I love this picture! We're at the state capital. I couldn't get him to smile. He was so tired, hot, and groggy from all of the smoke!
Austin is a really beautiful city! Sam really liked walking around the city. There was so much to do, and everyone was really nice. We took Sam to a hotdog joint down town called Franks. He usually gets so excited he has a hard time sitting down in places like this. We were worried that we weren't going to be able to stay long. The server was totally awesome about it though; he brought out Sam's drink and made sure we had a seat up high (second floor balcony) so Sam could look around. He has a hard time trying new foods, but seemed to like the corn dogs (the food there was AMAZING! - definitely go if you take a trip to Austin - lots of vegetarian/vegan options as well).
Bat-Bull! We totally missed the bats when we were there. Ryan thought he had seen some of them - I thought they were birds. Austin releases half a million bats every night at dusk. Anyways, we may not have seen the bats, but we did manage to find the Bat Bull! Sam did have a hard time in new bathrooms. He was very scared to even approach any bathroom (gas station, hotel, store, or restaurant). This wasn't really a situation where we could "shape" good behaviors; we had to pick him up and put him in the restroom and wait for him to stop crying before leaving. I feel like the more we do this the less he will react. It is something we are going to have to get over before we can potty train. If he's afraid to tell us he needs to go to the bathroom because he's not near a bathroom he is familiar with, we're going to run into a lot of problems.
Sam did have a hard time in new bathrooms. He was very scared to even approach any bathroom (gas station, hotel, store, or restaurant). This wasn't really a situation where we could "shape" good behaviors; we had to pick him up and put him in the restroom and wait for him to stop crying before leaving. I feel like the more we do this the less he will react. It is something we are going to have to get over before we can potty train. If he's afraid to tell us he needs to go to the bathroom because he's not near a bathroom he is familiar with, we're going to run into a lot of problems.
Austin's Children's Museum was absolutely perfect for Sam! He really enjoys playing with golf balls and most of the first floor was covered with slides, ramps, pullies, buckets, and contraptions involving golf balls. I wish I had a chance to take more pictures of Sam. It was packed! I did take a few pictures of Sam running around the state capital. He had a really good time hanging out with his Aunt Samantha (thanks for all the help, Sami!) :) Hope to get back into the swing of updating this on a regular basis. Take care and enjoy the pictures!

Wednesday, April 27, 2011

Months later...

Sorry about the gap.
So, I think the last time I updated this I was going to school for engineering, Sam was doing well with CARD, and Ryan... well, I haven't been able to discuss Ryan too much because of the sort of industry he is in.

May is just around the corner. We live in Houston, Texas now. Yes, Texas. No, I had no idea this was going to happen a few months ago. It was a sudden, spontaneous, necessary, and so far spectacular change in the course of life. And I wish I could post the details that led us to this end. Ryan accepted a job at Lateral Data, and they made an offer we simply couldn't refuse. It included a complete transfer to Houston within a month's time, which is why there was no way I could provide an update.

Before accepting this offer, we spent a while calling and interviewing ABA programs throughout the Houston area. Unfortunately CARD did not have a location in Houston. They are located in Austin, TX, which is a little more than a three hour drive from Houston. We found a handful of promising organizations; Ryan flew out the tour a few of them. He also found a cute, old townhouse about six miles away from his new office, in the Galleria area of downtown Houston. The insurance plan we were signing up for would cost about $700 a paycheck and would not cover co-pays for ABA or Speech sessions. We signed Sam up at the Tangible Difference Learning Center (about 12 miles from Ryan's office). We'll be paying them about $800 out of a pocket every month. Our medical expenses altogether will cost about $2200 a month. Without insurance these services would cost $5000 a month. This is a huge difference from CARD, who provided excellent quality home-based ABA for $20,000 a month (completely covered by insurance after deductible). TDLC is a center-based program that includes speech therapy, social skills programs, and family counseling services. The fact that all of these are included is totally awesome. Of course, it won't matter if the ABA care is subpar. We won't know that for a while. Sam starts next week. We are very excited!
We said our goodbyes too CARD. Honestly, I was in shock the whole last month we were in Arizona, so I feel that the goodbyes were completely surface level. I really do hope Sam's therapists and supervisors know how much we love and miss them. There really is no way I can even start to put to words how much we appreciate them, and I tear up every time I think about it. They gave us hope, confidence, and light in a world of complete and terrifying darkness. I only hope to find providers who can do as much for Sam as CARD did for him.

