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!