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When Kibriyyil ("Kibby") was just eighteen months old, he spoke fluently in sentences that were made up of five words or more. You can imagine our surprise when, returning home from the hospital with his little baby brother just a month before he turned two, he had only the "k" sound in "milk" remaining and didn't seem to know who I was. The events that followed can only be truly understood by someone who has experienced a child with autism, and it would take more than an article to explain to someone who hasn't. Needless to say, communication (or lack of it) became our primary concern for him -- even more important than controlling unusual behaviors or trying to understand why he did the things he did. We just knew that if we could communicate with him, all our questions would be answered. When his teachers in pre-school, kindergarten and first grade struggled with getting him to make eye contact and learn to point, we wondered why it was so important. Then in first grade they introduced him to the Picture Exchange Communication System (PECS) where he learned how essential pointing was, and when he could use the toilet alone because of one of those little pictures, it was like magic! When they battled with him for almost three years to learn imitation skills and practically gave a ticker-tape parade in second grade when he motioned along to "Head and Shoulders, Knees and Toes", I still don't think we had it quite figured out. During that same second grade period, when they introduced basic American Sign Language (something they were only able to do because he had begun looking at them and imitating their actions) we started to understand. I seriously believe that it was only at this point in time that we were finally aware of the significance of goals and objectives and knew exactly where the staff was going with our son's educational plan. We put our trust in his staff (as most "new" parents do) and followed their lead, learning everything we could as the journey began.
Then I attended a training program that is sponsored by the Florida Developmental Disabilities Council (FDDC) called "Partners in Policymaking" where I met a remarkable gentleman by the name of Tom Nurse and his beautiful daughter Shelby. Tom (who is now TILES Project Director at the Family Network on Disabilities--FND) and Shelby (a then very vivacious 6th grader who had been using a power chair since the age of three and had used Assistive Technology (AT) in a fully inclusive educational setting all of her life) gave us an intense training session on AT. Tom taught us exactly what AT is, and how it can be obtained, and introduced us to the services of the Assistive Technology Educational Network (ATEN). Shelby gave us a firsthand lesson on how AT is used in her day-to-day life and how it can be used to enhance the quality of life for our children with special needs who require certain accommodations to perform everyday functions such as moving physically from place to place, holding a pencil, flicking a switch, communicating their thoughts, wants and needs and so much more.
Kibby adapted to his "new voice" almost immediately because of the steps taken by his team to prepare him with the necessary skills, and his own hard work and determination to succeed. By the time we accepted delivery of his own personal device he was a confident "user" of the equipment. I can't begin to tell you how anxious we were to have a method of communication for him, but our anxiety was driven by Kibby's needs which, along with his mastery of a method of communication and his capability, were the most important factors in this entire process.
(Written by Kibby's Mom -- Sylvia Miller) More information: Assistive Technology Educational Network (ATEN) FDLRS - Florida Diagnostics and Learning Resources System
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An
A T Experience
Suddenly
our little boy was nine years old and we became more aware of just
how slow a growing process this had been. The time just seemed
to have flown by. Now Daddy and I feared that our son would
suddenly be all grown up and still not be able to communicate all
of his wants and needs.
I
was overwhelmed with the possibilities and opportunities that had
suddenly become available to our son and so I discussed them first
with Dad and then with the rest of "Kibby's team".
There is the part made up of Dad, myself, his older sister and younger
brother (who also has autism but whose interaction with Kibby is
as crucial to his communication needs as Kibby's need to communicate
with his non-disabled peers), then there is the extended "team"
that includes Kibby's teacher, paraprofessional, speech and occupational
therapists. We began to work with Kibby and observe him more
closely. We all studied his methods of communication and how
he interacted with all the people he came into contact with.
Long- and short-term goals and objectives were set for him that
focused on improving his ability to communicate by using several
methods until we found the ones he was the most comfortable and
proficient with. By the end of third grade he had pretty much
mastered PECS and by fourth grade was carrying not one, but two
PECS books with over two hundred pictures as a means of communicating.
He was becoming frustrated at not being able to find more of what
he needed within the covers of those two PECS books. So, we
knew something needed to be done to eliminate his frustration.
I
revisited the ATEN brochures I had received from Tom Nurse and found
several augmentative devices that were able to accommodate PECS.
I presented my thoughts and my findings to Kibby's "team".
We were all in agreement that it was indeed time to move him up
to the next level, and so the process began. We requested an Individualized Educational Program (IEP) meeting to discuss
Kibby's communication needs and our plan to incorporate AT into
his daily routine. At that time we also formally requested
a speech and language evaluation. Once that evaluation was
conducted, a series of system trials took place. During these
"system trials" Kibby was required to show his usage and/or
mastery of several different devices over a period of time.
The purpose of this, I was told, was to make sure that the device
selected for him was the most appropriate for his needs and for
his level of skill. Kibby rapidly made his way to a Dynavox
augmentative device and easily adapted to the DynaMyte 3100.
The data that was collected from the system trials, and the documentation
provided by the evaluation team and Kibby's own "team"
members made it the perfect choice. Our FDLRS representative
obtained a "loaner" device for him through ATEN until
his personal one arrived from the manufacturer, and though the training
programs ATEN offers were not available to us at the time these
changes were occurring in Kibby's life, we were provided with the materials necessary for us to program the device ourselves, and
we always had a FDLRS or ATEN support specialist to call on if we
needed assistance. 
I
am pleased to say that through team effort, assistance from FDLRS
and ATEN, and following a process, we were able to provide our son
with the assistive technology that is not only adequate, but a perfect
"fit" for his communication needs. Though the "road"
traveled was a long one, we were fortunate enough to not encounter
too many "bumps" along the way, and spent less time on
obtaining the device than we did arriving at the point where he
was even able to use one.
