"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

Monday, January 26, 2015

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.




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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.