Looking Back at 2010 with Brycen...Looking Forward to 2011

I cannot believe that 2011 is already here tomorrow! So much has happened in 2010 with our family and so much of it is positive.

When we started 2010, we were still so unsure about what the next steps were with Brycen and his treatment. We were unsure about who was really supporting us and who we could count on. As the year progressed, we became much more confident in our decisions with him and our life in general.

We started speech and occupational therapy in a clinic separate from the services school has for him. We decided to face our fears of trying medication with him for sleeping at night. We also faced a huge fear of most parents of children on the spectrum by moving across the state to a new town, new home, new school, new therapists, etc. Even though the move was a choice made by Mike's job/bosses, I really think it was in Brycen's best interests in so many ways.

Since we have moved, we have NOT endured one of those extreme meltdowns that used to last an hour or longer where we had to hold him down to prevent him from harming himself or breaking things. Of course we have had some pretty good temper tantrums, but nothing to the extent that we know it can be.

Overall, I feel like we have so much more support from the new school, being closer to our family, and from the new store that Mike works at. We loved the therapists at both places, but I even feel more connected to the clinic here with all the "extras" they have been teaching us with Brycen such as the brushing therapy and the introduction of the Go-Talk device.

Our new doctor has been very supportive in helping us find a psychiatrist to see Brycen in January that travels to the area to prevent us from having to drive too far. We have the Genetics testing lined up for February with U of I. I just really feel like we have made so much more progress in understanding what our options are and what we are ready to try.

I also wanted to update everybody on the status of our decision for the communication device. We have been discussing devices for at least a year and were originally looking into much simpler devices than what we ended up choosing. The stress that I was having was not over the question of whether Brycen is ready for a more high-tech device than the Go-Talk or using just PECS...but over the decision on if I was choosing the best device for him that needs to last him at least 5 years due to funding purposes. Of course, every parent dreams that in 5 years their non-verbal child will be talking and communicating without the need for a device, but we also want to be realistic and we know that even if he is verbalizing more at that time, he will probably not be able to have functional communication and will still rely on a device for many years to come. The reality of all of this just hit me hard the other day and I apologize if it seemed to give the wrong idea to people. We KNOW Brycen's ready for a device...we know the limited funding we have available and how long it lasts...and we know that if we don't move forward, we risk more regression and only maintenance of his skills. We want to challenge him, but not overwhelm him. We don't want to just maintain his skills anymore. We want to see more progression if that possibility is there.

So many people have mentioned to me about staying positive about his outcome and to look at all the great things he can do. I'm trying to take all of that advice in and finally came to this conclusion: I'm sick of complaining about Brycen not being able to talk to me; I'm tired of wondering if we are doing all that we can for him; I'm frustrated with people thinking I am not positive about my son and his qualities. So instead of feeling sick, tired, and frustrated about the situation with the lack of communication, we are going to do something about it more than what we are already doing with the extra therapy outside of school. We can do this by getting a device for him that will let us be able to program it to a simple form like that Go-Talk, but also have capabilities to see him through independence with communication. Maybe he won't ever get to the point of using all of the features the device has...but I refuse to sit back and wonder for another year if we could have made more progress if we had just pushed him a little bit further.

Our final decision was the Alt-Chat as we loved how light it was, how easy to transport, how we can do the programming through our own PC and then load it to the device, the extra features it had, his reaction to the device when we showed it to him, etc. Once Mike and I came to this conclusion the other day, it was complete relief. Of course, we need to wait for the trial device to be sent to us which we can utilize for up to 4 weeks. Then we return the trial device with our "final" decision to the company and after getting an order from his doctor and from the speech therapist, as well as Medicaid approval, we then wait until his own device is sent to us. This could take a couple months so I am not anticipating starting this until at least March or April, but in the meantime, we will continue to expand on what we can with the Go-Talk at his therapy sessions.

We can only go forward. No more going back!! 2011, here we come!

Which one is right for Brycen???

I thought some decisions in the past were hard, but I think this is by far the most difficult decision we have ever had to make. While some people (including myself until recently) think all of this would probably be easy because all we want is for our son to be able to communicate with us, I am finding out it is so much more difficult than any other decision we have ever had to make for him!! Choosing to get him evaluated by an Autism team was easy, choosing to start speech and OT was easy, starting PECS was easy...ok, so none of this is really "easy" because it all comes with a lot of emotions, grieving, acceptance, educating, adjusting, etc. But all of these were just a given when it came to Brycen's diagnosis and since we live in small towns, we don't have options of various therapies so you take what you have available...and lucky for us that we have loved both of the places he has received his speech and OT.
Now we are making a decision that could either "make or break" his communication skills. The decision to start medications has been hard, but with medications, we can do more trial and error over time. With this device, the decision we make now has to be the right one for at least 5 years. It's almost like investing in a car or house...will it fit our needs, does it have enough room to grow with us, will it be durable and reliable...so many things to consider also with a device. We have to take into account things about Brycen that we aren't even sure about because he can't tell us! We commit ourselves to something that we think meets his needs and he can use, but what if we find out in a year that the other device's options seem to meet his needs better at that time?! We can't just trade it in and get a new one like you can a car or even a house!
We already made the decision several weeks go that we needed to go with a higher-tech device because of the "5 year rule" and we knew we wanted to meet with two different companies to view at least 2 different machines to make comparisons. Those were the easy decisions:)
I am getting so emotional and so stressed out over this decision...I keep crying when I think about the possibility of it not meeting his needs or of him getting frustrated with it to the point of causing him to regress. I don't even know who I can share these feelings with because I don't know how many people really and truly understand how much this is affecting me. Even the two reps we have talked to don't have "personal" experience with choosing one. Our speech therapist has been wonderful to be at both of these appointments, to do her research, to ask amazing questions that I would never have thought of by using her experience with other people/kids and devices. I'm crying just typing out this post because of how worried I am. Choosing something like this should make me feel excited and make me feel like I am opening up doors for Brycen that he doesn't have right now...so why do I feel like a failure as his mom when I am upset about it??
I do want to explain that both of these machines have wonderful capabilities to grow with Brycen! They each have pros and cons, they each are very visual for him, they each can be adapted somewhat to meet his needs and have some special features that we know would benefit him. The problem is that each person that needs a device is so unique and these companies do what they can to mesh that into one machine that could work for the majority of people. If I could take a few features of the first one and add that to a few features of the second one, then this decision wouldn't be so hard because I KNOW those are the features that would benefit Brycen now. But that's another problem I am having...what may benefit him now may not be the things that will work for him in a year or two! I have to take into account so many aspects of his life, the different situations he will use the device in, how easy is it for others like his teachers and my mom to use with him, will I get frustrated programming it (because if he sees me frustrated, then of course he will become frustrated), the fact he "sees" things in vertical not horizontal...so much to consider and of course there are those unanswered questions we have about what his next 5 years will be like and how much he will progress, so how much can grow with him! When I talked to Mike after the appt today, he immediately asked how did Brycen react to the machine today and that should help make the decision. I wish it was that easy...but unfortunately, Brycen was having an "off" day today. We noticed before even showing him the device that he was mellow, not verbalizing any sounds, didn't even run down the hallway like he always does when we head to the therapy room. The other time, he was happy, verbalizing a lot of sounds, using his few signs more, etc. On that day, he took over the machine and used it like he knew exactly what to do. Today, all he wanted to do was rub the smooth surface, push a few buttons, and then ignore it. I can't even let that help me make the decision since it was obvious his mood and abilities were completely different each day.
Just reading over this is making me cry again so I think it's time to finish this up. Below you will find links to both devices...unfortunately the links don't give you a real picture of how it can be used and what we will have programmed for Brycen, but at least you can see what I am contemplating. Thanks for "reading" me out! Again, I know this seems like it shouldn't take over so much of my emotions and thoughts right now, but this is a very, very difficult decision that pretty much affects Brycen's life for years and his ability to communicate. I just wish some there was some magical "sign" to tell me what is right for Brycen!

http://www.talktometechnologies.com/UserFiles/docs/Alt-Chat_brochure.pdf
http://www.dynavoxtech.com/products/maestro/features.aspx

Believing in Santa

How do you help a child with Autism believe in Santa? Aubree is starting to understand at 2 1/2 so we will start the whole Santa tradition next Christmas for her, but Brycen shows no concept of what we talk about. I know that visiting Santa at the mall will not probably be possible for him...he won't even go near family members and friends a lot of the time and he is deathly afraid of mask-like costumes!
I want to get a book over this next year to read to him (if he'll pay attention long enough), maybe enter a social story into his AAC device when we get it so it'll play out the Santa scenario for him, but since he is mostly non-verbal, how do I know if he gets it?
The other thing I worry about is that people with Autism are very literal thinkers, so I have read that they either start questioning everything about the Santa tradition very early on...or they are huge believers even until teenagers because they believe everything their parents tell them.
I want him to believe! The symptoms of Autism have already made him miss out on other childhood things and he's not even 5 yrs old yet! I don't want him missing out on this magical belief in Santa Claus! Those with experience and older children/adults on the spectrum, please help! Tell me your stories and I hope in a few years, I'll have a new story to tell by learning from yours!

