Level 1 Grievance
We are going to level 1 grievance to request that the TSS (therapeutic support staff) hours be increased. We had asked previously and were denied. Thus, the grievance. No one from CCBH showed up to the first meeting. They read the report and denied it. Now they are calling it in on a phone conference. If we had wanted an in-person meeting (of course we WANTED it) we would have had to drive almost 2 hours. I fully expect we will have to go to level 2 and bring a lawyer. This just REALLY aggravates me. But here is the report we will read.
Sam is in the ninth grade. This year he began to attend cyber school for the first time.
Our reasons for entering him in cyber school are varied, but include:
- increased ability to work on executive functioning skills. His assistance at school was so patchwork - aides, TSS and, at times, nothing - that essential information was not getting home in time for us to work with him on building the skills that will lead to independent completion of projects, essays and other functions. Once he told us about his chorus concert 5 minutes before he was supposed to be there, and that was the first time we had heard about it from anyone.
- increased independence in forming a schedule, both daily and long-range. To learn to prioritize tasks as essential and less essential.
- to begin to identify material presented (whether written or spoken) as important or not.
- to develop life skills, including self-care, community skills (including formulating a plan for shopping and paying, and beginning work skills.
We felt we would better be able to address these issues with him in cyber school because we would be more informed than we were when he was in our local school. We would have more time with him and his time would be more flexible.
Already we have seen progress in many of these areas. We have been able to take him to an autism conference where he heard from adults on the spectrum. He was able to work on school work between lectures and on the weekend. We have taken him shopping and worked on more skills in that area. He has become somewhat more independent in knowing what tasks he needs to do and getting the books and materials he needs for that. However, he still has a long way to go in these areas. We have talked to him about getting a job for 2-3 hours on the weekend and he is very excited about this possibility. Obviously, we would have to be his job coach and we are willing to give this time to do it.
We also felt we were well able to help him with school work as we both have college degrees in math. In addition, mother is a physician, father has a degree in electrical engineering. However, we didn’t bargain for Sam’s issues and the family issues that combined to limit our ability to help.
Father became a stay at home parent on a permanent basis when our second son was also diagnosed with autism. It had been our plan that he would seek work at some point, but our children’s various disabilities have required that he be available throughout the day and whenever they are sick, have appointments, have days off and vacations. So it has been impossible for him to seek any employment.
Mother is a solo physician in a rural practice. She has a large nursing home population and is also head of a local hospice. She works 50-60 hour weeks and is on call at all times.
We were not able to predict that because of Sam’s Executive function and language problems, stemming from his autism, Sam’s grades would go from an A/B average on the honor roll last year to failing after the first two weeks of school.
We quickly put many accommodations into place.
We contacted the school and teachers and a provisional IEP is in place. In addition the teachers have been extremely accommodating. As a group they have worked more with us than any other year of school. This has allowed Sam to remain in a regular English and Science classes, where he was in Learning support classes last year. Although Sam cannot yet work at the same level as the rest of the class in many areas, we have been extremely pleased to see it pushes him to a higher level. We have discussed racism and metaphors. He can understand racism now as a corollary to the discrimination he faces as a disabled person. Metaphors are a bit harder, but he has been introduced to them, and we look forward to exposing him to other ideas his peers are learning.
However, Sams inability to notice and follow directions have prevented him from making full use of the accommodations and achieving the academic potential he has previously demonstrated. This disability causes him to be unaware of portions of assignments, to attempt to take assessments, quizzes and tests without completing assignments or studying simply because they are listed as ‘due.’ And to be unaware of last minute changes in curriculum.
Another quirk of Sam’s is a compulsion to complete assignments in a certain order. When he can not figure out how to proceed with an assignment, he will stop work until someone is available to help him.
In addition to difficulties with receptive language and communication, staying on task, following directions and compulsions to complete tasks in a certain order, Sam encounters barriers to learning in the form of his siblings.
Sam’s middle brother in particular has severe disabilities due to autism with bipolar phenotype. This brother will have meltdown episodes lasting up to 45 minutes. These can occur several times daily. These episodes can include biting, hitting, kicking, breaking objects and screaming. He sometimes needs restrained by parents to prevent him from harming himself and others. His brother is 13 and very strong, so restraint is not always successful.
