Children who slip through the cracks
Children from low-income families often are left behind when it comes to serving their individual needs. Especially if the child is deemed unpleasant or unmanageable. Recently most problems that children have in learning and interacting with others were blamed on the parent’s then later society. Fumento, Michael (June 19, 1999). Investors Business Daily. Business Journal,
What if the problems associated with Aspergers were merely a result of nature?
It would be similar to being born with a clubfoot, or other slight imperfection. Parents with children born with Aspergers or other types of Autism often wonder what they did wrong. In the case of Kayla Ellen, it was several years of family whispering, “this child doesn’t seem quite right.” Her empathy and social skills are almost non-existent, but she seems so smart.
A Brief History of Aspergers
Aspergers Syndrome also known as Asperger’s Disorder, is a severe developmental disorder characterized by major difficulties in common contact and limited as well as strange patterns of concentration and actions. Hans Asperger originally described it in 1944. Increased interest in the condition happened later in the 80’s influenced by Lorna Wing. Lorna Wing was a doctor with an Autistic child and began research on Autism and related disorders.
Asperger’s syndrome was added into the DSM-IV in 1994 following a large international field trial involving over a thousand children and adolescents with autism and related disorders. Volkmar et al.,1994. It has such a wide range of behaviors that it is very hard to diagnose. Kayla Ellen’s parents fought the system of doctors, psychiatrists and teachers for five years before getting a correct diagnosis for their child. This was only the beginning of more problems for them.
Kayla Ellen was known for her disruptive antics by the time she was in the first grade. She feared toilets in the lavatory. She would sometimes eat soap to punish herself for bad thoughts. She could be very cruel and hurt other people without regard for anyone’s feelings. It was clear that Kayla Ellen hurt inside, but the problem was how to reach her, and could anyone reach her?
Her family went in for counseling at Warm Springs Children’s center in Boise Idaho. The child counselors set up behavior plans. They would like to try a series of rewards and consequences for Kayla Ellen. Kayla’s mother said that everything worked for a while, but eventually Kayla Ellen would move on to another phase of her behavior. (J Mitchell, personal communication, March 19,2008)
Her mother once said that you never know what you’re going to get next when it comes to Kayla Ellen’s behavior. Sometimes you can correct one type of action to have it replaced with something far worse. Kayla Ellen picked things apart: she couldn’t stand stickers on her toys, or a chip in paint. Certain types of fabric make her twitch uncomfortably. The family sometimes feared going to sleep at night, wondering what would happen when Kayla Ellen got up in the night in the quiet house. Kayla Ellen does not sleep very well and she fears many things, she also is very destructive. She has limited social skills and often pops out with sudden unexpected rude remarks or repetitive noises.
Kayla is lucky in many ways: her family loves her and tries to do what is best for her in the whole scheme of her life. It is not always easy to like a kid with Aspergers.
Eventually the elementary school that Kayla Ellen attends demanded that something be done. They were not prepared to watch Kayla Ellen every second. Kayla Ellen’s mother did not want Kayla Ellen to attend a special school for learning disabled children. She felt that Kayla Ellen has mimicked behavior and being around children who were severely disabled would set Kayla Ellen back in her learning. She knew that Kayla Ellen had rights, but so did other children in school. She went back to the family doctor and he prescribed medicine used in treating Hyperactivity. The school like Kayla Ellen medicated, she was no longer a problem, she sat silently in her chair and didn’t make odd noises or twitch. The family however was not pleased with this turn of events and tried several more types of medication. They didn’t want a zombie for a child, they wanted a child that could manage herself better but retain her own personality. Eventually, the family and doctor found a medication that seemed to do the best for Kayla Ellen. Kayla herself said that she could stop herself from doing things she knew were wrong. Whether this is true or she just said it to please family members no one is sure. Sherman elementary thought with Kayla Ellen’s official diagnosis from Dr. Armentrout that she would qualify for a behavior monitor provided by Idaho. Someone that would walk her to the bathroom, and outside on the playground. Sometimes Kayla Ellen would walk off the school grounds by herself. The behavior monitor unfortunately never happened. Kayla Ellen’s mother could never find out why, even after multiple calls to the school. She was told, not enough funds, or we are working on this situation. Another year has gone by and the child is in the second grade. Kayla Ellen would benefit by someone keeping an eye on her. Someone who would help her identify un-acceptable behavior. Kayla sometimes goes through the motions of how to act, but these emotions are not really true to her, she is just trying them on to see how they feel. Several phone calls from the school were placed to the mother and father asking if they knew where Kayla Ellen was. Both parents have full time jobs, and cannot keep track of their child when they are at work.
What is the cost if this problem is not addressed? Kayla Ellen is only one child and her symptoms are not as severe as other children with Aspergers. One problem is children are trying to learn and are distracted by the antics of the Asperger syndrome child. The other is the cost to families. A lot of money has been paid to the Boise Children’s Home, for therapy, diagnosis, and medication for Kayla Ellen. There is also the toll on families. Kayla Ellen has three little sisters, which see Kayla Ellen as a role model. The attention that Kayla Ellen requires takes away from the attention that should be given to the other girls.
