Tuesday, October 30, 2012

School Pics

Though they won't go up on the walls, school pictures came out pretty well this year. Connor offered his usual "fake" smile, Sawyer was not impressed at all, and Xander was his usually charming self. We opt for candid snapshots on the walls, but we always order a few of the school snapshots for keepsakes.

Monday, October 29, 2012

Back Home

Our day started really early. Though 5 o'clock and I are not really good friends, Sawyer is generally awake that time of the day. And by generally I mean on any day that you don't have to be anywhere at a certain time. Because on those days, that's when he likes to sleep in. Like today. When I had to drag him out of bed at 5:45.

We arrived at the surgery center shortly after 6 a.m., where we filled out more paperwork and signed more consent forms. And then we waited. Once we were called back, they went over the procedure and then we signed more papers. And then we waited again. Then the anesthesiologist came in to go over their part. And we signed more forms. And then we waited again.

About 7:45 Sawyer was taken back. We let him keep his iPad with him, to make the transition easier. He looked back over his shoulder a few times, as if to say why aren't you coming with me, but he never cried or complained. He just went right back to his movie on his iPad.

Fifteen minutes later, I was called in to talk to his ENT. The procedure went well. Only one stitch required, just to minimize excessive spreading. It will dissolve on it's own, so no removal required. In addition to the anesthesia, they also using an injection to numb the area under his tongue. His doctor told me again how he thinks it will be beneficial long-term for Sawyer, as he had already seen increased mobility. Recovery is only expected to last through the day.

I was sent back to the waiting room for another 10 minutes or so, then I was called back into the recovery room. Having warned them that he could be aggressive if he woke up in a strange room with strange people, they wanted me there with him as he woke up.

Immediately we saw him sticking his tongue further out of his mouth than he had ever done before. He also was sticking his fingers into his mouth and licking everything in sight. Our challenge during the day is going to be keeping his hands out of his mouth and also to keep him from licking everything he sees. He definitely has a sensory and/or texture issue with the procedure, at least initially.

The good news is he seems fine. A little grump, especially with all of the reminders to keep his fingers out of his mouth. But he's already finished two Gatorade drinks, a few popsicles, and even some applesauce. He passed on the ring pop (very unusual), but picked it back up after he finished the applesauce.

We're taking the rest of the day easy - watching some favorite animated movies on the big screen and snacking at will. The free-flowing drinks and snacks, he's all for. The constant monitoring by Mommy to keep those hands down, he could do without.

All in all, a successful day. Most likely he will return to school tomorrow, and we will follow up with the ENT in a few weeks to make sure all is healing well. And we'll hope that the procedure not only increases mobility (which it already has), but that it also helps with long-term speech production.

Just another day in the life ...

Sunday, October 28, 2012

Wish Us Luck

Silly by here we wander
Silly, a photo by here we wander on Flickr.
Bright and early tomorrow morning (or actually dark and early, since the sun will not be up), Sawyer and I will be headed to the outpatient surgery center for his ENT surgery.

He's currently still dancing around in his room, which means he's probably not going to be awake at 4 in the morning for the first time in weeks. He's going to want to sleep in tomorrow, of course, instead of leaving the house at 6 for 6:30 check-in.

Wish us luck. It's a relatively simple procedure that will only take a few minutes. It will, however, require him not to eat or drink anything in the morning (which is not going to make him happy either). It also will require general anesthesia.

Recovery is only a day or so. Hopefully he will heal quickly. And hopefully it will help with speech production in the long-term.

Snapshot Sunday ...

... the lost photos.

It doesn't happen often, but I forgot to upload photos from two different trips to the park in the last few weeks. And because I'm slightly OCD, when I uploaded them tonight, I changed the dates to put them in chronological order on the Flickr site. 

Yes, you can do that. 

And yes, I did.

The first trip I missed was on October 15, when I took the twins back to the big park across town on their last day of Fall Break (Connor was still in the mountains with Grandma and Grandpa). Those photos start here.

The second trip I missed was on October 23, when the whole family walked up to the neighborhood park. Those photos start here.

Tuesday, October 23, 2012

All About Connor

Time could move a little faster, if Connor were in charge. It would move right on up until Summer vacation and then stop. Forever. He might like a little pause for Halloween, his birthday and Christmas, but just for the holidays. Baseball season is okay, too, but just the weekends.

Do you see the pattern, that he would like to skip over any day that involves school?

