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!!

Outcome of Psychiatrist Appointment

We met with the Child Psychiatrist this morning to discuss options for medication for Brycen to help with his stimming, aggression, and obsessive behavior. It's been awhile since I've had someone ask so many questions about Brycen and his everyday behavior! Since so much of this behavior has been going on for a couple years, I find myself just going about my day around it. I don't think I even notice some things that he does until I am directly asked about it. I'm guessing this is part of that "acceptance" piece of the puzzle where we just have accepted that he has these "quirks" and we just go on as it's so normal to us now.
Anyway, she briefed us on the 3 different classifications of meds that treat 3 clusters of behaviors. After our discussion of his behavior, she concluded that she would like to treat the cluster of repetitive/anxiety behavior first. The other two clusters are aggression and Attention Disorders. While some medications help with all 3 or two of the clusters, some are very specific to a certain behavior and of course have a lot more side effects, especially with a child so young.
The decision was to start him on 4mg of Fluoxetine (Prozac) every morning. If side effects happen, she said it will be seen within the 6 hours after giving him the dose hence the reason we want him awake to spot the side effects. The main side effects that could happen but typically go away after a few days are headaches, stomach aches, etc. Since many studies have shown that people with Autism react very differently to some medications, she said if he becomes more irritable and anxious than he already is, then we will need to try something else. We are starting at a very low dose of course and there is room to go up if needed. He will continue to take the Children's Benadryl and Melatonin at night to help with sleep.
Tomorrow will be our first dose so I'll make sure to keep everybody updated on how these next few days are. Watching for side effects will be interesting as he doesn't really seem to feel most pain and of course has no way to tell us if he is feeling differently.

P.S. On another note...Brycen's trial Alt Chat device should be getting here next week!!! Once we try it out for a few weeks and send it back, we can start the process to order his own!

Brycen is now "identified"!

The medical ID bracelet came in the mail today! When I asked Brycen if he wanted to try on his new bracelet, he immediately put his arm out...yay!! He kept it on, admired it, tugged at it a little, and then soon forgot about it. He's been wearing it for a few hours now and it's only come off once, and I think it was not on purpose but that he accidentally pushed on the part of the buckle that releases it and it just fell off. He willingly let me put it back on which is very, very good! It doesn't hurt that I chose to get a sports band that has a train on it...with two back-up bands that have soccer balls and various trucks/cars.

I am so excited about his response as we were really unsure how he would feel with something on his arm. Here's a couple pictures of him wearing his new bracelet! So happy we have made this next step into making sure he is safe.

Communication and Therapy Updates

Brycen has been doing a great job of communicating more through his actions for what he wants! A good example today is that he wanted to watch a video during rest time and I got busy in the kitchen and forgot to start it for him after laying his sister down. In the past, he would get upset and just yell until I figured out what was wrong. Today, he nicely brought the DVD remote to me in the kitchen and when I asked him if he wanted to start his video, he said "sss" (his approximation for yes) right away and ran back into the living room! I was so proud of him and he was so smart with bringing me the remote to tell me what he wanted.
We've also noticed more signing during his therapy and at home, as well as increased sounds when he is trying to imitate a word. The speech therapist has noticed he is attempting to sign "help" while also saying "ep" and wanted me to check with the speech therapist at the school to see if they have been working more on this. He is so much more consistent with this than he was several months ago!
During Occupational Therapy, they have been attempting some very basic music therapy through head phones. He refused to wear the headphones before this and would typically throw them down. They decided to use his favorite toy in the room to help with this which is a mechanical Cookie Monster that opens it's mouth for Brycen to put a cookie in and then he closes it and says stuff like "yum, yum. Me like cookie." Brycen LOVES this! The speech therapist uses this toy to get him to ask for more cookies to feed Cookie Monster...and now they are using Cookie Monster to demonstrate to Brycen how to wear the head phones.
On the 3rd session of doing this earlier this week, Brycen grabbed the headphones off of Cookie's head and put them right onto his with no prompts!! Then they would take turns the rest of the time and it got to the point that Brycen wore the headphones for about 30-45 seconds! That is huge progress for him...and he didn't even seem to mind the music that was playing through them. I'm not quite sure what this music is supposed to do but I think it's supposed to help with desensitizing his ears since he is afraid of loud noises like alarms, hair dryers, and vacuum cleaners.
Anyway, that pretty much summarizes what we have been noticing the last few weeks with Brycen. Slow but steady wins the race!!!

Safety with Brycen

As I've shared before, I think Brycen is at risk for wandering away from us in the future. Right now he is very hesitant about his surroundings and tends to stay near us, but I know that day will come when he sees something he likes and will take off for it...maybe even without us knowing.
After talking to his Case Manager in October about Brycen's lack of awareness of safety issues and such, we decided on a safety goal for this year that will work on Brycen learning how to be safe in the community. This goal included us ordering a Medical ID bracelet for him and helping him get used to wearing it every day...just in case.
As I was googling these bracelets, I found some awesome sports bands that look very similar to a fun watch but just has a metal plate with the information on it instead of the clock. What was even better is I found one with trains on it! I know how Brycen is with wearing anything extra on his body so I had to find a way to make this appealing to him and we know anything train gets him very excited! I also ordered back-up bands with trucks and another soccer ball one in case he breaks the first one or just to change it up a little once in awhile. The metal plate just slides off of the train band and then onto the back-ups as needed.
I feel like we have made some fabulous strides these last few months in Brycen's care and needs. We are advancing towards looking into the future and keeping our heads held high as we fight this battle and help him as best as we can!