Advocates for Inclusion – Nampa Idaho
Started in 2001, it was regarded as a ground-breaking remedy for children who fall through the cracks. These children are diagnosed with behavior disorders but are able to mainstream with other children in the Idaho School system. On paper, they claim “award Winning” programs that instruct and inspire. In reality, Kayla Ellen’s family found them to be un-helpful. Usually a very nice young woman would come over and take Kayla Ellen on an outing once a week. Kayla Ellen looked forward to it, and if the Worker was late or didn’t show it was very disappointing to her. They did not use behavior management skills; they merely seemed to be intuitive about problem children such as Kayla Ellen. Eventually the child’s parents fired the advocates because of undependability. No-shows and cancellations were common.
Me; originally my major at BSU was Psychology. I am interested in children especially. I had a child seeing a counselor at Boise Children’s home. I became acquainted with the problems of Aspergers children. When faced with the task of a service learning experience, I talked with Kayla Ellen’s parents. I was instructed on the care plan and procedures used to help Kayla Ellen. I have some background in early child hood learning and recognizing problems. I felt that I could do the job that Advocates for inclusion had failed at. I was optimistic about bonding with Kayla, and secretly I thought I would be that amazing teacher that would bring her back to reality. Oh yes I thought with love, understanding, and patience, I would have a great influence on the child.
Most of my meetings with Kayla, I secretly thought she was a pain in the butt. Not so secretly, she felt the same way about me. She thought it annoying that I would not let her climb on tables in the library, or make odd noises at people, or ask rude questions. I was really limiting her fun as far as she was concerned. Her mother agreed with me that Kayla was exhausting. I tried the suggestions outlined by her counselor at the childrens home (L Milleger, personal communication, March 21,2006). When Kayla was particularly agitated we tried squishy balls, these she would squeeze in her hands and it was supposed to calm her. Instead Kayla would pop a hole in them and goo would ooze all over the car. One day we decided to have lunch together as one of our shared experiences. She pitched an unholy fit. Screaming and drawing odd glances from the hapless diners in our vicinity. I talked low and quiet to her until she calmed down, and we continued our meal. Sometimes you can reason with the Aspergers child other times things that worked in the past no longer will work. That is why each new worker assigned to a child thinks they will go where no one else has gone before with the child. Much like me, they think they have some hidden talent that no one else has. They soon find out that it is hit or miss constantly. Many of these children learn to be manipulative and one must always be on their toes.
The thought behind Advocates for inclusion is right. We need to be aware of these children, address their needs and take them out on outings. The more they experience the more they learn what the correct way to behave. They simply don’t know what is proper behavior. One child might cry inconsolably about a missing book, but watch a dog get hit by a car and be fascinated by death without any sadness, another may seem to feel nothing at all. It is clear that more and more cases of Aspergers are popping up. I talked to teachers at Sherman Elementary that had Kayla in their classes. They both said that they see more children each year with behavioral problems, and do not know what the solution is.
All we can do is keep plugging away until we get it right. Advocates for inclusion, Asperger support groups, child counselors all need education. This may get worse before it gets better. Experts are not sure what causes Aspergers. Some think it is genetic and runs in families. There may be difference in the brain structure of people affected by Aspergers. Mayo Clinic, (2008). Asoergers Stbdrin. Link to CNN.com, Retrieved 4-23-2008, from http://www.cnn.com/HEALTH/library/DS/00551.html Kayla Ellen’s family is beginning to suspect that their third daughter has it as well as Kayla Ellen.
My purpose was to learn more about Advocates for inclusion and how they serve the needs of the public school system. I think the need is greater then the supply of people provided. I think more research and more dollars needs to go into programs. Programs like this need assistance and public awareness. I am now pursuing Social work as my major, I can see on a first hand basis how sadly lacking our programs are. Children with special needs are often left for last. Gifted children either in book learning or Sports get a lot of attention. Lets focus on all children.
Bibliography:
Fumento, Michael (June 19, 1999). Investors Business Daily. Business Journal
Volkmar et al.,1994
Mayo Clinic, (2008). Asoergers Stbdrin. Link to CNN.com, Retrieved 4-23-2008, from
http://www.cnn.com/HEALTH/library/DS/00551.html
Advocates For Inclusion. (Est 2001). Nampa Idaho: Laura Sandidge
(L Milleger, personal communication, March 21,2008)
(J Mitchell, personal communication, March 19,2008)
(Dr.S Armentrout, personal communication, April 2,2008)
(Dr. J Connelly, Personal Communication, April 2, 2008)
(H. Smith, Advocates for inclusion, April 8, 2008)
Kirby, B (2008). OASIS. Retrieved May 1, 2008, from Online Asperger Syndrome Inf.
Web site: www,ydek,edy/bkirby/asperger/aswhatisit.html