Connor is very nearly eight. Just two more weeks and he will be celebrating his birthday. He is in the second grade, though he would prefer not to talk about school. He would prefer to sleep in every morning and stay up late every night. He definitely would prefer not to have any homework, especially the kind that involves either writing or reading. Though he will also be the first to tell you that he loves his second grade class, and that his teacher, Mr. A., is the coolest teacher at school. He gives out more "gotcha bucks" than anyone, and that goes a long way in Connor's world. You earn rewards based on your good deeds, and his teacher is generous in noticing their good deeds.

We are in between baseball seasons, so that makes Connor a little sad. He's happy to see his beloved xbox (once he's finished his homework and earned his screen time) again, but he misses baseball. He's looking forward to spring, and even talking about perhaps trying soccer next fall. We are talking about putting the twins in a special soccer league next spring, which is where I think this talk is coming from. We tried to get him to give soccer a chance this fall, but baseball won out. I have a feeling it will win out again next year, too, unless the twins' soccer experience really impresses him.

Speaking of xbox, Connor is a little bit obsessed with a game called Skylanders. Whoever designed the game is a genius, because there are all kinds of figurines you can buy to play different characters in the game (and I mean hundreds of characters). He already has eight, but Connor's current Christmas wish list contains no less than four new characters, not to mention the new "Giants" characters that just came out. So now there are two versions of each of the characters. Joy.

School is going well. Connor is not at the top of his class, but he's also no longer receiving additional instruction in math or reading. His math skills are actually pretty impressive, but his reading is still a slow process. He's always in a hurry, and tries to mumble his way through the words that he doesn't know. His teacher assured me this is typical behavior for a second grade boy. But it's also something we have to keep working on.

Connor has been on a lot of adventures so far this school year. He went with Grandma and Grandpa to the mountains over fall break. He even got to spend time with Uncle Brian and Cousins Austin and Kyndal, as they joined them in the mountains. Last Friday, he got to spend the afternoon with Grammy at the school fall festival and then dinner and a movie at the country club before spending the night with Grammy and Pappy. Aunt Kelly has also taken him to a movie or two and out for lunch. We love that he gets those moments, that one-on-one attention that is sometimes hard to come by in not only a family of five, but a family of five with two working parents and two special needs siblings. I feel like the grandparents and extended family give him back a little of the childhood that autism sometimes takes away from him.

Speaking of childhood, do you remember the guppies that Connor begged to bring home from school last year? Connor brought home five or six guppies and one snail from the classroom tank, and then babies came, making the total around nine or ten before several of them died off. Now he has one lone guppy and somehow 8 or 10 snails. His excitement over his fish tank didn't survive the summer, so don't expect more fish should this lone guppy decide she's had enough. Mommy is a little tired of having to remember to feed the fish every night.

One issue that we did battle this summer was Connor's skin. He inherited Mommy's incredibly dry skin, which was just bad luck for him. But it got even worse, and he had the honor of impressing his dermatologist with the worst case of sudden onset eczema that he had ever seen. It was so interesting that his doctor called several of his colleagues into the room to take a look. Connor had a few chlorine baths and a topical steroid treatment for a few weeks, and it appears to have cleared up. That's the good news. The bad news is he will likely have outbreaks all of his life, as there was no change or apparent cause.

Other than that, Connor has been doing well. He's your typical nearly eight-year-old. He's not a fan of school or reading, but his teacher tells me he works hard and does well once you actually get him out of bed and get him there. He loves to play baseball and run around on the playground at recess (we do not have a single pair of pants without holes in the knees, if you're wondering). He loves playing computer or xbox, particularly Skylanders. He likes going for rides on his big boy bike with Mommy or Daddy (and not with brothers, because they slow you down). He loves to go anywhere and everywhere (he is our have suitcase, will travel child). The world is one big adventure, and he's happy to go along for just about anything and everything.

All About Sawyer

The world can move as fast as it wants, but Sawyer is always going to move at his own time and his own pace. It's just one of the things I love about him.

It's hard to believe that Sawyer is in first grade and will be seven in just a few short months. He is getting so incredibly big (51 inches tall and 61 pounds as of this morning's doctor's visit). He is also making a lot of progress this year.

School is going well. He got to keep his amazing resource teacher Mrs. K , where he spends the majority of his day. His amazing aide Mrs. H usually helps him between classes and activities throughout the day. And he has a wonderful first grade teacher who has already gone above and beyond this school year.

Just a few weeks ago, we were invited into Sawyer's first grade classroom to talk to the other students about Sawyer. His resource teacher and I worked on a little PowerPoint presentation (mostly handled by her amazing student teacher Ms. A) and we talked to the class about ways that we are all alike and ways that we are all different. Mrs. K led the discussion, and then the kids were able to ask us questions. We talked about some of Sawyer's strengths and challenges in the classroom.

