"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, May 7, 2010

There are wonderful people out there that care!

I have been blessed this morning with speaking with someone that truly cares about people and what is best for them! I heard back from the speech clinician at the local hospital about possibly working with Brycen this summer since he doesn't qualify for extended school year. While the first part of the conversation was not great news, she followed with some of the best news I have heard in a long time. Unfortunately, she does not feel qualified to provide speech therapy to Brycen as she mostly works with geriatric and swallowing issues...she said the last time she provided therapy to a child with autism was back in mid-late '90's. I was not upset with her for deciding this, as I appreciate her honesty and I respect her so much for realizing what is not her specialty and wanting the most qualified and best that can be found for Brycen. While during this conversation, she asked many questions about where Brycen is at now, where he started, his regression, etc...and she was so empathetic about the regression and validated my feelings of being scared that he will regress again over the summer. This is all from a woman that has never met me or Brycen and honestly does not know that much about Autism!
The next thing she said and offered to do is the most amazing part of this! She said she wanted to advocate on our behalf and make some calls herself to see what and who she can find to help us out. Wow! Again, what an amazing woman to offer to do this without even knowing us or getting anything out of this (just another example of how happy we have always been with the employees of the hospital!). So she called back shortly with a couple ideas. She said she spoke with a parent of a child with autism that is low functioning and that family enlisted the help of Buena Vista Univ. education department to find a student to help them out. Only situation with this is they probably paid out of pocket for this which is not in our financial means right now. She also spoke with the speech therapy dept up at the Spencer Hospital which is about 40 miles north. They work with mostly pediatric clients and the intern in the dept right now is in her master's program and actually wants to specialize in Autism! The best news, they are accepting new clients right now!
So shortly following this phone call (and saying many thanks to this woman that has shown more support for us than many other people in our lives), I called the speech clinic there and spoke with a very nice therapist that explained the process. At this point, we just need his doctor to fax an order for speech therapy and treatment to the clinic (so Medicaid insurance will cover since our private insurance does not cover therapies)and then they will call us back to get started. Yes, it is 45 minutes away...and yes it will take me away from being available for work 3 hours at a time...and yes, I will probably have to bring Aubree along for the appts...but what other choice do we have for him?! This is the most critical time of his development (or lack thereof) and he needs all that can be given to him...and it's unfortunate the school district doesn't see it that way. So, we will still fight for Medicaid to reimburse the mileage to us like they do for many other families that have to go out of town/state for appts and therapies...but even if they don't grant it, we aren't going to say no to this opportunity. This is our son and his basic living skills are lacking and at risk for not developing...any parent in the same situation would be doing this, if not more!

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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.