~Welcome to Brandy's world!~
This page is designed for and dedicated
to Brandy, a bright cheerful 8 3/4 year old autistic girl with emerging language skills. To look at Brandy, you couldn't notice any difference from any
other child her age. She is pretty, very
healthy and energetic,and loves
attention. However if you continue to
observe her, you will notice some of the
typical characteristics of autism,
(hand flapping, putting things in her
mouth, dangling objects,and very little language
). Brandy seemed to be developing
normally until she was 15 months old.
She had a vocabulary of about 10 words,
and was beginning potty training. Then
everything came to a halt. She failed
to respond to our attention, stopped
pottying, talking, and playing, We were
horrified!!! When we spoke to her, she
acted as if she was deaf. We had her
hearing tested, first outer ear, then
full range auditory, brainwave (sleepy
EEG), and that seemed normal. We
proceeded to a neurologist who had major
testing done. This testing included:
MRI, EEG, Fragile X Biotinidase,and full
bloodwork including Blood Amino Acids.
The results of all tests proved only
what conditions she didn't have. During
this time we enrolled Brandy in Easter
Seals Early Intervention Preschool
Program, and she began to receive
speech, occupational, and physical
therapy. The neurologist came to the
diagnosis of "Infantile Autism of the
Regressive Type" (his outlook for her
developmental future was bleak at best).
Again, we were shattered. Brandy had
uncontrollable tantrums, would only eat
a couple of foods, and banged her head
all night. We got very little sleep, as
we had to keep her in our bed to prevent
her from hurting herself. Easter Seals
did not have the experience with
autistic children, and although they
were
fantastic in their efforts and concern
for Brandy,the therapists would
take her to the sensory integration room
instead of trying to work with her. The
teacher just tried to keep her from
hurting herself and other children. At
the age of three she no longer qualified
for Easter Seals, and was ready to be
assimilated into the public school
system. Then one day we were at the
health food store browsing for vitamins
that stimulate the brain, and stumbled
across a publication which describd a
vitamin/herbal combination that was said
to help neural pathways, and aide in
conditions of autism. We figured since
the neurologist was considering putting
her on drugs, we should try the vitamin
combination. We purchased the
book, the vitamins, and created a daily
routine for her. Within a month, she
was eating most everything that was put
in front of her, and had begun to
establish normal sleeping patterns, with
minimal head banging (and best of all,
in HER OWN bed!!!). Brandy received a Behavioral evaluation and began to receive behavioral and speech therapies from a nationally renouned Autism services provider, but we noticed that her negative behaviors were increasing. After observing the therapy sessions, it was concluded that the aversive nature of the therapies was contributing to her negative response. We immediately terminated services with that facility. Brandy received another Behavioral and Language evaluation from Building Blocks Inc. and began to receive behavioral and speech therapies from them. She also received occupational therapy and physical therapies from independent facilities.
Brandy's improvement in attitude was almost immediate, but correcting the damage from the negative therapies was a long hard battle for all of us. With a lot of patience and hard work she began to follow directon with much less resistance, and a LOT less tantrumming! We were very pleased with the way she was progressing. Everything was going very well....until our medical coverage was changed, and no longer covered therapies for Autism. All outside therapies were suspended at that time. Brandy attended an Autism pre-kindergarten class for 3 years at a school in our district. The class was small and had a good staff to student ratio, but the curriculum was not conducive to positive development, and there were many staff changes. We (Brandy's parents and private therapists) battled with the school IEP team to provide an appropriate education to meet Brandy's specific behavioral and language needs. Sometimes we battled alone. However, the Florida Family Network on Disabilities taught us how to advocate for Brandy's needs, and we learned to use the powerful tools of communication and networking with parents who have special needs children. (Thanks Wilbur!!!) In 1998, Brandy received an independant Behavioral Assessment from "Behavior Analysis and Therapy Inc."(Thanks to "The Department of Children and Families") The assessment stated a need for behavioral intervention and language training. Brandy immediately began to receive behavioral training in our home, and began to show a dramatic improvement in her verbal response to prompting with reinforcement. In the spring of 2000, we received Medicaid and Medwaiver for Brandy, with minimal limits on the quantity of therapy she can receive. Since that time, Brandy has been through much behavioral and language therapy. She is learning to sign in Exact English, to verbally respond to flash cards and verbal cues, and to follow directions. Her behavioral issues have been targeted, and with patience, training, and God's help, she is moving forward daily. This year Brandy is attending a typical kindergarten class at the elementary school in our own neighborhood. She has an assistant who helps to keep her on task, and assists her with things that are new and difficult for her. She LOVES it! Now Brandy has the opportunity to make friends and socialize with children who can communicate with her, and she is doing very well.
~UPDATE~
12/13/2002 Hi! Sorry it has been such a long time since our last update. A lot has happened in Brandy's and our lives! We moved to Pennsylvania in June of 2001, for a better environment for Brandy, and hopefully a better chance at a free and appropriate education. All the information we found prior to our move led us to believe that we were going to receive better everything... Boy were we in for a surprise!!! It is harder to access many of the resources we took for granted in Florida. Medicaid waiver, in home therapies, and one on one aides in school,are just a few of the things we cannot seem to regain for Brandy. Look for more soon...we are back!
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~Thank You everyone for the Excellent awards!~
~Some LINKS We have found Useful~
Family NETWORK on DISABILITIES of Florida
IDEA amendments 97
BRANDY'S NEW PAGE!
augmentative communication ~ P.E.C.S.
Speech and Language Aids
National Info Center for Children and Youth with Disabilities
Division TEACCH
