Was that a conversation? I think so!

Recently, I've had a hard time explaining Brycen's verbal output.  While he is considered "non-verbal", he is able to say quite a few words & some phrases.  Most don't have all of the sounds, but those who are around him a lot can understand quite a bit of what he says including us, his teachers/associates, & some of our family.  With that said, Brycen is FAR from being able to converse.  Most of our questions to him require indirect (or direct) prompts to get a simple answer.

So that is why I am ecstatic to share what I consider a conversation we had tonight!  So much was "right" with what happened tonight & just shows us how far Brycen has come in the last couple years.

Brycen LOVES bath nights!  He has a routine to how he sets up his toys, the fact we can't start the water until after they are set up, he wants to watch his toys fall over/start to float, wants his identification bracelet off, and THEN he will get into the bathtub.  First is his hair, then his body, lastly is his favorite...play time!  Before bath-time is over, we also do a lot of warning by counting down minutes to him of how much time he has left.  This helps him tremendously with transitioning!  Typically we will do the countdown ourselves, but tonight I decided to turn the tables to see how much he could do on his own.

All clean after bath time!

This is how tonight's bath-time went after our initial routine and a few minutes of play time...

Mommy- "How many minutes, Brycen?"
Brycen, looking at his hands and slowly holding up fingers- "Four more minutes" (word approximations but definitely clearer than even just a couple months ago!)

Mommy, a couple minutes later- "How many minutes left, Brycen?"
Brycen, immediately responding- "Two more minutes."

Mommy leaves the bathroom to go down the hallway.

Brycen, yelling- "Mommy, mommy, mommy!"
Mommy, coming back to the bathroom, surprised that he was seeking me out- "What is wrong?"
Brycen, pointing to the drain stopper- "Brokeeeee"
Mommy fixed the drain- "I fixed it."
Brycen- "Fix it.  More water."
Mommy- "How many more minutes?"
Brycen, pausing for a few seconds & holding up a finger- "One more minute."
Mommy- "Yes, so you don't need more water for one more minute."
Brycen, agreeing & going back to playing- "Yes"


There is so much right with the interaction we had tonight!  First, he was verbalizing with no problems and very little hesitation.  He was connecting what usually is Mommy/Daddy's part of the routine and taking it over himself.  He was counting it backwards on his own.  He yelled for me when he needed help (this is so very rare for him!).  He seemed to understand why he didn't need more water to replace the water that accidentally went down the drain.  And overall, he was conversing back & forth with me!!  It wasn't just one word or one phrase, it was a continual conversation that took place over a few minutes.  My excitement might not be understood by all, but those who have been in our "shoes" and/or have a non-verbal child will completely understand why this is something to document & share!

I hope we have more to share with you soon about our conversations with him!  All of the progress he has made in just a few months is outstanding & it's so hard to keep up with him at times :)

Educate, Advocate, Make A Difference!

A few years ago after Brycen's diagnosis, I began investing in what I now call our "Autism library" at home.  A good portion of our "library" are books written at a child's level about Autism.  In the beginning, I was purchasing them to help our nephew, nieces, & Aubree adjust to having a family member with Autism.  But when Brycen was in kindergarten, I decided it would be beneficial to take the time to read one or more of the books to his classmates so they also could understand more about having a peer with Autism.  

Brycen is now in 3rd grade and I have expanded to not just reading to his general education classroom each year, but to many of the classrooms at school!  The first year was amazing to listen as the children asked questions and made comments that totally blew my mind.  They WANTED to learn and they WANTED to know what to do to be a friend to not just Brycen, but others with disabilities in their school.

Every year after, the questions were more in depth & harder for me to answer.  They were making me ponder why our youth act the way they do towards people with disabilities/differences, both good & bad.  It made me realize a very key detail in the WHY Brycen seems to be so accepted by his peers. 

We are real, honest, & involved with peers about Brycen.  We are educating & advocating at an early age.


***Before I go any further, I want to add a disclaimer that I am in no way saying we are the perfect parents.  This is my opinion about why BRYCEN is accepted & treated with respect by his peers.***


Brycen is adorable, giggly, loving, & wants to be around his peers.  But I'm not blind to the fact that it is very very hard for other children to want to be around him sometimes despite these things.  It's hard to know how to interact with a child that has deficits in communication skills.  It's hard to be patient with someone who doesn't always want to share or follow rules.  He gets aggressive & hits when he is upset, doesn't get his way, or doesn't know how to communicate.  Not exactly wonderful qualities in a "friend"!  Some adults can't even handle these things,  much less children!

