"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, April 9, 2011

A glimpse of what lies ahead for Brycen in the coming year!

I've had a rough week emotionally. I actually chose to stop reading things about Autism this week and am taking a break from the "in your face" articles and websites that just make me feel sad. While I know we are doing our best for Brycen within our living area and financial means, I don't think I will ever feel like I am doing enough for him!


I took the opportunity this week to talk to his speech therapist at the hospital about increasing his sessions. Currently, he goes to therapy two times per week for 1/2 hour each with Mondays being a co-treat session with OT and Speech, and then Wednesdays is only with speech. I had been reading about children going to hours and hours of therapy a week (and I'm not even talking about the ABA stuff, just OT/Speech/PT and other therapies) and it made me feel the need to re-evaluate where we were with him. He obviously has made some progress over the past few months and with the addition of his communication device, I feel like we need to start pushing forward and testing his ability for more. The speech therapist agreed to extend those two sessions to 45 minutes each and we did discuss possibly adding on a Friday session. She needs to get a doctor's order for the increasing frequency of seeing him (insurance purposes of course!), and is going to discuss having OT do the same and see him two of the days instead of only one each week. Talking to her reminded me that it wasn't just me that was holding him back in session time, but it's his ABILITY to do that. He has a hard time with attention span and staying focused, and while we feel this may be getting better, we know it will always be an issue with him so he will never be the child that can withstand hours of therapy a day. I have read that some people say that their children can withstand this much therapy because it's also play time for them...but Brycen honestly prefers to play alone or in his own way. He likes for us to play certain games with him, but he can be very content to stare out the window at cars or turn his bubble/sensory toy over and over for an hour. Who am I to say that he can't do those things he enjoys and instead be required to do more hours of things he just doesn't always seem happy to do for that timeframe?


In addition to attempting to increase therapy, we are also preparing for his IEP on April 26th. Mike might have to work due to a co-worker being on vacation that week, but I am so confident and happy with this school district that it doesn't even scare me to go at it alone. Pretty much everything that will be discussed that day has already been touched upon during his conferences and other meetings/paperwork over the last 6 months. It is so nice to work with a school that takes education and special needs so seriously!!


My mom, Brycen, and I went to visit the Special Education classroom yesterday afternoon after Brycen returned home from pre-school. While Brycen will be placed in a general education room for the majority of the day in kindergarten, he will also have a Special Education teacher that will pull him out for specifics (and she is also his teacher for Extended School year this summer). After meeting and observing the teacher on Friday, it is obvious that she knows what she is doing and loves what she does! She even has a therapy dog that comes to school every day with her! She explained a basic schedule of his day while in kindergarten and it's split between group time/recess/meals/centers/music/PE with the general education room, and then a few times throughout the day where he is pulled out to work on specifics like their new pilot program, Teach Town, and writing/math. We are pushing for an associate to be with him also throughout the day for many reasons including he is not even close to potty-training and still wearing pull-ups, as well as needing help with transitions, social skills, and other settings that could bring on behavioral issues.


He will continue to have individual sessions with the school's Speech Therapist (though the minutes allowed each month will be decided at his IEP in a couple weeks) and is currently being re-evaluated by the school's Occupational Therapist. As you probably remember, he was evaluated back when he started 3 year old preschool in the old town, but as he is getting older it's becoming apparent that he is behind and needing help in more and more areas. The old school said he didn't have enough issues to warrant them funding OT during the day which is why we seeked out the hospital over there to do some OT sessions. We continued the OT session at the hospital in this new area, and are now just getting around to asking the school to do the re-eval so he can possibly see an OT throughout the month in school too.


While I do believe he is behind in areas that Physical Therapy would work on, I know those are the least of what he needs to work on. I may look into an evaluation through the hospital in the future, but I really just want to concentrate on him being able to complete daily living tasks that require his fine motor skills and of course increase his communication skills as much as possible.


I look forward to what is to come with Brycen over the summer and next school year! I always hope for growth and more understanding of what he needs on a daily basis, but I really just want him to be happy, healthy, and able to have opportunities available to him to learn and adjust. He has an amazing team of people surrounding him!!

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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.