The Pros and Cons of Assessments
Many times these assessment reports have related information about the wrong child where the assessor was to observe one of my children on the Autism Spectrum but ended up reciting details on my other child. I have mentioned things during the assessment that becomes factual data within the report.
For example - one time an assessor was here at the house conducting the assessment when I mentioned that I could have had ADHD as a child but was never tested so I really do not know. I based this on a seminar I attended where we were handed out checklists to go over to determine if we had ADHD as a child. Another indicator the lecturer mentioned was going over your report cards to see if you were not paying attention and always disruptive and talking. It certainly sounded like he was describing my childhood days and as someone who still has all her report cards I noticed that this was true back in Kindergarten!
Well this information I freely shared was included in the assessment report as Mother having been diagnosed at an early age with ADHD!
Another issue that takes place quite frequently when I request a service that requires an assessment to make the determination - is how the assessor treats us when they learn that there are two children on the Autism Spectrum. Suddenly they want to know about the child when I am strictly focusing on one child and their need at this point in time.
It seems to me like they always see dollar signs when they arrive at my house thinking they are going to get two kids for their services instead of the original one.
One year I asked for a Behaviorist through the Regional Center. Regional Centers are in the State of California. The agency sent someone who was a third party contractor to my house. This guy explained to me that he would be going to the school to observe my son. The first meeting was just with me while my son was at school. The bulk of his conversation was discussing his mileage time and hours that this would affect.
When we were discussing Matthew I had mentioned Nicholas who was in the classroom next to Matthew's. Well it seemed like the Assessor lit up learning of two children and started telling me what type of hours I could get for both kids and how his mileage hours would work. It did not matter to him that I was only interested in obtaining services for one child, he was on a sales pitch to get me more hours. He made it seem like this was such an opportunity for my children, when all he really wanted was more hours at the same location to make his life easier.
I told him I was not interested in obtaining services for Nicholas at this time and was focusing on other issues for him and the behavior for Matthew. I was quite surprised when I received the assessment report and learned that Matthew was able to imitate Dinosaurs and climb on the jungle gym. These were traits of Nicholas and it was clear to me that this assessor was observing both my sons and getting confused in the process.
It was indicated to me during the interview that he would be at the school for 40 minutes. Since I live around the corner and had to give the school written information about the person coming to the school I inquired the next day at the office of his time. The sign in sheet showed that he was there for a total of twenty minutes.
I contacted both the Behavior agency that contracted this guy and the Regional Center who funded for the assessment. I read over the phone the issues with the report and requested a corrected version be issued. There was even a sentence mentioning, "The Teacher's Aide asked Mother to practice putting on weighted vest at home but she refuses to comply."
This sentence outraged me because the vest was purchased for Matthew through the Regional Center and I brought it to the school for their use. Second the fact that an Assessor is reporting what a classroom aide is telling them without first mentioning it to me to rectify the situation is not a practice I agree with. I had never given consent to talk to assistants in the classroom and then note their impressions.
When I inquired to this specific sentence asking who observed this, they could not respond - " He is often observed dashing into oncoming traffic without apparent regard to oncoming cars." Where do they come up with the stuff for their reports and then nothing to back it up with?
The final report stated in the first paragraph under background information - "Currently, Mrs. Sayers is unemployed. However, she expresses a genuine passion to aid in Matthew's healthcare."
That just blew my mind that this guy who comes into my house talking about his mileage and skimping on the time at the school and confusing my children than has the nerve to critique me as a parent and state I am unemployed. What the hell did he think I did all day. Matthew was in preschool for 2 1/2 hours and Nicholas was there for 4 1/2 hours.
That was enough for me to know I did not want this person or any representative of that agency in my house three times a week making judgments on my family.
The very first feeding assessment my kids had was at Children's Hospital. It was a team of many watching the three of us through a two-way mirror eat in a small room that had no ventilation. We were there for hours while they did the medical check up and then individual assessments. I had to pack up food and items for us to be there, including utensils, plates and cups. The boys were 2 and 3 at the time and not easy to handle in the small hot environment we were placed in.
Hours later at the end of the assessment one of the professionals took me into a room and had tons of recommendations for us to come there three times a week and they wanted a complete diagnostic evaluation for the kids when they already had them from other places. To me it was a waste of money for the Regional Center to spend and we were to be like guinea pigs for these professionals.