So why does it seem that the kids are fighting over who gets to sit next to Brycen at lunch or help him with an activity?  Why is he so accepted in every part of the day at school even if he can't do everything the peers can do?

It's actually quite simple.  We have been involved with his peers from the beginning.  We have never hid the fact he has Autism & that he acts differently than his peers sometimes...ok, most of the time ;)  We are up front with the children in explaining Brycen's negative tendencies.  We answer their questions & don't take offense to some of the wording they use when asking or commenting.  We choose to educate them now at this age BEFORE the bullying & teasing starts.  We give them tools to use to communicate with him & understand why he does the things he does.  We encourage them to share what they have learned with their family.  We don't expect them to be perfect in their interactions with him.  We acknowledge it can be hard to be friends with someone who is different.

Once again, I'm not saying what we choose to do is perfect or is right for every family dealing with their child's differences from peers.  This is right for us.  Brycen participates every year when I am talking with/reading to his class.  He "models" his compression vest while I explain what it is for.  He "role plays" with me about how to give him choices.  He knows he has Autism, he knows the word.  He may not be able to communicate much to me, but not once has he ever acted embarrassed or shy when we've talked about Autism.  The fact he participates in these "talks" with his peers every year & doesn't get upset, shows me that he WANTS us to do this.  That this realism & honesty we have with his peers is benefiting both him & them!  

The honesty & openness with his peers is obviously paying off!  We have yet to have a teacher tell us since he started school that peers are treating him differently.  He has never been teased to our knowledge, though I have heard many of his peers at this age talk about this happening to them already.  If anything, it's the complete opposite.  These kids are encouraging him to do better. And in return, he is showing them that it's ok to be different and a friend to everyone. In fact, I just received an email from his general education teacher last week letting me know just the impression he has made on these kids!  Not one, but TWO of his peers took information about Brycen home & wanted to do something special for him.  Both asked their parents if they could bring some of their own train books into the classroom knowing how much Brycen loves trains. The parents then communicated with the teacher to make sure it was all right that they did so.  These are 3rd grade children!!  

So if we have any advice for those parents who are just beginning this Autism journey, it would be to be open & real with those who will be around your child the most.  Arm them with knowledge & tools of how to be a friend to your child, don't expect them to learn it from someone else.  It is YOUR job to educate, advocate, and make the difference in YOUR child's life!  I promise, it will be worth it when you see how your child is accepted as just one of the kids, even though the differences are obvious.

Where Has The Time Gone?!

My last post was May 2013.  Almost 2 years ago.  So much has changed, yet so much has remained the same.  Where did the time go?  Where do I even begin to start updating?  Be patient with me as I figure this all out and start blabbing about this amazing kid, Brycen.

Let's start off with explaining that once again were transferred for the husband's job.  It had been awhile...3 1/2 years to be exact.  So we knew it was going to be coming since that's the nature of the position he is in with the company.  While parts of this move were very hard & emotional, it has ended up being smoother than we could ever imagine.  It was hard for both kids to leave the school they had attended for over 3 years, the many friends they had, the life we had built all around us.  But if Autism has taught us anything in the last 6 years, it is that change CAN be good!  This change ended up being very positive.  The kids transferred to the new schools with ease (they have been there for two months now), we live close to my brothers & their families, we have a safe & large home that we all love, the husband's work is great, and we are surrounded by people in the community that have made us feel at home.  We are very very blessed!

Onto the specifics about Mr. Brycen!  

He is now 8 1/2 years old & in the 3rd grade.  

He is reading, writing, spelling, doing math...everything his peers are doing!  He continues to receive intense special education instruction, yet this new school's philosophy aligns with ours in that he is now mainstreamed and had a 1:1 associate hired for him about a month ago.  He does the same type of work his peers do at the same time they do it...it is just adapted to his level of learning and he has constant support built in.  

He continues on a gluten free diet though we have never tested him for gluten intolerance/sensitivity.  In order to that, we would need to reintroduce gluten into his body for a few weeks before they can test.  And given his reaction to when he eats something that has been contaminated with gluten, we don't feel it is necessary to put him (or US!) through that for weeks!  We know what works for him and that is all that matters right now.  

Brycen has also progressed in many areas of his development.  He continues to use a communication device AKA "talker", yet he has begun to verbalize more sounds & words that those who are close to him can understand.  While he is nowhere close to being considered "verbal" or holding a conversation, he has definitely made progress!  

