Needed: Good Communication Between Parents and Schools
June 5, 2008 by Kristina Chew, PhD
Filed under Health
It’s always struck me as a sad irony that, when it comes to parents trying to make sure that an autistic child succeeds at school, communication can pose some of the greatest obstacles. It’s not only that autistic students often struggle themselves to say what’s on their mind and (if they are not verbal) just to communicate. Too often I’ve found it just very hard to let teachers, therapists, and staff know what is going on with Charlie and what our goals are, and I know the reverse has occurred. Charlie’s teachers and I have worked hard this year at letting each other know what is happening; email and regular visits by Jim and me to the classroom, and of Charlie’s teacher to our home, have made it much easier to keep each other informed about what is going on with Charlie.
An article in today’s Wilton Villager (Connecticut) describes a hearing in which parents found fault with the district’s current autism program. At the hearing, more than a few parents noted that aides—paraprofessionals—are not allowed to speak with them. MaryAnn Lombardi, a parent advocate and the mother of an autistic child, visited an autism program in another district, Half Hollows, and said:
“I was very impressed by what I saw…….Paraprofessionals are included in team meetings, which is something we don’t have. Our paraprofessionals are not allowed to speak to us.”
Many other parents complained about the disconnect between paraprofessionals —who spend the most time with a child during the school day — and families.
“It is highly counterproductive,” said Kathy Weber, whose son has autism. “How would we know his day to day experience?”
When I visit Charlie in his room, I talk not only to his teacher but also to the aides (paraprofessionals) and whatever therapists stop by. Only the teachers is authorized to email us, so we don’t usually get a report of his day when Charlie’s teacher is absent. I hope this might be remedied: As Charlie has minimal language, we rely on the teacher’s emails and at Charlie’s IEP meeting I requested that some form of communication about Charlie’s day be provided every day.
But (in our current district) there’s never been a question about talking to the aides—-if we adults can’t communicate, how can we help our kids and students to do so?
We ran into this at Nik’s school; it made it extremely difficult to get a real sense of how his day went especially when the teacher was out or had been involved in IEP meetings for a large part of the day.
From the other side of the coin….
I’m a paraprofessional at a separate day school for children with multiple handicaps. Official policy at my school is to always refer parents to talk to the teacher if they have any questions. The assumption is not that the aides don’t know what is going on, but rather that we want to make sure that we are being consistent in what we are telling parents, and a single aide may not have all the information — the teacher is the one who has all the pieces. That is not to say I haven’t greeted or chatting with parents from time to time if they come to pick up/drop off their child, or visit for a birthday party. I do find it strange, though, that you only get notes home from the teacher — despite that policy, our daily notes are written by whichever staff member (teacher, para, or sub) worked directly with the student that day.
My daughter has been in several school districts now, and none have been open about communicating with us. One school district even changed the para every few hours so that there would not be any continuity for parents who want to know. Sadly, it is like that in many parts of the country, and it is counter productiv.
I am a sped teacher at a public educational agency that runs a school for students with multiple disabilities. I watched in horror two weeks ago as the out-of-district coordinator from a student’s home town literally re-wrote the parent’s concerns on the IEP (and thus they were no longer the student’s concerns) and defended an in-district educational history that left the parents without any kind of valid evaluation for the past five years. Lastly she presented a transition plan she created that did not acknowledge the extend of this students issues, arguing with the TEAM and the parents when we stated that it was unlikely that a vocation program would be occurring. Often times, like the district that does not allow the aides to talk to the parents, such policies are “top down”. I can only imagine that the administrator I have been “working with” has been keeping these parents in the dark about the extent of their son’s disabilities by silencing teachers and aides until he was literally kicked out of the district for his out of control behavior, which was caused by educational neglect. It makes me so sad I haven’t slept in weeks.
In our school it is the aides who fill in the communication book every day.
At our school it is the aide that fill out the daily communication notebook too. Rarely do we get a note from the teacher, because literally, it is the aide who is with our daughter all the time and knows what is going on.
One other thing we did that’s helped with communications is have a progress meeting every nine weeks with the team. These are not IEP meetings per say, but just an open forum where everyone can discuss where our daughter is and some suggestions for the next nine weeks. The aide is always a part of this meeting.
