"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

Tuesday, August 30, 2011

My Son's Voice

I think it's fitting that the 200th post on Brycen's blog is about his "voice" considering communication is where he has the most deficits from Autism.  In a way, I am amazed at the number of 200, but then again there is so much to share about Brycen and how Autism affects us, that I'm a little surprised that number is not higher!

When Brycen was initially diagnosed, I wasn't even thinking about communication devices.  As you all know, he had quite a few single words and phrases prior to regression, so I guess I assumed once we began getting him the therapy he needed, those words would come back and then some.  Well, that's not how it worked for Brycen.  There are still many words that he used to say that he isn't even attempting to imitate at this time.  More importantly, he still can't say many words spontaneously and will only attempt them if prompted in some way.  Then when he does speak them, quite a few sounds are missing so unless you speak "Brycen language" you probably would not understand anything he is saying.

A little over a year ago was when we first began discussing a communication device.  His first school brought it up during his IEP in May 2010, and the initial device they spoke of was very very basic.  It used multiple cards that had a picture on the front and back...and on the bottom of the card had a strip that would be "read" by the machine when the card was placed on the machine.  The cost was under $75 for this device and it's cards.  We just weren't sure about it and about the benefits of having one yet.  We researched different machines over the next few months and saw that studies showed nonverbal children who used a voice-output device were more likely to start verbalizing than children without one.  Research also shows the earlier you implement the device, the better the results are. 

Fast-forward to the next school year and a new therapy clinic.  The new speech therapist that Brycen began seeing immediately began using the Go-Talk with him during sessions.  He was still using basic PECS at school and some at home as well.  Brycen caught on fast to the Go-Talk 9 so we began discussing what the next step was.  The SLP brought in two different reps to meet with us as she felt that Brycen would outgrow most of the lower tech devices fast, and we both thought a higher tech device would be best since we can program it to keep up with him.  In January 2011, we chose to go ahead with the Alt-Chat made by Satillo.  He responded fabulously to it during our 4 week trial period and we were blessed to have insurance approve it with no hesitation.  On March 23, 2011, my son received his "voice."  It was delivered to the house in a box that we will keep forever!
Brycen with his trial device.

Since that date, like research said, Brycen has begun to imitate more sounds and words, and communicate effectively with the machine.  We knew that to make the most progress, it was important that the device be used in all areas of his life...therefore his device goes with him to school, therapy, is out at home for when he needs it, sometimes to the store, on overnight trips, to doctor appts, etc.  Brycen knows that machine inside and out!  He can navigate the pages to exactly what he wants to say faster than any of us. 

Using his device to play CandyLand with Grandma
Recently, someone commented to me about how protective Brycen is of his device and my response was "You'd be protective of your voice too!"  The Alt-Chat IS Brycen's voice.  It may be man-made, but it has the capabilities of doing the exact things that your voice can do for you.  Just like it takes a child years to gain verbal skills with different sounds, it's going to take Brycen some time to learn all that this device is capable of.  The possibilities are endless!  Just like you have to sleep at night to "recharge" your voice to be ready for the next day, we charge Brycen's device in the evening so it is ready for him.  I remember losing my voice many times while having a cold and it was very hard to function.  I could not answer the phone and it was FRUSTRATING!  The same would be for Brycen and his "voice" AKA device!

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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.