Statement of Parental Concerns

Charlie writes his name, quite boldly (and that "s" looks an awful lot to me like a Greek "xi") Monday morning the school nurse called me to pick up Charlie. His neurologist has prescribed an anti-anxiety medication for him to take temporarily while he transitions to a new school placement and one of the side effects seems to be drowsiness. After Charlie was in our car (parked in front of the school), I went back into the middle school to speak once more to the nurse (or rather, nurses—there are two at the school). As I was standing in the entranceway, I saw the Supervisor of Special Education entering the building. I walked up to her and requested an Emergency Meeting to discuss Charlie. I noted that we have requested such a meeting at least six times since we last met with the school district in September

I am meeting with the special education administrator and Charlie's case manager at 10am today. This is the statement that I have prepared to include in his IEP. (I have only changed private names and some other details.) 


Statement of Parental Concerns

submitted by James Fisher, Ph.D., and Kristina Chew, Ph.D.

October 28, 2009

This Statement of Parental Concerns significantly revises and replaces the Statement that we submitted at the May 1, 2009, IEP meeting for our son, Charles Fisher. We request that this new Statement be included in Charlie’s IEP and that the previous statement be either removed, or that it be noted that the May 1, 2009, statement is no longer valid.

Charlie’s placements in the [Name of School District] (2006-2009)

Our son, Charlie Fisher, has been a student in the [name of school district] since June of 2006. He was a student at [name of school] for two years. His teachers were [name of teacher] (2006-7) and [name of teacher] (2007-8). While at [name of school], Charlie took cello lessons from the school’s music teacher (who had no previous experience teaching autistic children). He also had opportunities to interact with “typical” peers during recess and at other times. Charlie enjoyed being a student at [name of school].

In June of 2008, Charlie became a student in [name of teacher]’s classroom at [name of middle school]. Charlie’s transition to [name of middle school] was difficult. [name of middle school] is a much bigger school in terms of its student population, and there were no opportunities for Charlie to interact with “typical” peers through reverse inclusion or other means. Charlie was only 11 years old when he entered middle school and, though he entered puberty early in the fall of 2008, he is still developmentally much younger than his biological age. Charlie has significant delays in his language and communication, his cognitive and academic ability, and in many other areas. Charlie's developmental age is not that of his biological age and this must be considered in creating his goals and objectives. While at [name of middle school], Charlie has made some gains in his academic and educational programs, including learning to use a calculator for basic arithmetic and improving his handwriting skills. He has also shown more interest in doing art projects and has continued to develop his athletic skills. Also, over the past year, Charlie’s eating habits have changed and some preferred foods seem no longer to interest him. Also, after ceasing to take Risperidone in June of 2009, Charlie’s appetite decreased.

In October of 2008 during a home visit, mention of a “temporary resident placement” at the
Bancroft Lindens Neurobehavioral Stabilization Program was first mentioned by [name of teacher] to Charlie’s mother, despite the fact that Charlie’s parents had never indicated that there were any concerns or difficulties about Charlie at home that would warrant such an extreme placement. Charlie’s parents emphasized their shock at the mention of this placement at a meeting in October of 2008. However, mention of Bancroft was again made in May of 2009, again by [name of teacher] and again on a home “parent training” visit. Discussion of a child’s placement should occur in an official setting such as an IEP meeting and Charlie’s parents do not understand why such a placement—a “temporary residential placement” like Bancroft—was brought up outside of an IEP meeting, in Charlie’s own residence, not to mention brought up more than once.

The Use of a Helmet and Physical Restraints

After a meeting in February of 2009, Charlie started wearing a
helmet at school and at home. Starting in early July, Charlie’s parents were able to fade the use of the helmet at home. He does not wear the helmet at home and in the community (restaurants, stores, public transportation, etc.). Charlie currently only wears the helmet at [name of middle school]. It is necessary to evaluate the effects of wearing a helmet (with a face mask and straps) on Charlie's behavior and communication, and to begin discussion immediately of a plan to fade the use of the helmet at school.

In December of 2008, Charlie had contracted impetigo on his forehead and the top of his head. (A WAMS staff member suggested, but did not confirm, that he may have caught it via someone in his classroom.) The impetigo did not go away until June of 2009. Charlie was seen frequently by his pediatrician’s office during this time and given antibiotics; it was regularly noted that wearing the helmet prolonged his having impetigo.

Physical restraints have been used on Charlie at [name of middle school]. We as Charlie’s parents have many concerns about these and about delays in informing them about the use of “two-person/three-person/four-person protective holds” on Charlie. In some cases, we were only informed some two weeks after the fact about such physical restraints being used on Charlie. As Charlie’s parents, we are very aware of the traumatic effect of such restraints on Charlie. Further, it is not clear if Charlie has been provided with medical attention after being placed in “protective holds” involving anywhere from two to four staff members. We have asked the [name of middle school] nursing staff ([names of two school nurses]) if there are records of checking Charles' heart rate, checking him for bruises, etc., following the use of physical restraints on him. We have asked to be provided with any and all such records as soon as might be possible. If there are no such records, we wish to be informed of this.