Merry Christmas!!! Thank you for all of your support over this last year!
Much love to all,
Mike, Melissa, Brycen, and Aubree

Choosing an AAC Device for Brycen

We've had to change our plan with a device for Brycen since I last blogged about it due to the financial aspect of it. With Brycen's services, there is a hierarchy of who will pay for what and in what order. It is billed through our private insurance first, then put through to Medicaid, and then if Medicaid is at it's limit of paying for something, our Waiver services can help out if we have the money available in Brycen's name. It's very confusing so I'm not really going to do into detail on the specifics, but the summary of all of it is the device that we think is best for him right now will hopefully be too low-tech for him in a couple years and Medicaid puts limits on how often they will help pay for a device. We are still unsure if and how much our private ins. will pay because of the run-around I have gotten from them in the 3 calls I have made to them. So, despite my reservations about getting a higher-tech device for Brycen right now as I know how easily frustrated he is, as well as the short attention span he has, we really have no choice at this point. These devices can easily be thousands of dollars...so obviously far out of our personal financial reach so we have to rely on insurance to do what they can and just adapt to what they will pay for and how often.

Therefore, we are no longer getting the Go-Talk 9 that he is currently using in therapy sessions now and has responded so positively to. We had a meeting yesterday with a rep from Talk To Me Technologies and will have another meeting on Monday with a rep from the Dynavox company. They each carry different devices that are very similar, but we want to make sure we are considering all of our options since this obviously is not a simple decision. While I am absolutely ecstatic about taking this next step in helping Brycen with his communication skills, it is also frightening and stressful as I worry about making the wrong decision and I worry also about building too much hope into the device. Don't get me wrong...I know the research supports how much these devices can help in so many areas of the child's life, but being that there is no one right device or one right answer on how to help kids with ASD, I feel like I am reaching for something with a very fragile mindset.

Anyway, I wanted to share a link to the actual device we introduced Brycen to at the meeting yesterday.
http://www.talktometechnologies.com/UserFiles/docs/Alt-Chat_brochure.pdf
I loved it! My experience with devices has been with the basic low tech Go-Talks as well as the older style, big computer like devices over the years. It is amazing what they have recently came out with that you can really tailor to the child's specific needs and day-to-day things. The devices we are currently looking for need to last him at least 5 years, so we want it to be able to grow with him from pictures, to words, and be something he can use to do homework with. So if he is still having issues with verbal skills in a few years, we can sit at the table with him with the device, ask him a homework question, and he can spell out his answer!

Now, I'm sure you are all waiting for me to tell you how Brycen responded to it...and I'm sure the suspense is killing you because it really killed me for the last couple weeks since we set this appt up! It was so unbelieveable that I had to call Mike at work right after the appt, which I NEVER do! I usually just wait to fill him in on updates from Brycen's appts and school stuff when he comes home, but this was far too amazing to not share right away.

Brycen LOVED it! He actually came over and just grabbed it out of her hand when she was showing me things. He set it down on the table, and pushed a couple buttons to see what it would say. This is the same reaction to the Go-Talk that he had...like he needed to just feel it out first and see what it does by pushing all of the buttons. What I think really surprised him is when he would push a category button, a bunch more pictures magically appeared and he looked up with a smile like "this is pretty cool." Without any prompts or pointing to show him, he pushed on the "toys" button on his own, found a picture of a "ball" on the next screen, pushed it and heard "I want to play ball." He then smiled and went over to the ball to play with the SLP. He came back over a little while later while we were talking, grabbed the device again, found the toy button on his own again, and then pushed the "swing" button and the device said "I want to swing." So then he went over to the swing and did that for a little bit! Not only did he seem to be curious about the device, he figured out those steps without us even showing him just by looking at the pictures and trying it out! He also followed through with the choice he made which is something we have been working on with him.

Now the big news is we decided to try out the "I'm hungry" button and we programmed in two different snacks we had available for him to choose from. He did the same thing as before just by us pointing to the "i'm hungry" button first. After a few minutes of snack, he went back to the mainscreen on his own, found the toys again and communicated through the buttons that he wanted to swing again. Then after swinging, he came back, found the "I'm hungry" on his own and went to the snacks again.

I know this probably doesn't give you the best picture of how it all played out...but take it from me, that I was absolutely amazed at how interested he was in the machine and how he pretty much taught himself those two things! I, of course, had tears in my eyes! If we can accomplish all of that in one hour, imagine what the possibilities are once he has a machine to use every single day!

Brycen's Path to Communication

"Our patience will achieve more than our force." Edmond Burke

When Brycen turned 2 years old, he had about 40 single words and several 2 word phrases. He knew multiple signs and could communicate to us what he wanted by pointing or leading us to it if he didn't already have the words.

By the time Brycen turned 2 1/2 years old, he only had one word left "ball." Ironically, this was the first word he ever said when he was about 12 months old. Despite starting speech therapy a couple months before, he continued to lose. We didn't get it...how can a child all of a sudden lose all of these skills? Of course, there were more signs and symptoms that popped up over those months too.

Just before he turned 3 years old, he was diagnosed with Autistic Disorder, specifically regressive from a clinic. A month after he turned 3, he received his "official" diagnosis from the team at U of I Psychiatry Department. Along with Autistic Disorder, he was given a dx of mental retardation due to his cognitive skills being so low when tested.

Fast forward to almost 4 1/2 years old...after 1 1/2 years of special education preschool, 7 months of speech therapy outside of the school...and he really, really struggles in communication. To date, he has quite a few sounds and word approximations, has been retaught a few signs, but all of this typically needs to be prompted by us. Rarely, do we hear an approximation coming from his mouth on his own.

About a month ago, the SLP at the clinic here decided to focus more on a communication device during therapy appts. We were amazed at how fast he caught on! It was like he was just waiting for this device. The SLP warned us that sometimes it seems like a child with autism will "forget" their current signs and word approximations if too much focus is put on the device. So she wants to make sure to keep using all of it during appts and outside of therapy to ensure nothing is "lost" again.

3 times over the last week or so, the SLP has been so excited to share with me how much she thinks the Go-Talk is actually increasing his verbalization. She says she notices more sounds coming out, more trying, and more imitation when asked. His teacher has also written more notes over the last few weeks saying they are noticing more sounds/imitations also, as well as we have noticed it too. This itself was absolutely exciting and has paved the way to getting his own communication device soon!

The most recent excitement came yesterday though! If I wrote it all out in sentences, this post would probably double in length because of how much we heard from him...so I'll shorten it a little. For those faithful blog readers, they will definitely be able to understand how much progress this is from my past posts about his communication (or lack thereof).

• He said a word approximation for "grandpa" twice-once outside with grandpa and grandma, and then later in the evening when we were talking about grandma and grandpa going back to their house. NO PROMPTS!
• When G'ma & G'pa were leaving, Grandma mentioned getting a hug from him and he said "hu" with NO PROMPTS! This is actually one we have NEVER heard before!
• When they were walking out the door, they said "bye" to him like always. Uusally, we have to specifically ask him to look at them and tell him to say "bye," but he immediately responded saying "bye" to both of them, also looking at each of them with NO PROMPTS!
• During bathtime, he held the toy turtle up to me and pointed to it, making his sound that means to tell him what it is. When I said "turtle", he immediately verbalized "tl" with NO PROMPTS. This also has never been heard before.
• I asked him if the water was getting cold, and he responded by putting his hands on his arms and pretending to shiver (which he does off and on before this) and then also said "co" with NO PROMPTS!
• While tucking him into bed, I told him "night-night" like always, and he responded by saying "n-n" with NO PROMPTS!

So far today, I have heard word approximation for "OK" when I asked him to get down from the back of the couch (his most recent place he thinks he needs to sit), as well as saying "cu" which means "thank you" with NO PROMPTS when I gave him a cookie for snack. His sister did say it first, so it probably helped remind him to use his manners, but he needed no direct prompts from me!

This is amazing progress for him and I really do think our patience is paying off! Just like the quote above says, patience will definitely achieve more than forcing him to try. These are a couple days where something "clicked" in his head to help these things happen. We've had days like this in the past, but not with this many words/sounds in a short amount of time...and he always seems to "lose" what he briefly showed us that day. It seems like he hasn't lost the will to try though today and I can't wait to hear what else he says today!!

15 minutes after finishing this post: Well, the above video proves he's on a roll again today! I can tell he was really concentrating and though it takes him awhile to respond to a prompt from me, it came out so clear!!!

