Last post Sat, Mar 29 2008 11:47 PM by JuliesMum. 5 replies.
My daughter goes to a school where up until recently (a new principal) everything went so smoothly! This new head has no idea about any issues to do with disability either physical or intellectual!!!!! The school councillor is just a pawn of the bean counters of the Department of Education!
Every so often my daughter's full-time aide has to have a training day - and I have always stepped in for the day to be her aide! This is now not acceptable because the new head doesn't like it!!!! I'm fighting this one - my little one does not want a stranger doing her catheter and the teacher is not capable (in my opinion) of seeing to her physical needs as well as all the other kids in the class! The head thinks I'm spying on her teachers!!!!
The school alwasy had a wonderful 'open door' policy before and parents were welcome to come into the class rooms at any time!
Has anyone else had problems with their choice of aides and/or parents not being allowed into the classrooms. I would like to hear all opinions. (I'm not an over-protective mum but the actions of the current teacher and head have made me very uneasy about their ability to care properly for my daughter!)
While I have not had a child with a disability in a school system, I have worked with schools in various capacities (as a teacher, disability awareness advocate, "gifted children" parents group founder, school board member, etc.), and have a few suggestions.
Firstly, I know this might sound simplistic, but I would suggest another effort with the principal, in a conciliatory, non-demanding meeting. Words like it would be "helpful," and "I know you want the best" and even, perhaps, "while we may have gotten off on the wrong foot," while difficult to speak honestly, may open his/her where confrontation has not. I am not saying that you were confrontational, just that a final peacemaking effort may be the first, best way to solve this. Bringing some disability materials with you, such as publications or films, would be helpful.
The next step is to go to the school board, I think probably member by member rather than first addresing a full meeting, and asking for help. You may find a sympathetic ear somewhere there. I hate to say it, but if you can do a little "gossip," you may find that someone on that board has a disabled relative or some disability experience. Then, that person can do some advocacy for you. However, just "cold calling," even without background information, is within your right and can be influential. Or, alternatively, writing a letter.
Failing that, you can work with what I assume is a PTA in the school. Again, can you find out via word of mouth if any of the officers has a disabled relative? This sort of thing is very sensitive, and time consuming, but worth the effort because you want to build an advocacy network to work for you. But again, even without personal information, which you may not be comfortable with or able to discover, there is very likely someone who will be sympathetic to you and can get things moving.
If neither school board members or PTA members have disability experience, or can advocate for you, then I would suggest a "Disability Awareness Day," for these individuals, and/or, if possible, a second day, or open session for the community at large. There are a number of organizations that can provide speakers for such an event. People from local/state chapters of all of the "illness" related national organizations, like MS or Lupus etc. can usually provide a speaker.
Such a day often opens with a speaker or a panel, of which you could be a member, followed by a brown bag lunch, with "disability experiences" in the afternoon. Able bodied people get to be blindfolded, and discover the life of the sightless, local equipment distributors will usually lend wheelchairs so people can experience what it is like to try to navigate through small doorways and into inaccessible baths, and up and down stairs, etc. This is usually followed by small group discussions. These types of days are an eye opening experience for most involved, and I have been involved in several hundred. I have never seen one fail to bring a much higher level of awareness.
Your (or a) local minister might be able to help. The National Council of Churches has a Committee on Disabilities (of which I was VP for several years), and can provide materials through the denomination (many denominations have their own materials, and the Council has access to materials as well). Even if the minister is not aware, it will probably be difficult to refuse help.
The awareness day event is not as difficult to organize as it may sound. If you can get only one or two friends to help, get the speaker(s) lined up, the local news outlets will usually do a good publicity job with a simple press release or phone call to the feature editor or events editor. Often, the feature editor will send a photographer and reporter to the event and you can get double coverage. The PTA and local churches and other faith groups can put the event in their newsletters. A two to three month lead is necessary to get the coverage.