His aggression has decreased tremendously.  At home, we mostly see the aggression in response to not wanting to do something or when he is just mad and can't figure out how to say it.  At school, he has had only a couple incidences this school year and one was because he was angry about having to do something, others because he was trying to communicate to someone that he wanted their attention.  Compared to the dozen or more acts of aggression we were seeing PER DAY two years ago, I would say we have reached a "normal" for someone who has a hard time communicating what they want & understanding the world around him at times. 

He is sleeping through the night most nights!!  Yes, after 8 years of battling sleeping issues, we finally reached the point where we are all getting sleep.  Amazing the difference in all of us!  We did seek out expert opinion at the Center for Disabilities & Development for this issue last spring.  While we were doing some things correctly to help him in this area, we definitely had room for improvement.  It took a couple good months of being firm, following the strict rules, and frustration...but we finally saw the light at the end of the tunnel recently!

He still LOVES trains, but has moved onto many other areas of transportation as well.  He enjoys playing with, watching movies & reading books about tractors, race cars, planes, boats, etc.  But Thomas the Train & his friends will always be #1 we think.  He loves to be outside, ride bikes, swim, go bowling, ride in the car, go out to eat, play UNO, and many other things.  He is learning responsibility by having to put away his own clothes, cleaning up after himself after meals, putting away clean dishes, and many other chores.  

Most importantly, he is still Brycen!  Our loving, giggly, & funny boy!  We can count on him to challenge us in ways we never imagined, and be the bright light in our lives that reminds us how blessed we continue to be.

The Best Decision for Brycen: Beginning the Gluten Free Journey

Wow, it's already May!  The kids have less than 3 weeks left of school and then we will have a 2nd grader & a kindergartner!  I know we've been MIA the last few months (Ok, so it's more like the last 7-8 months!), but life has really just been moving along fine.  Brycen has stayed stable in so many areas or progressed further than we could imagine in some.  Unfortunately, recent behavior has pushed us into make some more decisions about what is best for him.  Not that decisions aren't made daily/weekly about his services, medical appointments, schooling, etc...but this is more of a decision that will affect a lot of his life.

I'm going to back up a bit & give you some background on what has been happening.  Brycen has always been aggressive as most of you know, but it has mostly been in the home environment or maybe with his teachers.  A few months ago, Brycen began showing aggression towards his peers at school.  It was a very emotional time as I worry he is going to not only hurt someone, but jeopardize the relationships he seems to finally be making with his peers.  If they see him as wanting to hurt them, they may not want to be around him as much or be as understanding of the differences in his behavior like they have been before.

The hitting started very minimal with peers and seemed to be focused on a few little girls that Brycen seems to really like.  Sometimes it would be at their lockers or outside at recess he would push someone.  Even more tools were put into place to help him with his communication as we understood this seemed to be the reason for his aggression & wanting to get their attention.  As the weeks went on, the aggression worsened and seemed to be for no reason, not even when he was angry, as well as increased when he was angry and trying to escape from doing something/expectations with his teacher/associates.  Some days/weeks were better than others, but it really came to a head this last week.  At his recent IEP last month, we implemented a new behavioral plan with a positive reinforcement system.  Every time he would hit or show sign of aggression, he received a ticket for his pouch hooked to his belt loop.  He also has a "break" card and a "I have something to say" card attached.  He always has his "talker" with him, as well as some extra communication magnets on his locker if needed when he was there.  His behavior was tracked over weeks and when he didn't show the aggression while the AEA specialist was there, they actually tried to irritate him by changing his schedule, etc to bring out the behavior to observe the whole situation.  Some days this didn't even work, other days he was very aggressive.

After hitting 8 times before noon on Wednesday, and 15 times before noon on Thursday, it was obvious something more was going on.  We decided even though doctors in the past have said Brycen has no signs of gut issues and that GF/CF diet was not recommended at that time, we decided after seeing many parents report decrease in aggression after following the diet, it was the next necessary step for Brycen.

So just like I am with everything I put my mind to, I threw myself into the new decision fully!  I immediately talked to the teachers/associates, checked out books, asked for opinions/feedback from my ASD mommy friends, went shopping & armed myself with as much as I could in just a few hours.  I decided we needed to start immediately with GF at home, and slowly work it out of his school environment.  If GF by itself does not show an improvement in a couple months, we will look at adding CF to it.

The bad news is our checkbook is taking a hit while we stockpile the necessary things to get started on this diet (right now, it will only be Brycen on it, not all 4 of us), the great news is Brycen is responding well to the change & eating everything we have given him.  He has his own shelf now of foods to choose from, as well as his own meats/breads in the freezer.  It will be a challenge as we move into the next area of how he will be able to eat-out & not jeopardize his GF diet, as well as visiting other's people's houses or birthday parties, but we will figure it out. We really have no choice but to try this for Brycen!  We want what is best for him & will do what we can within our means to do so.

