"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

Friday, July 8, 2011

Setting and Achieving Goals

Everybody sets goals for themselves and their lives, right?!  It helps us learn, grow, develop, and succeed in life.  Setting goals in Brycen's life are very different than setting goals for myself.  Since Autism sets the stage for not knowing when or if he will meet certain developmental milestones, we have to be careful with the goals we set.  We don't want to set the goals too high and then be disappointed with the outcome, nor do we want to set them too low and be underestimating his talents and abilities. 

Brycen's entire life consists of teams...team of therapists, educational team, home services team, team of U of I doctors, etc.  Every time I sit down and think about how many members are a part of Brycen's entire "team", it's overwhelming.  Every year the "team" gets bigger and there are more people to meet with, more paperwork to fill out/sign/file, more appointments to make, and more data to collect.  In our situation, the team also keeps changing every time we move which can definitely be overwhelming.  On the other hand, we get more opinions, different suggestions, and various opportunities to help Brycen succeed in life which I see as very beneficial. 

I want to stop there and explain what I mean by "succeed" for Brycen.  When I use this word, I am meaning I want him to live life to the fullest of his abilities; I want him to be healthy; I want him to learn; I want him to be able to live in this world without being judged; I want him to do things he enjoys; I want him to love and be loved; I want him to contribute to the world in some way; I want him to be able to care for himself in some ways, but in others to always know we will be with him to help.

When Brycen began regressing and was ultimately diagnosed, I threw out the "What To Expect..." books because it was just too much to see how far he was behind each month.  I actually chose to rarely look at these books even for Aubree because I didn't want to base our life on comparing her development to his lack of development.  Every time that Brycen meets some developmental milestone now, I find myself wondering where this falls on the charts.  I will research the milestone to see how far behind he is not to be upset with the results, but to see how far he has come in the last 2 1/2 years since regression.  When he was turning 3 years old, he was showing communication skills of a 14-16 month old.  We know that is higher now, though I do not have a new estimate since he began using the communication device and began verbalizing more sounds recently.  The way I look at these findings now and see the charts is completely different than 2 years ago, and shows that we are moving further along with accepting the challenges that Autism has presented us with. 

We recently shared in the last several months how Brycen began recognizing his ABC's and was attempting to verbalize them as well.  We shared how since Brycen received his Alt-Chat device, he is attempting to imitate far more sounds and words especially the names of colors.  Just last week, we shared how he is tracing letters, specifically we are working on the letters in his first name.  It has only been a little more than a week since we began focusing on this area, including his OT and his teacher in this new skill.  Just this week, I shared the goal I had set for Brycen pertaining to writing his name independently and that I would like him to be able to do this before January 1.  Originally I was thinking before school even started in August, but again I did not want to feel any disappointment if August came and went, and Brycen was not even close to doing this.  Writing your name is a skill that is so necessary in life...whether it is putting your name on homework or tests, or signing a check at the store...this is a skill that so many of us take for granted!  I want Brycen to succeed in this area, so I didn't want any feelings of disappointment to get in the way of that success if I set the goal too soon.  So that is why I decided for January 1.

In ONE WEEK, Brycen is already almost meeting that goal I set for him!  There are some things that he needs to work on for months or even a year before he has come close to conquering them...and then there are some things that come easily to him once they are being worked on.  Below you can see where he wrote his name...with verbal prompts from me.  I told him to write "B" without even touching the paper or making any gestures...and he did...then I told him to write "R"...and he did...and so on.  My heart was racing as he was doing this!  No tracing involved, no examples on a paper nearby....only my verbal assistance with what letter was next!  My baby boy that doesn't even turn 5 until the end of this month is almost able to write his name legibly and independently!  I never would have guessed two years ago that he would be able to do this before kindergarten!  I guess we really underestimated him in this area.  He continues to not grasp the utensil as needed so of course that has been a goal with OT for awhile now, but honestly that is not a concern for me as I see him working so hard to conquer this milestone. 

FYI: After researching this online through multiple websites, it looks like my baby boy is actually catching up to his peers in this area, and possibly even ahead of some of them!!!  This special moment reminds me it takes a team of people to help Brycen set and achieve these goals.  I want to make sure to give credit to all of those people that have worked hard over the last year in this area...his old school while working on "Handwriting Without Tears", his OT and Speech therapists from the last year at both clinics, his new teacher this summer who he looks forward to seeing each time.  Each of these people made this possible...and will continue to help Brycen succeed in life as we continue to set new and challenging goals for him in the coming years!

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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.