SAVE THE DATE! 2011 Iowa Walk Now for Autism Speaks

June 11, 2011: You will find our family in Des Moines at the Iowa Walk Now for Autism Speaks event!
Please join us by clicking on the link below and signing up as a walker. Please also consider a donation when you are able to. This is a great organization that funds much of the research you hear about lately!
We battle Autism every single day with Brycen, but this day is very important to our family to show our dedication to our "Autism family" and to be there showing that we continue to have hope in what the future brings for Brycen and all others affected by an ASD.

http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=447324&lis=1&kntae447324=5CC908D83DA04F6CAA99024490B70681&team=4010797

Emotional Tidal Wave

The last week has been very emotional for me. My paternal grandmother passed away and though it was "expected" and she is in a far better place now, it really makes one think about life and what you want from it.
Brycen did fabulous at the funeral home visitation and at the funeral itself. We were very uneasy with taking him as we never know how he will respond to various events, but I knew I had to have him there with me. I'm a little puzzled at how he could handle so many people at one time, the noise level, the new places, and the change in routine so well these two days, but other days he can be overwhelmed by just having two extra people in our home. One thing I have learned with Autism is that you just never know and won't until you try. I'm not saying the next time we have to attend a funeral will go as well, but all that matters is it went great this time and that really helped decrease my stress level. We just prepared him as much as we could with a bag of favorite toys and snacks, keeping him out of the busy areas, and going over many social stories on the way to each event.
The emotions of death in general came over me and just like most people at funerals, they begin to think about their own mortality and how it will affect their family. My grandparents had 8 children and all are still living and have their own families. There were many pews filled with the family in front and throughout the service, I kept looking around and wondering about how my kids will do at my funeral and if they will have families to surround them and help them through. It makes me sad to think that Brycen may not have that.
Before I go on, I want everyone to realize that I have kept these feelings in all week and it's taken a lot for me to decide to share these. At first I felt selfish for even thinking about my own mortality when I am grieving my grandmother. Then, I felt like it was best to just not think about any of it because I don't have control. My most recent feeling is that I am sure there are other parents of children with disabilities that also have these thoughts, and since this blog is supposed to be my way of sharing how certain things make me feel, I felt I needed to share this. I am writing all of this with trust that I won't be judged for these feelings and that this doesn't cause people to start commenting about how I just need to have hope and think positive. I do have hope...I have hope now that I never thought I would ever have when he was first diagnosed. But even with hope, a parent still has the right to wonder and worry about future events.
So, all in all...the emotions of not knowing if Brycen will have a family to hold his hand and comfort him through all of that is overwhelming. In Aubree's situation, the ability to have a family of her own is higher than Brycen's ability at this point. Yes, I know they are only 2 and 4 and so much can happen before those years are upon us. At this moment though, it worries me that the person holding Brycen's hand through that day will be a paid staff. Nothing against paid staff because I have been one for many, many years and the individuals that I worked with in the residential settings became like family to me. I know paid staff are a very important part of a disabled person's life...they help them take charge and conquer their obstacles, they give support to learn every day tasks, they are vital to a person who needs residential care. When I looked at the 8 families in those front pews, I also began to wonder if I was doing a disservice to Brycen and Aubree by not having more children. I know I have blogged before about how I feel like Aubree will have so much pressure as being the only sibling of Brycen as they grow up and maybe when they are older if she so chooses to be in line for guardianship and such. I know we aren't having more children and I know we are content with that decision, but I still wonder how that will affect the kids either when we are gone or when they are forced to make very serious medical decisions for us as we age.
Wow! I do have to say I feel much better after writing that all out. Though a couple other things are on my mind, those are much more personal to myself and to those people that they are about, and I will just leave it at that. I just want those that are choosing to be a part of Brycen's life and helping us through these ongoing emotions know that they are a vital part of us being a family and in Brycen's progress. Quite a few people have come a long way in trying to understand how our lives are different and to understand the obstacles that Brycen faces daily, and we are so grateful for this.

Working Through the Anxiety of the Holiday Season

The holidays are upon us...which means family get togethers, crowded shopping places, freezing weather, breaks from school, and so many other things.
While so many families look forward to this time, I don't exactly dread it, but I do have so much more to consider now. While pregnant with Brycen, I yearned to be able to show him off to extended family which is what we did those first couple years (of course when possible around our work schedules and moving a few hours away). I was proud of my adorable little boy...and of course I am still proud, but I know that "showing" him off is different now.
We have so much to consider with him over these couple months. He gets very overwhelmed with too many people, therefore we will probably never be able to go to my extended family get togethers again and I have to be careful about what stores and when I take him there because of the crowds and time to wait in line that occurs this time of year.
It's also a transition to get him to start wearing warmer clothes and because he is so active and sweats profusely, we can't dress him in sweaters and sweatshirts. He can't tell us when he is too cold, so we need to watch for other signs. This time of year is so common for illness and unfortunately he can't inform us when he doesn't feel well until it actually happens. I'm not even sure if he feels the same uncomfortable sick feelings we do.
The long breaks from school can really throw him off. Even just having the one extra day on a long weekend means he usually puts up a fight to get ready for school on the following Monday. His whole routine is interrupted with the holidays...more traveling, more people around him, different food, eating at different places, away from his toys and familiar environment. We have to take much of this into consideration when deciding whether to stay overnight at family homes anymore. Now that we only live an hour from our parent's homes, that makes this so much easier to just come home to stay the night.
Too many people and too much to do in one day can overwhelm him so much...therefore, we also do not want to plan family Christmas' on the same day. We need to them to be separated so that he can have a break from the pressure of all of it. To us, we love to eat a variety of good food, listen to holiday music, visit with family we don't see very often, open presents and see what each other gave and received...but to him, that is sensory overload.
I have attached a link to the Autism Speaks page that gives tips on how to prepare and get through the holidays.
http://www.autismspeaks.org/inthenews/holiday_tips.php
I don't ever want anyone to think that our lack of participation is because we don't want to be there, but these things are not worth the stress put on him. I do not let his Autism dictate many things such as what food is put in front of him or other things that I just can't think of right now. He is not on a special diet, therefore I expect him to eat the same food we do and what is put in front of him...and hope that someday he will understand to be grateful for that blessing of food.
But I do need to let the Autism dictate the above things because the repercussions that can come from the sensory overload is far too great to even want to imagine. We choose our battles with our children and this is one battle that I choose to try to prevent as much as possible...just hope all will understand the reasons behind our decisions.

What a scare!

It's been a rocky day in our house! As soon as Brycen woke up this morning, he just wasn't happy. He spotted the train t-shirt in his drawer and "insisted" on wearing it...it's short sleeve and it's absolutely freezing today. I gave up the battle after a couple minutes and figured it just wasn't that big of a deal. Then he wasn't happy with what I gave him for breakfast, but when I lifted him up to the cupboard to pick what he wanted he wouldn't point to anything else. Then when it was time to get shoes/coat on for school, he sat down on the floor and screamed. I tried his picture schedule which has worked well in the past when this has happened, but to no avail. He screamed and fought me the entire time while getting his shoes, coat, and hat on. Then he threw his backpack at me so I just turned and started walking out the door. After running after me, crying and screaming, he finally decided to put it on and get in the car.

12:20 rolls around and I am standing by the window waiting for the school van to pull up. I'm waiting and waiting... at 12:30, I start to get this horrible feeling in my stomach. I should back up here and let you know that I also heard police sirens around noon and though that is not a common thing in our small town, I didn't really think anything of it until Brycen was 10 minutes late coming home. I began fearing the worst...car accident. I didn't know what to do! Then the phone rang and it was my mom and before she even got the words out, I knew it was about Brycen. There was a bomb threat at his school and all the kids were bussed to churches nearby for evacuation while the school was searched and luckily the local news had said which church the elementary kids went to. So after calling the church to confirm, I loaded up Aubree in the car and waited in line for almost 15 minutes before I could get to him.
At this point, I'm sure all parents can empathize with the fear of not knowing where your child is and of course of the scare of a threat of harm to the school where your child is supposed to be safe. My fear went even deeper because I know how Brycen reacts to stressful situations, change in routine...and I also knew he recently developed a fear of school buses. About a year ago, his old school had practiced an evacuation drill like all are required to. That's all great and fine, but when dealing with special education students with sensory issues, you need to take precautions to make sure they are taken care of and not distressed anymore than necessary. Well, despite the teachers knowing how Brycen (and many with Autism) have a huge fear of loud noises...the backdoor of the bus that Brycen was getting into was left open so the loud siren-like noise was going off and of course, Brycen freaked out.
Fast forward to today...as soon as I heard they had bussed the kids to the churches, I knew there was a problem. Yes he did freak out when they put him on the bus and eventually was able to calm down once the bus started driving away. BUT he did ok...he got through and he seemed somewhat happy when I picked him up. A little nervous with the crowd of people, hiding his head, and making unhappy noises, but not too bad.
I guess I don't know what the point of this post really is and how it really pertains to his autism. I guess the fact that the situation could have been easier for him if past personnel had taken into account his sensory issues. Brycen has enough fears right now, and being that a school bus typically is part of a child's school years, it does upset me that they triggered a new fear in him that could have been prevented. Just like when someone suggested that I cut his hair in the bathtub. He loves taking baths, but hates getting his haircut. Why on earth would I want to put him through the trauma of a haircut in a place he enjoys?! I don't want him to start hating baths then. There is just so much to think about and be cautious with in children on the spectrum...and it never goes as planned, but at least we can try to make life's happenings as easy as possible.