We put the house up for rent so if Houston doesn't work out we can always go home to Phoenix.

Houston is amazing. I absolutely love how green and social it is here! Maybe it's because I live downtown, but I haven't experienced the whole extreme conservative culture yet. I was given a coupon for a free drive-thru prayer session, but really that has been the extent of it. Our neighbor is Lebanese and is an amazing cook! She's very friendly, very different, and has sorta taken our family under her wing, in a non-invasive or infringing sort of way. Our other neighbor is a clean-cut fresh college grad who works a lot. His mom brings him stuff every once in a while. He likes to say hi to Sam when we pass by. I love how he never waits for Sam to say hi back, he just looks at me after saying hi and tells me how handsome Sam is or how tired he looks. I'll update later on the adventures we've had in the last month here in Houston.

Ryan loves his job. He has a cushy executive position as a client relationship manager (the title sounds a little different, but I can't remember it right now). So far it seems like we made a really good decision moving to Houston. Especially with the Arizona legislation about to be passed that would have made it impossible for us to stay with CARD in Phoenix. More on that later as well.

For now, I just wanted everyone to know that we are doing very well here in Houston. :)
I will post more on Arizona legislative changes, Texas legislation regarding autism and aba coverage, TDLC and other aba providers, and Sam's daring adventure with alligators. Hope you all are well. :)

Saturday, February 12, 2011

Nothing to report

Today was pretty uneventful. Sam flipped through every book in the house, from thick Harry Potter books to mini board books. Saturdays tend to be somewhat difficult for him. Ryan relaxes and i'm either in class or trying to catch up on laundry. Throughout the week Sam has three or four therapists giving him attention all day long, so the lack of attention I think is both a relief and an annoyance. The iPad really helps. He can ask for our attention, where as before, he would just get frustrated that we couldn't play with him all the time. And we both really like it when Sam uses the iPad to ask for Mommy or Daddy.

We went to target today to prep for Valentine's day. I found a heart puzzle card for Sam. It's perfect, really.

Ryan's a little worried about some big changes that may occur within the next few weeks. We'll make sure to keep everyone in the loop.

Tomorrow we'll head out to see Aunt Sami's new apartment. Excited for a free dresser and desk (if we can figure out how to fit it in the versa).

Friday, February 11, 2011

I caught you a delicious steak

Sam woke up this morning and decided that today would be a wonderful day to mess with his therapists. He had three sessions today with three different therapists. During each session he chose one program to pretend like he didn't know what they were asking him to do. Poor Tracy spent 15 minutes asking him what color the banana was. He insisted it was red. When she sounded like she was at her wit's end, he just looked at her, smiled, and chose yellow. :) And I know he heard me laughing about it. It's terrible - I'm sure I'm encouraging this sort of behavior. For Nicole it was body parts: Sam decided to put the picture of eyes with the nose instead of putting it with the matching pair of eyes. She couldn't believe it and came into the room to comment on how, after getting 100% all week, he only managed to match the eyes correctly once. I smiled and told her about Sam's episode with Tracy.

It's Friday I guess. Sam's done, and it definitely shows.

We're going to cook some steak tonight with butter biscuits and steamed veggies; hot chocolate for dessert. Sam really enjoys being a part of making dinner. He might not try so hard tonight though. He really doesn't like biscuit batter. :) Last time we made biscuits he put a huge glob of batter in his mouth thinking it was cookie dough. The face he made was priceless. And he thought he wasn't allowed to spit it out (feeding program) so he ate the whole glob. :)