Neurological and Medical Health Concerns

Charlie has been seeing the neurologist Dr. [name] of the [name of neurology clinic] in [name of New Jersey town] since March of 2009. Dr. [name] has raised the possibility that other diagnoses might be considered regarding Charlie’s behaviors. Encephalopathy and sleep disturbance disorder have both been noted in regard to Charlie. We are currently seeking genetic testing for Charlie to find out if any other disorders or conditions might be involved. Since June of 2009, Charlie has been taking anti-seizure medications (
Trilaptal) as well as an anti-psychotic medication (Abilify) and an antidepressant (Sertraline), and this combination of medications seems to have been beneficial to him. The doctor’s office has also expressed concerns that the use of a helmet may have an adverse effect on Charlie’s behaviors.

Placement at the [
big autism center]

As it has been decided that Charlie needs to be in a more restrictive setting, we do not allow a decrease in services for Charlie. The Statement of Special Education and Related Services on Charlie’s current IEP notes that “Charlie will receive 1:1” instruction “throughout the day,” and also “small group instruction” throughout the day. Due to it being determined that Charlie’s needs have increased, there should be no decrease in services, staffing levels, and such for him. Further, we request that Charlie be observed at least once a month (if not more) by a BCBA-level behaviorist, and that there be at least monthly (if not more frequent) clinic meetings including the BCBA, parents, and other teaching and support staff.

In the past, Charlie has
presented with increased anxiety regarding changes in his educational placement. Such anxiety has again been observed in him in regard to his imminent placement at the [big autism center]. Due to this noticeable increase in his anxiety following a visit to the [big autism center] on October 13th, an anti-anxiety medication, Clorazepate, has been temporarily prescribed for Charlie by Dr. [name]. A transition plan is necessary to facilitate Charlie starting at a new placement. We request that such a plan make it possible for Charlie to visit the [big autism center]and to take photographs of the [big autism center] (outside of the building, new classroom, other locations in the building) in order to create a social story and picture schedule for Charlie.

12 Responses to “Statement of Parental Concerns”
  1. aenea says:

    Good luck- I’ll be thinking of you.

  2. Nicole says:

    Have you ever considered asking his previous cello teacher if she could provide private instruction now that he has left that school? It’s so sad that as kids get older inclusion seems to decrease more and more- in preschool they are in inclusion classrooms, but by middle school they are practically removed from any contact with typical peers. Sad for the typical students, also.

  3. Emily says:

    Ya done good.

  4. autismvox says:

    30 minutes in and out. Kept calm and carried on.

  5. karen d says:

    I have been thinking of you all morning. xo

  6. Moi says:

    As it has been decided that Charlie needs to be in a more restrictive setting, we do not allow a decrease in services for Charlie.
    I love this line. Sucks to be them. Now hold them to it. 😉

  7. Moi says:

    As it has been decided that Charlie needs to be in a more restrictive setting, we do not allow a decrease in services for Charlie.
    I love this line. Sucks to be them. Now hold them to it. 😉

  8. autismvox says:

    thanks friends! am not sure if our requests will be met but it was good to sit down and just present everything in a thoughtful way.
    @Nicole, I asked the music teacher and she said no but mostly because she is a violinist. she had high hopes that the middle school teacher would continue with Charlie. I kept practicing with him for a couple of months but eventually had to return the cello, sadly. Am going to respond to the rest of your comment in a bit, Charlie wants to go for a walk and then the sun just came out after 2 straight days of rain!

  9. a parent says:

    @Nicole –
    “kids get older inclusion seems to decrease more and more”. Is this really true? We’ll be hitting middle school next year and I’m going to be fighting to keep our current restriction level. One of the things that worries me is that our current school can only provide a level A setting, so they did the hard work required for my son. I’m worried that if a school has a level C setting, even if my son starts off at level A, any problems will lead to that more restrictive setting, with the thought process being why work to keep him in a regular classroom when we’ve got a separate class up and running. That’s why I’m looking to see what middle schools are available to us that have no segregated special ed classes.
    Glad the meeting went well and you kept your cool. Now the ball’s in their court.

  10. Club 166 says:

    Now that he’s slated to go someplace else, I expect escalation of the usual DDI (Delay, Deny, Ignore).
    One quick question. Do they refer to you and Jim as “doctor”? My experience in our district is that while they expect us to call the principal and others there with a PhD doctor, somehow they conveniently forget that I have a doctorate, too. I never insist on people calling me doctor when I’m at work (in fact, I introduce myself as “Joe xxxxxx”. But it’s kind of funny when people purposely lord their degrees over you.

  11. mothersvox says:

    Thinking of you guys. What a time. E-hugs to all three of you.

  12. mothersvox says:

    Thinking of you guys. What a time. E-hugs to all three of you.

Leave a Reply

Please log in using one of these methods to post your comment: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

  • What’s all this about?

<span>%d</span> bloggers like this: