LIGHT IT UP BLUE!! April is Autism Awareness Month

"Light it up Blue" is the start of an entire month focused on Autism Awareness! Just a reminder that it would be great if everybody that supports Brycen could wear something blue tomorrow and on Saturday (April 1 & 2) in an attempt to spread awareness about this growing disorder. You know the statistics...you know they are rising...you know Autism affects so many areas in a person's life...you know there isn't a cure...so you also know that awareness is so important as this disorder is affecting someone you know as you read this. In addition to wearing blue, we would love for you to join us and take the extra step by putting a blue bulb in your porch light and leaving it on starting at 12:00am tonight until 12:00am on Sunday. 48 hours of shining blue in front of your home to show that you are aware and support those affected by Autism!

Here is a picture of Brycen in his blue and pointing to the blue porch light lit in his honor! Who will join us and honor his every day fight against Autism??

Brycen's TWO Little Secrets!

We believe this may be the most exciting post we have ever written on this blog! We have been teasing many of you for the last day with what Brycen recently showed us, but please know we were not doing it to be mean. We wanted to be absolutely sure that these were skills he learned and not a fluke. As many of you know, we have shared things in the past that he has done such as a word he said, to then find out a week later he will no longer say it. That's part of living with Brycen...you just never know! Before you scroll down and click on the videos, we want to give a little background on what Brycen's knowledge has been leading up to this point in these two areas. Brycen has been able to recognize his name for some time. He knows it is his name, he is just unable to verbalize it. We used to have a card with his name on it, then single flashcards with each letter, and he knew to match the flashcard to the right letter on the card with his name. When it comes to ABC's, Brycen has recognized a few letters (besides the ones in his name) for quite some time. He has been able to verbalize a handful of them and is able to point to almost all of them when we ask him to. (Note the video below is only 1/3 of the real video...for some reason Blogger was giving us a hard time with loading a video over 3 minutes so we had to edit it down. It still gives you the progress made! If you are a friend of ours on Facebook, we are attempting to load the video in it's entirety there as that is the only place I can load the entire thing). In addition to those things, Brycen has been working hard at school with the Handwriting Without Tears program and he has a lot of difficulty with tracing (fine motor skills are very far behind in the area of holding a pencil/crayon but this is being worked on in both school and OT each week). Up until this point, we just weren't sure what he was learning from this yet as they have been working on a new letter each week since he started at this school in October of last year. The speech therapists have also been working on single sounds of letters. Since Brycen has difficulty with many of the sounds and positioning his mouth and tongue correctly, this is definitely slow going. It is very important that he knows how to make the various sounds by themselves before we can expect much more out of him verbally. All of these things include so many steps to teaching him and we are so grateful for the help from the therapists and teachers to let us know what the next step is! We don't want to keep you any longer from the videos:) I'm not going to explain anything afterwards because we believe if you have been following along with Brycen and his progress/struggles over these last couple years, we don't have to explain in words how these two things are so very exciting to us. We sure hope you feel the same as we do! As always, feel free to comment or ask any questions if you are unsure of something you see or hear and we will gladly explain. We will especially enjoy the encouragement from all of you to share with Brycen. Let's make sure he knows how many people care for him and cheer him along!

Home Videos- June 2008 thru December 2008

I'm not sure what triggered it, but I felt an urge yesterday to pull out our home videos from these months. For those who have been following this blog for some time or are a close friend or family member, you know that I have struggled with this for almost 2 years now. We know this is the timeframe when Brycen went from a talking, making eye contact, enjoying interaction, appropriate play toddler to a 2 year old boy that somehow, someway fell inside of himself and could no longer do these things. I refrained from watching these home videos out of fear of so many things. I don't care what anyone says, NONE of this is easy!

So for whatever reason, I all of a sudden asked Mike where the videos were and found this one (Mike labeled them by months) to pop in. While we have not been the best about taking home videos lately of the kids, the time that Brycen regressed was right after Aubree was born and when that camera was pretty much permanently on to catch every first of her life. Blessing in disguise??? Maybe yes, maybe no. We watched the videos from the month before Aubree was born when Brycen was almost 2, until Christmas when Brycen was almost 2 1/2.

Thinking back, we were never able to pinpoint when all of these things started disappearing and when the different types of behavior began. Now that we have watched the video from these months, it is very clear when and how it played out.

Brycen's 2nd birthday, July 2008- no signs of Autism

• June, July and August 2008 seemed very typical; Brycen was babbling and saying many words and phrases (Goody, I see, Right there, baby, thank you, please, home run, etc), he responded immediately to his name when called, would look right into the camera, played with toys correctly, interacted, was pointing and gesturing, and followed directions with no problems.


• September 2008 is when we noticed he was not responding as much to his name during the videos, and also noticed not as much babbling/talking while the camera was on.


• October/November 2008 was when we noticed he did not like certain textures, was starting to shuffle his toys around on the floor, was not making eye contact with the camera, and there was pretty much no babbling heard.