Speech & OT update!

I absolutely love our new therapists over here! They've decided to approach Brycen's speech and OT together on the days he has school so as not to overwhelm him so much...they call it co-treat for these 1/2 hours.
Do you remember me sharing about a year or so ago that Brycen was having difficulty with understanding the PECS pictures? I was having to take my camera around and take pictures of all the places we typically go, his various toys, and clothing items, etc. He has come so far in this over the last year that all he uses now are PECS pictures and he actually can identify them the first time he sees them!
PECS pictures are what we will be using in our future Go Talk at home so it's necessary for him to understand them. Today at his therapy appt, he did great at using the device appropriately and was very enthusiastic to tell them "more" with the appropriate picture! He also responded well to transitions and they definitely kept him busy!
Here is a summary of what a co-treat session looks like as I'm sure many people that read this blog have never participated in speech or OT sessions:
First of all, they ask him to choose one activity on the Go-Talk. They typically have at least one of the 3 pictures as a non-preferred activity. He chose to "swing" today, so the OT therapist put him in the swing and went side to side, back to front. Every 30-45 seconds, they would stop and ask Brycen what he wanted. He would then push "swing" again...and the Speech therapist would then request him to push "more" first. If he doesn't do it, she then does hand-over-hand with him and offers praise over and over. They do this series multiple times. Then they push the "all done" button to let him know swinging is over. They ask him to go to the table where they show him new pictures and he chose "play-doh" today. The OT then worked with him on fine motor skills by putting little army guys in the play-doh for him to get out. Praise, praise for each one. Then they ask him what he wants to do next...and he pushed "play-doh" again, but the speech therapist encourages to push the "more" also. They do this multiple times. Then they go back to a different sensory activity which of course Brycen chose to swing again. After second time swinging, they went back to table and worked on making a turkey craft with him. This worked not only on his choice of colors, using scissors, or glue but also worked on him recognizing the PECS for these while the OT helped him with these fine motor skills. She focused a lot on his grip today with the colors.
I love these sessions because they keep him busy, follow a great sensory diet for the 1/2 hr of back and forth, not too much of one thing, but encouraging communication with the Go-Talk and also working on transitions. They give me such a great example of words to use with him, how to praise him, and how to keep him transitioning without becoming upset. I'm not sure how else I would learn these things if I didn't have the therapists to teach me how. So thankful that insurance will pay for these sessions!

Go-Talk

Brycen is doing great with the Go Talk communication device during speech therapy so the SLP agrees it's time to go ahead and order him one for at home!
For those that don't know much about communication devices, they can range from around a hundred dollars all the way up to over $10,000. It really just depends on the developmental level of the child/adult that needs one and the purpose of it. In Brycen's situation, we have discussed how easily distracted he is and how he gets frustrated very fast. Our goal with a device is to get him to make choices, communicate these choices, and to hopefully encourage single word (possibly stringing 2 words) verbalization. Therefore after reviewing many different products, the SLP and I agreed that the Go Talk 9 seems to be a good fit. I have attached a link below that will explain what it is and shows a picture of it.
The Go Talk is a low tech device that is usually considered a starter device and is very common with children around Brycen's age and level. My concern with anything simpler would be he would outgrow it too fast and we would be requesting for Medicaid to pay for another one in a year or so. My concern with anything more high-tech is that he gets too distracted with too many things in front of him.
When we first tried the Go Talk 9 at therapy, the only pages they had were 9 pictures to choose from. The first time they tried to work with him on it, he didn't want anything to do with it more than likely because it was just too much for him to grasp. The second week of therapy, they covered up a couple pictures so there was less to overwhelm him, and he did do better with that, but he thought it was just a game and wanted to push every button over and over and then would giggle. It had to be taken away from him at that point because we do not want him thinking this is a toy to play around with. He needs to learn the purpose of this device and only be allowed to use it for that purpose...it's the same way with all the other consistency we have in his life to ensure we are setting him up for success.
Once we actually get the device, we will only use 3 of the picture boxes and 2 of the smaller boxes but we know eventually we will need to give him more options so that is why we went with the 9 level over the smaller ones. This device will easily fit into the diaper bag when we leave the house and will be easy for him to turn on and off, as well as easy to reprogram as needed.
Our goal is for each page to have 3 options of activities, food choices, or maybe a 3 step schedule. The other two smaller boxes will have the pictures for "more" and "all done," to encourage him to string together two pictures. The SLP said he was able to string together the "more" and an activity picture multiple times on his own at the session on Monday after only showing him a few times! I'm excited to see what will happen once we are consistently using the device and what the progress will be!
http://www.attainmentcompany.com/product.php?productid=16147&cat=337&page=1

Imaginative Play

As most of you know, Brycen has major deficits in "imaginative play" just like the majority of children on the spectrum. The way he plays with toys is very methodical and stimulating to him and we have to be constantly teaching him to play appropriately with them. In addition to that, he does not have the skills to know how to play pretend, so when Aubree wants to play with her kitchen stuff and hands him a cup to pretend to drink...Brycen just throws that cup across the room. Same thing with baby dolls, dress up, stuffed animals, etc. He prefers to just line all of them up (see picture below) and stare at them with his head on the floor to ensure they are lined up according to his standards. Building with blocks is either building up or in a line...he doesn't understand that he could build a house or other object with them.

Recently, the teacher did share with me that he has frequently been picking up a play phone at school and saying something similar to "hello?" in imitation of the other kids. At home, he has also done this a couple times. A little progress!

So, you can imagine my surprise and joy when I walked towards the living room this morning and found him like this...
Yes, that is Brycen (sorry about the dark and blurry picture, but I only had moments to get this snapped without him noticing!) feeding one of Aubree's baby dolls! No prompts, nobody to imitate in the room....just Brycen all by himself holding a baby in one hand and a bottle in the other. AMAZING! Of course the moment was very short-lived and when I asked him about it a couple minutes later, he chose to pick up the baby and fling it across the room.

What a great glimpse into those little things he is slowly storing away in his brain but we just don't get to see that often!

One step, two step, three step and so on

Brycen has always been behind in his gross motor skills. He did not crawl until 12 1/2 months and did not walk until 17 1/2 months. When I addressed this with the doctor at his 1 yr well child visit, they did not have concern because at that time, he was meeting all of his other milestones. He was saying quite a few single words, stacking blocks, making eye contact, pulling himself up, eating finger foods, etc. The doctor specifically said that sometimes kids just don't crawl and if he reaches 18 months without walking, we would look at starting him in Physical Therapy. About 2 1/2 weeks before he was 18 months, he started walking and it was a joyous moment! I was 3-4 months pregnant with Aubree and I was fretting about having to carry a newborn and a toddler around when she was born if he didn't start by then.

Here we are, a few years later and he is still behind in gross motor skills. He does not run as fast as other 4 yr olds, and cannot turn a corner while running which I guess is something he is supposed to be able to do. He cannot pedal a big-wheel, has trouble with walking up and down stairs without holding onto something, as well as he is very slow at learning various obstacles at the playgrounds. The picture to the right was taken when he was about 3 and shows he needed and still needs a lot of guidance while trying to climb up certain areas of playgrounds.

But after explaining all of these areas we are still working on with him...I am so happy to share his accomplishment from yesterday! I watched as he tackled the 10 or so cement steps that led to the entrance to the therapy clinic. While going up stairs, he will either hold onto the railing or walk up them "Spiderman style" with balancing himself on his hands in front. If he is upright and holding on, he still brings his feet together on each step before putting one foot on the next one. I was absolutely amazed to see him be able to walk up those steps without holding on and without needing to use his hands for balance. It was slow...but it was FANTASTIC!! He was so proud of himself and stood at the top with a huge smile on his face. He knew what he did...and I know he has been working so hard on this!

Another moment that I will not take for granted!!

Wilbarger Brushing Technique

The new Occupational Therapist introduced the brushing technique to us last week and gave us instructions and a brush to take home and start using with Brycen. The goal of this technique is to help him with his sensory cravings, as well as to encourage restful sleep and eventually decrease aggression/help him work through agitation and frustration. I've been trying to find a good website to add to this post, but I just can't find one that I like that really explains the technique well enough. Wilbarger Brushing has been around for a long time and though it does not have science backing it up, many parents agree it has helped their child on the spectrum in so many ways.

My philosopy is it only takes a few minutes each time and doesn't cost us any money or require us to travel and put him out of his comfort zone, so why not?!