We will be using the blog as a way to track behavior over the next weeks/months, and hoping we will see an improvement soon!  Thanks for following his journey!

My Heart Hurts

My heart hurts when I see him like this.  But my heart hurts even more when he tells me to "go" when I want to hold him and try to soothe him as he falls asleep.

I haven't blogged in so long besides little statuses here & there on the facebook page because life was just going on.  There have been fabulous moments and not-so-fabulous moments over the months, but life was just moving along just fine.  We had a rhythm, conquered the holidays, school was going good minus the excessive aggression we saw for a few days, he was learning & progressing in so many areas.  But today, I felt compelled to the blog out of hurt & guilt.

Last Monday Brycen was hurting so I took him to the doctor which resulted in an ear infection as I had suspected.  He seemed to be feeling better and then he spiked a little fever yesterday and just started acting "off."  In Brycen it's hard to tell since if we ask him if he hurts, he typically will either point to a place he had an owie last or tell us "no."  We really have to read the physical signs and with him that means he stops stimming or playing with his usual toys.  

Another sign is he doesn't want me to hold him or be near him.  That might be one of the worst heartaches a mother feels.  When Aubree is hurting she wants us to hold her, rock her, lay next to her in bed.  Brycen just yells at me when I try to touch him or sit/lay next to him.  He's currently laying in our bed and has been for about an hour.  I heard him moaning and starting to cry again so I went in to lay with him and attempt to comfort him, but he told me to "go" and started screaming at me.  He didn't calm down until I left the room and closed the door.  I feel defeated.  Autism is defeating me right now.  

I feel guilty for not being able to comfort him.  I feel guilty because this sickness is following a very rare night-out that Mike & I have.  It's not that he seems to care when we leave him for a night-out, especially in the care of grandma.  And I know it's necessary for a marriage to have time away from the kids...especially necessary for my mental health since I stay home with the kids day-in and day-out and rarely spend time with other adults.  But, I still feel guilt for this.  Not only for leaving him and my duties as a mom, but now I feel guilty for even thinking this is slightly about me.  Then I feel guilty because maybe I'm not doing enough to help him conquer this part of Autism.  I dedicate a lot to him and helping him progress, but am I not dedicating enough?  How come other parents of children on the spectrum seem to get to comfort their children when they are sick without being yelled at?!  I know I know I know...every child is different.  

It's just not fair.  A mother's instinct is to comfort her child when they are ill, and it's not fair this simple action/bond has been taken away from Brycen and I.  I won't stop trying of course, but after 4 1/2 years of being rejected when he isn't feeling well, it's hard to think  it's going to change one of these days. 

Life Takes Over

Dear Brycen: The Joys & Challenges--

I feel so bad for neglecting you over the last few months, but life has just taken over.  I promise that I think about you frequently and it crosses my mind each week that I should be blogging about something Brycen has either achieved or been battling, but I feel so much better about things that it isn't at the top of my list anymore to use the blog as therapy for myself...which was the main reason I started you in the first place back in June 2009.

Three and a half years have gone by.  We've had our ups and downs, lots of tears and laughs.  You helped me through probably the roughest patch I have experienced in my life and for that I am eternally grateful.  You were there when I needed you, whether it was daily, weekly, or even multiple times a day!  You provided an outlet for me to "talk" things out about what our family was experiencing and you gave me the chance to keep family & friends across the country updated on Brycen and his joys and challenges. 

I need your help to determine what direction we need to go with our relationship.  When I first started blogging with you those years ago, it was devastating.  I wasn't sure things would ever get easier.  Thankfully they have!  It's true that time really does heal wounds.  The dream I once had for my son from the moment he was put in my arms right out of my tummy...it did not vanish.  It just took a roller coaster ride...up, down, to the left, right, faster, slower.  Yes, life is different than what I imagined when we first found out we were pregnant with Brycen, and even when we found out we were pregnant with Aubree.  But that doesn't mean life isn't just as precious and special!  If anything, it's more meaningful.  I have learned more over these years than I imagine I could have with two typical-developing children. 

So, I need to decide where we go from here.  We're most definitely not breaking up, but we have reached a milestone in our relationship.  A good one of course!  So let's see where this takes us and the path that will lie before us. 

With much thanks and looking forward to the future,
Melissa

P.S. Our little boy is amazing and accomplishing things we never even dared to dream about 3 years ago! 

Time to Catch Up!

