“You have to love your own baby becos everone says they are a nusance”
Sally age 8
I have come to recognise another truism! – If you are a parent of a disabled child. The school will give whatever support, you believe, is necessary for your child – as long as it matches with what the school is prepared to offer.If you want something different ,You! “The parent” who is typically the mother, become “A problem” . The more articulate you are the more you are seen as “bloody awkward”.Colourful labelsgrow, the more you persist : “too pushy”, “in denial”, “neurotic”, “deranged”,”obsessed”, “too emotional”, “irrational” “naive” are a few of the polite names given to parents.
The rhetoric from schools and education authorities promoting partnership, between parents and professionals is common. This laudable aim, if realised,could save a great deal of pain and heartache for all concerned. The ultimate goal for most parents is for their child to feel safe welcomed and a belonging to the school. This is “gold dust” one parent said. Initially parents will “bend over backwards” to keep on the “good side of school” they are motivated by the desire to make this goal a reality for their child to experience. However, because there currently exists an unequal distribution of power and authority between parents and professionals the potential for “partnership” is only likely to happen when parents conforms to the plans of professionals.
After twenty five years being with parents advocating for their disabled child, I have not met a parent who had wanted conflict with the school. It is however, the professional who has the responsibility to change what they are doing to ensure the child can feel safe welcome and belongs to the school.A consequence of seeing the parent as a problem is that it is a distraction from supporting the child. There is a shift to devaluing and marginalising the parent ,which generates a struggle that can continue for weeks, months and sometimes years.
One mother said:
“They (the professionals) made me a monster. At first, I was totally compliant with everything they told me about my son. I would have balanced on my head if they wanted me to . Then I realised they lied to me and started bullying me- now professionals are having to manage the monster they created.”
The very act of questioning the practice of a school or an authority by a parent can result in unleashing of an assault that can leave the parent exhausted. The struggle increases if the parent challenges more than one statutory service and therefore multiple professionals. Such a position can overwhelm parents, with formal letters, procedures , phone calls ,e-mails, and now texts. The communications often contains implied threats or advice encouraging the parent to simply accept that which is being offered by professionals, even when they know this will go against what the parents believe is not in the interests of their child.
Does this mean that parents are always right and professionals wrong about a child’s support requirements? Such an assertion would be absurd. However, when a parent lacks confidence in the support provided by the school or when they are unable to influence the schooling experience for their child,when parents witness their child is disrespected, denied important opportunities, with no friendships the parent is likely to be propelled into demanding change. When a parent is forced to take such an exposed yet principled position, they will be subject to scrutiny and interrogation, by a number of professionals who will hold a different position, at a case conference or annual review. Whilst such formal settings are routine for professionals for parents they can be traumatic.
If individual professionals were subjected to the same degree of scrutiny and interrogation before a panel of critical parents they would, quite rightly, be calling upon their professional associations to represent their position.
The professional in a protracted dispute with a parent will have access to supports throughout the process : they have time away from work, they can hand over to another colleagues, they can have someone to type letters,make phone calls, arrange meetings, they get travelling expenses, they get time off in lieu if they work beyond contracted hours, they can even move to another job whilst in the middle of a serious dispute with a family, and they receive a salary- Professionals have protection from a school or system culture, where professionals will protect each otherkeeping internal disagreements behind closed doors, allowing them to present a united front.No such accommodations are available to parents engaged in the same protracted dispute not of their initiation. When the professional decision is made it becomes bizarrely impenetrable. Parents are patronisingly encouraged to follow the ” Complaints Procedures” if they are “‘unhappy” with the decision. This would be another professional procedure that can take months, with little expectation of changing the original decision.
