Another "LEAP" for mi"STER" Brycen!

After a long lapse in playing the Leapster with Brycen, we recently rekindled the love Brycen has for the Clifford the Big Red Dog game. It has been many moons ago since I have blogged about the Leapster (or blogging at all as Melissa usually does it) so I will refresh everyone on where Brycen was.
The main focus of this post will be on the game that involves tracing letters (there are other games that involve some other skills which Brycen is getting quite good at as well). Brycen's first major obstacle was to even hold on to the pen. Brycen at first was comfortable with having me hold the pen and he would put his hand on top of mine while I traced the letters. Then he progressed to the point where he would hold the pen and attempt (just one attempt) to trace but couldn't do it correctly, so then I would do hand over hand with him.

Brycen tracing letters on the Leapster!

Recently when we started playing the game again Brycen was extremely excited about the letters, trying to say each one, and he would try to trace them a couple times before he would want me to help him. Each day that we played he would try a few more times before he would ask for help, and each time he was getting a little closer to actually tracing the letters correctly.
My new favorite letter in the alphabet is the capital "Y", it took probably 10 tries but he did it!!! The joy in his face (not to mention my own) was simply priceless. Brycen then did the lower case "y", both sizes of "h", "w", and "f" and each time we would have a little celebration of accomplishment.
The fact that we now know that he can recognize letters, attempt a sound of each letter, and maybe this simple game can lead to Brycen tracing letters.  WOW!!!!
-----Mike

The pages Brycen traced of the letters in his name.

Fast forward a day after he first did this accomplishment:  I broke out a new book I bought at the dollar store recently that has pages dedicated to each letter and tracing.  I copied the pages of letters in his name and sat down with him during rest-time to try this out.  The only one he needed hand over hand assistance with to start was the "R".  The rest of the letters and the last two on the "R" page, he was able to do on his own with just a few verbal prompts and pointing to where to start from me.  How amazing is that?!  I really credit the teacher/associates from last year and the Handwriting Without Tears program for this accomplishment.  Over the last 9 months, he was able to learn to recognize each of the letters in the alphabet (he can now do lower case too!), verbalize all of the letters (in his own way!), and now is showing he can trace quite a few of them!  The excitement he has to do this and how proud he is of himself when he knows he has accomplished something is what pushes us forward each day to conquer the next battle.  I distinctly remember telling the team members at his IEP in April that one of my goals is to get him to learn how to write his name.  I know this is a skill that is absolutely needed in life, whether it is putting his name on his homework, or signing a check someday at the store.  Two years ago, I never would have thought he would have come this far in these areas...so it definitely makes me look forward to where he will be 2 years from now!

------Melissa

Two Years

I bake when I am stressed.  I know our lives have been stressful the last few weeks with all the changes so I understand why I wanted to bake yesterday, but why did I feel this urge to continue baking today?!  I had already completed a triple batch of homemade blueberry muffins and am finishing up a triple batch of peanut butter cookies when it finally hit me.  Today is the 2 year "anniversary" of Brycen's initial diagnosis. 

TWO YEARS?!  Has it really been that long since I took Brycen to CHSC to meet with them about my suspicions?  Has it really been two years since I heard "Autism Spectrum Disorder" in the same sentence as my son's name?  That day will always be etched in my memory.  I took Brycen out to dinner afterwards for a "date" at Fazolis after calling Mike to report the outcome.  I drove the 1hr 15 minute drive home with Brycen, occasionally crying after calling my parents.  I remember questioning if I was strong enough to do this and of course the obvious "why?"  The dream that we had for our child to grow up, play sports, go to college, get married, have a family of his own (all if he wanted to of course) was shattered. 

Now, I still question "why" every once in awhile but not nearly as much.  I still cry every once in awhile, but not nearly as much.  I still wonder if I am strong enough to do this, but not nearly as much.  You see, Mike and I are the type of parents that aren't going to give up.  Autism is a word that helps Brycen get services to help him with his deficit in many areas.  That does not mean he is any less of my son than the day he was born.  He was a planned pregnancy, one that we looked forward to, and for some reason we were chosen to be his parents and to help him fight this.  We do what we need to so he is happy, as healthy as can be, and succeeding in this world in his own way. 