Has it really been two months since I've blogged?!  Wow!  I guess now that I am using a Facebook page for the small updates, I forget about blogging about the big updates.

We better catch up on what has been going on in Brycen's life since the beginning of August!

First of all, Brycen started 1st grade.  He has been in school almost 2 months already and is adjusting very well to the schedule.  He has made strides in attending to his homework at home, as well as trying harder for his spelling tests each week.

For the first 4-5 weeks we were having A LOT of concern about his hyperactivity and inattentiveness.  He was being very aggressive, fidgety, could not sit still or pay attention, and doing A LOT of sensory seeking.  We were originally thinking about changing his medication by seeing his psychiatrist earlier than we had scheduled, but first we decided to throw in more sensory breaks.  The teacher/associates at school integrated some more sensory tools into his day, as well as we invested in some additional sensory tools at home.  HUGE difference in the last couple weeks at home...and we meet with his teacher for conferences tonight so we are hoping to hear the same from her about school.

One of the main sensory tools we had been wanting for a long time for him but were unsure of because of cost and space was a therapeutic swing.  He has always loved the swings at therapy and at school.  Thanks to Brycen's Papa and Grandma Timmer, we were able to make that become a reality for him at home sooner than we thought!

The other sensory tool we were able to purchase recently was a weighted blanket for him.  We chose a company that custom-makes them when ordered so we chose a Thomas the Train material to match his bedroom (and his likes) in a medium size-6lbs.  This just arrived this week and he has only slept with it two nights already, but guess what??  He slept all night both times for almost 11 hours each night!

In August, Papa and Grandma O'Connell stayed with the kids while we took an adult only vacation :)  While they were here, they went fishing and Brycen caught his first fish!

In September, Brycen went to his first high school football game for our town and he LOVED it!  We were there about 3 hours through the JV game and then thru the halftime show of Varsity game when we asked if he was ready to go home (it was COLD!) but he firmly said "no" so we stayed a bit longer.

Also in September, we had our family pictures taken by Christi Marie Photography!  Wow is all I can say when we compare the difference from last year's picture session to this year!  Huge difference in Brycen's attitude and ability to handle the camera & even being posed for some :)  Of course it helps that we start the day at an old train depot...happy boy!

We were even able to take some fun family pictures!

 

 

Lastly, I need to take the time to brag up Brycen's progress a little more here!  Brycen not only saw the dentist for his check up this week, but he also needed to see the doctor for an ear infection.  Guess what?!  He did amazing!  Minimal struggle with the dentist so I did need to hold his head still for her to look closely at his teeth, and he put up a little fight with the white toothpaste the dental asst was going to use (he recovered once she found some blue!), but overall huge improvement.

 

At both the dentist and the doctor's offices, he looked up when his name was called which shows his attention is progressing!

 

When seeing the doctor for what ended up being an ear infection, he let them look in his ears and do a basic check up with no fighting.  Since he was not running a fever, I asked for him to get his flu shot while I had him in the office.  Minimal struggle there too!  I held his arm down while he sat on my lap, and though he pulled away when she did the shot, he immediately recoved and has shown pride in his band-aid :)

 

Sorry for the long post!  I even deleted a few things because there is so much to catch up on.  I really need to get better about this and post more often, huh?

 

Thanks for all the continued support for our little boy and his daily struggle with Autism!

The Slap of Reality

All special need's parents can relate to those moments when you feel like you are slapped in the face with reality.  They don't seem to happen as often anymore for me, but I felt it yesterday.  I was sitting in the waiting room of the therapy clinic while Brycen was in his one hour speech appointment.  Nothing specific brought it on, but I immediately thought "How did this happen?  Why did it happen to us?" 

The "why" question rarely pops up anymore because I know there is no use in trying to dissect the entire happenings of our life, my pregnancy, the first two years of Brycen's life, etc.  It's just not worth it when the present takes so much energy and emotions to deal with by itself.  Most of my "slaps" tend to be "how" now.  And it's not always negative but may be "how can I make this easier for him?" and just how to handle the day-to-day stressors for both him, us, and his sister. 

So, here I was sitting in the empty waiting room and these two questions go through my head.  I'm not quite sure why it happened then because he's been making slow but fabulous progress in so many areas and I am so proud of him.  Of course my eyes fill with tears and I just hope that the receptionist doesn't notice or that none of the other therapists walk through the room until the tears dry up.  Because I hate when someone outside of my immediate family sees my vulnerability about this.  I don't want people to think of me as anything but strong for him.  I WANT to be strong for him...but sometimes reality just slaps me in the face and it gets the best of me. 

