My friend and colleague the artist Jean Edwards whose work I mentioned in an earlier piece that I had written (The art of expression January 30th 2014), recently drew my attention to a blog called “The Diary of a Not so Ordinary Boy,” which is written by the parent of a young man named Sam who has Down syndrome. As might be expected this mother is able to articulate the experiences of living with a child who presents with some learning difficulties, in a manner that most of us would struggle to achieve. The number of years I have worked in this field are insignificant when it comes to an attempt to understand the lives of parents who have experiences such as those described in the piece brought to my notice by Jean.
Sam’s mother describes an interesting transition in the life of her son, one that she herself clearly was unsure about at the time when she made some significant choices. From the language she uses, it is evident that this parent had made a commitment to ensuring that her son was included in all aspects of education and the wider society in which he lives. But it is clear from what she says that she has felt frustrated with some of the difficulties that she has faced in enabling Sam to be included in a number of activities which would seem to be more readily accessed by his peers. Having over an extended period of time made tremendous efforts to enable Sam to participate in a range of out of school and extra-curricular activities, which would allow him to make friends and be a part of what she describes as the “ordinary world,” Sam’s mother has embarked upon a different direction. The way she phrases this is to say:-
“Now, though, I have learned to do things a little differently. Now, I am happier for him to march to the sound of his own drum, rather than mine”.
Sam’s mother has made decisions that resulted in Sam moving further away from the “mainstream” that she had desired and to seek refuge in more specialist provision. The language that she uses to describe this process provides ample evidence that this was not a decision taken lightly.
“Now that Sam is in special education it would be easy to accuse us of excluding our son from society, hiding him away from the cruel gaze of the outside world, and, as a younger mother, that was certainly something I was afraid of. My son wasn’t somebody to be ashamed of; he was (and is) different and proud, and we are proud of him. But when it came down to it, I wasn’t prepared to sacrifice his education to an ideal of inclusion that I didn’t see working for him”.
In many ways I find these words of Sam’s mother to be very sad; not so much because of the decision that she has made, but because of the situation that led to her taking this action. At the conclusion of her piece, she writes
“Rather than sending Sam out into the world, maybe we need to invite it into ours. And that means more than school.”
My interpretation of these words, and I hope that Sam’s mother will forgive me if I have got this wrong, is that whilst she, and probably other parents with children who are described as having special educational needs, have made a concerted effort to have their pupils join the “ordinary world”, this world is not yet prepared to fully accept children like Sam. I am not so naïve as to believe that in many instances this is not the case. I am indeed acutely aware of schools and other organisations that find many reasons to reject children and describe them as unsuitable candidates for the kind of institution or society that they have created.
How should we react to the situation in which Sam’s mother finds herself? In her blog she states that Sam is now far happier attending clubs that are run by professionals who understand and meet his individual needs. He is, in one sense, far more included in the activities of these than he ever was in those more “mainstream” organisations, where he was not understood. I can fully appreciate her sentiment that maybe we need to ensure that others are invited into Sam’s world in order to help them to understand his needs and those of others who have been marginalised or rejected. My main worry is that it is far too easy to refuse such an invitation and that the many battles that have been fought by parents over the years for their children to become included in the “ordinary world” may become diminished if we are less than insistent on seeing the mainstream change. (See Parents and teachers, learning and teaching together March 3rd). And here we have another problem. Why should the mainstream change if they see no reason to do so? Unless they are enabled to see the benefits to be gained from creating a more inclusive education and social system, they are unlikely to make efforts for what they may see as the sake of a minority.
I am in no way critical of Sam’s mother for the actions that she has taken. I know personally several others who have made similar judgments about the inability of the mainstream to provide for their children and have followed a similar path. However, I do feel that it is an indictment of society if we still believe that it is acceptable that children who are perceived as being “different,” a label which in actuality usually means “inferior,” can be denied access to the same learning and social opportunities made available to their peers. It is surely the responsibility of all of us to support Sam and his mother in bringing about the change we would all wish to see.
The “The Diary of a Not so Ordinary Boy,” can be read at:-