Hello,
My name
is A. I spoke at the education town hall meeting at Campbell
Elementary, about the issues I am having trying to get my 8 year old daughter
with Asperger’s Syndrome the services that she needs from Fire Lake Elementary
school. I have put together a proactive team of professionals to help Cat learn to cope with Asperger’s; looking down the road to her future and not just
what she needs currently. Without the
school on board and aggressively helping Cat, this becomes more of a
challenge.
Our journey began in 2012; Cat was a second grader at Fire Lake. She had been acting out in class and her behaviors were escalating. Cat was struggling both socially and behaviorally. She would blurt things out during spelling tests, and yell during timed math tests. Cat had trouble sitting still and paying attention during presentations. Her teacher and the principal, Mrs. Henry, recommended sending Cat to the Creating Successful Futures (CSF) program at College Gate Elementary to help her learn to manage her behaviors.
Based on interactions and information from staff at CSF, I received a referral to Doc for an evaluation. Doc did his evaluation and referred us to Fuller for neuropsychological testing, giving us a diagnosis of Asperger’s Syndrome.
In October of 2012, Cat was a third grader at Fire Lake. I spoke with the principal regarding the tests, evaluations and Cat’s diagnosis. The school was provided copies of the test results and evaluations for review. I requested an Individualized Education Plan (IEP) to support Cat both academically and behaviorally based on recommendations from Doc and the behaviors we had seen during the prior school year. The school staff felt that Cat’s challenges since starting medication did not warrant an IEP and implemented a basic 504 plan to address minor behaviors they felt might arise.
Cat was not meeting the necessary academic standings required for third grade which was consistent with what we were seeing at home. The decision was made to hold her back and have her repeat second grade. I was told that her Asperger’s was not affecting her academically; since she was no longer a third grader Cat was meeting academic expectations. It appears to me that the fact she was held back indicates academic difficulties.
Cat's behavior escalated; she began to have major meltdowns in the classroom. Cat was hitting herself, throwing things in the classroom, and hitting other students. The principal stated that if Cat’s behaviors did not improve the school will start suspending her.
I requested another meeting to review Cat’s 504, discuss an IEP, and complete a Functional Behavior Assessment (FBA) to implement a Behavior Intervention Plan (BIP). At the meeting the school staff agreed that Cat’s current 504 was not supporting her enough and to start evaluating Cat for services in the fall, claiming there was not enough time to complete the evaluations before the end of the year. An FBA was done and a BIP implemented to help support Cat for the remainder of the school year.
In August 2013 I again met with the staff from Fire Lake; this time to sign the consent papers for the school to evaluate Cat for services. I also wanted to update the 504 and BIP in place so that Cat would have the support she needs while the school completed their evaluations. I was told “the current 504 is good enough and will support Cat just fine,” completely dismissing the recommendations of Cat’s doctor and therapists. The current school year began and Cat has had 5 major meltdowns in 7 days because she is not being properly supported by her current 504.
A meeting with staff from AK Child and Family (AKCF), the school, Alaska Youth and Family Network and I, was held to discuss beginning in school support for Cat. During this meeting Cat’s behaviors were discussed so that the Activity Therapists from AKCF would know the challenges we are facing.
There has been a disturbing pattern of my coming to the school with requests for necessary services and supports followed by the school delaying supports until left with no alternative. I have a team of professionals put together and we are all working together to aggressively help Cat learn to manage her disability. The school’s response has been limited and ineffectual. Without a change in perspective this pattern will continue and Cat’s behaviors will continue to devolve.
I understand that there are limitations on what the school can do. There are many other students in Fire Lake; there are other students with special needs at Fire Lake. There are over whelming budgetary restrictions limiting what services the school can provide. This is where the true problem lies. With every cut to the district budget children like Cat fall through the cracks; children who are high functioning enough that they are looked at as “problem children” and discarded because of their behaviors; children who are just slightly below academic standards; children whose behaviors are fine once given medications.
The reluctance of the school to properly support Cat affects both Cat’s education and that of the other children in her class. Every time she has a meltdown; when her behaviors escalate to the point where she is screaming, throwing things, hitting other children the class has to be evacuated until Cat can be removed. When this happens the entire class loses valuable instruction time. We need an aggressive plan in place to identify and help Cat manage her triggers so that she and her classmates can get the education they are entitled to and richly deserve.
I have documented all of the correspondence with the school if you would like to review it. If there is any further information that you need please feel free to contact me.
The school is not the only organization I am struggling with to get necessary services. Since Cat’s diagnosis I have also been trying to get a Medicaid waiver for my daughter so that I can get her more intensive therapies like Applied Behavioral Analysis (ABA). In order to be eligible for the Medicaid waiver I need to have Developmental Disability (DD) eligibility for her. I have applied twice and keep getting denied and told that Cat’s issues are a behavioral health issue and not a developmental disability despite the Asperger’s diagnosis. Cat was approved for Supplemental Security Income (SSI) benefits without any hassle; still the Department of Senior and Disability Services (DSDS) are refusing to grant the Medicaid Waiver.
Asperger’s has presented Cat with many difficulties. She cannot bathe herself without step by step direction and help to rinse her hair. She cannot brush her own teeth. These are a result of a lack of executive planning function in her brain and general low muscle tone. Cat cannot tie her shoes, button her blouses, or brush her own hair. All of these are fine motor issues. She is unaware of potential dangers around her and will walk right out into traffic. Still the DSDS say she is not developmentally delayed.
Thank you for any help and advice you might be able to
provide in this matter.
Sincerely,
A