And the kids were really paying attention. I explained how Sawyer learns a lot of things visually, and how he often models exactly as other people do things. His "backwards" wave was a big hit, and now the class all greets him with an excited "backwards" wave every morning when he first comes into their classroom.

We actually just finished his annual IEP, and at his first grade teacher's request, have added some social goals involving his her and his first grade classmates. It's a wonderful, inclusive environment and we are excited for him to be there this year.

Sawyer's speech is still a slow process. He makes a lot of beginning sounds and some ending sounds, but struggles with blends and words. He has several word approximations, and uses those pretty consistently as long as they are within his expected routine.

In recent weeks, several team members have identified behaviors that are consistent with a diagnosis of apraxia, both of speech and also of motor planning. That confirms what we've always believed, that Sawyer knows and understands a lot of what you are saying to him, but he is having trouble producing a verbal response. As far as the motor planning, we thing he knows what he should do, but at times has trouble with the correct sequencing of activities as well as trouble getting his body to perform the actions that are in his mind.

Apraxia is like autism. It is a lifelong issue. We can work on therapies that will help him, but those areas will always be a struggle for him.

We actually had a consultation this morning with his ENT at the request of his speech pathologist, and he will be having a small outpatient surgery procedure in a few weeks that may help with speech production. There are technical terms for it, but it is essentially a procedure to cut the tendon under his tongue, which in his case is both incredibly short and also incredibly thick compared to most people. The procedure will only take a few minutes, though it will require anesthesia, and recovery is just a day or so. It's very minor, but I'm sure Sawyer will not be impressed.

Adding outside occupational therapy this summer has made a big difference for Sawyer. We are seeing improvements in focus, in some motor skills, and in problem-solving and multi-step directions. He enjoys the therapy sessions, especially when he gets to use the multiple swings in the big gym. The joint sessions with Xander have also increased his skill set tremendously. The modeling behavior makes the learning process so much easier for him. He quickly mastered a "pull" and scooter board activity that we had previously struggled with during independent sessions.

Sawyer's "moments" in the last few weeks and months are less defined than the ones Xander has been having. There is just an overall change. We think the gluten-free-casein-free (GFCF) diet has made a difference for both boys, and we especially see that in Sawyer.

Sawyer is so much more present than he has ever been. He watches the world around him, and he also engages the world around him, more than he's ever done before. Some of our occupational therapy sessions have been amazing in terms of eye contact, focus and joint attention. He frequently looks to his therapist after each action, wanting that approval and confirmation. That's huge for him.

Sawyer's ability to adapt to change and new places continues to improve. Just today we went to a new doctor's office (the ENT consultation) that was located inside the hospital. We had to park in the parking structure and go into a different building than we typically visit at this location. He did wonderfully, all the way through - walking to the new office, waiting in the waiting room, being examined by a doctor he hasn't seen in several years, and more waiting as I filled out paperwork for the surgery.

There are still struggles at times. Aggression can be an issue at times, especially if he's frustrated or if he's in a new situation. My arms are sometimes covered in bruises and blood from pinching. Using his Theraputty helps, but not always. Sometimes there are just too many sensory assaults to block out.

We also still struggle with sleep issues. He frequently has nights where he only sleeps five or six hours, or is awake at 3 a.m. for the rest of the day.

We have some food texture issues that seem to come and go. We struggle with meals, especially his school lunch, because of the limitations.

Despite the struggles, Sawyer is having a great year. He has a wonderful, supportive team in place to help him. And there is a tremendous amount of progress compared to the struggles.

It's so nice to see those brown eyes looking at you, anticipating actions and seeking approval and interaction.

Those eyes, that interaction, are priceless. Because I can still remember a time when he sat in a favorite corner of our old house, looking out the window and watching the leaves blow, but not looking at us or anything else around him. I can remember a time when he didn't respond to his name or pay attention to an airplane flying overhead. I still remember when he stopped waving hello and good-bye.

Lots and lots of progress. An amazing little boy who works incredibly hard and moves forward every single day.

We are so proud of him, and we love watching him on his journey.

All About Xander

Watch Me Go by here we wander
Watch Me Go, a photo by here we wander on Flickr.
Time seems to move much too quickly these days. It's hard to believe Xander is in first grade and nearly seven.

If time moves quickly, Xander moves even faster. He just never, ever stops. Every day at school, he still brings home more paperwork than the other two combined. He is always working to get to that next best thing, so he just moves through everything so quickly.