It took us awhile after this day to realize that we have a different dream for our son now.  Just because it's different, does not mean it's any less of a dream.  "Success" is different for everyone.  Some consider graduating from college a success...or making 6 figure salary a success...or having 4 healthy children.  Brycen's success will more than likely not be these things, but his success will be based on hard work that both I and many of those who have the ability to read this blog will never understand or experience.  His success in this world will teach all of us that having Autism does not make him any less of a person, but will instead teach us not to take things for granted and to cherish the "little" things in life that make us happy!  I consider my life a "success" already because of the fact that I was chosen to be his mother and to go through this journey with him every step of the way.

FYI:  I am not sure how else to describe it besides "anniversary" but typically this word is used in celebration of something. Despite how far we have come in the last two years, I will never CELEBRATE Autism.  I recognize it...I encourage awareness through our annual walk...but I will never CELEBRATE the fact that Autism took away so many things from my son.

Mission Accomplished: New house & new town!

The kids' bedroom upstairs

We are settling into our new house and new town this week!  Brycen has done fabulous so far with adjusting to spending a couple days with Grandma before being introduced to his new home.  When he walked into the house on Wednesday, he walked from room to room...checked over his movies in the living room, noticed his toys in the front porch, and then went upstairs to find his bedroom.  He made himself at home right away with wrestling his pillows around:) 

The reading/puzzle area at the top of the stairs

Though the new house is smaller than our old house, it still has some unique areas that allow the kids to be spread out.  They will be sharing a huge bedroom, though each has their own space and side of the room, as well as they have a toy room/porch and a reading/puzzle room at the top of the stairs.  They both have adjusted amazingly well...proving that by falling asleep on their own the first night with no problems in their new room!  The trick to these moves is to move fast and get organized even faster so that when they (especially Brycen) is brought into the new house, they see their belongings already set up and we can immediately go back to our regular routine. 

One side of the large porch area that is now the play room!

We're excited for the opportunities in this new town!  Excited to increase Brycen's therapy schedule next week to three times per week (Mon, Wed, & Thurs) for up to 1 hr 20 min each time (split between speech and OT).  His extended school year schedule is quite different here and he will start meeting with a special education teacher next week.  The schedule will be on Tues and Thurs until beginning of August to introduce him to the new school, surroundings, and include some socialization time with other children there for part of his time. 

Mike's hours have increased at the store along with more responsibilities which is a good challenge for all of us.  The kids and I look forward to walking the 1.5 miles to the store to see him each week, as well as walking to Brycen's therapy which is now only 1.25 miles away (yay for saving tons of gas money!).  We are looking forward to spending time with some old friends that live here, as well as some of Mike's extended family that lives in the surrounding towns.  Aubree is possibly going to attend preschool in the mornings starting in August as well (if I get moving on signing her up!).

This was a great change for us and we look forward to the new challenges it will bring, as well as enjoying our time together again after several weeks apart.  We are going to be very happy here!

Team Brycen 2011 was a SUCCESS!

Wonderful weather accompanied the Iowa Walk Now for Autism Speaks yesterday!  After donations were submitted yesterday, Team Brycen's total raised for 2011 was $5006 with 36 walkers participating!  2011 was definitely a success!

Team Brycen 2011
Iowa Walk Now for Autism Speaks, June 11 in West Des Moines

Thank you to everybody who donated to the team and a huge thank you to everybody who came out to show support through walking yesterday! 

