Our daughter Claire is soon to enter her last year of primary schooling. Since our daughter's birth we have always felt that we, her parents... as her natural and legal guardians, the people having the ultimate responsibility for her care and wellbeing .. should "naturally" be the principle decision makers in all of the important aspects of her life. Two years ago I co-authored these views in an article published by Interaction, "From Management To Partnership... the Change In Relationship Required for Quality Service". Countless times before that... and many times since...our decisions have been taken out of our hands and the ensuing and inevitable struggles have been hard work. Admittedly we have honed our advocacy skills along the way; however each day seems to put these beliefs to the test. Trying to be "typical, concerned parents" has caused us considerable pain and anxiety.
We developed a clear vision early
We have single-mindedly pursued a full and inclusive life for her, starting from the very first weeks. On her second day of life we were told that she was "a little Mongol baby". This news was delivered with the most awful air of gloom and doom. We were told that we could put her in an institution if this was what we wanted. (It wasn't exactly recommended, but the doctor said that he had to tell us this as he went on to list a heap of things that could be wrong with our baby.)
Thankfully our next professional visitor congratulated us on our beautiful little girl and started to paint for us a positive future for her. She said she could learn to read and go
to school. We had just begun to see this view when Claire became very sick, facing the very possible diagnosis of leukaemia. Again the doctor's advice was bleak, advising us not to go through with any treatment because of her disability. He said, "You wouldn't want to put her through all the nasty treatment, now would you?"
Thankfully Claire recovered. In a state of much anxiety, we may have followed that doctor's advice. We probably wouldn't have been strong enough then to reject and fight it. It took many months to see her as a person rather than the label and set of "problems" she had been stuck with.
In those first years of her life we felt the most positive step would be to obtain the best education possible. In order for her to take her place in the community she needed to be part of that community. We knew the best place for her to learn what it is to be a community member was alongside other children from her neighbourhood at school... where all the other kids are educated.
Early Intervention with a focus on education
To prepare her for this big step - at the time one not taken by many children with the 'intellectual disability' label... was to give her a head start with an early intervention program. We made the decision to seek a program that emphasised academic and communication development. Most early childhood programs on offer for children with this label, emphasised (and still do) physical and self help development. It took quite a bit of hunting around before finding education focused assistance.
By the time she entered school she had the beginnings of reading and numeric skills. She was able to communicate verbally and was becoming a very social young lady. She had an established group of friends from her neighbourhood from attending playgroup and pre-school. Claire was very confident and happy to go into the new situation, having had a head start in her academic development.
Expectations
The biggest problem we faced in those first school years was the teachers' low and"different" expectations for her. We'd had high ones and she'd lived up to them but Claire quickly learned that it was OK for her to not to do the same amount of work as the other children. She was getting bored. Of course this was interpreted as being tired -"must be all the extra work her mother does with her at home".
When she learned that she wouldn't get in trouble for running away from teachers, she began playing "chase me" with them. When we interpreted this as a game, what we got was "Oh you nasty parent! How could you dare put the nice kind teacher under so much stress. She can't even sleep at night for the worry of it? Back in your parent box, we know what's best for your child!"
The following year we felt the need to step in and do something about what was happening with Claire's learning. Our decision was to go into the school to teach her ourselves. We offered the school our assistance (I'm also a trained teacher) with programs, monitoring and volunteers to work with a small group of children that included Claire. This offer was taken up and proved effective. It was good to see Claire on the road to reading again and not being taken out of the classroom by herself.
Please explain it again ..and again
Later that year our family moved. I went through the drama and trauma of potential rejection when the headmaster didn't know whether she could attend. It was obviously a very new deal for him. I had to do lots of fast talking to convince him that he should have a go. In the end, she went. But why should we have to go through this - everything hinging on the whim or goodwill of the school staff?
