"When one door of happiness closes, another opens;
but often we look so long at the closed door that we do not see the one which has opened for us."
Helen Keller

Tuesday, May 31, 2011

Team Brycen 2011


Only 11 more days until Iowa Walk Now for Autism Speaks!!  Team Brycen 2011 has done a phenomenal job of fundraising again this year!  Our team has raised almost $4500 to date with more that has been mailed in over this last week.  We have a ton of walkers signed up and are once again planning a picnic lunch afterwards to celebrate another successful year.  Above you can see what our team shirts will look like this year!  Of course, we incorporated the train theme again to celebrate Brycen's passion for trains. 

Thanks to everybody who has pledged to walk on June 11, as well as to everybody who has donated over the last several months.  We appreciate all of the support! 

Tuesday, May 24, 2011

17 Minutes!


17 minutes...that's how long Brycen and Aubree played together this afternoon with the same toys, appropriately, and with no fighting/aggression. 
I can't remember the last time this happened for this long and this appropriately...has it ever happened?! 
I sat back in the living room chair and just watched from a distance, ready to intervene if needed, but enjoying a very special sight.


Most children with Autism have limited social skills.  Most do not understand how to play with toys appropriately.  Most want to play by themselves.  Most have limited attention span.  Most are very obssessive with how they play with toys and are very repetitive.
Brycen fits all of these descriptions and so much more of the spectrum.  Trying to play with him can be very stressful and takes a lot of energy. 
When Aubree was very little, she learned how to "adapt" to Brycen's way of playing.  She craves his attention and for the most part is very tolerable of his way of doing things.  This is all she has ever known in her brother.  She loves him!  He loves her!


17 minutes...a glimpse into what a typical sibling relationship looks like for other families with children this age (yes, I know that kids this age also fight...Brycen & Aubree do a fair share of that!).
A glimpse of what could have been if Autism had not robbed my little boy of his social and play skills at the young age of 25-26 months. 
A glimpse into what my dreams were when I found out I was pregnant with my second child, of what all parents dream about for their children.
A dream that was temporarily taken away from us, with occasional glimpses of what can and will be someday. 
Someday, we will conquer Autism.  It may not be in the form of a cure and it doesn't mean that all will be ok every minute of every day, but we will give all that we can to Brycen to help him overcome some of these things that should be joyous in his and our lives...like playing with his sister.

17 minutes of pure sweetness and joy!

Saturday, May 21, 2011

"The Wheels on the Bus...

...go round and round, round and round, round and round.  The wheels on the bus go round and round, all through the town!"
A couple years ago, Brycen quit doing the actions to songs.  We have him on video when he was about 1 1/2 doing "Itsy, Bitsy Spider" and "I'm a Little Teapot" and he loved it!  Shortly after his second birthday, he lost interest in and the ability to do the actions, as well as the attention span for even a one minute song.  He would scream at us when we wanted to sing a song to Aubree who was a baby at the time.  Slowly over these last couple years, he has started to tolerate us and her singing and doing the actions.  Occasionally, he will smile and attempt an action as well.  About a year ago at his old school, he would clap to a song during circle time.  His teacher at this school informed us a couple months ago that he was actually wanting to do some actions to "Wheels on the bus" especially the verse about the baby.  Ironically, he not only has been scared of buses for the past year and half, but he also had two new baby cousins on the way when she told us about this (see below).  Not sure if it was a sign that he chose "Wheels on the bus" and the baby verse to start participating in then. 

To tie this all together, the teacher and associates re-introduced the bus to Brycen recently.  If you recall, about 1 1/2 years ago, the old school participated in an evacuation drill and left the backdoor of the bus open which resulted in Brycen afraid of buses more than likely due to the loud buzzing noise that comes from the backdoor being left open.  Earlier this school year, Brycen's school had a bomb threat and the entire school was bussed out to local churches including Brycen and his class.  It was a scary moment for him, not only having to ride on a bus that he was deathly scared of, but the change in routine...and for me, not knowing where he was at first when he didn't show up on the school van as scheduled.  A few weeks ago, the school practiced an evacuation drill again and Brycen was able to participate with some stress.  Recently, the teacher and associates decided to work on riding the bus with a few of the preschoolers including Brycen to help him overcome his fear.  Earlier this week, he sat on the bus and rode around for a few minutes with some stress again.  Just yesterday, they took him for a longer ride to get ice cream with the other kids and the report was that he did great, no problems and even sat in a seat by himself! 

