Mrs. Bain owned Kids of the Kingdom Tutoring since 2005 but due to her own children with special needs and her student's inability to transition into independent learners, ELSK was born into existence. The following tells the story of her journey with her daughter's brain injury and the quest to find solutions to help her daughter and others become independent learners and not just compensate for their weaknesses.
On April 26, 1998, Colleen and Thomas Bain rushed their 11 month old baby girl, Shannon, into Children's Hospital of Philadelphia (C.H.O.P.). Shannon was sent there from her pediatrician after the doctor witnessed Shannon's eyes literally "dancing" around. Shannon had a very bad cold, double ear infection and was starting to lose balance whenever she moved around.
After being in C.H.O.P. for two weeks, the neurologist came in and informed Mrs. Bain that if someone was to have Cancer, than Shannon had the better kind of Cancer!! The docs informed her that Shannon most likely had neuroblastoma. The fact that Shannon's eyes were dancing around probably meant she also had Opsoclonus Myoclonus Syndrome. The two usually pair together but the docs wouldn't know for sure until they found a tumor. They did find a tumor after looking for it for two weeks and the tumor was quickly resected. We would later find out that OMS is 50% paired with a tumor and 50% viral based.
Colleen and Tom would unfortunately discover that the OMS was worse than the cancer itself. Being a very rare disorder that impacts only a handful of children around the world each year, little was known about OMS other than it would cause a brain injury if not treated immediately. Apparently, there were only two doctors in the world, at this time, that were researching and studying OMS. C.H.O.P. was privileged to have a doctor on staff that was familiar with OMS and had seen it a few times before Shannon. They were quickly assigned to their first of many neuro-oncologists at C.H.O.P.
OMS turned out to be an auto-immune disorder where Shannon's B and T cells (antibodies) were attacking her brain on a daily basis whenever she had a viral or bacterial infection. The doctors used immunosuppressant therapy to stop the attacks and successfully placed her "bad" antibodies into remission within three years of treatment using ACTH (steroids) daily injections. However, Shannon's brain did suffer from injury but Colleen and Tom would not know the extent of the injury as OMS is thought to injure at the synaptic level. In other words, even if Tom and Colleen requested a picture of Shannon's brain, the injury would not be visible because the injury is so deep within the brain structure. Functional MRIs could tell us cognitive measures but doctors are not supporting these tests other than clinical trials. We are going to the Amen's Clinic in December for SPECT imaging. That is another blog entry :-)
Shannon was treated with speech, occupational and physical therapies immediately because the OMS completely stripped Shannon of all her learning skills. Once a child that was able to speak, crawl, stand, sit and communicate as little ones do, Shannon was now held captive within a small body that lay lifeless unless she had great assistance from those around her.
Shannon made great strides from the onset of OMS through the years to learn to sit, talk, walk, run and even ride a bike! Her disability is considered a hidden disability because in most areas Shannon looks and acts like any other girl her age. However, once Shannon needs to use her learning skills to read, write and do math (memory, visual and auditory processing, logic, attention) Shannon then exhibits the impact of her brain injury. She is considered to have a Language Learning Disability - Mild that impacts her academically and in every day life.
Like every other parent of a child with disabilities, Colleen and Tom sought after every possible therapy that might "cure" Shannon's brain injury and allow her to learn to read, write and do math. They did help Shannon compensate through individualized programs that worked her strengths and avoided her weaknesses. At age 10, Shannon resided at about a first grade level in reading and beginning second grade level for math. Shannon had no fluency in reading and could not do any math mentally. Tom and Colleen, like other parents, wanted to blame the school. They could not understand why the school was not "teaching" Shannon and why they were not helping to "close the academic gap". Later, they would realize that the teachers were teaching but Shannon did not have adequate learning skills (memory, attention, visual and auditory processing) to internalize, retain, and retrieve new concepts or material. Shannon currently has a 4yr. academic gap and is being homeschooled as of October 16, 2008.
Colleen had tutored Shannon for years but never saw true independent progress. Shannon was not retaining and recalling information easily and sometimes not at all. This prohibited successful progress in learning because her knowledge base was sparse and scattered. For Shannon, her entire educational journey has been with the use of prompting and she never became independent of needing the supports of an adult. Because she did not show strength in any of her learning skills, she could not initially use the support of an adult to introduce material and then promote her own learning skills to build upon that newly acquired knowledge.
Colleen recognized that Shannon required cognitive and processing training. She discovered a researched based program called Processing and Cognitive Enhancement (PACE) and became certified as a provider and trainer. Shannon continues through this program as medical challenges continue to present themselves and delay completion. At the time of this posting, Shannon has experienced another setback medically and is being treated. Shannon is mid-point through PACE and beginning the Reading Program called Master the Code. Both of these programs support educational establishments. Neither compete with teachers. In fact, they help to make the teachers more successful in helping the student to learn.
Shannon will be the first to tell you that PACE has helped her learn to read (fluency). This is because the program has strengthened her auditory and visual processing and memory skills. She is able to remember and recall words. She is processing her auditory and visual perception much better now and her visual acuity (eye teaming) has been strengthened. Shannon was able to read "Enjoy the Show" on the movie theater screen. She screamed out "I just read that all by myself!!"
Shannon has a way to go yet and the important message for her to internalize is that she is perfect the way she is right now. She is no "less" than others because she has an academic gap and that strengthening her learning skills will improve her academic abilities. She will still have to close the gap after the cognitive training but with the skills to learn she will progress and show success academically. Because her skills needed to read and comprehend, read and remember, listen, attend, focus, spell, visualize and others are being strengthened, Shannon has the chance to become an active participant in the learning process at school and in life.
Shannon's present skill levels reflecting mid-point in the program . Pre-test measures reflect initial assessment from 1/08 prior to beginning the program. The Post-test measures reflect her recent assessment (taken in august). You can see the gains made in her learning skill set.
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