We have no clue what the future holds.  No doctor or therapist can tell us what the next year, 5 years, or 20 years will look like for him.  So, I just cling to the present.  Try not to dwell on the past and the "why" and "how", and though the future will haunt me frequently, I also try not to dwell on that.  The present is already taking over so much of our life that I just don't know what more I can fit in right now. 

Summer is winding down...

It's hard to believe that Brycen will be back in school two weeks from tomorrow...1ST GRADE!!  I'm excited to see where this year will take him with some increased independence built into his IEP, a new teacher, and some new classmates.  He made tremendous progress in kindergarten that our hope is the progress will just keep snowballing with every additional year.

Brycen just finished his Extended School Year (ESY) hours where he was mainly working on socialization and routine, while continuing to work on communication with others using his device.  He met with a school associate a few times a week for most of the summer and they spent time with the summer YMCA group.  We are AMAZED at the progress Brycen made with this addition to his services!  He looked forward to going and was always surrounded by his peers.  The kids who ranged from his age to a few years older seemed to really accept him and embrace his extra needs.  It challenged him to be accepting of his peers around him, to share and take turns, as well as to learn how to communicate effectively with him.  He really thrived in this environment and I hope it's something we can continue with next summer!  Not only did his summer associate work on all of this with him, but he also overcame a lot of his fear around swimming when the kids would have free time in the pool in the afternoons.  He became more independent in his swimming and with the help of a swimvest that a friend so graciously is allowing him to borrow, he will actually jump into the deep end himself and swim around!  Next up...swimming lessons this year so we can build his confidence and our trust with him around water.

Brycen continues to attend speech therapy at our local clinic 3 times per week and will continue to do so once school starts.  The best part about this is we were able to push his therapy times back to 3:30 which means he won't miss any school this year!  How is that for having the best of both worlds?!  Depending on his fine motor and other skills, we may look into adding Occupational Therapy back on after school starts.  As of now, he seems to be keeping up with the Physical Therapy parts so we are not looking into that in the near future. 

With school starting soon, we will begin a new routine with both kids.  They are going to be riding the bus every day to and from school (or to therapy on those days for Brycen)...which I guess means a new routine for myself as well and more independence for all of us!  My babies are growing up and getting to be so big!

Finally, I wanted to share what my personal goals for Brycen are this year.  I would like to see his communication skills continue to improve whether it is through verbal, gestures, using his communication device, or sign language.  I also would like to see his aggression decrease at both home and in the school environment when he is frustrated.  I want him to understand he will have to do "work" at school and if he chooses not to, he will lose privileges such as recess or computer/iPad time.  I want to see his comprehension of reading and math continue to progress.  I want him to enjoy going to school and building relationships with his peers and teachers. I want those who work with him to enjoy it and to learn something from him.  Most of all, I just want to see him happy and thriving like he did this last year. 

Thank you for being a part of Brycen's journey!  He is very very VERY lucky to have so many supportive and encouraging people around him as he shows the world what he is made of!

Happy 6th Birthday Brycen!!!

Brycen turns 6 today!  Can't believe 6 years has gone by since he was placed in our arms and we learned what unconditional love really was.  Little did we know that day what the next years would hold, but neither of us would change anything about it...well, maybe just a little...but none of the important stuff of course!

I wasn't too tech savvy when Brycen was born and don't have any digital pictures uploaded from his first couple years, so I went back to his 1st year scrapbook to reminisce about those amazing (AKA sleepless) days.  Ironically, some pictures stood out at me that I wanted to share (and some that are just cute and I couldn't resist!).  So here we go...

Brycen's first pictures...8lbs 5.4 ounces of pure joy!

Mommy & Me snuggle time

Daddy & Me play time

Our little glow-worm...Brycen was very jaundice and required home nursing & a biliblanket for several days.

Brycen was very lucky to meet all 4 of his maternal great-grandparents.

Play time with Morgan!

Ditto...only Uncle Pat's turn!

Peek a boo...I love you!

Papa Mark's cane...now what do we do with these things?

First vacation...Cubs game in Milwaukee!  Prior to regression he had no issues with putting things on his head.

Wow...we have aged in the last few years, huh?

Lovin his little pool!

Matching outfits with Ethan at Uncle Pat & Aunt Erin's wedding

His best friend...our late doggy Mason

I'm a little teapot!  Prior to regression he loved singing and doing actions to songs.

Pictures and smiling for the camera were very easy then!  Happy happy boy!

He even liked getting messy with cake...now he is very neat with his cupcakes so he doesn't get too messy.

Still loves those goats years later!