• December 2008 all of the above but we also noticed his lack of attention with his Christmas gifts, not seeming aware of his surroundings, grunting, etc. When comparing the part of the video where he opened his birthday gifts in July 2008 when he ripped into them, was excited, had no problem with paying attention long enough to open multiple gifts and cards...and then at Christmas you don't see the twinkle in his eyes and he would try to open one side of a gift and then give up and drop it down until we tried it again with him.

Christmas 2008- has fully regressed

Now that you (and we) have realized the timeline of the videos, I want to point out that it was October/November 2008 when the doctor noticed some of these things not at his check up, but at Aubree's 4 month check up and referred us to AEA for further evaluation. Brycen began home services for speech delays in November 2008 and the word "Autism" was never mentioned to us for many months. It was not until April 2009 when we realized it was not delays and there were so many more behavioral tendencies that presented themselves. June 2009 was when he was tentatively diagnosed by a Nurse Practioner, and in August 2009 when he received his official dx from University of Iowa Clinics. Therefore, our son was considered neurotypical up to August 2008, regressed over September-December 2008, and finally received his diagnosis almost 1 year after his first signs of Autism.

I also want to mention that Brycen had not received any vaccinations since his 18 month well-child visit, so it was well over 6 months between his last vaccine and his first signs of regression. I have had many people ask me about this question, and I know for a fact that vaccines did not trigger my son's Autism. I am not going to get into my thoughts about vaccines and Autism, or the recent debates across the world about this, but want to make it clear that I do not believe this had anything to do with Brycen's dx. That doesn't mean that another person doesn't have a different story about their child.

All in all, I feel a sense of relief about the decision to watch these. It was scary...I had tears in my eyes multiple times...and Ifelt guilt for not seeing it as it was happening. But I can't change any of it now so I'm not going to dwell on that. What I am going to think about is how lucky we are to have made those videos and even if we never get closure/answer on why or how this happened to our baby boy, we know that we were given the chance to love and care for a very special little boy! We were chosen to learn how to accept others despite differences, to simplify our life, and to not take any of our children's development for granted...we were chosen to give Brycen the best life possible despite the circumstances...and I thank all of you that has been there for us through these struggles and supported us to get to this point of acceptance and moving on in life. Thank you!

We are off and running...please donate!!

Please click on the link below to be taken directly to Team Brycen's donation page for the Iowa Walk Now for Autism Speaks 2011! Our donations are starting to come in and we have less than 3 months to make our very important impact to this wonderful organization and all of the families they support. This is not to just support Brycen...but will support that classmate you had in high school, that little girl that lives down the street, the little boy in the grocery store, your best friend's child that is showing the initial signs...the point I am trying to make is that Autism is all around you and has been for many years. Please help stop this trend and make the numbers go backwards! With the research that Autism Speaks helps fund, this CAN and WILL happen!

http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=447324&lis=1&kntae447324=3DB34045D82E43CB8B00563398FA3B7A&team=4010797&tlteam=0

Brycen & his Froggy

Froggy has been in Brycen's life since he was born. He was a gift from his Aunt Brenda and has always had a place in Brycen's crib/bed for the past 4 1/2 years. Surprisingly, Froggy is in fabulous condition!

I've been using Froggy recently in our night-time ritual of teaching Brycen how to say/gesture "I love you." He has been giving Froggy kisses (huge step because until a few months ago, the blowing kisses had been lost) and hugging him each night. I then start by saying "I" pointing to my chest, and then Brycen points to his chest with no noises typically in imitation. Most of the time, Brycen will then take over and pat his chest for "love" while making a noise, and then points at me saying "ooo." In the beginning, I used Froggy as my model for pointing to his chest and so on. It took Brycen about 2 months, but now he will do all of this with the prompt of me saying "I" about 80% of the time.

If you have a child that can't say "I love you" then you know what a huge feat this is and how much it means! We take so much for granted in life and this (along with waiting for the day for him to say "mama" again) has been something I have been wanting for so long and was not sure when the time would come! I'm so happy the time is here:)

Now, back to Mr. Froggy! Every once in awhile, Brycen will become obsessive with Froggy and insist on bringing him downstairs to "play" and will then resort to just throwing him everywhere. This ends up with me taking Froggy away and Brycen becoming upset.

I was very surprised to find Brycen playing "appropriately" with Froggy this morning while I was doing stuff in the kitchen! I don't leave the kids alone together due to Brycen's aggressive tendencies (and Aubree's attempts to encourage his aggression), so I am rarely in the kitchen for more than a couple minutes and can see them through the dining room at all times. Anyway, here are a few shots I was able to take quickly before Brycen realized I was taking his picture of him playing with Froggy. It wasn't completely appropriate for his age range, but it was far better and more structured of play than his usual throwing him around!

I LOVE this last picture of him and Froggy walking! I'm not sure where this came from but it's definitely imaginative play and it was AMAZING to see!

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.