When we lived in Georgia, though, aides were never at meetings. Maybe it’s because to them the IEP was more like a business arrangement as opposed to an education plan…
This is really interesting—-it has always been the teacher who has communicated with us (and I suspect it’s the “powers that be” who set this up—and frankly they seem to be the “interfering influences,” and not always in the best of ways).
We get daily home notes. It’s a form sheet that has boxes to be checked off and area for extra comments. It’s not perfect but it does help. I find my visits to the classroom to be disruptive for my son as he thinks it’s time to go home.
Gus has been in about 4 schools now, and of those three have been excellent about sending home daily communication notebooks, which I am very grateful for. Even when I disagree with the teacher (which has happened this year) there’s an open dialog and issues get resolved. The one year that there was poor communication from the school was a nightmare which necessitated several unannounced visits to the school with my infant in tow because notes were few, and when I did get them they were incredibly negative. The program and teacher (first-year)
was not able to cope with the needs of an autistic child. “Why does he make those noises when he eats?” “What do you mean ‘why?’ Have you NOT read his file?” Otherwise, we’ve been really fortunate.
Sadly, Andrea, it’s true…staff seomtimes doesn’t read the file or has access only to what is deemed “appropriate” or relevant to their direct interaction with a child. At least, that’s how it was at Nik’s school. It was such a pervasive part of the school culture that when I began to give photocopies to all of the IEP team they still didn’t read them.
I know this isn’t the case everywhere but it was our experience; we now home school.
I’ve become a professional nag (1 part vinegar, 4 parts sugar) with our school. You have to, you have to demand services and meetings. Luckily I have a daybook – which doesn’t tell me a lot – btwn me and the Ed Assist (your para). Mine are intergrated and will remain so.
After 3 yrs finally have the recognition that they will have to put in a Social/Behavioural program for my son with Non-verbal learning disorder.
I have to admit, with him I fall under the “get the Aspergers and NVLD away from Autism” list – and their own catagory with their own quirks/issues etc. B/c It’s not the same, similar, but not the same, and although, he got services… now he needs different services. So this summer he goes for a psychometric assessment, and next year they have promised him more help in navigating the playground. They have started now in June – of course… after there was a problem – Normal
The one with severe non-verbal (he barely talks and doesn’t converse) PDD (note I didn’t say autistic b/c he has a name he’s not a dx) will retain the level of support he’s had this year. He’s doing AMAZING. His DRA scores returned a Gr 2 level of reading, spelling, decoding and sentence making (using PEC’s and gluing them on a page). He’s just barely 6.5yrs old. They are going to try and find out his language comp level but they are uncertain about my suggestion – Normal
. Well the VP is… we’ll see what the PDD Teacher (goes school to school to set programming, deal with issues) says.
Last meeting is June 20th. I’d like to say it’s been easy. It’s been a long trip so far… but I truly can’t complain. I’ve heard a lot worse horror stories, we’ve had problems (ABA therapists we had to have removed, dx’s that had to read AUTISM), but it’s going well now.
I just wish I had a little more “this is what’s happening” though…. Our IEP’s aren’t as binding as yours. Our legal document is an IPRC (individual placement review committee report) and it just “labels” the child as exceptional ?? (ours being autism) but you can now demand access, meetings etc with it.
S.
Only 1 part vinegar…..I usually throw in a few pinches of salt to the mix!
I have been grateful for email because it’s been just a fabulous way to stay in touch with the teacher, even about small details of the day, and a fast email about a last minute thing is a lot easier to do than a phone call. I write Charlie’s teacher a few sentences each night about how the rest of the day went and what we did and — if something’s amiss in the morning (we’ve long had trouble getting Charlie up in the morning for school), I can tell the teacher after he’s on the bus.
Good luck on June 20th, farmwifetwo!
We don’t have a full time speech therapist but the teachers who are there are devoted and kind. One teacher came to my house before her summer vacation to help me set up a simple aba progam to go along with my play and sensory therapy.
The teacher fills out the daily communication notebook and uses forms I found online at burbank dot com slash autism. The aide gives the teacher info about lunch and that is included on what he ate of his lunch brought from home and if he tried anything of the school lunch.
The previous aide is the one we had from other elem school where she came from a regular class and was placed with him. She was almost six years and not trained or helpful. We got into many arguments at the school in AM and PM in front of students, etc.
The new aide was hired from school and has experience and is a male versus older female. I talk to him in AM and PM in parking lot or outside class. We are leaving school for MS so I see no reason why I should not or could not speak to him. The aides, teacher and AP do not like that I help another parent out who speaks little english and mostly spanish, they do also and I do not speak spanish.