Remember when haircuts were easy and it became naptime?  Whole different story now.

I hope you enjoyed a look back on Brycen's first year of life and some of the fun times we had!  Some things have definitely changed after he regressed at age 2, but some things remain the same. 

Even on the tough days, this boy can brighten anyone's day with his infectious giggle and sweet blue eyes!  This little boy is why we fight so hard against Autism and to give him the life he deserves!

Happy 6th Birthday, Brycen!!  Mommy & Daddy love you!

Beginning of Summer Update

I am so sorry it's been over 2 weeks since I've updated!  I have a feeling the summer is getting away from us already.

Just some brief updates on Brycen now that summer is in full swing:

• He started his summer school hours last week where he is meeting with an associate at the local Y to prevent any regression in routine and socialization.  The first week was great for him!  He seems like a little chic magnet...saw a couple of the "older" girls sitting around him after I dropped him off on Thursday.  They are meeting 3 times per week for a couple hours each time.
• He also started working with a new SCL staff, Alicia, last week.  Yay for finding someone local that is able to work consistently with him this summer (and hopefully during school year if her schedule allows).  He showed her his attitude right away about having to wait...but have no doubt they are going to have some fun this summer!!  He is already getting very excited when she shows up :)  They will be working together 2-3 times per week all summer.
• He continues with speech therapy three times per week.  He has been working with a new speech therapist that was recently hired full-time at our local clinic.  He is still feeling her out but I can tell he enjoys her as he will run right back there.  We enjoy getting feedback from new therapists to see if there is anything we are missing and they always have new ideas that we haven't thought of!  We do miss Bridget though...but we have plans to continue seeing her and her family on the side :)
• Sleep is the same old...up most nights around 3ish. 
• Aggression is the same...though I'm becoming less and less tolerant of this lately.  He's almost 6 yrs old and getting bigger which means he can do a lot more damage to everybody he is aggressive to.  It HURTS!  Time to get tougher here.
• He's doing amazing with eating!!!  He's finally gaining some weight and filling out a little though still a skinny thing.  He's consistently trying some new things though may not take more than a bite...and he devoured 1/2 ear of sweet corn last week so that will definitely be on the weekly menu this summer!
• Potty training is frustrating!  Since we started in early April, he has been great with peeing...up until this last week when he started peeing in his pull-up again A LOT!  Now you are probably wondering why is he in a pull-up instead of underwear after all the success we had a couple months ago...well, the kid regressed completely in pooping.  Since school ended, he has only had a handful of successes on the toilet with that.  I thought it was just a little stage with change in schedule, but looks like it's more than that especially since he started peeing in it as well.  Sooooo, it's back to the basics again!  I refuse to let this regression take him back that far...we worked HARD in April on this success.  Regression is always in the back of my mind with EVERYTHING he accomplishes developmentally, and being he is so close to the age the U of I doctors initially mentioned, it is definitely crunch time!

Thanks for staying updated on Brycen and our family!  As you all know, we participated in the Iowa Walk Now for Autism Speaks in Des Moines on June 9...and I have tons I want to share with you about that soon!  It definitely calls for a post of it's own, or maybe even two or three!

Autism is a Mystery ~ Supportive Family & Friends are not!

Have you ever spent a couple hours surrounded by complete strangers that feel like family?  If so, then you know why I look forward to the Autism walk each year.  I don't have to know each of the hundreds of people's names to know that these are the people in my world that "get it."  Though we are gathering to fight one of the biggest mysteries in the world and obviously it's not a celebration of Autism, we still get excited to be surrounded by faith, hope, and A LOT of love for our children who have daily obstacles that many of us just take for granted. 

Did your kids answer the phone this morning with "hello"?  My son isn't able to do that...he is nonverbal.

Did your kids go outside to play in the yard without supervison?  My son isn't able to do that...he doesn't understand to stay in the yard and lacks safety awareness.

Did your kids buckle their own seatbelt the last time you were in the car?  My son isn't able to do that...his fine motor skills make that hard for him.

Did your kids sleep through the night?  My son isn't able to do that...something in his brain causes him to wake almost every night and he requires a medication to even help him fall asleep.

I could list a ton of examples of what most parents take for granted in their children!  But instead of listing more of those, I'd rather have you remember what my son CAN DO!

Did your kids ride their bike this week?  My son did too!

Did your kids give you a hug and kiss?  My son did too!

Did your kids play games on the computer?  My son did too!

Did your kids play with a sibling or friend this week?  My son did too!

Did your kids laugh and smile today?  My son did too!

Did your kids do a chore around the house?  My son did too!