The worse was yet to come - I got the assessments and they confused the boys stating that Matthew was drinking juice, when to this day the child has only had it twice at the feeding clinic in the last year. The assessment also had notes from the Physician who did not believe the children really had autism and that since their father is Paranoid Schizophrenic they probably learned things from him. It did not matter to this so called professional that the kids never saw their Father and he was not part of our lives. He read the papers I filled out prior to the interview and seemed to form assumptions based on that data and did not bother to ask questions to get the facts.
There was no way I was going to subject my family to more of those encounters, so I said we were not interested in their services.
I inquired a few years ago into Floor Time for Matthew. The Regional Center referred us to an agency that was to handle the assessment. Three women came over to the house for this assessment. During this stage in Matthew's life he was having bowel issues and going quite frequently. It was already noted in his speech and OT reports, (both were combined therapies at times at the Hospital), that during the one-hour therapy session he would have up to three bowel movements, and at times they would wait to do only one diaper change. I was part of these therapies and instructed not to change the diaper yet.
I did the same thing at home since it was clear Matthew was not quite done and why change two diapers in fifteen minutes when you can change one in thirty minutes. This is what I explained to the three women at my house. I also indicated I wanted PECS to be utilized during the Floor Time and I was told this would not be so and I would be the one changing his diaper.
I was not really happy with either of these people to consider them in my home three times a week. I still contemplated this when I received the assessment report that stated " Mrs. Sayers reports that Matthew suffers from recurrent bowel movements but she will not change his diaper after each one. Note that the school staff reported Matthew to have normal bowel movements and only requires a change of diaper one time a day." The tone in their report made me feel very uncomfortable with the idea of any of these people coming here on a regular basis.
They seem to compare what a parent says to what the teacher says, and then write this type of statement –
" Though Mrs. Sayers reported Matthew is described as fragile, he did not appear fragile to the therapist, but did look thin with a pale complexion and dark circles around his eyes."
They were quite aware that the only liquid Matthew consumes is through a bottle and it is soymilk. Obviously this is not done at school and the eating is very limited at school. This report also made reference to me being unemployed. What relevance is this for an assessment on the child?
The report also mentioned - " Although Mrs. Sayers did not report aggressive behaviors the school staff reported Matthew hits his mom and will bite, slap, hit the teacher/aid, and slam his body against the walls when he is angry/frustrated that he has to work."
To this day I still do not see the importance of comparing what the school staff and parent say and then making note of it in a report that stays with the child's file till the end of time. Every single report has the same background information and I know it all so do not require it or want it in any future assessment reports. It is not productive and a flat out waste of my time and the professionals paid who knows what to conduct the assessment.
My employment status has no bearing on the therapy being considered. All these issues put into the reports make the decision to not pursue the therapy an easy one for me. After reading the various assessors impressions of me, my family and then their comparisons of what I say and the school staff says I feel these are people I do not want to deal with on a continual basis.
It makes no difference to me that I am not paying for the intended therapy. These people are rude in their reports and I do not want to be associated with them so the end result is they lose the contract for doing business with my family.
In the end some may say that my children then suffer, but I feel in the end we are all well adjusted and just happy the way we are. We went through a Custody Evaluation a few years ago when the father wanted to stop having supervised visits. I had an interview at the courthouse with the evaluator and then she made a home visit to observe the three of us at home. The Father had a visit at her office and she went to his place of residence. Then she came over to observe a supervised visit in process with the father and wrote a 25-page report that was factual and very professional.
Her impressions of me were very complimentary as well as the children. She even made the suggestion that the Father should consider shaving his beard if he wanted to have a relationship with Nicholas. This was a result of my conversation on how the Father rubbed his beard against the kids and this really bothered them with their sensory issues. She said it was an unusual request, but worth mentioning.
" The home is very neat, clean and organized. It is clearly child focused with concern for the individual needs of the two children. There are structured activities throughout the home, and the attention to safety is evident.
It is the opinion of the undersigned that mother is providing an exemplary home environment and care for the two children. With the many challenges that the two children face, it appears they are growing and improving under mother's consistent, loving, appropriate care. A strong, healthy attachment is evident between both children and mother. Mother has made excellent use of community supportive resources. She consistently advocates for the children and accesses a broad range of needed services.
Mother is requesting that father's visitation continue to be monitored, based on the children's special needs and father's psychiatric issues. The information received, and observations by the undersigned indicate that this is an appropriate and reasonable request. Father was unable to describe, even in a general sense, the intricate and detailed care which the children, particularly Matthew, require. He has unrealistic expectations regarding the children's ability to function in unstructured environments, and his ability to provide for their needs."