The technique uses a therapy brush with lightweight and soft bristles. This is the condensed version of what the technique is like: you start with firm pressure up and down one arm, move to the back up and down, and over to other arm. Then you move to each leg up and down, and then the bottoms of the feet. It is best to do on bare skin, but of course over the clothes is ok too if the child will accept it better that way. The protocol calls for doing it at least every 1 1/2-2 hours all day long.

At first, Brycen cried and threw the brush the first few times. Then he slowly would allow us to brush one small area (he actually wants to brush his head and stomach with it himself, though the technique says these areas are supposed to be off limits). After 5 days of doing it (I showed my mom how to use it over the weekend when we were gone), he now runs to us when we suggest getting the brush. He holds still and it seems like he is really craving it now. The drastic change from Thursday's reaction is phenomenal! I read that if the child doesn't respond like this within a week, then it's not the right therapy for them.

I have shared over and over how aggression is a huge issue with Brycen. In the long run, we would like him to be able to "tell" us he needs the brush when he is starting to have those feelings of frustration and anger, so we can help him work through those feelings before it goes to far. I have read that this technique decreases a lot of the tantrums that come along with classic/non-verbal children with autism. I have also read it takes A LOT of dedication to ensure the "sensory diet" is consistent day in and day out, which means everybody that cares for him has to be on board. My goal right now is to complete the technique once in the morning before school, have school do it about mid-morning, then shortly after he gets home during rest time, then again late afternoon, after dinner, and then again at bedtime. So far, so good and it was so great to go back to the OT yesterday and share his progress with her...and then to hear that he tolerated it so well for her during his session too!

Brycen's Goals for This Waiver Year

Since Brycen is on the ID Waiver, this qualifies him for an extra service called Supported Community Living (SCL). This is where we set goals up for the year, and staff work specifically on these with him during these shifts. SCL goals can only be implemented if the child shows deficits in areas that the typical child his/her age have mastered and cannot be oriented around things they learn in school. Therefore, this service is not designated as a "break" to the caregivers like respite is for. This service adds another person(s) in on teaching the child to accomplish certain skills. It's not just the staff that need to be working on these things to show progress, but the parents need to be dedicated also to working on the same exact things. My philosopy on this is: Consistency=progress...Inconsistency=waste of time and the state's money.

So, this year I have chosen to go about the SCL in a different way and through a different programming called Consumer Choice Option. I'm not going to go into detail with how this differs from an agency, but let's just say there are different options and CCO is the one we have chosen. My mom, Shirley, is going to be his SCL provider just like she is his respite provider. I firmly believe that parents should be picky about who their SCL provider will be because it obviously has to be someone that understands where the deficits are, is willing to learn how the child needs to be worked with, is dedicated to the consistency of the program, and of course has the best interest of the child at heart. My mom meets all of these areas, so she was the obvious decision now that we live closer to her.

Brycen really needs to work on many different areas to catch up with his peers, so it was really hard to focus on the areas we really wanted to see the most progress. Below are the 4 goal areas we are choosing to work on this year:

1. Brycen will make a choice with the aid of picture cards if needed (and hopefully a communication device soon!). Brycen will then follow through with his choices in an age appropriate manner with assistance from the staff (this includes taking turns, playing appropriately with toys, attention span, etc).
2. Brycen will have appropriate behavior in the community and will decrease the interventions needed by staff throughout the year.
3. Brycen will maintain his safety in the community by obtaining a form of ID (bracelet that will explain he is non-verbal and have contact information on it for us), will keep ID with him while in community, present his ID information when asked to with staff assistance, and identify people he can "ask" for help if needed while in the community. (This will probably be an ongoing goal to work towards, but you can never start this too early!).
4. Brycen will increase his independence with hygiene and dressing/undressing. He will wash his body/hair with first hand-over-hand assistance and decreasing to verbal prompts/modeling by the end of the year while bathing. He will complete 1 step of dressing (an article of clothing=one step) and then move onto Step 1 and Step 2, then so on as he accomplishes each. We will also be using picture cards to encourage him to pick out a shirt/pants/socks/pajamas by himself for each dressing.

As we were thinking about these goals and "testing" him in these areas, we noticed he has actually come a long way with the dressing and undressing. He is also willing to help more in the bathtub. We hope that as he can become more independent in certain areas, his frustration level will decrease and in return, the aggression will hopefully decrease. Right now, the aggression is our biggest concern and we think a lot of that stems from him not being able to communicate things and also his OCD behavior. If something isn't right, he thinks hitting will solve it or get his point across. As we increase his independence, this gives him more control over his environment and will hopefully teach him other ways to go about communicating things to us.

And there was....SLEEP!!

Yes, you read that correctly...entire nights of sleep have finally decided to visit our house!!

The script we got for Brycen did not work. It actually seemed to make it worse in some ways, so after a week and half of that, we decided to wean him off. Another Autism-mommy had suggested a combo of drowsy Benadryl and Melatonin which is what she uses for her young son for his sleep disturbances. At the same time, Brycen was battling a runny-nose, sneezing, coughing, feverish cold too, as well as his eczema has really started to pop up again so thought the Benadryl could possibly help with those things too.

It worked on the FIRST NIGHT...and has for 7 out of 8 nights since he has been taking it! The one night he woke up, he just came into the room and after Mike took him back to his bed, he was fast asleep within 15 minutes. For those who are just catching up on Brycen and his sleep, he has never slept this many nights in a row in his entire life...almost 4 1/2 years! While most babies begin to sleep consistently through the night at a few months old, we have never had that luxury with him. Though it was easier when he was younger as we could get him back to sleep in 1/2 to 1 hour then...as he got older, he would be awake up to 3 1/2 hours in the middle of the night. It only took a few nights of this when I realized my alarm going off in the morning was not near as annoying as it had always been.

The hope was that we would see a decrease in his aggression and an increase in his attention span with full nights of sleep, but unfortunately we have not noticed a difference in that. I am planning to still talk to the doctor about a day-time med to help in these areas, but as for sleep, we are just going to keep going like this. I have read that some children develop a tolerance to the sleepy side effects of the Benadryl, so I guess we will cross that bridge if it comes.

Until then, sleep on, Timmer household! We won't take this for granted!

Something that seems so simple...

I wish I could understand why some parents of children on the spectrum say they are never frustrated. Please enlighten me on what is so different...I know our children are affected in a variety of areas and at different degrees, but you can't tell me that you are able to stay patient through every single transition and every little thing that should be so simple.

So, here is my frustration for today...

We have been so lucky with Brycen being overall healthy. I don't want to jinx anything, but in almost 4 1/2 yrs, he has only had to battle one ear infection and one pink eye infection, a handful of colds, and a couple bouts with flu. Very, very lucky!
As soon as Brycen stepped out of the school van, I saw how flushed his face was but he frequently has a flushed face because of how active he is. Of course he was still excited to see me, ran into the house like normal, threw his coat on the floor, took off his shoes and put them by the door, and immediately ran to the window to look outside. The same old routine every day when he comes home. So when I bent down to give him a kiss, I could feel how warm he was.
Since some of you do not know Brycen very well, I feel I should explain that Brycen does not exhibit symptoms of not feeling well like other kids his age. He won't just lay around if not feeling well, obviously can't talk to us and tell us if there is something wrong, he continues his active and sensory-seeking things like every other day. When he had the flu last year, he was running around like normal, all of a sudden stopped to vomit (and cry because he of course did not understand what was happening and didn't want us near him to help him), and then went back to normal activities. This happened at least two more times that day, with NO WARNING each time.
So, back to today...common sense parenting tells me to take his temperature and give tylenol. Brycen was having no part in the ear thermometer and I know for a fact he would never allow me to put a thermometer in his mouth or under his arm. He ran from me, screamed, covered his ears and eyes...I attempted to demonstrate what it was and that it didn't hurt, but of course I knew it wouldn't matter. Luckily, he loves taking Tylenol so that wasn't a fight. I know we are going to need to invest in yet another type of thermometer (probably the kind that you just point at their forehead) so here is another example of money we have to put out there for items that are special to Brycen's needs. I don't even know the cost of these, but I will find out soon I guess.
Something that should be so simple just isn't for Brycen. A bloody nose and mouth on Monday afternoon after falling on the floor was another example from this week. He obviously hurt because he was crying, but wouldn't let us look at his nose or mouth, or hold a washcloth up to catch the blood. He wouldn't allow us to comfort him (probably the HARDEST thing we have ever had to encounter is our own child not wanting our love and comfort when he is upset!) so our only choice was to let him run around, wiping the blood on his shirt, and just following him to make sure it wasn't worse than it looked.
Each time we encounter a task that is so simple like switching to winter coats and a hat, we have to be patient to get through it...or like today and on Monday, we just step back and breathe, realizing it's just different.

It's just a whole lot of different.

The Mason Alert- Please read!

