Zones of Arousal

This video talks about Sam's arousal zones.  Our goal is to know how to identify each of Sam's arousal zones and learn strategies we can use to de-escalate when necessary. This is very informative, so if you spend time with or take care of Sam, I would recommend watching this video.  This is an portion of the full OT education session, so if you watched the full video, you've already seen this section.  If you don't want to watch the full OT education session video, this is the most important part of that training.

Complete first OT education session.

This is the entire education session we had with Sam's OT.  This is a long video, but if you are really interested in learning about Sam as an individual, this is a good education session.

OT session from Dec 19th

We recorded portions of Sam's OT session last week.  This is a great look at what Sam does during OT.  We spend our time during this session in the "big gym" so you can see what the Star Center looks like too.

Strategies for Limit Setting.

Limit setting is important for all kiddos.  For Sam, limit setting can look a little different.  If Sam is in a  yellow, orange, or red arousal zone, limit setting is different.  In this video, Lindsay talks about ways to set limits with Sam.

What is Apraxia?

We have heard the word apraxia for over a year now.  There has never been a formal diagnosis until now, but it has been in our minds for a while.  Sam has childhood apraxia of speech.  We are still learning about this diagnosis, so we have a long way to go in understanding this challenge.
Here is what we know:

Childhood apraxia of speech (CAS) is a neurological motor speech disorder in which a child has difficulty rapidly, accurately, and consistently producing and timing the movement sequences needed to produce speech.  CAS is not due to having weak muscles for speech. There are several characteristics that are generally accepted to distinguish CAS from other types of speech delays and disorders.

1. Difficulty achieving, maintaining and moving between sounds i.e. saying "b" and then "p".
2. Difficulty with smooth movement transitions between sounds and syllables i.e. to say "up" Sam has to break it down - "u" - "p".
(Apraxia Fact Sheet).

Working with Sam is going to take a whole team of people, including his family, friends, and teachers.  To learn more about childhoood apraxia of speech, go to http://www.apraxia-kids.org/guides/family-start-guide/

Our first parent education session

We have had a busy week of therapies.  I am glad it is Friday!  We are going to have a relaxing weekend, hopefully, because next week is going to be crazy.  We fly home on Wednesday (Christmas Eve).  Jason is thinking that we need to be to the airport at least three hours early for the busy travel day.  That means we have to be to the airport by 7:00 a.m., so we have to leave the hotel by 6:00 a.m.  Ugh.  I hope that our flight is on time and that we can make a quick trip back to Texas.

We have to pack up all our stuff on Monday and Tuesday to get ready for our trip home.  We are leaving all our things in the Sequoia and parking it at the airport.  I wish we could leave all our stuff in the hotel room, but it's too expensive to pay for a room just to leave our stuff.  We are accumulating more and more while we are here.  Good thing we are not flying with all of this stuff!  We'd have to ship some of it home :-)

We had our first parent education session with the OT today.  Jason and I did not  know what to expect out of the session.  Overall, I think it went really well.  Lindsay took the comments I made to her over the last several sessions and structured the meeting to help plan and answer my questions. As a result of this meeting, we have a great working plan of how to set limits with Sam, how to read his arousal levels, and how to manage in each of the arousal zones.  My notes are chicken scratch, but I am going to make a reference chart that will help us to remember the strategies for each arousal level.

What are arousal levels?  Here is a chart that will show you a little more.

For people without sensory processing issues, much of the time we operate in the green zone, or optimal level of arousal.  As all of us have experienced at one time or another, out of the ordinary events that cause us to go into sensory overload where we feel overstimulated or unable to cope with the circumstances.  For people with sensory processing difficulties, ordinary every-day events can cause sensory overload.  It could be sounds, sights, smells, touches, etc that can lead to "over-reactions" that trigger the flight or fight response.  When Sam's level of arousal starts to increase, we need to be able to recognize the escalation so we can react in appropriate ways to help reduce his arousal.  Lindsay helped us come up with signs for Sam's levels of arousal (there are several levels of sensory overload) and how to communicate with Sam to manage those levels.  It's going to take a lot of work on our part of make this a part of our habitual parenting with Sam.  Hopefully we will see positive results and be encouraged!

