Advocating for Brycen

First of all, this post is NOT meant to offend anyone or to speak ill of anybody that works with Brycen.  Ironically, my "give thanks" post for Day 4 of November on Facebook this morning was to say how thankful I am for everybody that has worked with Brycen in the past, present, and will in the future because he would not have as much success as he has if it wasn't for the entire team that surrounds him.  With that said, I am very upset today.  Typically when I am upset, Mike is here to be the calm person but it must show something because he is upset as well with this situation.  Again, I am not writing this post to be negative towards anyone that is a part of this situation, but this post is meant to ADVOCATE and INFORM about my son and his abilities.

I understand that not everybody that works with him today has understanding of how far Brycen has come.  That is the point of this blog...to share his progress or deficits.  We are very involved parents with Brycen and his services and I expect to be updated as much as possible as well as I have expectations of myself to also update those who work with him as much as I can.  I want an open and trusting relationship with everybody that surrounds him.  I want those people to also become advocates for him and for all others with disabilities.  I hope that everyone that works with Brycen can learn something new about Autism.  Once again, that is why I am writing this post.  I need to emphasize this!

At school, they do frequent fundraisers to raise money for a parent committee that puts on events/activities throughout the year (this is my understanding of it at least).  Though we do not have a lot of money with being a one income family, we try to support the schools our kids attend as much as possible because we know how important a good education is and how much schools rely on assistance from the parents.  The recent fundraiser consisted of the children drawing/coloring a picture that could then be put onto multiple items to be ordered with proceeds going towards this committee.  A wonderful idea!!  We already have an annual tradition of creating a snowflake ornament for our own Christmas tree and the grandparent's trees with a meaningful picture of the kids during that year.  I thought that using this fundraiser to do something extra special for the grandparents would be a great addition to gifts this year and I was so excited about it. 

When Brycen's picture came home, I immediately noticed how not much resembled Brycen's skills in this area.  A year ago, it was very difficult to get him to even sit and color at all.  We encourage drawing at home a lot and frequently have pictures taped all over our house of what the kids have made.  It's not that the picture was bad at all...it was very colorful and cute of a fish.  But the details on the picture were obvious it was not Brycen's doing.  Brycen has difficulty right now with writing the letters of his name smaller than two inches, but this picture had a hundred or so very small circles as the scales on the fish.  The colors on the fish were in the lines...Brycen prefers to scribble all over the picture and though he tries to stay within the area of the picture, he has never understood staying within lines.  I knew immediately that he received some (a lot) of help with this picture and that disappoints me because I want to showcase what he can do...not what someone else can do.

The "pictures" my son draws or colors are perfect to us!!  I'm not sure if the people that were working with him on this project though that we would want something that looked more like what other kindergarteners would have, but I would hope we have set the stage this year to show that we are so content with any progress Brycen makes.  Do I need to remind people that he has REGRESSIVE Autism?!  He used to speak, used to color, used to play appropriately, used to interact with peers and he lost ALL of it...so any step we can make towards that again is a HUGE step in our book.  We aren't here to make Brycen into the next President of the United States or a talented brain surgeon.  We want Brycen to be Brycen...and of course encourage him to continue to succeed with the abilities he has.  Brycen is able to do many many things...more than we will ever know because communication is such a key part of most abilities and unfortunately communication is his biggest obstacle so he can't share with us what he knows.  I don't want Brycen to go with the flow...I want him to be challenged using the skills he has to overcome the deficits he has. 

We recently learned he can draw a simple train.  WE had to think outside of the box to realize a train consists of mostly shapes he can draw.  So we encouraged him to draw using this knowledge...and lo and behold a train came from it!  WE need to adjust our thinking...WE need to encourage him...WE need to advocate so he can be the BEST BRYCEN HE CAN BE.  And if that means he could only handle a few scribbles the day this project was completed, that's OK.  That's valuable to us...that depicts who he is and what he can do.  Whether someone else things that is imperfect, then that's their problem.  Obviously you can tell we will not be ordering an item with this picture on it as wonderful of an idea as it is.  That's unfortunate because we were willing to spend the little money we have on this fundraiser too.  But I just can't fathom putting Brycen's name on something that is not his work...something that would be a part of his grandparent's kitchen or living room for years and years.  Maybe not all parents feel this way, but this is how we are.  We love our children and the uniqueness they bring to our lives whether it's a scribble or not!

We are not only Brycen's parents but we are advocates for he and many others with disabilities.  A key to working with those with disabilities is to acknowledge they have some deficits/differences and then to search for their talents and abilities to help them work through those deficits/differences.  Heck, isn't this the key to working with anyone?!  Nobody is perfect!  I am here to advocate for my son for the rest of my life.  It's not a paid position like my old job when I worked with others with disabilities...it's a volunteer job that gives me far more than I could ever receive from a paycheck.  Because of Brycen, I have passion, motivation, patience, and emotions that I never knew I could have.

WE THINK BRYCEN IS THE MOST PERFECT BRYCEN HE CAN BE!