I am attaching a link to the Mason Alert petition. I cannot stress enough how important a system like this is...not just for children/adults with Autism, but all developmental and cognitive disabilities.
As parents of Brycen, we have seen firsthand how he has no comprehension of danger. We can talk it till we are blue in the face, but that will not make a difference to Brycen. While I don't believe Brycen has a fascination with water, I do know he has a fascination with trains and railroad tracks. We know that in the near future, we will be needing an alarm system on our doors and windows also to keep him safe. We already know there are few people in our life that understand the constant supervision he needs and this is why we are very, very picky on who we allow to babysit him. We have no choice but to be picky, because in one second he could disappear like this child did.
There were also situations about a month ago with two children in Iowa that drowned in ponds. The one I recall the best was in northern Iowa and the child was special needs and living with wonderful, stable foster parents. The child escaped from the home and a short time later, they found him in one of those decorative ponds in a neighbor's backyard...he was dead. I read about all of these laws going into effect that people are required to put a fence around their backyard pools, but even these ponds in yards with just a foot of water can be just as harmful to a child that can't comprehend the danger of water.
Please, please support this important alert! Yes it is going to take some tax money to put this in place, but I would rather have a few extra dollars taken out of my check every payperiod than continue to read devastating stories like this.

http://www.theautismnews.com/2010/09/07/the-mason-alert-petition/

A new Halloween tradition in the Timmer household

Halloween...crowds, going to strange houses, expectations to communicate with people, masks and other scary things...just not going to work for Brycen.
We had taken Brycen at the end of September to the store to pick out a costume (knowing Thomas the train is what he would be), but of course they had scary masks and such in the aisle that freaked him out right away and Mike had to take him back to the car before tantrum set in. Nevermind picking it out, I just found the Thomas one and paid the $25 for it (an outrageous amount to me for a costume for a child!). I wanted him to be happy and I knew it would be challenging to get him to wear anything different so figured it being Thomas was a great encouragement/bribery tool.
So, a few weeks ago I wanted to take the kids to the campground where my parents were that weekend to participate in their trick-or-treating. I figured I had my parents as back-up, our close friends were going to be there with their kids that Brycen knows, and he loves to be outside so what better environment. The day before, I "practiced" with him by giving both kids their candy bucket and breaking out the costumes. He was definitely giddy over Thomas, but it took a lot of convincing to get him to wear it (it just sits over the shoulders, not tight or anything). I felt so victorious in the fact he actually wore it for about 5 minutes! HUGE step!
So the next afternoon, we head to the campground and when I get the costume out, he of course wants NOTHING to do with it. UGH...I was so mad I spent all this money on something to have it just sit on the table. So, off we go down the road in just his clothes with me carrying the costume. It took a few campers before he realized this was kinda cool...and he kept peering into his bucket to check out his growing pile of candy. Candy is definitely a way to Brycen's heart! About 1/4 of the way around the circle, I slowly slipped the costume over one arm first and then eventually over his head. VICTORY! He was so worried about his candy that he didn't even notice!
Above you can see Brycen and his buddy, Aiden, walking together at the campground in their Thomas costumes!
So, then came the decision of do we pressure this again on Halloween night. We decided it wasn't worth it in this crazy town of Strawberry Point. It was chilly, there were very few houses on our street with their lights on, so we decided we would teach Brycen a different tradition on Halloween night. We decided to stock up on candy and show the kids how nice it is to be the ones to give it out, not always get the candy. They had a blast watching out the big window for trick-or-treaters and would yell all the way to the door. Brycen even put some candy in bags and said "bye" with prompts from me! The only time he refused to come near the door was when someone had a mask on, which of course makes sense.
Here's to a new tradition in our house that lets our kids participate in this holiday but still makes sure that Brycen is comfortable and not overwhelmed! An adaption to our life once again, but we are all for whatever makes our children happy and teaches them the simple act of giving!

Insurance and their control

I never in a million years guessed it would be this hard to start Brycen's speech and OT again after moving! I knew we had to complete a new evaluation here, but I guess I figured we could start immediately and he would be out of therapy two weeks at the most since we are transferring to the exact same services here.
Guess I was wrong! It's amazing how much insurance can rule your life in these instances. Yes, we have Medicaid as a back up for speech and OT, but the hospital won't act on that until it has been run through our primary insurance first. We are one of the lucky ones in that our private insurance covers a decent chunk of the first 20 appointments of the year for both types of therapy, and then Medicaid sees both therapies as a necessary treatment for Autism so they will then pick up the rest of the tab. There is no way we could afford to pay $125+ per hour of therapy that he needs out of pocket.
Anyway, so for the last three weeks, we have had to just sit back and wait for BCBS to "pre-authorize" a service that he was already receiving before at a different hospital. Transitioning Brycen to a new therapy place with new people is hard enough as it is (hence the interesting evaulation we had earlier in October where he gave the therapists a clear picture of the not-so-good days), but then to keep him out of it for over a month is just outrageous! If it wasn't for the fact he was in school right now and for us actually knowing how to encourage ways for him to get out his energy through a partial sensory diet or how to encourage sign language and choices, he could have definitely regressed in these areas in a month's time. This is just another reason why it is so important for parents to be actively involved in their child's therapy because you just never know who or what will have control over that time and how long it can be on hiatus.
So, the good news is the pre-auth came in the mail over the weekend and the new clinic called me today to set up his first OT and speech with them on Thursday. The bad news...starting a new routine with him and transitioning him to this is probably not going to be easy:(

What is your "passion" in life?

Everybody needs a passion in life. I never really knew what mine was until recently.

My true passion today is clear to me now...Autism. I cannot get enough of articles about research, reading other family's blogs and experiences with their children on the spectrum, or sharing our stories about the battles and joys of the disorder. I thought I knew a lot before Brycen was diagnosed, but none of it prepared me for the firsthand experience of raising a child with it. I'd worked with adults and children of various ages that were affected on various areas of the spectrum for many years. I had attended trainings and read books about the disorder. That was nothing compared to the passion I have for it now. I walk, talk, breathe, read, write Autism. It is and will be my life, just as I would expect any parent to feel the same about anything that affects their child or themselves.

What is your passion in life? Do you think it has changed as the years have went by or what has made it more clear to you? Is it something you chose or something that was "dropped in your lap" like Autism was in mine?

Finding Our Place in this World

I frequently think about Brycen's future and where he may be or what he may do. Everybody has a place in this world, but I think he may have a little bit of a harder time finding the right place for him. It's not going to be easy for him with all the quirks he has and the various obstacles he faces socializing. Hopefully, this world will keep learning to accept those quirks so that it can be just a little easier on him.

Sometimes, I also sit and wonder about where our place in this world is as a family and especially me as a mother to Brycen. I used to be very social, enjoy going out to see friends, and had no trouble meeting new people. That has changed a lot over the last two years. I have a very hard time meeting new people and finding my place in a group of friends, or among my coworkers, and carrying on a conversation. It just seems like everybody else is in different stages of life, either much further ahead of me in the child-rearing, or still in the single years and enjoying those moments. Those that I do feel the same age and same stage of child-rearing seem to still be in a different world from me most of the time. I'm not sure if this is all just because I am getting older and realizing I need to re-prioritize what comes first, or if some of Brycen's inability to socialize is rubbing off on me, or if it's an actually stage that parents of children with disabilities go through.

While I may have a lot in common with some of my aquaintenances that also have a child with a disability, it seems like I fall in my own category as the working mom. I never imagined myself as a stay-at-home mom and still don't, but I know it's not about me anymore and it's about what Brycen needs. I know I'm not a bad mom because I choose to work to help pay the bills (honestly, I have no clue how families can survive on one income these days with the increasing cost of EVERYTHING!), but I feel so guilty when I have so much on my to-do list and I can't always sit down and spend that quality time with my kids. After almost 2 years of doing the work-at-home thing, I still have yet to find a balance between work, the kids, and the housework. It's very stressful to decide to work on dishes, knowing the work emails are piling up or my work phone is ringing off the hook. I frequently doubt my choice to work...and then I will doubt if I would ever make it as a full time stay-at-home mom.

I guess the point to this whole post is...where is my place in this world? I don't really fit in with the other 30+ yr old working moms with young children, but I don't fit in with the 30+ stay-at-home mom's either. I don't fit in with the typical child group, not the single-parent group, and definitely not the ones that are living the single life. I try to connect with other moms of children on the spectrum, but even they seem in different places. Whether it is different stages of treatment they are using, or they may have more obstacles in their way than what we have in our family. Does anyone else feel this way or is it just me?

Aubree & Brycen

Despite the obvious challenges, we are hoping that Brycen and Aubree will have a very close relationship as they grow up. Right now, we are still battling the aggression Brycen takes out on Aubree...and Aubree so desperately just wants to play with him!