Xander has had a wonderful start to first grade. His amazing aide Mrs. S was the classroom aide in his kindergarten class, so he knew her well before the school year started. And she knew his routine from last year. They have made a great team so far. His teacher is the amazing Ms. M, who had Connor in her first grade class last year. She is organized and detailed and exactly what Xander needs in a teacher. And he also got to keep another familiar face, his wonderful resource teacher Mrs. B. He is doing so incredibly well with all of them.

Speech is also going well, both at school and with our outside therapist. At one of his recent sessions, he was at 100 percent for all of the goals we have been working toward - using directors (inside, outside, beside, behind, etc.), reading and answering a "wh" question, and following multi-step directions. He continues to amaze us with how quickly he learns new concepts and how quickly he learns new routines.

Adding outside occupational therapy this summer has been one of the best decisions we have ever made for the boys. We can already tell a huge, huge difference in both of them. Xander is working on self-regulation and core body, patience, and problem-solving. He loves going to this therapy, and seems to really need it after a few days away. He loves the obstacle course in the gym, and also the therapy toys and games that they use in the small gym. We have also been using some joint therapy, and Xander is serving as a model for Sawyer on some of the activities.

There are so many things that at one time would have deserved an entire blog post, but that seem to be slipping away in the busy that is our current routine.

Here are just a few of the moments about Xander in recent weeks and months ...

Xander mastered the big boy bike with training wheels. For the longest time, we couldn't get him to pedal the wheels. He had trouble holding his feet on the pedals and making the rotation. I think occupational therapy played a big part in his ability to problem solve and master this skill. Where he used to give up in frustration, he kept watching big brother on his even bigger boy bike and was determined to succeed. And succeed he did. Now we'll just have to work on the training wheels.

Another skill is the one you see in the photo. Xander LOVES the monkey bars. This started last school year with his aide Mrs. G, and continued this year with his aide Mrs. S. Between the two of them, who frequently acted as his support (or crutch, as it became), he mastered the school monkey bars. And then the ones at the other playgrounds. And finally, last week on fall break, he mastered the swinging monkey bars (handles on chains that move when you touch them). And he mastered it so well some of the bigger kids at the playground would stop to watch him in envy.

Xander still loves his iPad. He particularly loves it when I turn the camera on and he can snap endless photos and videos. That's by far his favorite thing to do, over all of the apps and movies and television shows that he could choose from. I have NO idea where he gets it from. Really.

His movie obsession has switched from Cars 2 to Bolt. We hear a lot of phrases from the movie, sometimes appropriate and sometimes not as much. My favorite will probably always be "saboteur," particularly when he was shouting it at his occupational therapist after she rearranged his obstacle course during a session. Appropriate and just downright funny.

A few weeks ago, Xander had the honor of reciting the pledge on the morning announcements at school. Guess who stuck his face directly in front of the camera lens and said "cheese" prior to starting. Yes, yes he did. And then he recited the pledge perfectly. So many people stopped to tell us how well he did and how adorable he was that morning. He can also recite the school pledge, which still gives Connor a little trouble. But don't mention that to big brother, because he takes offense that little brother can do something he can't.

Just this week, his aide Mrs. S was sharing with us how Xander has started to interact with others on the playground, wanting to join in on games of tag (a popular one on their playground) or a game of basketball. He has long mastered parallel play, but the interaction with peers is definitely a new development.

Xander is growing incredibly independent (and always feisty and determined). You hear a lot of "Xander do it!" these days. And most of the time, he really can do it. We love watching him take on more and more things on his own.

Speech is also developing. Instead of using just simple phrases, he's slowly learning that we will only accept full sentences. We're starting to work on pronouns with him, and we're always encouraging expanded speech. He's making huge strides in this area as well.

We are so proud of Xander. There are definitely times when he still struggles (like when routines are changed or when a concept is too abstract), but he is making tremendous progress. He is having a wonderful school year and has a great team in place.

Every day he comes home doing something new. It's so much fun to watch him right now, to be a part of his journey.

Monday, October 8, 2012

The New Normal

This weekend the boys and I tried something new. Homemade chocolate chip cookies. Now most of you who know me know that cookies are not really new at our house. I have a wonderful homemade chocolate chip recipe that I use for teacher appreciation gifts throughout the year.

But these cookies were new. They were the first batch of gluten free casein free (GFCF) chocolate chip cookies. Sort of homemade in that I had to stir the really stiff batter. But not so homemade I mixed all of those unusual (read hard to find and even more expensive to buy) flour types to replace regular wheat flour.

