"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

Wednesday, May 11, 2011

Stimming: Why do I always feel the need to explain?

Almost two years after Brycen's diagnosis and I still feel the need to explain constantly.  Whether it's to family/friends or strangers, I feel like every single day (sometimes multiple times per day) I need to explain the reason Brycen does what he does.  Most of the time, it's the stimming that I am explaining.  Whether it is his screeching/humming or his rocking back and forth, Brycen is ALWAYS doing something.  Rarely is he still or quiet.  When dealing with so many behaviors and symptoms related to Autism, as parents we are forced to prioritize what to work on and what to let him just do.  I understand that some people may not agree with letting him stim, but since this is his way of calming himself, I don't think it is ok to expect him not to do this at all.  If you choose to go on a walk to help you calm down, I don't have the right to tell you this is not ok.  It's just how he is programmed.

With that said, I have to admit that it can be embarrassing when he stims in certain ways.  Such as when we were at the funeral home last night for a visitation.  As the volume in the room increased from more people conversing, Brycen compensated by increasing his humming and screeching.  Not exactly the most appropriate place for this to happen especially with a ton of strangers around that may not know anything about Autism, but considering he was calm and sitting on a chair with no problems while doing this, I had to prioritize on what I wanted.  Hitting and running around, or loudly making noises?? 

One of his newer stims is banging his fork on the table.  He tends to do this between bites of food and while I don't like him to do it, I'd rather have him eating and sitting at the table with everyone while banging instead of refusing to eat or constantly getting up and down from the table. 

He also tends to run back and forth in the house and jump.  I know most people do not allow running in their house, but we allow this because it's not like he is racing around intentionally.  He is seeking some kind of stimuli that he is able to get from running in a pattern from room to room. 

Like I said, from the outside perspective these things may seem wrong or annoying.  As the parent that deals with this 24/7, I am telling you that we choose our battles with Brycen.  I would expect if someone had an issue of me allowing him to do something in their presence that they didn't agree with, they can either leave or ask us to leave.  One of these days I hope I can explain myself less and less, but when I get those "looks" or when I witness someone trying to stop Brycen from doing things that I don't consider harmful, it's necessary to explain not only for advocating for Brycen but for educating. 

Parents need to choose their battles with all children as no child is perfectly behaved (sorry to burst your bubble if you are a parent that thinks this!), and with Brycen it just might be that we have more battles presented to us on a daily basis to choose from.  It's not that we expect less from him, but our expectations need to be a little different and modified to what his brain allows him to understand and control.  Not only are we learning about this every day, every week, and every month...but everyone around him needs to learn this if they want to be supportive and involved in his life, and the rest of the world needs to understand because it will continue to be right in front of them no matter where they go because the statistics continue to rise.

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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.