Thanks for all your prayers and support!

I'm beginning to notice a few changes

Hi all. Thank you for reading our blog and following Sam's progress.  We really appreciate the kind emails and texts sending us well wishes and prayers.  Keep them coming! They are encouraging and help us to remember there is more to life than just therapies.

Sam is having an intense week with therapies.  I can tell that he is working hard during OT.  If a person were to casually observe the therapy session, it would look like Sam is just playing around.  But there is much more going on than just play.  Today he was sitting on the floor with his legs folded underneath him.  He was sitting in a "W" position, so his bum was sitting on the floor rather than on his legs.  Lindsay, the OT, moved Sam's legs to form the traditional parallel leg posture, and I could tell this was much harder for Sam.  He was still playing the game, but he had to use his core stomach muscles much more to sit up straight.  After a few minutes, he laid out on the floor and rested.  It wasn't a big change, but he had to work so much harder to keep the same position.

Speech is going well.  I wish we could have Carrie as our ST at home.  Today during therapy he said: bunny, help, stop, go, want, that, there, hop, sleep, momma, baby, ouch, pull and where.  The words aren't perfect, but I think Sam LOVES being able to communicate his thoughts and ideas more. Carrie picks up on so much of Sam's language that I miss.  She can understand Sam's words more than I can, and she has only been with Sam for four therapy sessions. I look forward to seeing what else comes of these speech sessions in the time we have together.  I am so glad that we decided to add the speech therapy into our treatments plan while we are here.

I spoke to Lindsay, the OT, today about some differences that I am noticing in Sam.  In the evenings, Sam wants to sit on the couch and watch TV.  If you know Sam the way I know him, this is VERY strange behavior. The only time he sits on the couch quietly and watches TV is when sick.  I took his temperature and watched him closely the last two nights, but he seems to be healthy.  When I brought this up with Lindsay, she said it was something that we needed to monitor closely.  Since the therapy sessions are hard work for Sam, we need to make sure we are not overdoing the workload and taxing his body and brain too much.  I will continue to watch him closely over the next few evenings.

Here is a picture of Sam during his nap yesterday.  We didn't get much sleep the night before, so he was very tired.  In fact, he had already been asleep for three hours when I took this picture.  I was trying to wake him up to go to his afternoon therapy appointment, and he was having none of it.  Finally I bribed him to get up by telling him he could take his blanket into the car on the way to therapy.  Poor guy was tired.

Thank you for your continued prayers.  We have one more week here in Denver before we head home for Christmas.  We will be back in Denver again on January 3 for more therapies.

Starting Week 2

Today was the start of our second week at the Star Center.  Jason flew home last night to work at his office and get caught up on things he's missed over the last week and a half.  Sam was very sad to see him leave.  We are keeping count of the days until "Dada" returns on our fingers.  Only four more days, Sam!
Since Jason left, Sam is feeling a little less comfortable.  Sleeping was a little harder last night and this morning was definitely a little less regulated.  These changes led to an eventful OT session today.  Overall, Sam is doing really well.  Kids were playing around him in the gym and he didn't seem to feel overly startled by their presence.  He did have a hard time focusing on tasks for very long and cried easily.  I learned a lot from watching Lindsay help Sam regulate his own emotions during those times of crying.  I have A LOT to learn about how I can help Sam.  I probably have as much to learn as Sam does.  It's quite overwhelming to think that I will have to help Sam regulate his emotions, especially on days when I don't feel all that regulated either.  Good thing it's a marathon and not a sprint.
After therapy today, we came back to the apartment and changed into our snow gear.  Sam absolutely loves the snow!  He even got on the snow pull toy and let me pull him around.  By the time we were done playing, we were both out of breath!  The snow seems to be melting quickly with the 40 degree and sunny days.  I am going to have one disappointed boy on my hands when we go outside to find the snow has melted.  Our January visit will probably be full of snow play.

Counting our Blessings!