When this is all over, I would guess that the principal might have a slightly different view of things. You have every right to request this assistance, and I wish you good luck. Others may have simpler answers, but these are my own thoughts and experiences. Please feel free to send me a personal contact message if you would like more support along these lines. Best wishes. Bonnie
There are a few questions I have after reading the first post. One how old is your daughter? When I was in elementary school I did not have an aide. I was taking care of my bowl and bladder needs on my own with maybe the assistance of the school nurse. If the child has the function level to cath and change themselves then they should. The younger they start to be independent the better the quality of their life later on in my humble opinion. The aide may actually be percieved by the other students as special treatment. I got a lot of that when I would get permission to do things differently. Secondly is there a local disabled advocacy group? In my state we have a state agency that will go to the school on behalf of the student. I know they were called in when we faced a similar situation when I was a child. Third question would be do you meet with the principal and her teachers every year before the start of school? Fourth is there a head of special education at the district or council level? THIS WOULD BE THE FIRST PERSON TO CONTACT!!! My parents made a working relationship a top priority with this person in my school district as I was the first truely mainstreamed student. Fifth, how much selfadvocacy does your daughter do? I wish that I had learned to be my own self advocate at a younger age. Would have help deal with the other children when I was growing up. As it was I was/am more comfortable people that are 5 years older to 5 years younger than me.
Right, Charleh, the head of special education at the district or council level should be the first person involved. I guess I just thought that position was unfilled as it is the clear first step. States differ regarding advocacy, but that too is a great suggestion. I also assumed no local advocacy group, which was why I tried to establish the steps in how to build an advocacy network. All of your suggestions are superior, and the best is self sufficiency at the earliest age. I just assumed we were dealing with a very young child here with complex issues. Thank you for your insight and suggestions. We all need to offer the advice we can from our various experiences. Bonnie
Thanks for replying Charleh, my daughter is 8. Julie is quite independent but has not got the self-cathing yet (working on it and we are close), but she is plagues with very nasty recurring UTI's with reflus and kidney scarring and so we want to keep this procedure as 'clean' as possible. Juls is learning but not quite there yet! We are running a balancing act with her bowel management and sometimes she just needs help to get clean!
I am very mindful of her not being made fun of! (This has been a problem in the past). The current aide is good she backs right off and gives allows for maximum independence.
My problem is with the school suddenly changing the policy for allowing me to be her backup aide - on perhaps 2 days a year when her currant aide is sick or in training.
I've had multiple talks with the principal and she does not want a parent in the class because the teacher might feel uncomfortable - she is not thinking about the child's needs and rights at all. This just makes me very angry and again reinforces my uneasiness regarding their "thinking".
Believe me I know how important it is for Juls to gain independence as soon as she is ready and willing to accept it. I do push gently to make sure she faces some of her own stuff and to get her going.
Juls at 8 is quite a good speaker - but is still a little young to understand what her rights are and to ask for them when it is not happening.
I feel that as her main carer, mother and chief advocate that this is my job for the moment. Also some people need some education! It appals me that the Educators are sometimes the last ones who wish to have any education themselves. (A number of the ones that I have met - know it ALL because they had a friend with Spina Bifida at college or school!)
I also really like what Bonnie has to say - I am emotional at the moment and mort than likely need to go back and "smooth" it all over a bit - but to tell you the honest truth - I'm just a bit sick of having to do this all the time. I would really love the Department of Education to have mandatory courses for all principals, registrars and the teachers directly concerned with the teaching of special needs kids.
Sorry all - just a bit tired and worn out by this one!
Thanks Bonnie for your reply - you have wonderful knowledge and Charleh also has marvellous suggestions! I will try some of both.
I have written a letter regarding the multiple disscussions with this principal and I was feeling so overwhelmed by it all and frustrated that I even sent it off to my solicitor for his comments.
He is a very level headed man and asked if he could 'tinker' with my letter and take some of the 'emo' bits out and he added the word 'discrimination' to the letter - I wasn't going to go there but he thought that every point I made regarding my daughter's safety issues were valid and that the Principal should be asked whether she held the 'comfort' of the teacher to be greater than that of the safety of the child?
I liked this because he really summed up exactly what I was feeling! I am going to send the letter because it is the truth of our situation from our point of view but I think I will also then do some back peddaling to get things on an even keep again.