Below is a list of those who could walk and how they know Brycen:

Grandma & Grandpa O'Connell

Grandma & Grandpa Timmer

Uncle Craig, cousins Samantha & Emma

Uncle Pat, Aunt Erin, and cousin Abigail

Aunt Brenda, Uncle John, and cousin Jocelyn

Great-Uncle Dean, Great-Aunt Norma, and second cousin Tom

Family friends Lori, Josh, Kurt, Anna, and Aiden

Family friends Megan, Taylor, and Sawyer

Second cousin Ariel and boyfriend Austin

Babysitter Mallory and boyfriend Austin

Family friends Ryan, Lisa, Hannah, Elijah

While the 2011 walk is over, it doesn't mean the fight is even close to being won!  The kids and adults diagnosed with Autism is increasing at an alarming rate and research is constantly needed to determine the best therapies, provide the best home and educational services, and give opportunities to these people to succeed in the world.  Support is not just needed in monetary donations each year during our fundraising for Team Brycen, but support and understanding is needed every single day when you see someone that needs a little extra help with accomplishing a task or a parent that needs an extra smile while enduring a rough day.  Autism is all around us and though awareness is there, we still have a long way to go to understanding just how hard it can be for families to go through this every day.  Thank you again for a wonderful year for Team Brycen...and we will see you in about 6 months to start planning the 2012 Team Brycen!  

WARNING!! Not for those with weak stomachs!

When I first started this blog, I wanted to be honest about the ins and outs of raising a child on the spectrum.  While I have shared a few of those very difficult moments with you...I have chosen to actually keep quiet about some of the grosser ones (AKA- embarrassing!) because I really don't want people looking at Brycen and judging him off of this type of behavior.  Today is one of those days where I am going to be honest because I am a little in "awe" of what just happened.  "Awe" is not being used in a positive way either!

While attempting to pack up some of the kitchen during rest time (Aubree & Mike napping upstairs), I noticed that Brycen was standing by the couch instead of laying on it while watching his train video.  This typically means he has a poopy diaper as he doesn't like to sit in them.  So, I had him lie down noticing that he had messed with his diaper so much that he had smeared some down his leg and shorts.  No big deal...right?!  Clean him up, put on new pull-up, put shorts in laundry room...this has happened a million times with him.

About 30 minutes later, I was yelling at him to sit back down instead of flapping by the TV.  When he wouldn't listen, I went over to him to find that poop was now on the floor and all over his feet.  Seriously, Brycen?!  Didn't we JUST finish changing you?!  So, I once again, clean him up, put on new pull-up, and go back to packing the kitchen.

Within another 45 minutes...well, you guessed it!  A THIRD time, but I didn't catch it fast enough before it was all over his legs, hands, floor, etc.  I scrubbed him down again, meanwhile lecturing him about "telling" me he has a poopy diaper and needs to be changed...of course, I know he doesn't quite understand all of this.  Obviously since he is almost 5 years old and has no interest in potty training (FYI: Boys with classic Autism typically are not potty trained until years after their typical peers.)  It just makes me feel better to lecture him so I feel like maybe, just MAYBE he will understand one word of what I am saying. 

Now, that wasn't so bad, was it?!  It gets better though.  This next thing is what we were hoping was a "phase"...but it has turned into about 5 months of behavior that is not getting better.  Brycen has finally realized where his male anatomy is located and is completely infatuated with "it".  While this is something a 1 1/2-2 yr old is typically "exploring", Brycen may be almost 5 yrs old but his developmental level is that of an 1 1/2-2 yr old.  At first, we attempted to ignore it and would ask him if he needs to use the bathroom, which we know he doesn't since he doesn't comprehend potty training right now.  It continued to get worse to the point where he was pulling his pants down in circle time at school, at the check-out in Fareway, and pretty much every other place we go as he has no comprehension that this is a private issue.  He loves "it" so much that we dread giving him a bath and even changing his diaper because it becomes a big ordeal over keeping his hands above his waist.  I can guarantee that "it" will make an appearance at least once during the Autism walk on Saturday!

Reality is that these are things that Brycen does not comprehend.  Reality is that we don't know if this will get better or worse.  Reality is...this is Autism.  Autism is fabulous, isn't it?!  