I have a copy of this report in my emergency kit since it is one I never want to lose!
My cons for assessments are the critiquing of the parents and confusing background information that has no relevance to the assessment and therapy considering. Many of the assessors come into the home with attitudes. I am not sure if this is the same elsewhere or it is just a California regional thing due to the Regional Center funding therapies.
It should make no difference where the funding is coming from for the considered therapy and respect needs to be shown to the family. I feel that once an assessment has been done in the home a follow-up needs to be done to discuss with the parent the findings of the school observation. A discussion of what the report will state should be done if you want to maintain a workable relationship with the parent. After all - you will be coming into their home and they should feel comfortable having you there engaging with their child or children.
Unfortunately that has not been the case with many that have come to my house so I do not request services. The Regional Center coordinator has formed an opinion that since I request a therapy and they fund the assessment that I just do not want these therapies and being picky. The first phase for funding is the assessment, then the report is received and the request to start services. Usually with therapies these requests are funded for a three or six month period with a progress report prior to another request for further funding.
When the diagnosis of autism first arrived we had a Behaviorist through the Regional Center. Back during the 1990's this seemed to be standard when you first got approved for Regional Center. The Behaviorist doted on Nicholas and placed Matthew in timeouts mostly. It was quite obvious to me that the Behaviorist preferred Nicholas over Matthew and then the progress reports were done the day before with a frantic call to me to discuss issues and phases of treatment we never did.
The reports are all nice and organized showing progress that never materialized and listing goals that never were discussed with family. The time that is spent doing reports seems to be more suited with the actual family trying to give them the help they requested in the first place.
For me the pros are reading some of the things my children have accomplished over the years that I may have forgotten about and recalling incidents and earlier times that we have lived through. I keep copies of the forms I fill out each year for their summer camp. Recently I was reading through previous years and forgot that Matthew had this habit of climbing on people and did this a few times with a worker at Rite Aid and some therapists at the feeding clinic.
When they first started speech therapy the therapist would write out reports every month for the Pediatrician and Insurance reports. These are when the boys were 2 and 3. This is the time they were doing water therapy together at the Hospital pool and we brought a large whale toy through the Hospital corridor. These reports reflect the time when Nicholas only had a few words in his vocabulary and discussed the new words he had each week.
These are wonderful reports to keep. The first therapist we had formed impressions of me and noted these in her report, which was the first time I had encountered the phrase "autistic like". I called the Hospital to make a complaint and change therapists. That was the best decision I made. The next therapist called me and we learned about each other over the phone before meeting and it made all the difference. She was the first speech therapist they both had and it helped tremendously.
This past Spring when I requested a Behavior Assessment for Matthew through the school district the Psychologist inquired about doing a home visit. I did not feel comfortable with this request and chose not to have one. I feel better with that decision and did not want to taint the school relationship by having them come to my home and critique our home life and compare it to the school situation.
I have decided that any future assessments or interviews either at the home or at an office setting will be tape recorded so I can double check the data that is included in the report.
For school assessments I have indicated for Nicholas that I want to know the name of the Assessor or Therapist and need to know the date they are coming to the school. Nicholas needs to be prepared for someone observing him or testing him and this should be standard procedure for all kids.
I prefer that the teacher discuss issues with the assessor and not the aide, especially since the aide is not part of the IEP Team and I want the information given to me as well.
Assessments - I can live without them!
Some tips to consider when planning assessment meetings:
1. Make the appointment at a time that is convenient for your family when things will be calm – after a meal, first thing in the morning, etc.
2. Find out from the agency what type of background checks they do, get a copy of the Therapist’s resume and/or references.
3. Find out the date and time they will be observing at school. Ask if you can be present? Have a copy of the classroom’s daily schedule and ask teacher which day and what time is best for an observation to take place.
4. Inquire if the person doing the school observation is the same person or another one and get their background as well. Ask if they will be using food in their assessment and state any restrictions or issues you have with utilizing food.
5. Notify the school prior to the observation date that this person from said agency is coming to the campus. Follow up with school that day if you are not going to be there on the times the person was there. Get feedback from the teacher.
6. Do not willingly offer any irrelevant information during the meeting.
7. Take notes during the meeting and if at all possible tape record it.
8. Be diligent in proofreading the report making changes and asking questions.
9. If you sign any documents make sure you are given a copy at the same time.
10. Do not give anyone originals of any reports you have. Instead make them a copy beforehand and request an explanation on why they need this data.
Good luck in obtaining the services and therapies for the child on the Autism Spectrum
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