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!

Genetics Testing: What we learned today.

We learned so much today! First of all, we learned that when we think Brycen will be at his worst, he tends to usually be at his best. I'm thinking if I just wake up thinking this every day, we should have some perfect days from now on:)
We left bright and early this morning to travel to Cedar Rapids for our appointment with the Genetics Clinic. The Clinic is actually part of U of I, but the doctors travel to multiple locations across the state throughout the month. We initially looked into this back in June of last year and we were put on a waiting list for multiple locations. When we were moved closer to U of I in the fall, I called back to check on our status and report our address and number changes. At that time, they informed me they had an opening for today in Cedar Rapids which is about an hour and 15 minutes from us so of course I took it.
Neither of us really knew what the appointment would consist of though we did know obviously lab work would happen. The nurses and doctors were SO NICE!! We had always been impressed with U of I, but today it was really phenomenal how comfortable we felt. Of course, we reviewed the happenings of the pregnancy, birth, parent and siblings health, developmental level, etc. The doctors were so thorough with their questions and gave us every explanation we asked for. I can't even count how many times they stopped to ask us if we had any questions so far!! A physical exam was completed by both physicians which consisted of measuring various body parts like his ears and how his eyes are set, feeling for any abnormalities on his head and in his legs, arms, hands, and feet. An ultra-violet light was used to go over his skin for any abnormalities that cannot be seen by the naked eye. Then of course there was blood work, which was a little stressful but not too bad! Brycen squirmed, screamed, drooled, cried...as once they poked him, they couldn't find a vein and instead of wanting to poke him again, she just moved the needle around a little until she found one which took a few minutes. Once the blood started flowing, he calmed down and just watched it while still crying a little. He calmed down immediately once we got out of the chair, and wore his bandage with honor!
Results will be available in about a month and that will decide what the next step is. If nothing is found in "Tier 1" as they called it, we could move into "Tier 2." If a chromosome abnormality is found, then it depends on what it is for the next step. They gave us a few examples and said that the testing they do today was not even being done 5 years ago because research has come so far just in that time! We discussed possibility of future EEGs and MRI's, as well as ultrasounds for certain parts of the body for certain genetic conditions depending on the results. Of course, the risk of sedating Brycen for some of these "Tier 2" tests may not be worth it right now, so we will be deciding that when the time comes. The other part to accept is there is a good chance that they will find nothing genetic, and at that point we just ruled things out and will then realize it is an unknown trigger that caused him to regress.
I'll be sure to update you when we get the results and what the plan is. I just really want everybody to know how very brave Brycen was and how he tolerated so much of the exam sitting in the chair on his own. Only once during the entire exam did he attempt to leave the room...otherwise, he just took over the doctor's stethoscope and measuring tape and kept himself occupied with those. We are so proud of him and how strong he was through all of that! Nobody likes to be poked and prodded, undressed and looked completely over...much less a child that has difficult with personal space, touch, and lack of understanding why this is all going on. We love you Brycen!!

Brycen & Aubree: The Sibling Relationship

Aubree was just a newborn when Brycen began regressing 2 1/2 years ago, so this is all she has really known. Watching them grow up together has brought both tears of joy and tears of sadness. Joy because I can tell how much they really do love each other and the adoration in Aubree's eyes when she looks at Brycen. Sadness because it didn't take long before Brycen became very aggressive with Aubree and also when we watched as Aubree's development passed Brycen's level very fast.

I've spent a lot of time wondering how the future is going to unfold in their relationship. I recently talked about how I worry Aubree will feel pressured to take over her brother's care when we are too old to do so. I worry that we aren't being fair to Aubree by not having another sibling for her to develop that typical relationship with.

Many people have told me that their experience is the siblings are honored to take on the care of their disabled sibling and do not see it as a burden. Unfortunately, my experience working in residential services many years ago seemed to be the opposite for quite a few aging adults with disabilities. I really hope that we can set up Brycen and Aubree's relationship for success in this area, without pressure or any burden placed.

Over the last year, she has shown to be a very patient, flexible, and loving sister to her brother that doesn't always seem to care about her. She adapts to whatever "game" he is playing just so she can spend time with him. She shares quite nicely with him, talks to him like he completely understands her, and is very gentle with him. We can all learn something from watching her and her interaction with him. I am in awe of her on MOST days! I say that with emphasis because she is still a typical 2 yr old with her own tantrums and testing of boundaries:)

While pondering all of this over the last several months, I was overjoyed to watch two very special moments recently that has shown the power of the sibling bond between a child with a disability and a neurotypical child. We were getting ready to go to Wal-mart to meet up with G'ma & G'pa to shop a little and then to McDonalds for dinner and I had been telling Aubree all about it as McDonalds is a real treat in this house for them. While I was finishing up a couple work emails, I overheard Aubree talking to Brycen in the living room. They were sitting on the couch together and she was telling him a "social story." It's amazing how a 2 1/2 yr old can catch onto the things we regularly do with Brycen, as she told him we were going to meet G'ma & G'pa to go shopping and then Brycen would be a good boy and Aubree would be a good girl, and then they could get cheeseburgers and chicken nuggets at McDonalds. You can imagine the warmth that came over my heart watching and hearing this interaction. Of course, Brycen did not respond, but her attempt at explaining to him what we were going to do and what was expected was so protective and teaching.

The second moment I witnessed was when I brought Aubree home from daycare this morning. She was not signed up for daycare yesterday, so she missed her Valentine's Day party and brought all of her goodies home today. She was looking through them at the table while I prepared her lunch, and I overheard her say "this one for Aubree, this one for Brycen" over and over. When I walked back to the table, I saw she had made two piles of the candy! I asked her about the piles, and she told me "I share with Brycen." Once again, my heart just melted at her generosity and love for her brother. How many kids initiate splitting up suckers, chocolate, juice boxes, and skittles with their siblings??

