I must have walked past that answer phone machine countless times in the four or so hours it took me to pluck up the courage to return the school’s phone call. I never had to listen to the actual message as I was stood by the machine as it clicked into action and heard the patient voice at the end of the phone explain that they had received my email, thank you, and that they thought we should probably discuss it. Gulp. I’d like to blame my
utter cowardice reticence to return the call (that I was guilty of ignoring in the first place) on a life long affliction of phone-phobia. Yes, you read that right- phone phobia. Don’t laugh, I know I generally have my iPhone glued to me, but it is rarely glued to my ear you will note… unless of course it is to deal with the endless stream of calls I get asking to speak to Dominic’s mum… if I didn’t answer those my phone bill would be through the roof once I’d responded to all the messages that would no doubt accumulate. That aside, I definitely have an irrational dislike of talking on the phone and almost wept with joy when the era of text messages and emails burst into existence. Given half a chance, I’ll let the phone click onto answer phone and reply by text. Yes it’s juvenile, and I make no excuses for it, with the exception of pointing out that at least with texting the person on the receiving end isn’t forced to have a conversation at a possibly inconvenient time. With a text or an email they can reply when it suits them. Texting was not an option with the school however, and an email is what started it in the first place.
The day before, just at school closing time, I had finally bitten the bullet and put in writing what can only be described as an angry outpouring that had, due to some hardcore elements of sense that warn me not to royally piss off the school that is going to be teaching my children for the next 6 years, been battered and cajoled and calmed into a short, reasonable sentence that expressed my polite dismay at what had happened. I’d honestly felt quite righteous as I sent it, impressed at my apparent maturity. But as I looked at that red flashing light, I wasn’t feeling quite as confident.
This one event, which whilst perhaps insensitive and most certainly thoughtless, was not outrageously insulting or offensive. It had somehow managed to grow in significance though, throughout the day feeding my indignation, until, by the time I was staring at myself in the mirror getting ready for bed that evening, I was no longer laughing at the sheer ridiculousness of it, I was genuinely upset. That one event had managed to suck in all the other thoughtless remarks and actions that I’d observed over Dominic’s short time in the school and wrap them up into a neat little gift package that told me in no uncertain terms that the school thought of Dominic’s place at the school as a privilege, not a right and treated me as they did based on that presumption.
As I stood in front of the phone biting my lip I contemplated what I might say to the school. It occurred to me that this one event had me questioning an entire school’s attitude towards disability and the right of a disabled child to be included in a mainstream school. That, when you thought about it, seemed wholly disproportionate when previously a few careless comments or surprising attitudes had irritated me, but not enough to induce an actual response. Having recently stumbled across another mother’s difficulties with mixing the mainstream and special needs worlds, it made me question whether in actual fact it was my attitude to mainstream education that needed to be adjusted. Had the political correctness, that is inescapable when dealing with disability issues, so influenced my thinking that I now believed that I had a right to automatic indignation at the mere thought of anyone suggesting that Dominic shouldn’t mainstream his way through life? An attitude that goes wholly against my belief that you should always try and see the bigger picture. Did I really think that that his school had a duty to tiptoe around us at all times just because he was in a wheelchair? Dear god… had I become a special needs fascist?
Ok, so perhaps that is a little extreme, but certainly I have come a long way since Dominic was born. I, along with most of the driving population no doubt, was guilty of having questioned the need for having quite so many (seemingly always empty) disabled parking bays when I couldn’t find a parking space in my before-a-blue-badge driving days. Now I have been transformed into that slightly unnervingly calm, nostril-flaring person who politely but tensely asks you if you have a disabled badge as you appear to have mistaken the last free disabled bay for somewhere to wait for your friend to arrive. There is no doubt that I have not just climbed over the special needs fence, but pole jumped, done a double twist and landed in an armchair on the other side of it. I see the world through special needs glasses, everything gets a quick assessment for accessibility, crowds, meltdown inducement likelihood and hassle before I even think about getting the wheelchair in the car. Train rides are all about spotting the disabled carriage as the train pulls in and making a dash for it along the platform (why oh why do they tell you were the first class carriage is situated but keep you guessing about the disabled one?). Even going out of my house these days presents a logistical nightmare of searching for dropped pavements, wide enough doorways, access lifts and routes through crowds that hopefully avoid Dominic being stepped over/on, pushed out of the way, having a bag smack him in the face or a cigarette flicked on him.
I have morphed into a biased, defensive, slightly paranoid growly mother bear when it comes to my son’s special needs. But I don’t know anyone with a complex child who isn’t. I expect to be let down by people after having spent nearly five years dusting myself off. Whilst yes this is a terrible indication of the current (shocking) state of services for disabled children, and yes you should be disgusted by just how public money is being saved, it does make you wonder if my very experience of being a mother of a special needs child actually makes it impossible for me to ever be in a position to unbiasedly judge other people’s attitude towards Dominic? Possibly not. But of course it was too late by this point, the email had been sent, and the answer phone was still doing that, now irritating, blinking thing.