That year turned out to be one of the high points of Claire's time at school. The teacher was a real jewel and was fully supported by all other staff. For the first time I had the feeling that Claire was regarded as a real person by other adults. She was really treated the same as the other children - was made to attend to lessons but with her individual needs catered for to the best of their ability. Even I was accepted. I asked, and was accepted, to come into the classroom and do some one-to-one tutoring with her.
Lessons for others
One day when she had not been long at this school, Claire's teacher relayed the story of some older boys teasing and bullying Claire. Her cousin confronted the offenders and gave them a good lecture, including the fact that Claire was just an ordinary little girl. Many times we have found that the other children at school, especially her class peers and friends, have been spontaneous advocates for Claire.
The following year, another move and another lesson. This time (refreshingly) the school acknowledged their lack of expertise and sought my advice. Although acknowledging the help, the teacher made a strong recommendation for the next year: that as a parent I should not be involved nor would I have any say in what programs Claire would engage in... because they'd decided that the SPECIAL CLASS was where she belonged. This was against everything we had ever believed in and had used every ounce of energy avoiding. We obviously weren't going to lie down without a fight!
We put our case for keeping Claire included in the typical classroom to the principal. Thankfully our advocacy efforts and valid arguments swayed a caring headmaster and another battle was won. Not the war however - the new teachers that year were not so accepting, and so the enthusiasm, standard of teaching and expectations dropped. We had to make a hard decision to keep Claire at home in the mornings to tutor her in the academic subjects. She re-joined the class at lunch-time for the afternoon sessions. In the end, we had no choice but to move our home so that it wouldn't be near enough to a"special" centre.
Claire has been at her current school for three years now and is included in all aspects of school life. With the co-operation we have fostered between ourselves and the staff we have aimed to have Claire as ordinary and un- special as is possible. We have always asked and suggested that no "special" allowances be made for Claire and that she be treated the same as all the other children, but with her "individual differences" catered for to the same extent as the other children.
Parents as Senior Partners
The school has been great; however I had good reason to disagree with an educational decision made a while back. I wrote to the school voicing my disappointment and urging them to go back on their decision, with the notion of parents as senior partners, given as one of the reasons my point of view should be taken into account.
I received a very knee-jerk reaction from the headmaster in the form of a letter. He put his position very strongly. He said parents could at best be only equal partners. "The school is accountable to the EDWA for providing an appropriate education for all its clients and therefore should have the final say". He then suggested that my help and enthusiasm for Claire should be continued, but in a different way, by taking on the traditional roles of parents .. covering books, library roster and the like. He also suggested that I should not supplement her learning at home.
We ignored the tutorial advice and at the last "case conference" he acknowledged the positive effects. He also now refers other children to do what I am doing!
The struggle to be typical
It is hard to believe the constant struggle it has been and the never ending balancing act that is necessary to maintain school attendance as a positive experience for her. At times we have had to accept some situations that are not optimal .. but not for one minute have we ever been in doubt that she should be anywhere else but in the typical everyday school setting where one would find her brothers and sisters. Claire loves school and has always anticipated going there with eagerness and enthusiasm. She is now in grade 6 and she is part of a little clique of friends who do everything together. With these friends she also attends the local gymnastic class, girl guides, and is a member of a T-ball team which participates in the district competition on Saturday mornings. On weekends she has her friends over to play or for sleep-overs and she has invitations to visit them.
Hope for the children
Mostly we are happy with the way school life has gone for Claire. We are sure she has taught as much as she has learned. We have hope for the next generations because we see her peers in every situation showing the adults the way. Their acceptance of her either as a close friend or just a classmate has been unanimous. The main lesson we have learned is to hold on to our right to make the important decisions but to foster cooperation between all parties so as to give the best possible chance of getting this happening and thereby achieving our goals for Claire.
Reference: Robinson. P. (1996). The Ongoing Struggle . Interaction v.10 #2 p.13-15.
Reprinted with permission from the National Council on Intellectual Disability.
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