"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

Monday, November 8, 2010

Brycen's Goals for This Waiver Year

Since Brycen is on the ID Waiver, this qualifies him for an extra service called Supported Community Living (SCL). This is where we set goals up for the year, and staff work specifically on these with him during these shifts. SCL goals can only be implemented if the child shows deficits in areas that the typical child his/her age have mastered and cannot be oriented around things they learn in school. Therefore, this service is not designated as a "break" to the caregivers like respite is for. This service adds another person(s) in on teaching the child to accomplish certain skills. It's not just the staff that need to be working on these things to show progress, but the parents need to be dedicated also to working on the same exact things. My philosopy on this is: Consistency=progress...Inconsistency=waste of time and the state's money.

So, this year I have chosen to go about the SCL in a different way and through a different programming called Consumer Choice Option. I'm not going to go into detail with how this differs from an agency, but let's just say there are different options and CCO is the one we have chosen. My mom, Shirley, is going to be his SCL provider just like she is his respite provider. I firmly believe that parents should be picky about who their SCL provider will be because it obviously has to be someone that understands where the deficits are, is willing to learn how the child needs to be worked with, is dedicated to the consistency of the program, and of course has the best interest of the child at heart. My mom meets all of these areas, so she was the obvious decision now that we live closer to her.

Brycen really needs to work on many different areas to catch up with his peers, so it was really hard to focus on the areas we really wanted to see the most progress. Below are the 4 goal areas we are choosing to work on this year:

1. Brycen will make a choice with the aid of picture cards if needed (and hopefully a communication device soon!). Brycen will then follow through with his choices in an age appropriate manner with assistance from the staff (this includes taking turns, playing appropriately with toys, attention span, etc).
2. Brycen will have appropriate behavior in the community and will decrease the interventions needed by staff throughout the year.
3. Brycen will maintain his safety in the community by obtaining a form of ID (bracelet that will explain he is non-verbal and have contact information on it for us), will keep ID with him while in community, present his ID information when asked to with staff assistance, and identify people he can "ask" for help if needed while in the community. (This will probably be an ongoing goal to work towards, but you can never start this too early!).
4. Brycen will increase his independence with hygiene and dressing/undressing. He will wash his body/hair with first hand-over-hand assistance and decreasing to verbal prompts/modeling by the end of the year while bathing. He will complete 1 step of dressing (an article of clothing=one step) and then move onto Step 1 and Step 2, then so on as he accomplishes each. We will also be using picture cards to encourage him to pick out a shirt/pants/socks/pajamas by himself for each dressing.

As we were thinking about these goals and "testing" him in these areas, we noticed he has actually come a long way with the dressing and undressing. He is also willing to help more in the bathtub. We hope that as he can become more independent in certain areas, his frustration level will decrease and in return, the aggression will hopefully decrease. Right now, the aggression is our biggest concern and we think a lot of that stems from him not being able to communicate things and also his OCD behavior. If something isn't right, he thinks hitting will solve it or get his point across. As we increase his independence, this gives him more control over his environment and will hopefully teach him other ways to go about communicating things to us.

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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.