Catch a Glimpse of Brycen Communicating!

I am so excited to share with all of you how much Brycen likes his trial device! He uses it many times each day, whether it is to ask for a certain snack or to communicate what activity he wants to do. We have programmed some routines in there, and despite the fact he knows all the steps to his routines like getting ready for bed and leaving for school, the SLP said it is good to still have those things to use because it is a step towards functional communication. During his speech therapy this week, she explained to me that what we have programmed right now is a great first step (mostly choices he can make, basic commands, and routines), but that eventually we want to be programming things like "Good job" and "What should we do?" so that as we are saying these things to him, we are also pushing the button. It's very similar to sign language for those who have worked with this.

Anyway, Brycen has initiated using the device many times over the last week. He knows how to turn it on, how to clear the words, how to return to the home page, and of course how to access the pages for snacks/drinks/toys. He has used it at home, during therapy, while at the library with my parents, and today he used it at school. The requirements of the trial period is that he needs to use it in at least 3 different settings and we need to document a journal about how he is using it, any prompts he needs, progress made, etc. I believe this journal will then accompany the doctor and SLP's medical orders for the device to the insurance company. We need to obviously show them that this device is a need for him and that it will benefit him in many ways.

I have posted some pictures below of Brycen using the device tonight. I tried to capture as much as I could with still photos, but eventually I will attempt a short video so everyone can see it in "action."

The photo above is of Brycen pushing on the "drinks" button. He had started yelling and pointing to the kitchen, so I asked him to get his machine and "tell" me what he wants.

After the "drinks" page opened, he then pushed the button for "juice" and then proceeded to go into the "snacks" page to tell me he wanted "popcorn." If you look very close at the top of the device on the "drinks" page, you will see where it has written out "I want some juice." These are the words that the device is programmed to say outloud when he pushes the drink button. I choose and program each picture from the Boardmaker library that is loaded on the device, as well as I program the message it says also. There is also an option to load our own pictures onto the device through our computer which I'm sure we will take advantage of when we get his permanent device.

On the picture above here, I asked him to show me the "toys" and he had cleared the snack page and went to this page which has pictures of various toys we play with at home, as well as the red boxes on the right of the page are basic commands like "help", "more", "all done", and "please."

So, there it is! You now have a glimpse into this wonderful handheld machine that has captivated us and will be giving Brycen such an advantage in his communication. We only have the machine until the 21st and then it will be sent back to the consultant in Wisconsin and passed onto another family that is needing a trial. At that time, TalkToMe Technologies out of Cedar Falls will be gathering all of the necessary documents and sending them into insurance. Then we just wait to find out if they agree that this is the right device for Brycen. It could take months as it will first be ran through our private insurance, and then through Medicaid. But we are so willing to wait! If we have seen this much from Brycen in just a week, I can't even begin to imagine what we will see in the months after receiving his own device!

Preparing for Kindergarten!

The next several months will be spent slowly preparing for kindergarten! With Brycen unable to understand all the changes that will occur, it is necessary to span this out over several months and in several steps so that we are setting him up for success.
At his last conference a couple weeks ago, we began the discussion of needing a 1:1 aide with him all day in kindergarten. It really seems like this school is motivated to help Brycen as much as they can and the Education Consultant even said the words "we don't need to set him up to fail." We discussed that if we don't start things off right, that we may have to backtrack later and undo negative behaviors. We know that he will spend some time with the general education room and then also have a special education teacher to oversee his IEP and pull him out for specifics. He of course will continue with 1:1 speech therapy at school which is currently at 1 time per week, and we are hoping to add on OT at the school also next year (will need to redo an evaluation by AEA for that).
What really impresses us about this school is how much they prepare for these transitions! When we first moved here, they took the time to make up a binder of pictures of the classroom, teachers, entrance to the room, etc. On his first day, she already had a picture schedule on the wall and transition cards on a lancet around her neck. They didn't miss a beat with him transferring!
Once again, they are impressing us with the kindergarten preparation. He will be participating in kindergarten round-up next Friday from 9a-2p and they know it will be such a change for him, so they are assigning him a 1:1 for that day. He currently does not have an aide in the classroom, though there are two aides for other children. One of those aides is being pulled to be with Brycen so that he is familiar with them. They are also asking the kindergarten teacher he is assigned to for that day to come down and visit with him a couple times before that day. In addition to that, kindergarten means he will no longer be eating meals in the classroom and will be going through the lunchline and eating in the cafeteria. In attempts to help him with doing this next Friday (and for the future), today they started taking him down to the cafeteria for lunch. The teacher wrote me a note that said when they got to the door, he became fussy but the aide that was with him was able to get him to at least go in and get a tray. She said they will continue to work on this each day leading up to next Friday to hopefully improve each step.
I know eating in the cafeteria will be a huge change, as well as very stimulating to him with the noise, smells, distractions, etc. I am so proud that he was able to take that first step today! He is adjusting so well to changes lately and is showing us every day how hard he works. It seems like not too long ago all I could think about were the negatives in his behavior. When I read back to those first few months of blog entries, I can't believe the progress he has made and all of the opportunities we have taken on to help him. Just the last few months by themselves have been huge!!
Thanks again for your support and I'll be sure to update soon with pictures of Brycen and his trial communication device. He's already used it twice since coming home from school to show me what he wanted to do. I love the smile and excitement on his face when he hears it say the words back to him!

AMAZING!! Which means post #2 for the day!