Actually Kristina over the last month my eldest has been having difficulty in the playground. He’s little over 8.5 and his buddies are 9. Academically he’s as smart or smarter than them, socially he’s a good year delayed.
He got bullied a couple of times. The 2nd time the kid got suspended for 2 days. The school dealt with it quickly and he’s fine. Then he got in trouble twice. The 2nd time he got detention.. which they told me a full 24hrs after the fact.
Detention I have no issues with. He screws up, he pays. It was the refusal to put in a social and behavioural program when there is a team on the school board to deal with this.
There was no sugar in those emails I sent. I was MAD!!!!
Supposedly they are going to work on it and have started. I talked to the psychometrist today to set up the appt in July. He mentioned the Behavioural team. I emailed them and asked.
No reply yet…. like all other of these emails… they go to “god and everyone”.
I can be pushed too far. But usually it doesn’t get to that point.
They drive me batty… b/c they don’t keep me informed and then don’t listen to the suggestions afterward and then I have to work around them… like calling the OT to tell her the school’s having problems since the youngest is going into sensory processing overload with the end of school – YET, she was there all that day on Tues before they called me… she came yesterday and helped… and have them come in and FIX IT.
As I said… it could be worse… a lot worse… if nothing else… it keeps me entertained
Sheri
We haven’t had much experience with the school system yet, but most of what we have has been positive. L was diagnosed ASD just months before turning three and starting EC so everything was new for us. The teacher, aid, PT, OT, speech write notes almost everyday. Sometimes just to say what a good day he had. we also use the notebook to let school know about bad mornings, strange/new behaviors that they might be seeing, etc. We also email, and I have also called and left phone messages. L’s teacher even called me this summer to ask when my second son, K, will be turning three so they can plan what rooms both boys will be in.
What will happen when they get to kindergarten, I don’t know. All kids are integrated together, one teacher, no aids that I know of and have heard mixed comments from parents of ASD kids that it really depends on the teacher how much acceptance and understanding there is. Flexibility is key.
I’m of the you-can-never-talk enough school but it notice the communication comes much faster and more urgently when Tom’s having behavioral problems. Now that we’ve put a new protocol in place all i’m getting is smiley charts–yes, he’s doing better on new med and a shorter day, but come on, he’s still Asperger’s. But the school year is grinding to an end, I’m tired too, so be it.
(Dear farmwife: I can see your point but fear if Asperger’s is “taken off” the spectrum there will be nothing to help Tom or address his issues. While verbal, he still struggles to communicate. He likes to play but does not understand children his own age. Quirks, however, are fine, we all have them!)
Tom’sMom,
6yrs ago.. just about now, my son’s dx was Non-verbal mild PDD. 6mths later when we went back to the Dev Ped it was “speech and language delayed with global delays” (he’d just started to talk). We got ALL preschool services and funding. Got to school and they said “it’s just a learning disability, we don’t deal with those until Gr 3″.
Back through the system and since it was a re-dx it took 18mths…. dx now reads “a mild form of ASD”. Or as the Dev Ped told me “NVLD w/ S/L delay”. NVLD does not have a S/L component to it. Speech is fine now – even mastered little white lies and sarcasm, language is enough that it only give him minor issues… but read the NVLD dx… he’s textbook.
So, I appreciate the fear of lack of services b/c I’ve “been there, done that”.
What I dislike is that they “talk” for all.. and watching these two… they’re not the same and shouldn’t “talk for all”.
S.
@farmwifetwo, Yes, it’s a continuing drama/soap opera/comedy…… I’ve had a much more vinegary experience with another school district and with the current one, I’ve found myself writing “correspondence #1″ and “correspondence #2) to keep track of how many emails pass before a response comes.
Things have gotten to the point that because my son has more needs, and because he is in self-contained in a public school and always has a 1:1 aide, that bullying as you describe your son does not happen (not yet). Because of the “severity” of Charlie’s diagnosis, he gets more services without us having to ask (well, we have to ask at other times and places and submit outside evals and the whole thing).
Interesting. By the way, if you request an assessment the school has about 30 days to get it done. Unless you sign paperwork saying it’s okay for them to take longer. I had to do that for my daughter and for early on for my son because of my schedule. Basically, I had to put in writing that it was okay with me that it wasn’t done within 30 days…