Brycen & baby Jocelyn
Brycen & baby Abigail
Babies...we were so nervous to introduce Brycen to his new baby cousins when they were born.  He really has not been around babies since Aubree was born and when he regressed.  We were nervous on if he would become upset when they cried, if he would be aggressive with them, etc.  We were so ecstatic to see that he was thrilled about them!  He wanted to hold them (and he did so appropriately with both arms!), look at them, touch them nicely, kiss them, and hug them.  He also requested "baby" quite clearly and pointed to his lap on the couch when he wanted to hold Abigail one time!  It was a great sight to see and I wanted to share these pictures with all of you...aren't they adorable!!  I'm sure their parents were also nervous about having him around their newborns, and I appreciate them stepping back and letting him be involved by holding and touching them.  It's experiences like this that really show how affectionate and loving Brycen can really be!

Friday, May 20, 2011

"Autism Rocks...

...and rolls and spins and flaps and loves and laughs."

I saw this quote recently on multiple websites/blogs but can't seem to find the person that said it.  This really describes Brycen right now...literally!  For the past few weeks, he has been on constant stimming-mode, very aggressive, not transitioning well, not accepting change, etc.  When we first started his medication a few months ago, many of these things decreased.  We know that these things are never going to disappear, but our goal is to minimize what we can so it is not interfering into his daily life as much.  At his last appointment with the child psychiatrist, we discussed the option of increasing his dosage as summer approached knowing how routine changes can affect him.  It's not that I want to continually rely on medication to help him, but it's obvious that he benefited from starting the medication many months ago.  Well, with the recent changes in our lives, we are starting to see increase in the stimming again, as well as his irritability and not accepting the changes he was accepting before.  I put a call into the nurse and she just called back to say it's ok to increase to 6mg instead of 4mg of the Fluoxetine, so we will be starting that tonight already.  It would be great if we could go back to 4mg after we are moved and settled into a new routine, but if not, that's ok too.

The plans for our move are coming along well!  I am taking Brycen to a new therapy clinic in the new town next week for an evaluation, and will also be meeting with the new school to discuss plans for that change.  We have found a rental house in town so we will be officially moving over June 14/15.  His respite and SCL services will be staying the same, and the paperwork is already moving forward for his transfer to Jackson County Case Management.  I still have multiple places to call regarding his services, but these were the most important ones for him so I'm feeling accomplished at this moment. 

Over the last year, I have had many people ask me the question about why we choose to continue with the moves with my husband's company when we know that Brycen has a hard time with change.  Honestly, my answer varies on the day.  Sometimes I think it is not the best for him, and other days I feel like throwing change at him is just preparing him for the real world.  I know that my husband's job provides us with financial stability, a family-friendly company, good insurance, and in several years will give us the opportunity to be settled in one town.  Every family makes sacrifices to better their lives and this is one that we signed up for before Brycen was even born, which means obviously before he regressed and was diagnosed with Autism.  We choose to continue on this path knowing the final outcome will be great for all of us, especially Brycen.  The changes that come along the way will present him with many, many challenges...but challenges make us better people, including a child with Autism.  Life doesn't always go as we would like and I cannot protect him from the inevitable change he will face throughout life, so I feel that preparing him with regular change now when he is young will help him adapt and accept later in life. 

Autism and Our Family

"Autism"----It's one word that can change the life of a child and family in so many ways. Autism Spectrum Disorders are being diagnosed at a rate of 1 in 68 children currently. If you do not already know someone that has been diagnosed, the statistics say it won't be long before you do.

Our son developed typically until around the time he turned 2 years old. We heard words...we saw him play with other kids...we watched as he played with his toys appropriately...we made eye contact with him...overall we understood his wants and needs. In a matter of a few months, that was all taken away from him. He began lining up toys, lost all of his words and signs except for one word "ball", ignored other kids, could not sleep through the night, lost eye contact and the ability to follow directions, and he had no way of letting us know what he wanted or how he felt. It was heartbreaking to see something happening to our child that we couldn't stop!

Brycen began receiving home therapy 1-2 times per month for about 6 months before we realized it wasn't just developmental delays. We knew it was Autism...we just didn't want to say it outloud to anyone. He was officially diagnosed with Autism (classic form and regressive), as well as Mental Retardation in August 2009 by the University of Iowa Hospitals and Clinics.

We continue to learn as we make our way through this journey with Brycen and we will continue to share this journey with you on this blog! The blog has been a great therapy for us to be able to vent our frustrations and struggles with accepting that we have a child with special needs, while sharing how blessed we are to have a child teach us what life truly means. It has also been a great way to inform others of his progress and changes over the last couple of years.

Thank you for your support of Brycen and our family! We hope you are able to learn something through this blog no matter if you are a parent of a child with special needs or a neurotypical child, a teacher or therapist, a family member, or just someone that is interested in the journey that a family goes on as they learn their child is battling a life-long disorder.