We have been praying over this Star Center trip for months now.  We know this is where God wants us: both Jason and I were in agreement about coming to Denver from the very beginning.  God has been working for months now to help us prepare and learn through this trip.  Here is what we are seeing God do right now:

1. Sammy has warmed up to his therapists VERY quickly.  They are able to touch him without him becoming upset.  He lets Carrie, the speech therapist, touch his lips and cheeks any time she wants.  Sammy is typically very sensitive to others touching him (see the OT eval blog video), but both his therapists are able to work with him quite easily.

2. We have very good therapists.  Both Lindsay and Carrie seem very competent and skilled.  Both are not new to the Star Center method of treatment, so they are able to work within the STAR model very well.

3.  The weather has been nice.  Actually, it's been 20 degrees warmer than usual for this time of year.  I was kind of worried that the weather would be a challenge for driving, but so far so good.  It is snowing today, but it should not be a problem for driving this week. Jason would love for it to be colder, but I'm pleased with the warmer weather.

4.  Both Sam and I have had a slight cold this week, but we have been healthy so far.  We would hate for Sam to be sick and miss his valuable therapies or not feel well enough to benefit from the treatments.  We continue to pray for blessings of good health.

We are continuing to pray for God's hand and peace during our stay and return trip to Denver in January.  Here's how you can continue to pray:

1. Blessings on the therapy sessions.  Please pray that each therapy session will continue to be effective and helpful for Sammy.  Please pray that God's hand will help to impact Sammy's development in a lasting and beneficial way.

2. Travel mercies.  Jason will be returning to Temple this week. Please pray for safety for his trip to Temple and back to Denver on Thursday evening.

Thank you all for your love and support.

Pizza, Water, Repeat

Oh the pizza options!  Denver is very gluten-free friendly.  I could eat out for every meal and never have to eat the same thing twice.  I LOVE pizza, and GF pizza options are endless.  So, we have had pizza four times in the last week.  I may weigh 20 more pounds before this trip is over, but I am going to have my fill of pizza before I leave!

Denver is known as the "Mile High" city, and we are very familiar with the effects of the elevation.  We were told at the Star Center that we needed to double or triple our water intake to combat the effects of the elevation.  So, we have been drinking a TON of water.  In one week, we went through two 24 bottle cases of water.  In addition, we have used probably close to 15 gallons of distilled water in our two humidifiers to combat the dry air. With all the water we are drinking, we are still winded walking up to the third floor to our apartment.  I wish we could acclimate faster!

It's beginning to look a lot like Christmas!

It's snowing!  When we got up this morning (Sunday, Dec. 14), the snowflakes had just started to fall.  By 8:30 this morning, it was snowing in earnest.  We got dressed at about 9:00 and headed out to explore the snow.  We thought Sam would like to see the snow, but we didn't imagine he would have as much fun running, falling, and playing as he did.  We had to convince him to come back into the apartment to thaw out. We are planning on finding a sled to use this afternoon to slide down the hill outside the hotel.  We'll see if Sam likes to sled as much as he likes to play in the snow!

Trip to the Zoo

We went to the zoo on Saturday.  Sam was really excited about seeing the elephants.  It was a beautiful day to go to the zoo.  It was in the 50s and the zoo was practically empty.  We had fun seeing the animals, especially the elephants!

Speech Evaluation Update

We had our parent meeting to hear the information from the speech evaluation Wednesday evening.  We were thrilled to hear that Sammy's receptive skills (understanding of language) are right at age level!  There were also a few hard things to hear about the mountain Sammy will be climbing for many years to come to use expressive language.  I've made another video to talk about the highlights from our meeting.

Our home away from home

We are staying in an extended stay hotel here in Denver.  It has a kitchen, living area, and two bedrooms.  We brought a car full of stuff to make our stay here feel a little like home.  Here is a quick look at our "apartment."

Star Center Update - Here's what the first OT parent meeting told us

This is our first week at the Star Center with Sam.  The first two days were the evaluations from the occupational therapist and the speech therapist.  On Wednesday morning, December 10, we had our first parent meeting with the OT (occupational therapist) to talk to us about her findings from the Sensory Processing Disorder Evaluation.  I recorded what she told us for you to watch.