Team Brycen: Why I Walk

There are so many reasons why Mike and I choose to participate in the Iowa Walk Now for Autism Speaks!  Obviously, the main reason is because Autism affects our family in so many ways.  Of course we want to raise awareness about Autism and the battles that Brycen and we fight every day.

Two years ago this month, June 2009, was when we received Brycen's initial diagnosis.  We felt so alone...unsure who we could trust to tell with this very important part of our life...unsure if we were strong enough to handle this for the rest of our lives.  It was hard enough using the word "Autism" to each other, so imagine how hard it was for us to actually call our family and friends and tell them about this.  While Brycen's diagnosis has brought us closer to many people, it also has pushed us further away from others for various reasons.  Through all of this, we continue to form relationships with others who truly do understand what we are going through...because those parents are fighting the same fight with their own kids.  It's amazing the bond you can feel with someone that you have never met because both of our children have the diagnosis of "Autism."  It's an instant connection...not a relationship that needs work...instant understanding of what life is like day after day, month after month, year after year.  These parents know what it's like to accept that our summers probably won't be spent at sporting events, city pools, neighborhood picnics...but will be spent scheduling our multiple therapy appts each week, reading new studies, trying new medicines or adding onto our children's sensory diets, keeping a consistent schedule to prevent meltdowns, trying to be one step ahead of anything that can set off our child that makes the rest of the day go down the drain, going to bed each night praying our child will be able to sleep because we are absolutely exhausted, ignoring the stares of other people when our child is flapping and screaming, etc.

I walk in support of all of these parents!  I will go to this walk, knowing if Brycen becomes upset over the crowd, someone touching him, or the noise...I can look into the crowd and see another parent dealing with the same exact thing.  Or I can look into the crowd and see another mom smiling at me, knowing she is not judging me or my child, but making that connection so I know I am not alone.  Despite feeling lonely most days, behind closed doors while my child can't handle the day-to-day events of life, I remember this one day each year that I and my child will feel so supported and loved by so many people we don't even know.  I walk knowing that one smile from me to a mom of a child newly diagnosed, could mean that mom can make it through one more day of this battle.

If you are joining me in the walk this year, please remember to be kind that day.  Please remember not to judge.  Please remember that these families are battling something that is still so unknown to doctors and the world.  Please just smile and show support for those families and individuals that may have a rough time.  It's a day to honor those in Iowa who fight this all day long, all year long...and this is a day that so many of us look forward to away from the reality that are lives are a little different from yours.  It's one day a year where we continue to develop those life-long connections with those people who truly understand.

Genetics Follow-Up

I spoke with U of I Pediatrics Genetics this morning to follow up on the results of the bloodwork we sent in for Mike and I several weeks ago.  With all the excitement with the move, new babies, and end of school year, I had forgotten about this until another ASD mom mentioned their results on Facebook.  Anyway, when I called this morning, the supplemental report stated that the duplication that was found in Brycen is also found in Mike which means while it is inherited, this specific duplication is not a direct cause of Brycen's Autism otherwise Mike would also be on the spectrum. 

After speaking with her and then calling Mike to report the results, it still lingers in my mind that Mike had a speech delay when he was younger also.  Though the delay did not accompany other Autistic behaviors/symptoms, it was still a significant delay.  The chromosome that is duplicated is in the area of memory, language, and learning.  Is this just a coincidence? 

Also, dementia has been in both sides of our family (my paternal grandmother and Mike's maternal grandmother)...could this duplication be in Mike's family?  Could I also carry a gene that when mixed with Mike's genetic make-up, it puts our kids at higher risk of dementia later in life?

Genetics is absolutely fascinating to me!  I don't think my questions will ever end with this.  Obviously, genetics is not the key at this time to determining Brycen's Autism, it is still important that we continue to follow up with our genetics physician every year.  This gives us the chance to have more testing done as it becomes available and possibly get answers some day whether there is a link to genetics or not.