In 8 days, we will be surrounded by families and friends that are taking time out of their busy schedule to spend a Saturday morning fighting against Autism!  Most of the people on Team Brycen will also have traveled from out of town to do so as well.  How amazing to have about 40 family and friends come together to show support for a disorder that is one of the biggest mysteries in the world and is becoming an epidemic as the diagnosis rates continue to rise year after year. 

Not only do we have some amazing 40 people surrounding Brycen that day...but we also have an outstanding number of people that have donated to this cause with their hard-earned money!  Classmates from when Mike & I were in school...to teachers & therapists that have worked with Brycen...extended family that may have never met Brycen...old & new friends...friends of friends that just want to support a good cause...past & present co-workers...to strangers that put money into the fundraising jars at the store.  Together these people donated to Team Brycen 2012 to raise an amazing $6333  as of this morning!!!  The generosity of those supporting us is beyond any expectation we had going into this just 3 years ago! 

Thank you to all of those people who found it in their hearts (and wallets) to donate to a cause that we will forever be linked to!  While Autism may still be a mystery in our lives...the friends and family that support us is most definitely not a mystery! 

There is still time to donate if you haven't already.  Below is a link that will take you directly to our team fundraising page where you can click on the names of any of the walkers or "general team" to make a donation.  If you prefer, you can also give me a check or cash and I will get it to the right people! 
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=998348&lis=1&kntae998348=E2B0C08AF8B244E5BCCC0D842D0F7F12&team=4940637

Brycen & Mommy's Special Day

Galesburg, IL train museum---May 22, 2012---Brycen & Mommy

Since the kids are out of school already, I decided I wanted to spend some special time with each of them this week with G'ma & G'pa O's help to watch them separately so I could do so.  I wanted to plan a special trip with each of them for part of a day to someplace I think was unique to each of their likes.  Of course everybody knows Brycen has an obsession with trains, so what better place to take him to than a train museum.  Lucky for us, the town we are living in is on the Eastern side of the state which is quite close to many train depots and museums, so I chose to take Brycen to Galesburg, IL for a little day trip.  Any mention of going to see trains produces immediate happiness in him!!

So after therapy, we packed a lunch for the car and off we went to Galesburg for the afternoon.   It's about an hour and half but with Brycen that time goes by so fast as he loves being in the car especially on the interstate where he can watch semis all day!  The only "pet peeve" of his is when we are passing another vehicle...he does NOT like us to be in the left lane for too long and will begin making unhappy noises and pointing to the right lane as soon as he thinks we should move back over.  He's getting a little better about this but you can tell it causes him some anxiety :(

As soon as we got out of the car and was walking across the street to the museum, a train whistle could be heard not far away.  Brycen watched as the crossing lights started flashing and started tugging my arm very hard to walk faster! 

After the train went by, we went into the museum, but unfortunately cameras are not allowed inside.  Luckily she said I could take pictures outside on the train cars and engine that we could tour with one of the guides.  After about 20 minutes of watching a small train layout inside (and I talked to one of the workers who believes she has a 2 yr old grandson that has Autism), we went outside with one of the guides for the tour. 


Into one of the train cars

Ringing the bell

Finally looking at me for a picture in front of the engine

In the caboose

Taking the wheel...choo choo!

Holding my new pull back train from the gift shop (and posing for mommy!)

 After the museum, we ventured next door to the actual train depot where we saw a few passengers waiting to board their trains.  During the time at the museum and depot, we saw at least 5 trains go by!!  We decided to walk across the street to the Discovery Depot which is a children's museum with hands-on activities. 

One of his favorite toys ever!

Climbing through a train "tunnel"

Tree house slide

Water room...wanting the duckie to float



Climbing the wall...this was as far as he would go and then fall down on the mat & laugh!

Of course he spent the most time at the train table

Cool set up where you roll golf balls down...

...and they come rolling back on the bottom.

Off to drive another train.

"All Aboard!" says Brycen

Before leaving the Discovery Depot, we watched another train go by on the tracks before walking down the block to a little French cafe called The Landmark (the staff at the depot said it was child friendly and recommended it for it's unique food).  Brycen was happy to sit at a table by the window and watch the cars go by.  Then we headed home for an evening treat at a local ice cream place.

Drinking pop at the cafe

Eating his grilled cheese and homemade potato chips

Holding onto the handle in the car...not because of my bad driving :)

Yummy chocolate ice cream at Yums!

I mentioned "seeing the trains"...

...then we watched the video on my camera of a train and he was all smiles.

VERY happy boy after his special day with Mommy!