Guest Author - Bonnie Sayers
There have been several incidents that have taken place lately that deal with the way professionals communicate to Parents of children on the Autism Spectrum. I will be sharing these to help other parents know they are not alone in these dealings.
A few weeks ago I received an introductory type letter that is actually a form letter from the Director of the Company that will be providing Behavior Training to me for dealing with Matthew's behaviors in the home. This letter was insulting to parents making it seem that a Behavorist's time is more important than the parents, who are the clients.
Here is a sentence from this letter - " In order for Behavioral Health Consultants to provide you and your child with the best possible services, we will need your full cooperation." That sentence was in the second paragraph with the following sentence appearing in the last paragraph of the letter. "Once your appointment(s) are made, please make every effort to not schedule anything that might conflict with the Assessment." Most of that sentence was in italics as well.
An entire paragraph in italics preceeded the final paragraph and stated the following, "The Behaviorist has a limited amount of time available in which to schedule his/her appointment with you. Each Behaviorist has to meet with many other families and their children, so scheduling time is often very tight. Please be considerate of the Behaviorist time and day restraints."
I was stunned to receive this letter, that also happened to be dated one month later. I telephoned the Regional Center where the funding would come from and read this letter to the Service Coordinator, who suggested I send an email response to it.
I also typed up the letter in an email and my response and shared it with several yahoo groups to get feedback. I wanted to make sure I was not alone in my reaction to this condenscending letter. Here is a portion of my email sent the same day I received the letter.
I am contacting you to give feedback on the letter that was sent to me by you. I am not sure if this is a form letter sent to all parents within the Regional Center system or all your clientele, but I must say I found it to be demeaning to parents. I doubt this letter is considered a welcome letter because I did not feel very welcomed by your organization after perusing it.
Maybe it is classified as an introductory letter, in which case I would hope the Behaviorist and other representatives of Behavioral Health Consultants LLC would treat families with respect, especially considering they are entering our homes.
I have never received a letter from any organizations, and was surprised to read such a condescending message. My days are busy filled with meetings, Doctor appointments, training sessions, therapy appointments and the like. I did not appreciate a letter addressed to me that has such little regard for forming a relationship between professionals and families.
I hope the Behaviorist will be considerate of my family obligations as well and our day restraints with school. It is my hope that the person(s) entering my home that will be working with us will be professional in nature.
I have my doubts that the service will be the best possible if this is how clients are treated. I would suggest an overhaul into this letter if it is sent to new clients. I did not appreciate being told to give my full cooperation, be considerate and to make every effort.....
Perhaps Behavioral Health Consultants LLC needs to be made aware of the time restraints and scheduling that families with children on the Autism Spectrum and other disabilities have. We are just as important as professionals and should be treated appropriately.
As of this date I have yet to receive a reply to that email. When I received a phone message from the Case Manager I made a note of the time she called and when I returned the call and left a voice mail message. I was ready for a battle, all based on the tone of the letter that was sent. I even had the Case Manager read the letter, who replied to me that the Director talks to everyone like this.
Luckily I will never have to deal with that man - but I sincerely hope all other parents and future clients of that company responds via email giving feedback on the rudeness of the letter.
The other incident has to do with Nicholas's social skills appointments. For a few weeks we were not able to make them due to my having an emergency skin situation, then Bronchitis and Matthew being sick for a week. The appointment for Social Skills coincides with Matthew's Feeding Therapy. I telephoned each week to let the office staff know we could not attend.
I learned through the Regional Center that someone within the Social Skills program called the Regional Center to report that Nicholas was not attending. This had happened a year earlier with another person at that office who has since left. I mentioned that to her replacement stating there was no reason for someone to call the Regional Center and not me to inquire where we were.
Not only that, but I called each week to Regional Center who funds the service - what am I, chopped liver? I will not continue services where I am not treated with respect.
I called their offices and spoke with the office personnel and then the Program Specialist. Neither made the call and were not even sure one was made, yet I had a date and time that a call was made from the Service Coordinator at the Regional Center. I proceeded to call the Regional Center back to get the name of who left the message and returned the call to inform them the name of this person.
The following day when we arrived at the room where the Social Skills takes place a young girl who looked to be fresh out of high school giggled a bit about her being sorry for making the call. I had never seen this girl before who then tells me her title - one that I forgot and could care less about. So she goes on about how she was told to form a relationship with the Regional Center.
Somewhere in the training manual they forgot to mention the actual clients should not be alientated. I don't care who pays for the service, I will not take my children anywhere that lacks crucial communication skills with the family.
The other day at school I wanted to let Matthew's aide know about something I put in his lunch, yet she was busy speaking Spanish with another aide and could not stop to acknowledge Matthew's presence, although the other aide took the second to do so. This aide looked at me like I was out of line for speaking to her. I cannot wait for the day we say ADIOS to this clueless woman.
The final incident that took place this past week was through the school Nurse at Matthew's school. At least once a week I get inside his backpack a small white paper that is stapled and has notice of first aid written on it. That is about all I can comprehend as the Nurse has the most atrocious handwriting I have seen. I had to call to ask her what two notes had written on them.
She then went on to tell me that " she got her hand stuck in the chair". I thought she was talking about the aide and trying to figure out what this had to do with Matthew when she indicated she was talking about my son. This woman was using she and her to discuss my son. Why is a school Nurse not schooled in the English Language?
I will be writing a seperate article about an Incident Report that was filed and sent to the Regional Center last week from the Floor Time session Matthew had. I learned of this through the Service Coordinator after the fact. I called and argued with the person who did the Assesssment over the handling of this report.
Educational Autism Tips for Families 71 page resourceful ebook for families entering the school system with a recent autism diagnosis. Find out what issues take place over the course of a school day and meet these challenges head on.