"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

Saturday, June 5, 2010

Been one of those days...


It's really been a typical Saturday. Brycen and I ran a couple errands this morning before Mike went to work. He waited patiently in line at both the post office and Fareway (which should actually translate to a FABULOUS day!), would say "bye" to the lady at post office, but refused to say "bye" to the cashier at Fareway whom he sees quite often (unless you count "ahhhh" as saying "bye). He lined up toys most of the morning, shuffled them around a bit, looked at a train book from the library with Daddy before he left for work (which was eventually taken away due to throwing it around), sat on his sister a few times, laughed uncontrollably for some reason I will never know, jumped up and down while flapping his arms while watching a video, and ran back and forth from kitchen to couch for about 10 minutes straight. All before lunch time at 11:20!


Just a typical day in Brycen's active world. He hasn't been extremely aggressive or stimming a lot. He actually fell asleep at nap time, so I had about 45 minutes of peace and quiet which is rare with him home. He even said word approximations for both "Mama" and "Dada" this morning when prompted (we worked on this a lot last night and had to show off to Daddy; note they were prompted MANY times and Mama sounds more like "baba", but it's progress)!


So, why am I having one of "those days" where I am sad and I look at him with tears in my eyes, wondering "why"?! I am never going to understand this whole grieving thing! Just when it seems like acceptance is around the corner, I get depressed and anxious, wondering about the answers to those gazillion questions I have: how did this happen to him, did I do something wrong, what does the future hold, will he learn to communicate effectively, can I protect him from those people who don't understand him, will he have a best friend some day to share secrets with, what will happen when I am no longer here to fight for him and care for him, etc.


So I decided to turn to the Internet for some uplifting stories, research, pretty much anything to remind me of how good I have it and how much hope there is for children like Brycen. I ended up on YouTube, watching videos of Autism Awareness and parent's stories of "recovery" (I say that loosely, not because I don't believe it CAN happen, but I think most parents of a child with Autism will not fully believe this until it happens to them).


I found this fabulous music video of Mark Leland performing his song about Autism called "Missing Pieces." I know I have heard it before, but I think after hearing this song and actually LISTENING to the words...words cannot express how it made me feel! Not saying it was a good feeling or a bad feeling...but it just made me FEEL! I know it's about 5 minutes long and you may think you don't have the time to watch/listen to it, but PLEASE DO...Do it for Brycen and for hope for all those other children out there like Brycen!

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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.