Delivery for Mr. Brycen Timmer!!

The doorbell rang today just minutes after we arrived home from therapy and grocery shopping. Brycen ran to the window to look outside as I was opening the door to greet the UPS man. He informed me that he needed a signature for Mr. Brycen Timmer that was 21 years or older. I told him I wasn't even sure what was coming because the most recent things I ordered online shouldn't be here for a couple more days. He specifically told me it was probably alcohol as that is usually why someone has to be 21 to sign for a package like this...but as he was saying this, I noticed the small label on the top of the package and it said "Talk to Me Technologies" and I had instant butterflies in my stomach. I told him that this package was far better than any alcohol could ever be!
I ripped the box open and there was Brycen's beautiful, light blue, brand new communication device!!! I was in absolute shock as it has only been 5 weeks since we completed the trial period and sent the trial device back to the company. The last I had heard from the rep was when they called a couple weeks ago to find out what color we wanted the device to be, but I had no clue that the ordering process with insurance would go this fast! I immediately called our rep in Cedar Falls to make sure I wasn't imagining things and she confirmed that yes, it was approved and she was absolutely delighted that Brycen will have this now. She made reference to the programming we did on the trial device (which they saved and transferred to his new one!), the journaling on the trial period that we kept to show how he was using and progressing on the device, and how she felt we obviously wanted to do what we could for Brycen to give him this opportunity. To hear these compliments from someone that barely knows us made me feel so good!
So after I unpacked the device and showed it to Brycen, he immediately turned it on and "told" me he wanted to go play with trains (in his room). I had tears in my eyes as I realized he had not forgotten how to use the device! As most of you know, Brycen has had difficulty in the past remembering things that are taught to him and he tends to "lose" signs, single sounds/words, or even actions or tasks we teach him if it is not part of his regular routine. The fact that 5 weeks have gone by since he last used the device, and that he immediately used it today with no prompts just reiterated to me that this is what he needed. We contemplated this for so long and wondered what the right choice was for him, but now I know WITHOUT A DOUBT that we have made a very informed choice by choosing the Alt-Chat for him.
I'm so excited to see what the future holds with this and to share it with all of you in the coming weeks, months, and years...because it is ALL HIS!!

Light It Up Blue- April 1 & 2

In honor and support of all children/adults and their families that are fighting this battle, will you please "light it up blue" on April 1 and April 2? All you need to do is get one blue light bulb and place it in your porch or another outdoor light and turn it on both of these days. Something so simple will be so meaningful! You could even go the "extra mile" and wear blue on April 2 in support of World Autism Awareness Day:)

Here is our blue lightbulb...and I will be sure to take a picture of us lighting it up blue those days!

I would love if you could email me a picture of you lighting it up blue and I will add all of those on a future blog post to show everybody just how much support we have in our family and friends! Will you take this challenge and support awareness of how Autism is affecting so many people at such an alarming rate?

Here is a link to the page that explains all about this event: http://www.lightitupblue.org/

Genetics- Initial report

We received an envelope in the mail today from U of I and I was all excited to run inside and open it! So much crossed through my mind in those few moments: It's only been 2 weeks since the testing so could it really be results? If the results were positive for something, they would call and not send a letter, right? If the letter says all the tests came back with nothing genetic, then we are back to square one with finding the cause. Just open the darn envelope!

Once I started reading, I actually felt relief. It did not include any results, just the typed report from the exam he had, the review of the pregnancy and birth, the timeline of his regression, and the recommended tests they talked to us about. I just don't think I was ready to hear any news yet about the testing and that is why I felt relief. I'm not sure I can really explain it. If something comes back positive, then we may have a genetic cause which means that it could have been one of us that caused this to happen to Brycen. If it comes back with no cause found, then it will be hard to move on and accept that we may never know the reason for this to have happened to Brycen. Don't get me wrong...I've been trying to prepare myself for both, but I don't think this is anything that you can really prepare for. It's like the initial diagnosis...even though I KNEW he had Autism for months, I still walked into the children's clinic at U of I on August 31, 2009 with the hope that we would walk out of there with a child that was magically cured of all of his developmental delays. In all reality, I knew that wasn't going to happen (obviously it's not possible!), but that was exactly how I was feeling. Now we are approaching a different area of this road we are now traveling that is very similar to that day.

So, all in all, I did learn something new from this report. Remember when I previously mentioned that during Brycen's physical exam, they found a marker on his skin that could point to a serious medical condition that is not on the ASD spectrum, but has symptoms similar to those of Autism but also has a bunch of medical problems that accompany it. Anyway, we had discussed with the doctors that day about doing a kidney ultrasound and I thought they meant we would wait until after getting these results before going forward with that. The report actually says it is recommended to get that ultrasound now so if there are any abnormalities on the kidneys, testing can be further done for this disease (additional testing would require Brycen to be sedated). It also mentions that one marker is not exactly worrisome, but 3 skin markers is more definitive.

I guess this means I will be calling the doctor's office this week to get an ultrasound scheduled at the hospital for him. While an ultrasound is not invasive, it will not be the easiest with a child that does not like touch or different environments. Then we will wait for those results, as well as the Tier 1 of the chromosome testing by U of I, before we go any further or have anymore answers.

Ummm...a weekly update??

Things just seem very calm right now...please, please, please tell me this isn't the "calm before the storm." Brycen has just been...well, Brycen! There isn't really anything that has happened lately to warrant an entire post so this is just going to be a brief update on a few things.

First of all, I miss the communication device so much! We had to give it back on Monday after our 4 week trial. So far, so good...but I am crossing my fingers that we don't have to wait more than a couple months to get his permanent one.

Secondly, we have noticed some positive effects from the new medication (Fluoxetine 4mg 1x per day). We adjusted the time and he now takes it mixed with chocolate milk with supper. We have had no trouble with getting him to drink all of it for the last 4 weeks. The child. psych. had said it would take 4-6 weeks to be effective though it may need to be increased if we don't see much improvement in this time.

Well, we have noticed multiple things...as well as a couple family members have made comments about how well he accepted certain things last weekend. He did not get upset when his balloon from the hockey game popped on G'ma & G'pa's ceiling...nor did he get upset when 2 minutes later, his little sister's balloon also popped which meant no more balloons to play with. I have also noticed mornings are so much easier when leaving for school. Back in December and January, he would get so mad when I told him it was time to get his shoes and coat for school. Despite the crazy Iowa weather that once again has prevented him from having a full week of school for weeks, he now just immediately puts his toys down, gets his shoes and coat...and has not protested ONCE in the last couple of weeks!

Time-outs have never been effective with him. Trying to get him to sit still is pretty much impossible, and forget about trying to get him to understand the reasoning behind a time-out. We typically go by the philosophy of "remove him or remove the object" to discipline. Well, we reached a couple times lately where I just told him to go sit in the kitchen (he was poking his sister in the eye and pushed her) AND HE DID IT! Mike walked into the kitchen to see this in amazement...as I was too! He just seems to accept life a little bit more lately. Now I don't want anyone to think he doesn't still have his moments because of course he does...but these are just a couple things we have noticed are tremendously better compared to just a month ago.

The final thing I wanted to share is how absolutely amazing Brycen is with puzzles! He loves doing them...the same ones multiple times per day. It can keep him occupied as he is very content just doing it by himself in his own order. I would love to videotape the process someday and show it on here, but I'm sure I would get frustrated with a 7-8 minute video loading. Here are some regular photos of his "work" recently! The Thomas the Train puzzles he put together in these pictures are for ages 4-8...and he is only 4 1/2 and can put them together by himself and in a matter of minutes. It's very interesting to watch!