Being a parent who is knowledgeable about the education system,aware of legislation and particular policies, is not a guarantee that your child will get the support you believe to be appropriate for your child. Being the “Parent” you can be positioned so that your contributions are devalued if they differs from professionals ” in charge” because it is they who the system invests the authority. A mother of a disabled child, who was extremely knowledgeable and articulate about the complexities of her child’s support requirements, she was aware of different teaching methods, how to differentiate curriculum, adapt resourcesfor particular children. This woman wasfamiliar with the range of external agencies able to enhance the support available in school. In addition she was familiar with internal workings of thelocal education authority, where her child attended school. This mother started her professional career as a teacher in the same authority, served eight years as a special educational needs co-ordinator(SENCO), followed by seven years as a deputy head teacher, finally taking on the roleof education advisor. But now she was positioned as a “parent” again she was asking for something different from that which the school was prepared to offer. She was described as being “too involved” and “too emotional” and no longer “objective” This mother was forced into a conflict with the professionals, from the authority she had served as a senior educationist.
How can such exhausting disputes be minimised? Professionals have to learn to listen and listen then listen again first to the child and the parent advocating for their child.
The professionals will have had training, they may well have many qualifications, they can have much knowledge about a particular impairment and yet know nothing about the support requirements of Heathar who may have that particular impairment. Professionals can only support Heathar effectively if they are able to develop a relationship with Heathar. The parent, advocating for their child can be a valuable introduction to Heathar.
If professionals ask questions, to which they don’t already assume the answer they are more likely to develop a meaningful understanding with the child and learn about the child. When a person is genuinely listened too, good relationship happen. This is far more likely to lead to the parent having confidence in the actions of the professionals who are there to serve their child. Professional can also build on a good relationship with the parent when they don’t:
Tell a parent their child is not the only one in the school!
Tell a parent the school does not have the resources to support their child!
Tell a parent that support to their child – will result in support being removed from other children.
Tell a parent that you are an extremely busy person!
Tell a parent that you are an expert in this type of condition, when referring to their child.
Tell a parentthe date and time of a meeting without first checking on their availability.
Tell a parent to come to a meeting on their own
Tell a parent you have to leave their meeting early because you have an important appointment to attend.
Tell the parents of an important decision, just before you go on school holidays.
Give the parent a patronising smile and nod of your head, when you totally disagree with them.
George Bernard Shaw suggested that it was the reasonable person who adapts themselves to the world as it exists. However, it is the unreasonable person who persists in adapting the world to accommodate a different way of thinking. GBS concluded, that all progress depends upon the “unreasonable” person orthe ” bloody awkward” parent?
Joe Whittaker
April 2014.
‘they get time off in lieu if they work beyond contracted hours’
While I agree with most of the sentiment here, that line is likely to have teachers braying in laughter; as a primary school deputy head a family member is working around 11 hours a day, their head is working longer.
I do accept that that teachers like many other professionals in human services are being subject to increasingly oppressive conditions of service. The long hours do need to be challenged by teachers and their Unions. However, the ” parent” forced into a dispute with an organisation, to get the support required for their child, has no ” organisation” to oversee the hours she is required to work.
I have a friend who became a special ed teacher because she was so frustrated with the grief she was getting trying to navigate the system for her child with disabilities.
How about having a meeting with an outside expert (not too outside the system, he was a respected special ed. advisor with the Ministry of Education of Ontario) and not one staff member shows up to hear his report on his testing of your child? I’m still embarassed years later at these “professionals'” behaviour. Or the guidance department member who sits in on a IPRC [individual placement and review committee] meeting and listens to the elementary special ed. teacher make a fool of herself by saying, “I thought A. was supposed to do every calculation manually and then, use the calculator.” and doesn’t correct her at all, but later says to the parent in the hall, “We don’t care how the student gets the answer at the high school level” (which is 2 months of holidays away).” We now have grade 3 and grade 6 testing of math done by the Province so probably elementary teachers have sharpened up their knowledge a bit of what math is. Don’t worry it only gets worse. Now, I’m trying to explain to a bunch of local medial residents and a specialist why an insulin pump is better than good ‘ol sliding scale for managing type 1 diabetes. My days explaining learning disabilities to classroom teachers are over and done with. Patience, my friend.