But how are we ever meant to lessen the (perceived?) divide between special needs and mainstream, when on the one hand you have the parents of special needs children who are generally over protective, anal, and the only real experts involved with the child trying to not feel let down by people who, through no fault of their own, don’t see the world through wheelchair shaped glasses, and more over, who are so bound by a gulping, eye twitching fear of being politically incorrect, that they would never dare say how they really feel. So when a special needs child bursts into a mainstream school dragging all their specialists, equipment, protocols and diagnoses with a mother close behind, war paint on, posed ready to pounce on the slightest hint that their child is not being included (and able to quote the Disability Discrimination Act at the mere hint of questioning the suitability of the environment), is it any wonder that teachers, having spent days and half a rainforest submitting forms to beg for financial help to make sure that the school actually has enough resources to be a position to give the child a good crack at the education system, sometimes wishes that the whole inclusiony thing was someone else’s problem.
Of course giving access to children with physical disabilities who want to or are capable of following the national curriculum within a mainstream school is a given isn’t it? Very few people would be brave enough to fight the corner that anyone with any disability should go to a special school. Disability is such a wide term, and includes so many things that with a bit of stretching most of us could come up with something that hampers our style a bit. Could you honestly ever believe that a system would work or be fair where someone decided, simply on the amount of physical disability evident, whether a child could or could not achieve in a mainstream school? Where would we ever draw the line? Some disability is ok, but too much isn’t? Who gets to hold the chalk in situations like that? It’s ultimately a slippery slope that would end up making us try and compartmentalise the uncompartmentalisable. I mean, how on earth would you decide? That little Johnny’s hearing impairment and AFOs are ok for mainstream, but that wonky eye… that’s one thing too far I’m afraid, it’s off to special school with him.
I think ultimately mothers of special needs children, who have had to fight for everything, from the basic necessity to the complex requirement, have to sometimes remember the people we were before we became so battle weary. I’m not saying that anyone give up the fight to go mainstream if they genuinely believe that their child will benefit from it, I have no doubt that the other children would (a little bit of diversity, be it in the form of epileptic fits, feeding tubes or bodily fluids always keeps things exciting when you’re a young child). But I don’t necessarily think that anyone should go mainstream simply because the political correctness pushes us into believing that it’s some divine right. It leaves schools defenseless to question whether or not the child would actually benefit without being accused of discrimination. Of course there are schools that would undoubtedly use any leeway to wiggle their way out of the hassle of taking on a complex child. And unfortunately it is a huge hassle, and it shouldn’t be. And that I suppose is why I end up feeling guilty about the amount of time that Dominic demands as a new pupil starting in the school and feel the constant need to apologise, even though I know I shouldn’t be so bloody British about it all. What should be remembered in all of this however is that it is neither the school, nor the child’s fault that the process is such a shambles. Even with the best will and preparation in the world, at the end of the day I have it on good authority that it’s run by a bunch of idiots. In fact two bunches of idiots that won’t talk to each other (this is a new approach they are trying out apparently).
The guilt on my part arises from the fact that mainstream schools are expected, smilingly and graciously, to accept any child thrust their way, no matter what their need. Even if everyone involved can see that it isn’t necessarily best for anyone. If extra money and support was readily available, and this was done as a positive move for both the abled and disabled communities to have more interaction I would probably feel slightly less uneasy about it. But as it stands, it was a political move thrust upon already cash strapped schools with an awkward, unorganised and red taped process involved to facilitate any support within the mainstream schools. It is no wonder really that the smile seems slightly forced sometimes when the school talks about the next step in the process just to try and secure the basics for Dominic, and why it is so easy for them to forget to see the clear dividing line between Dominic and the bureaucracy that the process breeds.
There are of course those parents who choose to bring up their child in a special needs environment, and having dipped my toes in the mainstream water, I can’t say that there isn’t a temptation to have one less thing to fight for. Each parent decides their child’s course through life based on the unique map book that their child hands to them (and often screws up, and completely rewrites a few times a long the way) and it is of course not for me to judge other’s choices. Dominic does nothing but mainstream activities, and this is partly due to circumstances, and partly choice on my part. We did try a special needs play group a few times, but Dominic was alone in his physical difficulties and found the unpredictable physicality of the other children alarming. I failed to find what I was really looking for, which was someone that Dominic would be able to identify with, for at the end of the day, as much as he cherishes being as much like his big brother and sister as possible, he also recognises that he is different. On the few occasions that we meet up with the precious children that the world wide web has thrown our way, always, it seems, as a result of coinciding appointments at Great Ormond Street hospital (who would have thought that it would be such a social Mecca), Dominic has watched them with unguarded curiosity, and talks about them months later with such enthusiasm that both his hands and his feet waggle with enthusiasm.