I am so curious at how their relationship is going to unfold as the years go by. They are only 2 years apart and considering we are looking at wanting Brycen in kindergarten for 2 years, they may actually end up only a grade apart from each other in school. I can only imagine the wonderful moments will just multiply as Aubree becomes more and more protective of her brother and more involved in helping him succeed in life!

Brycen's latest happenings!

A few things to update from the last week or so...

1. Brycen is doing GREAT with his trial device! He knows how to navigate from page to page, how to clear the words, and how to turn it on/off. He uses it at home every day, has used it at a few speech therapy appointments, in the community a couple of times, and at school during Kindergarten round-up last week. I am also sending it to school with him this week as it is our last week of the trial and I think he is ready for it. The teacher and associates are just as enthusiastic about giving him a voice in place of the basic PECS cards he chooses from. I programmed in a few of their circle time activities so he can just push the button to tell them what "job" he wants for the day and what kind of milk he chooses for snack. Next Monday is his last day with the device and then we just sit & wait while people that don't even know Brycen make a decision on if this is the right device for him, will it benefit him in the long run, and will they pay for it. Very scary to think it's a possibility that it could be denied:(

2. We had a conference on Monday to discuss options for Kindergarten. It was agreed upon that Brycen will attend the every day/all day kindergarten class next year. While he cannot do all the things that the typical child going into kindergarten can do, he needs that consistency of all day/every day to make progress and keep his routine in place. His "score" on the kindergarten testing was actually a 22. When his teacher showed me the rating scale, the lowest category was 25 which was the bottom part of the 3 1/2 yr old level. While you would think this would upset me to see his score not even be on the chart, it actually reassured me that we know exactly where he is developmentally. 1 1/2 years ago at U of I, he was at a 16 month old level with communication...last summer at his first speech evaluation, he was at an 18 month old level...and now it seems like we may be getting closer to the 2 yr old level. While his actual speaking is not at this level, his other ways of communicating and understanding what is being asked of him is progressing him along. The discussion will continue over the next few months and through his IEP meeting in May about having a 1:1 associate with him. The feedback so far is that it is very important to do this to set him up for success!
In addition to all of this great news, we also learned that Brycen DOES qualify for Extended School Year! Last year, the old school district was very adamant that he had to show regression following an extended break from school before he could be approved...but this district says he meets other standards that qualify him. Mike and I hadn't even asked about this yet and were very surprised when his teacher pulled us aside in the hallway to let us know they discussed it. This is just one more thing that proves this school is very good at advocating and supporting special needs. He doesn't need to be in a secluded special needs school to get the support he deserves if he is here! We aren't sure of the dates yet, but I believe it is spread out over the summer over a few weeks. It'll be so beneficial to him to keep that "foot in the door" so to speak. As a parent, I will do anything in my power to prevent regression again. We've "been there, done that" when he was 2 years old, and when the district told us this last year, I was on a quest to get other services to keep him going (which is when we started speech and OT at the old hospital clinic). I don't care if that would have prevented him from qualifying then, but I would rather him be home all summer and me have to work my tail off to help him stay at his level, than to risk him going backwards again.

3. On a not so good note, Brycen did one thing yesterday that I have been dreading. When I had my back turned to him while putting on my shoes, he opened the front door on his own. We have been lucky in that his fine motor skills have not allowed him to do this before, but I guess he has now figured it out. As you recall, we recently started having him wear an identification bracelet for when times like this would come. He does not understand the lock on the knob yet, so we are safe for the time being as long as we remember to keep it locked. He is also very cautious about being away from us still, so hopefully that will be in our favor with this newfound skill. It's just really one of those moments that scared me and made me realize how important it is for us to be one-step ahead of his progress. I think we are doing pretty good so far and hoping we can continue to do that in the future as he gains more "skills."

4. Brycen has been consistently taking his new medication for the past 2 1/2 weeks. After some trial and error, we found we have to mix it with chocolate milk to hide the bitter taste. While we haven't noticed any improvements in his OCD behavior and anxiety, we have not noticed any side effects either. She did say it takes up to 4-6 weeks to see results and because he is on such a low dose, we have the ability to increase it too. We return to see her the first week of April to evaluate.

4. Here is the link to Brycen's team page for the Iowa Walk Now for Autism Speaks that takes place on Saturday, June 11 in West Des Moines. We have 23 walkers signed up already and would love to have even more come out and support him during this special day. We are also asking that everybody consider a donation to the team. No matter how big or small, every dollar counts towards research and support of those diagnosed. The statistics keep rising and it's very scary to see that...and we need all the help we can get to the bottom of this disorder! We NEED your help!
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=447324&lis=1&kntae447324=3DB34045D82E43CB8B00563398FA3B7A&team=4010797&tlteam=0

The Dreaded Haircut

Today was the day...I've been planning it all week as I had to gain momentum for myself to get through it. A few people have asked recently if the haircuts are getting any better. Yes and No is my answer. Yes because I know what to expect now, but No because Brycen knows what to expect also. While the area on his neck and around his ears is the worst, cutting the top of his head is actually not too bad. I just need to be on top of wiping any hair off of his face and skin or he gets very fussy and squirmy. His haircut today took 45 minutes to complete which is the norm. I did not have to hold him down at all though, but I did have to put a lot of pressure on his head while I was cutting around his neck and ears to help decrease the squirming. I think he actually likes this pressure because he doesn't resist it! Above is the before picture, and below is obviously the after picture. He was starting to cry when I took the before picture because I had all of the tools out where he could see them and he knew what was happening. Afterwards, it took a lot to get him to stand still long enough for a picture because all he wanted to do was jump and flap out all of the pent-up energy.

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!