So, the first batch was this weekend. The cookie dough tasted awful, but the cookies weren't bad. Sawyer had five in one sitting, and would have kept on eating if you let him. Xander and Connor each settled for three.

Like so many things on this life, it's probably going to take a lot of trial and error. But you have to start somewhere.

We started with Bob's Red Mill gluten free chocolate chip cookie mix, added extra Enjoy Life chocolate chips and just a little vanilla extract, mixed with an Earth Balance butter stick and an egg.

Not like my regular homemade ones, but not bad.

Next time we might add more sugar. And more chocolate chips. You can never go wrong with more chocolate chips (even if they are five dollars for an incredibly small bag).

Just another day in the life ...

Thursday, October 4, 2012

The Highlight(s) of the Season

Team Love by here we wander
Team Love, a photo by here we wander on Flickr.
Last Sunday fall ball came to an end with a double-header. It was also one of the best days of the season for Connor.

First, there was this photo. The whole team is swarming Connor and congratulating him (mostly by slapping their hands on top of his white helmet, but also one team member trying to pick him up). You see, Connor got his very first in-the-park homerun. It was a solid line drive down the right field line. The right fielder (a girl, Connor is quick to point out) couldn't get close to it in time to knock it down. And it rolled all the way to the fence. And he ran all the way around the bases, sliding into home just as the ball came in. The catcher dropped it, and he ended up sliding through home and pushing the catcher and the ball out of the way.

Best. Day. Ever. Or so Connor told us.

And we were also pretty impressed with another first. Connor has been playing shortstop the last half of the season. And while he's pretty good at knocking balls down and keeping them in the infield, his ability to catch a fly ball has been pretty non-existent.

Until Sunday. A ball was hit just outside of the infield, between second base and center field. The kid ran back to it, continued backing up and extended his arm pretty far out to make an impressive catch.

Nothing like waiting until the end of the season for a few of those critical firsts. First homerun. First fly ball catch.

Connor wants to know how long until Spring again.

And the twins say it's a really, really long time, thank you very much.

The last group of baseball photos for the season are here.

Wednesday, October 3, 2012

Big Moments

One day. Two very big moments.

The first was Sawyer at OT this afternoon. We have been slowly working on an exercise the last few weeks that involves Sawyer using his hands to grip a "pull" and use his hand and arm strength to hold on while in motion. We have tried it in multiple ways - both while using the coveted swings and also the less-coveted scooter board. He generally lets go the minute he has to exert pressure to maintain that hand hold. The last few weeks we've been using modeling with Xander. The boys have separate therapists, but we have been meeting up at the end of the sessions in a single room. The exercise involves laying on your stomach on the scooter board and holding onto the pull with your hands and arms while the therapist drags you around the room (have I mentioned OT is actually a lot of fun?) Both boys work independently in these joint sessions, but we have Xander start each activity so that Sawyer can see what is expected. And it's been working very, very well. Last week Sawyer mostly watched. When it was his turn, he dropped the pull within a few seconds. This week he held on for the entire pull around the room. Not once, but on multiple attempts. He held on, using not just that all important hand grip but also his arms. Big, big step for him.

The second was Xander at home. He inherited Connor's old bike (the one with the training wheels) when Connor outgrew it and moved up to a bigger frame without training wheels. Up until today, he's only sat on the bike and used his feet to "walk" it around while steering with his hands. We have made numerous attempts to teach him how the pedals work. He would usually do it once, then drop his feet. Or worse, start trying to go backwards (which, of course, on this particular bike is the brakes). Today, after just a few minutes of help (don't tell my surgeon, but I may have bent over and used my hands to hold his feet on the pedals for the length of our yard). And that was all it took. From that point on, he was pedaling all on his own. Big, big step. We'll not worry about those training wheels just yet.

And yesterday was kind of a big moment, too. Our private speech therapist has been in the process of doing an updated evaluation of Sawyer's speech goals. Last week I picked him up from school and took him to an early session so she could work on some of the standardized evaluations (which our usual after school session is not particularly conducive to, since he's sometimes done after a full day at school). His scores had of course improved, but they are still far behind a typical six year old. And we've still been working on some other segments in our after-school session. A few people had thrown out the idea that in addition to autism, Sawyer might also have apraxia. And his scores on some of the evaluations seem to support the theory. We'll have to do a few more evaluations and also make an appointment with the twins' ENT in the coming weeks.

Okay, maybe it was two days and three moments. It's hard to keep track, they seem to happen so much lately. Life is busy right now, but it's also good ...