The Brush

“Play is the work of Children. Through play, children learn about themselves and the world around them. When all that they see, hear, and feel makes sense to them, a process of sensory integration occurs” (Ayres)

It can be tough to watch your kiddo be so uncomfortable in their little world, but after a while, you quickly learn what triggers their meltdowns and what works and what does not work for them. I’m not saying this happens over night, or without a lot of professional help. We are lucky that Kaden has the opportunity to work with an Occupational Therapist who is very good at what he does, and continues to give our family tools to help Kaden .

I always dread talking to people about Kaden’s sensory issues because most people just look at me like I am crazy. It takes nothing short of a Kinesiology degree to understand this stuff, and I get that. It has been difficult for me to wrap my head around Kaden’s sensory challenges as well, but I don’t have a choice. I take the time to research and read, attempting to understand how I can help Kaden be most comfortable and grow in his world. We continue adding to Kaden’s sensory toolbox, and if there is a chance that something might help him, we are going to try it.

Last week Kaden’s Occupational Therapist introduced the Willbarger Protocol, aka the “brushing technique.” Simply, one uses a surgical brush to brush the child's extremities and back (using pressure), and then "compress" the joints. It's a ritualistic process, and is essentially a sort of massage, systematically stimulating Kaden’s senses. It is designed to de-sensitise the tactile sense and awaken the proprioceptive sense. It is to be done every two hours, and the idea is that it will help keep Kaden in a calm-alert state.

I know, I know…..it’s probably difficult to wrap your head around this brushing technique. The good news is that Kaden loves it and it is working so well for us, which is all that matters. Remembering to do it every two hours can be challenging, and if we forget Kaden quickly reminds us!

I am not going to attempt to go into great detail about the science behind why the brushing technique works, but I will share a link to a document that does an excellent job at explaining it in a way that is relatively easy to understand.

http://www.tailoredlearningtools-hosting.com/sensoryintegrationoverview.pdf

We are approaching week 3 with Kaden’s new speech therapist at the Swain Center and we could not be happier with the results. He is doing so well, a whole new world is opening up for him. Communication is power…and he is definitely getting this. He continues to amaze his speech therapist, and each session she tells us she can’t believe how smart he is.

He is really thriving on all of his therapy which is a good thing because starting this week he is up to 8 hours of ABA therapy, 1 hour of Occupational Therapy, 2 hours of Speech, and 1.5 hours of Sensory Integration Class. As soon as a therapist walks in the door, he immediately sits down on the floor and looks up at them. He is always ready to go!

This has not been an easy road, and it will continue to be challenging at times. It is a lot of work for all of us. Some of the biggest day to day things like staying on top of his diet, making sure he gets his supplements, juggling therapy appointments, and controlling his environment can seem exhausting at times. But every day we are celebrating a new milestone, and this makes it all worth it! Kaden’s progress is so exciting, and we see it every day in so many different ways!

Small Victories

The Oldaker world is a little crazy these days.

This chaos consists of therapy appointments, juggling schedules, ensuring Kaden is seeing the best therapists, trying to navigate our way through unfamiliar systems, starting to plan for the upcoming IEP transition meeting, daily diet modifications & research, and about a million other things. I’m not complaining, as I have learned to embrace this “organized chaos."

Through it all, it is easy to get overwhelmed and feel defeated at times. There are days I just want to sit and cry. Then there are days like yesterday, which remind me of the importance in all of this. These are the days that make me feel like we are conquering the world, and no matter how many insurance battles I have to fight, or systems I have to blindly find my way through, I am reminded of how amazing my little boy is! That feeling outweighs ALL of the other stuff that comes along with this new world we are living in, and it is days like yesterday that reassure me everything will be ok….Kaden will be ok.

He started with his new Speech Therapist this week. We switched because all of the other professionals working on “Team Kaden” really thought he should be doing PECS (Picture Exchange Communication System). A lot of Speech Therapists use this tool for non verbal children, however his was not. So, we switched to a Speech Therapist who does use PECS and she came highly recommended to us from several people. Basically, PECS is a way to communicate without words. Many say it is a bridge to verbal communication, but we have been told it will open up a whole new world for Kaden. As excited as we were to bring him to his 1^st appointment, it is always a little nerve racking. We all have to get to know each other, and that can create a little anxiety at first.

PECS in a nutshell: There is a binder full or little laminated pictures velcroed to the pages. He has to pick up the picture of what he wants, and hand it to you. During the learning process, the therapist has something he wants (such as a toy car). As soon as he grabs for it, she tells him “no, if you want it you need to hand me the picture of the car.” Then a visual prompter assists Kaden in getting the correct picture and handing it to the therapist. She then says “Oh you want the toy car, ok here you go.” At that point the therapist takes the picture of the toy car from Kaden and gives Kaden the car. Pretty straight forward.