Sam becomes very distressed by these episodes. He makes suggestions that his brother be harmed by parents. He sometimes attempts to restrain his brother himself or to hit him.
His brother is home schooled and is always present in the home. Father is the only adult present for much of the day (other than TSS, BSC, MT, etc. who obviously are not able to provide for brother’s safety.)
His brother has very limited communication ability. He produces a lot of vocal stims and echolalia, which Sam finds very distressing and distracting. If unable to get away from his brother, he becomes verbally and physically aggressive toward his brother in a misguided attempt to make his brother stop (I say misguided as his brother finds this extremely entertaining and sometimes produces them to upset Sam more.) Sam insists on distancing himself always from his brother, usually upstairs with doors between them.
His brother is very inventive looking for ways to entertain himself. He is able to make impressive messes or break things even when he is just feet away and we think we know what he’s doing. He likes to pour and has poured out full pots of coffee, bottles of nearly full wine, jugs of milk, cans of soda, pints of cream. He has intermittent obsessions with the microwave and has cooked several DVDs, in addition to cooking food items until charred. We have had months where we have to shut off the breaker to the microwave because of him and run down to the basement to turn it on when we need it. He has filled the dishwasher with entire bottlefuls of hand dish detergent and then turned it on. More than once. He has blocked the septic drain by flushing toothbrushes and other things down the toilet. We have worn out three snakes and currently have a regular one as well as a 40’ one to address a recent problem. That toilet is still not yet reinstalled. A few months ago, he took down our drop ceiling by standing on the couch and swinging out monkey bar style over the furring strips. He still swings across the living room from the 2x4s that are left until we can get a remodel.
Sam finds these activities very upsetting. And they obviously mean that his brother requires one to one supervision. Even going upstairs to the bathroom (which we now must do) can be disastrous.
At first, we had Sam do his lessons in another part of the house to avoid the distractions and aggressive encounters. However, that meant his father could not help him without the possibility of fire, flood or demolition. It also meant his father did not have the opportunity to become familiar with the cyber school website to help him navigate it.
Since he is not accessing all of the resources, the assignments are difficult for him to complete. he was spending up to 11 hours a day and spending many hours on weekends to complete assignments. This caused Sam a lot of frustration and stress. He has had difficulty sleeping. He has been baiting his youngest brother who also has autism. His youngest brother responds with verbal and physical aggression, and the encounter escalates. Sam has been showing increased verbal aggression towards both brothers.
Recently we moved him to his mother’s office for schooling. She is occasionally available to help him between patients and stays after work to help him with his homework. However, because of other obligations, she is not always at the office. Some days are extremely busy and she is not done until his regimented routine tells him he must go to lunch. In spite of the minimal support, his ability to work has improved a little.
There are periods where she is so busy at the office that he is unsupervised. Sometimes he comes and interrupts a patient’s exam. Recently he eloped from the office without telling anyone and walked home in the dusk. This walk is about a mile and it was raining. He crossed 17 intersections and passed a bar and a convenience store. Our house and office are both on the main street which is heavily used by semi-tractor trailers. Sam is often inattentive when walking and we were frightened when we realized afterward what had happened.
We are asking only for the additional support for an 8 school-week period so that we can build the skills that he needs to use the system. Obviously, we need this period starting now and going forward, as the previous date has passed and cannot help him.
We are well-educated and committed all of our children reaching their full potential. One of the reasons that we put Sam in cyber school was that we felt that all of our energies were being directed to his brother, and we were not able to work on the deficits that were beginning to impede him and had the obvious potential to worsen if not addressed. We knew that daytime was his best time and his little brother was away at public school, which was not true in the evening so we had a little more availability.
We want the best for Sam. We want him to reach his full potential. We want him to be a productive member of society. We want him to be as independent as possible. And we feel that the best way to further these goals at this time is by cyber schooling him and working on them whenever the opportunity presents itself. We have obviously sacrificed a lot, including our own personal and professional time, to make this happen.
But right now we need a little extra help to enable him, and us, to gain the skills we need.