Aubree has reached the developmental level where she is always pretending...to cook, to change her baby's diaper, to read to us, etc. Brycen never really reached this stage before regression set in. We do find him every once in awhile picking up a play phone and jabbering on it and the school has also told us he will do this during free play. We have tried to teach him to play with pretend food by having Aubree give him a cup and we show him to take a drink, but all he wants to do is throw the cup. While we have accomplished him imitating various actions in other ways, we have not made any progress in the "pretend play."

Brycen uses his aggression to communicate as we know. Since he can't say or motion to get away from him, he will just push Aubree or headbutt her over and over until we intervene and tell her she needs to play with something else. For example, we went to the library and checked out 4 train books for him. Aubree of course likes trains too because she wants to participate in anything she can with her brother. All Aubree wanted to do this morning is sit beside him and look at the book while he flipped through the pages. He then reacts to her closeness by pushing her away. Despite saying over and over to him that Aubree just wants to look, not touch, he has an automatic reaction to do this. Now I don't want everybody to think that Aubree is this little princess that is always nice to him, because she knows how to bother him just like any sibling does. She frequently does take toys from him and then runs, which requires him to chase her and then knocks her down to get the toy back. To Aubree, she thinks it is a game...to Brycen, she is taking his toy away and he just wants it back.

As I type right now, they are playing their newest "game." Aubree has become quite fascinated with girly things like play jewelry she received last year for Christmas from her aunt & uncle, and the dress up shoes that her cousins, Emma & Samantha, gave her. Mike might not like me to share this, but Brycen also enjoys these items. They will bring pairs of the shoes over to me for me to put on their feet and parade around the house while putting on bracelets and necklaces. I know this REALLY doesn't bother Mike like it might some other fathers of their little boys because we are just so happy they are playing "together" and both are happy. Aubree is getting the attention she wants from Brycen, and Brycen is getting probably some sensory input from walking around in the heeled dress-up shoes and is also walking around in the same pattern around the house which is part of his routine and OCD behavior.

Now, we have noticed Aubree has transitioned to the older sibling role recently. I have shared where she will tell Brycen it's time to eat and to sit down while watching a video. She now has expressed herself by telling him "no" when he bangs his silverware on the table just like we do, or to "share" when he won't let her near a toy of his. She will also say "No push, Bryce" when he pushes her and "be nice" when he hits her. I am so glad that she is standing up for herself and it's obvious she is imitating the exact phrases we say to him during these times. It's just very wierd to see your 2 yr old start to "parent" your 4 yr old when it should really be the opposite. Aubree has already shown such a great personality for caring. No matter how many times she is hit, pushed, kicked, or headbutted...she has always forgiven her brother and she will frequently say "I lus Bryce" which means "I love Brycen." She wants to hug and kiss him all the time and I hope this part of her never changes because she is also in for a roller coaster ride these coming years.

Should have known...

No sleep progress after the first 3 nights. He has woken up all 3 and even though we are still on the lower dosage, my hope is dwindling that this might not be our "miracle" sleeping drug.
I should have known that Brycen probably wouldn't react the way I was hoping. When has he in the past? When I expect the worst behavior, he demostrates the best...when I expect the day to go well is when we have one of the worst days ever. This kid just doesn't follow the norm. So many parents have raved about how this medication was so great for their child from the first night they took it, that I really had my hopes high that after so many months to a year of contemplating this decision, that we would finally be able to sleep. Don't get me wrong...I know all parents go through the infant stage of lack of sleep and many children still wake up during the night into their preschool years. The difference is that Brycen doesn't just wake up...he stays awake usually for 2-3 hours at a time. While he is awake, we are forced to stay awake also for fear of his safety. I went from being a very heavy sleeper before kids, to waking to no sound of my child just standing by my head.
We are absolutely exhausted. We take turns each night when he wakes, we try to go to sleep right after he does not knowing what that night will include, but there is not much more we can do in this situation but wait and see. I absolutely hate that term too..."wait and see"...the exact same thing many people implied to me after Brycen's initial diagnosis. Well, I don't have the patience to wait and see. Sleep deprivation for years has taken a huge toll on us. Napping is not possible unless both of us are home on Sundays, our one day each week that we are together (and some weeks, we don't even have that day). Brycen needs constant supervision and attention and all we do is run around all day long after him, ensuring his safety, working on appropriate play, etc. Then when we don't get a decent night of sleep, our body doesn't have time to recover for the next 16 hours of caring for him. We all miss our sleep in this house...so please, please, please cross your fingers that the higher dosage works or we are back to square one!

Here we go...

The doctors appointment to discuss medications is done and a script has been called into the pharmacy to be picked up tomorrow for the sleep medication. Lots of discussion with a very thorough and very understanding physician was so appreciated while making a big step!

She does seem to agree that more & consistent sleep for him may make his days and evenings easier on us and on him. She was very careful to get dosage correct, go over any side effects with me, answer all of my questions, as well as already review the next steps with me. It was so nice to have undivided and unrushed attention to make sure we are doing this right. She reassured me and wanted my understanding that she may want to call U of I along the way if she has questions herself (especially about starting a behavioral med soon). I like the upfront attitude she had, the way she interacted with Brycen, and the obvious care she has for her position as a doctor. Despite having to wait 1/2 hr for the start of the appt, I walked out of there far less stressed than when I first started contemplating the start of medication.

Which comes to the subject of that big decision. Brycen has been very, very healthy overall. He has only been on two rounds of antibiotics in the last 4 years and with the exception of those first few weeks of his life when battling the severe case of jaundice and having visiting nurses at the house, he has only had to go to the doctor two other times besides his well-child visits (for the two infections listed above: ear and pink-eye). We are very lucky in this aspect!

On the other hand, since I am not used to giving him medications, I think that I have put more thought into this decision than some parents. He's 4 now and the typical 4 yr old can typically tell their parents how they feel and through visual cues, the parents can tell if a side effect is happening. Since research has shown that medications affect children with Autism very differently than the typical child, it is soooo important for us to be vigilant in watching him. Brycen does not feel the same pain another child feels, so if he has a headache, he may not react by holding his head and he obviously can't tell us something hurts. He is kind of unstable on his feet already, so how will we know if he has a dizzy reaction. He already doesn't sleep well, so that is not something that will give us the hint. He tends to drool already (has low muscle tone in his mouth/jaw), doesn't make eye contact well, is aggressive, hyperactive, etc...these are all various side effects of many medications.

I think the worrisome part for me is not the actual giving of the meds...but the side effects it could cause and how most of the meds he may ever take have not even been studied in children with Autism. It's just overwhelming to think of how big of a decision this really is...and to have the support of the doctor's office that is right down the street is helping so much!

We discussed how starting these medications and trying to decrease some of his symptoms may actually help him in so many ways, and how we are never going to know unless we try. We can't cure him from the Autism, but we have a chance to help alleviate the obvious effects it has on his brain and body, so it's the obvious next step for us that is available without a waiting list and without having to travel hundreds of miles away from home and our jobs to try other therapies that may or may not work.

New town, new house, new school...calls for a whole new routine

The last two weeks have been absolutely crazy! We pride ourselves in keeping a predictable routine for Brycen as we know he relies on this to thrive and be comfortable in his surroundings.

Those who know him know how he can get stuck in a routine and if one little thing happens, it can be disaster for the next several days. Those who know him also know that he can surprise us with adapting to change when we least expect it.

Mike and I worked hard at unpacking the entire house (except for some select boxes of wall hangings and such) from the time the truck delivered on that Wednesday morning and I drove the almost 4 hours from SL to Strawberry Pt, until Thursday afternoon when the kids arrived with my parents. It was non-stop work...exhausting! We knew if we were going to have any luck at Brycen adjusting, we had to make him comfortable from the beginning which meant he could not see the new house without his belongings set up and ready for him.

We also knew he would be adjusting to a new school, new teachers, new town, new therapists and hospital, around him at the same time. All of this change would be hard for any child, any adult...and here we are, forcing so much on him at one time.

I am so happy to share with everybody that Brycen has exceeded our expectations in adjusting to everything! There was a bit of a rough start to school with him being very attached when we did an initial visit that Friday morning, and with him crying when I left him there the following Monday morning...but that was it. He eagerly gets his backpack and shoes when I tell him in the morning, walks into the school with a smile, and waves/says "bye" to me with prompts when I leave. He also rode the school van home today with NO PROTESTING! Our goal is for him to be able to ride to and from school every day. The van driver did tell me he became a little upset when she turned off the main road to drop off another little girl first...but he did calm down when she reassured him he goes home next. Amazing how only a week of going back and forth to school and he knows the direct route to our house!!