Kaden’s first session went well. It was mostly the therapist trying to get to know Kaden and teaching Dave & I about PECS and how we will use them. She told us that they have to train Kaden how to use them, that this process can take a few weeks, and warned us that sometimes it is hard for the parents to watch because they really have to push him.

Throughout his first session she kept saying she couldn’t believe how smart Kaden is. She said she thought he was going to pick it up fast, but with Kaden it is always challenging to find motivators for him. So, she tried some different things and started to teach him, but only using a few different pictures.

He had his second session on Wednesday, and it was awesome! The Speech Therapist said that she has been doing this a long time, and Kaden is getting PECS faster than any kid she has seen yet! She said what he did in his first two sessions was equivalent to what her typical patient does in a month or two!

Not only is he picking it up, but he is LOVING it! He was laughing the whole time, just so excited that he has a new way to communicate! Our case worker has put in a purchase for a PECS book for us to use at home and we should have it sometime next week. We are very excited!

Kaden’s ABA therapy has been going great this week as well, he is really thriving in so many areas. Tomorrow is his Occupational Therapy and Mundi is going to try what is called the “brushing technique” in hopes that it will be something that will work for Kaden and helping him be in a calm alert more often. I am curious to see how it will work with Kaden, I have heard great things about it. That will be an entirely different blog post!!!

Have a wonderful rest of the week, I hope everyone will take the time to celebrate the victories life has to offer, no matter how large or small they may be!

What a Difference a Week Makes!

Last week was a rough week. Mostly for Kaden, but we all felt it. It started on Monday, he did not have a good OT session. He was all over the place, and Mundi was having a hard time getting him to be interested in anything other than pushing his lawn mower and all of his other "safe" escapes.

Kaden knew it was a bad day, as Mundi left Kaden gave him a look like "i'm sorry, I know today was not a good one" and he waived. It is always a bummer when he doesn't have a good day in therapy. It isn't fun for anyone....Kaden, the therapist, or us. His energy level continued to be all over the place and we felt him slipping into his own little world more and more as the day went on. I kept telling myself he is just having a bad day, after all he is human and he is 2!

The next morning, speech was even worse. There was mostly yelling and a lot of tears...which is extremely hard to listen to as a parent on the other side of the wall! He struggled all day just as he had the day before, only his energy was getting more and more intense. He did not want to nap, didn't sleep well that night, and finally I said to Dave, "ok, it's got to be something we are doing with his food to see this drastic of a change in such a short time."

There was only one explanation. Someone had told me that there is a digestive enzyme called "No-Fenol" that we could give him and it would allow him to have salicylates. I asked his nutritionist and she told me that they work SOMETIMES, but not on all kids all of the time. So, of course we tried it (against our nutritionist recommendation) with the high hopes that he would magically start being able to consume all of these fruits and veggies we have been avoiding. We got him to start taking all of his supplements in about 3 ounces of orange juice every morning. We felt like we conquered the world....we had FINALLY found a way to give him his supplements. We started this on a Friday, and Monday was his first bad day. By Wednesday we decided to take him off of the orange juice because that was the only salicylate we had added back in and it had to be the reason for his behaviors. Sure enough, we stopped giving him the orange juice and all of the sudden Kaden is in a calm-alert and Thursday had an amazing day at speech.

From Thursday on, things got better. We transferred Kaden into his toddler bed Thursday night, and he slept in it all night! He woke up at 6:30 and came and got in bed with us. Normally, he would wake up at 6:30 screaming in his crib until we got him. I can only imagine how much less stressful this is for my little man. He has slept the entire night in his bed ever since!

Thursday afternoon he had a great day at speech....one of his best so far! He was making new noises, and eye contact with his speech therapist like never before. Friday morning he was watching tv on the floor with Dave, rolled over and said "dad." We were so excited!

This morning I heard Dave down stairs with him, he would say "dad" and then Kaden would say it back to him. They must have went on like this back and forth for about 5 minutes, it was the coolest thing!!!

Within a week we are back to seeing progress, which is so exciting. It seems so crazy to me that the smallest amount of orange juice can make such a difference, but it really is the only explanation! His little body is just so sensitive, and it is becoming more and more clear that the salicylates have a huge impact on his behaviors and his ability to be in a calm-alert.

We will be facing some changes in the next couple of weeks as we iron out some kinks in Kaden's schedule and a add a couple of new therapists to "Team Kaden." We will be switching to a speech therapist from the Swain Center here in Santa Rosa, and in two weeks Kaden will get to start working with a new ABA behavioral therapist who we have been waiting patiently for. Lucky for us, we get to continue working with his same OT and he will continue to attend his sensory class at Early Learning Institute in Rohnert Park. All of the other changes are good ones, and we are excited!

We will keep you all posted, I hope everyone had a wonderful 4th of July weekend!