This seems to happen so often...I will post an entry on the blog earlier in the day and then just a few hours later, Brycen will do something AMAZING that requires yet another post! Then, as I was signing in to write this AMAZING thing out, I realized that more AMAZING things happened yesterday and I completely forgot. How can I forget to tell people about these things??? Actually, I don't think I really forgot. My instinct with Brycen is that I don't want to "jump the gun" when Brycen does something new, since we never know if it will really stick or if it will be lost.

Today, I am going to forget all about that fear and share with you this AMAZING something! Then just for good measure, I'm going to add on the two other AMAZING things from yesterday.

Today:
As I was just typing an email for work, all of a sudden a green sippy cup presented itself in front of my face. I turned to that precious little face and asked him "What do you want?" He immediately did the sign for "I want" and then paused. I waited for about 10 seconds and just as I was about to open my mouth to ask him again...his sweet little voice said "ju?" Yes, with one indirect prompt/question to ask, he came up with a mix of sign/word to let me know what he wanted. He was so hesitant...despite knowing and having said this word for juice for over a year, but to put it together with the sign is absolutely AMAZING! Don't get me wrong, he has used his "I want" sign multiple times with "choo-choo" when he has wanted to watch a train video on TV or on the computer with prompts...but every single word he adds to the "I want" sign is a great accomplishment. Sometimes I wonder if we push him to use one certain phrase so much that he doesn't understand that the first part or last part can go with other words to make different phrases. Today, he obviously showed that he knows that!

Yesterday:
After speech therapy yesterday, his therapist was excited to tell me he used the sign and his word approximation "hup" (hup=help) THREE times with no prompts at all!!! While this is good news, she did point out that when he used the sign/word, he hadn't even tried himself to do the task. So it's a little bittersweet...he's using the sign/word in the right context and spontaneously, but he is relying on us to do stuff for him before he tries himself. Still good...no, GREAT news!

The second thing yesterday is this new phrase I have been working on with him at night when he goes to bed. I crave the day that he can say "I love you, Mom" to me. He doesn't even say "Mom", much less all of that together. So, I've been working on teaching him "I love you" every night with both words and actions. We've been doing this for a couple weeks now...and last night was the best yet! I said "I" while pointing to my chest, he then made a noise while pointing to his chest. I then said "love" while patting my heart, he said "uh" while patting his chest. Then I was about to say "you" and point to him when he said..."oooh" with NO PROMPTS! I guess he really has been paying attention each night when I go through it. That meant soooo much to me to hear all of those approximations and putting it all together like that. I immediately yelled downstairs to Mike to tell him what he did...but like in the past, it's always hesitation to share. Just in case!

So, that's it...another few things that may seem small but are really, really huge in Brycen's world. Brycen has really taught me to never take these things for granted...and I find myself even rejoicing in the things Aubree does that come so natural to her, but I know just how hard they can really be for a lot of children like Brycen.
Thanks again for reading and keeping up with Brycen and his accomplishments!!

Obsessions

Everybody knows about Brycen's obsession with trains...movies, books, toy trains, real trains, puzzles...anything and everything trains!

Recently Brycen has started two new obsessions. The first started about a month ago when he received a simple, wind-up race car from the school van driver for Christmas. Since that night, he has insisted on it sleeping in bed with him. When I first mentioned this, many people commented that their children sleep with an assortment of toys too (both typical and non-typical developing children). I didn't ponder it too much back then, but slowly he has been adding a few more things to his bed lately. He added in a toy airplane that we bought for him from the airport during a vacation that Mike and I took last year. Just this week he has now added in two little train pieces. Overall, he doesn't really play with them unless he wakes up in the middle of the night. Lucky for us, the batteries in the airplane have now died and I refuse to replace them and listen to the noises of a plane taking off at 2am or 5am. The race car itself is quite annoying too!

Anyway, so after some looking over a few child development websites, I realized that Brycen must be reaching the developmental age when children start to do this. Aubree started this several months ago shortly after she turned 2 (though she always liked to sleep with a little "blankie" as an infant). She insists on sleeping with 7-8 stuffed animals in her little toddler bed every night. When we pack her bag for overnights with the grandparents, I try to limit her to only a few. While this points out once again how far behind Brycen is in development, it's actually a relief to see that he is slowly progressing in these other areas. May seem like a small milestone to some to form an attachment to something like a favorite toy to sleep with, but this is huge for him...and for us!

The other new obsession he has is with the phone. When he was a baby/early toddler years, he did a lot of imitating with phones and pretending to talk on them. He was actually given 3 different play phones for one Christmas! Unfortunately, this pretend play is one of the many things he "lost" when he regressed. Since we moved in September, we have noticed this pretend play coming back in the form of pretending to talk on phones. A couple months ago, I also caught him holding one of Aubree's baby dolls and pretending to feed it a bottle. While these are the only things I have noticed that he will do with pretend play, once again it's a huge step for him to start regaining some of the skills he lost at regression. When we walked into the Child Psychiatrist's office the other day, he immediately walked over to her desk and picked up her phone. Luckily, she didn't mind at all! The last two times at the therapy clinic, he has tried to CLIMB the half wall to where the receptionist sits to get to her phone. He pulled his therapist over to the window yesterday and was able to grab the phone briefly. I had to give him my cell phone once outside to play with to keep him happy.

Both of these things probably seem so small...but with what we have experienced with him in the last two years, we realize just how important these little things are. Slow and steady will win the race!!