Not only has this adjustment went well, he has also proved to us that he can fall asleep on his own. We knew we did not want to carry him up the stairs to his room after rocking him every night, so we decided to put the rocking chair in his room just in case. We did rock the first night we were here, and he protested the rocking in his room at first. He is so used to rocking while I am watching TV and he kept trying to get down and wanted to leave his room. I decided I was not going through the fight every night and would just have to figure out a new routine at night for him. So the following two nights when Mike was at work closing the store, I vowed to myself that I would make him lay in bed to fall asleep no matter how upset he got or how guilty I felt. He surprised me in not protesting laying in bed at all by himself. The first two nights were very busy and time-consuming, as I would tell him I would be right back and leave the room for a minute. I gradually worked up to about 10 minutes and he fell asleep! I think I went in and out about 8 times the first night...and only about 5 times the second night. Now, over a week later, he is still doing this every single night and now we only have to go in 2-3 times before he falls asleep!

Now, as I type, we are preparing for his first appointment at the Manchester hospital for his speech and Occupational therapy this afternoon at 2. I'm going with no expectations, knowing he has proved me wrong lately in that he can fall asleep on his own and he can ride the van home from school with no problems. I know there could be protesting to a new environment and new people he will work with...but if this is the only negative reaction we see to all of this change, it reassures me that he and we have made a whole lot of progress in the last year in this area!

Top 10- Trying to find some humor!

I read this "Top 10" after another "Autism mom" posted it on Facebook today. Now, this is made to be funny...though there is definitely some truth to all of it. This just really made me laugh today! If I had read this a year ago, I probably would not have laughed and taken it much more seriously, but being that time has definitely helped me put more into perspective with a child on the spectrum, I could read this today in a whole different manner.

So here it is (taken from the Autism Support Network website and written by Lisa Jo Rudy)...

http://www.autismsupportnetwork.com/news/top-10-snappy-answers-annoying-comments-about-autism-29003923

Thank you, Beth, for sharing with all of us! I know we have never met (maybe someday we will!), but it means so much to me to have others out there that are in the same/similar position right now with this battle to lean on and get encouragement from!

Our decision to add medications to Brycen's therapy plan

We knew this day would come...the day we realized we don't have a choice but to start medications for Brycen. It's terrifying to know that you will be putting a different thing in your child's body! But we have also come to the realization that we may be hindering Brycen's progress by not using medication to help with some of his symptoms.

While medication does not cure Autism, it can help to treat some of the symptoms. Brycen's main symptoms that we will be addressing with medication are the sleeping at night (or should I say, not sleeping!), the aggression, lack of attention span, OCD behavior, and impulsiveness. While all kids experience many of these things, the extent of Brycen's symptoms in these areas is huge.

Brycen's aggression is getting worse and what we are doing to address it is not helping, so we need to look at this avenue before he really does harm to Aubree or another child at his school. The last thing I want to hear is that a child is scared of him and they went home to tell their parents that Brycen is hitting them every day. That is not fair to those children, nor is it to Brycen. Since Brycen has very little attention span for many things, this makes it very difficult to teach him new things or work on daily skills such as getting dressed, taking turns, listening to an entire book, etc. We are hoping if we can increase his attention span, that we will have more luck with teaching him new things and his focus will be better on learning. We are also thinking if we can minimize his stimming behavior, we can bring out some more language. It seems his flapping, scratching, lining up toys is interfering into so many daily things, including his ability to work on speech and sign language.

We have set up an appointment at the medical clinic here to have them evaluate Brycen and see if they feel comfortable working with us on starting these. I really feel it would be easier if a local doctor will help since if there is an interaction or side effect, it can be addressed right away without us having to make a trip or navigate the phone calls to U of I.

The thing that scares me about medications with him, is studies have shown that children with Autism sometimes have very odd side effects of the medication. While a medication that is prescribed to calm someone down may work in a neurotypical child and adult, it may do the opposite and make a child with autism more hyper.

The other things that scare me is a lot of medications for these symptoms have not been studied in children with autism, or even any child for that matter. The common medication for sleeping in children with autism is called Clonidine. This is an adult medication for high blood pressure. Interesting, huh? But that just shows that medications do different things to people with other developmental issues.

I'm realizing that every thing we start, whether it is medication or a new therapy, I am always going to be scared. It's human nature to be scared of the unknown, but we aren't going to know if there are also positive benefits unless we try. Right now is the time to try. Brycen has adjusted well to all of the change in his life these last couple weeks. We feel we have great support right now from our families being much closer to us, a school that seems to be on our side with helping him learn, therapists that want to help him, a Case manager that has so many resources to share...what better time than now!

The "depressed" days

I'm going to be very honest with you in this blog in that I HATE these days and I HATE what Autism has robbed my little boy of!
I'm also going to be honest in that it doesn't make me feel better to have people tell me "it'll be ok," "look at what he can do and not what he can't do," or "God chooses special parents for special children," or "you need to accept him for the way he is." These comments make me feel worse because it reiterates to me that those that are usually saying these comments are those with neuro-typical children.
I am not a special parent...I'm just a parent that does what I need to do for my child. That's not "special", that's called "love."
I refuse to "accept" that he can't communicate or how aggressive he is. I should not be expected to accept these things, which is why we are choosing to have him in various therapies and attend school so that we can hopefully work past these issues even if it's just a little. If I was accepting this, to me that means I am giving up hope for what he may be able to do in the future.
Every single day, I do look at what "he can do", but it's very hard not to see the things "he can't do" when it is right in front of me all the time. It's conference time right now for many schools, and parents are hearing and sharing about how awesome and smart their children are. I am trying so hard to be happy for those people and to remember that it's not their or my fault that our children are different...but deep down, I do still have feelings of resentment. I have to look at the things "he can do" every day, just because that is what gets us through the day. I try to brag him up as much as I can either through the blog or my FB comments, so on these type of days, I can look back and read the great things he can do to help me through another bad day. If I didn't look at the things "he can do", then I wouldn't know what to work on with him every day and we wouldn't be seeing the little bits of progress every once in awhile out of him.
Who the heck knows if "it will be ok"? Not a single person in this world can give him any kind of prognosis for the future. The books and doctors say "try this or that", but then they follow with "it doesn't work for every child or even sometimes the majority of the children." Hmmmm....

So the point of this post is just to let me get out my grief for the day. I don't expect comments, and definitely don't want to be told how I should feel or anything like that. What I really, really, really want...well, I'm not even going to go there! But I'm sure you can definitely guess!

Moving...the biggest transition of all!

Everybody knows that Brycen does not do well with transitions most of the time. He gets mad on the weekends when I don't get him dressed right away because he thinks he needs to go to school. He'll cry, pull at the door, get his shoes, throw things, hit me, etc for sometimes an hour before he realizes it's ok and we have other things to do.
I am so, so, so nervous for this afternoon when he comes to the new house for the first time. I am also very excited, but the nerves have pretty much taken over my body and I wish some Autism-God could tell me it's going to be ok.
I tried to put off as much packing as possible of the visible things to help guide him through this. He would watch me pack boxes, follow me around, look inside and a few times he even grabbed things out that I was putting in. Unfortunately due to meetings on the day before the move, I was forced to do a bunch of packing in his presence the last couple days. Overall, he did ok. When I think back, I notice he was definitely more hyperactive, more irritable and crying over smaller things than normal, and like I predicted, even more aggressive towards Aubree. But overall, it wasn't that bad. He has spent the last several days with my parents in Evansdale as we knew we could not allow him to see our belongings moved onto a big semi. Though I did figure, he would have loved to see the semi parked in front of our house...but I did not even entertain the thought of having him at either house for the pack up and unload. We also have not allowed him to see the new house before this as we have determined it is easier for him to accept the new house with his belongings in it, instead of a new house with the previous tenants belongings or empty.
So today is a big, big day for him! The last time we moved to the different house in SL, he was still regressing and we weren't sure what was going on. The move before that to Storm Lake, he wasn't even one years old yet, so as you know, he was still considered "neuro-typical" at that time. It really didn't phase him then. A lot has changed in the last couple years and we need to protect him more than ever from these upcoming transitions.
So while this move is very exciting and very much needed for us at this time, the next 10 or so years of our life will be a roller coaster for Brycen, as each move will probably present different challenges as he gets older. Even if he walks into the house, running and happy today...we know that doesn't mean the transition is over. It's actually just begun as he has a new school to start at, new neighborhood and parks to get used to, new therapists to work with, new Fareway store to put together with where we can find Daddy now, new Wal-mart with different layout, new everything. While some kids wouldn't even be phased at a new store they visited, I'm not sure how Brycen will grasp and comprehend his Daddy in a whole different environment. The transition will probably take months.
I've had multiple people email or ask me how I think he will handle it. That's the thing with Autism, you just never know. It could go far better than expected, or far worse than expected...so I guess we just don't set expectations for things like this because nobody can predict anything. He may be fine for a week or two, and then all of a sudden have two meltdowns in a week or refuse to go to school willingly, or cry/make more noises. OR this could be a fantastic environment for him and maybe we will see an improvement in speech right away! Nobody knows...so I'm not ignoring your question (well, actually I am!), but I really can't answer that because I really don't even want to think past getting him through the first glance and walk through of his new home. Everything else we will just take day by day, minute by minute if needed.