Yes I have chosen mainstream for Dominic, but I have not lost sight of the fact that he is a disabled child in a mainstream world. I am lucky enough to be able to hope for some semblance of an independent future for Dominic, which means he needs to be comfortable in a world that is not designed for him and isn’t particularly sympathetic towards his needs. If I instill anything in him, I hope it will be the skill of lateral thinking, as he’s likely to be faced with many obstacles along the way, and I want him to be able to think his way out of them rather than just resenting the inflexibility of it all and remaining entirely dependent. Perhaps if I did not have this goal for him then I would actively seek a purely special needs environment to try and limit some of the added difficulties that I know mainstreaming it, both at school and in a wider sense, is bound to bring… but somehow I don’t think so. For two reasons, firstly, I think the more people in wheelchairs out and about in public, around other children, in our nurseries and schools the better for everyone. We are a weird and wonderful world, and children are amazingly accepting, until they get old enough to be scared of anything different… so expose them all as early as possible to the unscary wheelchair people. And secondly, because there just isn’t anything for children like Dominic in our community. Children with behavioural or learning difficulties or spectrum disorders seem well catered for, but I have yet to find anything that offers Dominic an opportunity to embrace, understand and acknowledge the other side of him that is anything but mainstream.
You’ll be pleased to hear that I did get over myself in the end and stopped ignoring the red flashing light. The phone call I made lead to a meeting being set up between myself and the school where I, without a hint of political correctness, just a measured amount of calm assertiveness, tried to make them pause for a second and peek through the fence into my world, whilst acknowledging that I, in turn, was realistic about the steep learning curve that they had been swept along since Dominic joined them. For now it seems that we are both doing our best to try to find a way to make mainstream work, despite the obstacles that the system continuously throws in our way. And Dominic, for the most part, is just happy to just be doing what his big brother and sister are doing albeit approaching it in his own inimitable style. I have no doubt that I have picked the right place for him, and I have no doubt that they will negotiate the hurdles that are put in the way with as much decorum as possible. I just hope that at some point the value that Dominic adds to their school is universally accepted as far outweighing the difficulties he might pose them. Perhaps that’s when real inclusion begins?
What do you think, is special needs inclusion in mainstream schools too big a mountain to climb?
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I am totally in COMPLETE agreement with you about phones… could have written the first paragraph myself 😉
Brilliantly written – as you know the fact that Harry was seen as a positive force (gifted and talented no less) at his current school was overwhelming for me, so fantastic after years of feeling guilty for his needs which his old school struggled to meet.
Shame you don't have the social groups we have here, there do seem to be quite a few for young wheelchair users, fewer for children with Asperger's!! You are an amazing mum, I've said it many times, never lose sight of that. xx
(From another phone phobic!) Thanks for stopping by my blog. Really enjoyed your writing.
Pleasure, always nice to meet new people 🙂
hope Im not leaving a ton of duplicate posts …….
I did mainstream primary, then from years 7 to 11 special school, now i'm in mainstream 6th form. My disability is totally different (i'm visually impaired) but I totally understand what you're saying about mainstream schooling. Sometimes it's the best thing for a child, especially if when that child becomes an adult they should be able to live independantly, but special schools do tend to be set up better for specific needs.
I think mainstream primary school is really important, as long as a child can cope with it, and is able to follow the academic requirements. Secondary school can be different, purely because of the nature of the subjects. I could have coped in a mainstream secondary with the academic side of things, but I was bullied at primary school and wasn't really in a position where I'd feel at all comfortable at secondary school. But when I came back for 6th form and had had that break I wasectly ready for it, and it's the best thing i've ever done.
I just hope the teachers you have to deal with will be understanding. Some are and will try their best to help, but there may well be teachers who just don't want anything to do with you, and unfortunately that makes things really complicated.
Also even if everything gets sorted in lessons for Dominic, it's likely social interaction will still be difficult. That's not to say children won't be friendly, he may end up with a brilliant and really supportive group of friends, but equally there might be children who make his life hell. I know that's awful, but it does sometimes happen. The best thing to do then is be really firm with the school, because some schools try to deny it. But I wouldn't give up, if a mainstream education will benifit Dominic you should fight for it. He may take longer to make friends, but he will find people that accept him for who he is. Also, he's likely to make better friends who do genuinly care.
I don't think anyone can ever settle the mainstream or special school debate because things are so different for each child, and what was appropriate at 4 or 5 may not be at 11. You just have to take each step and do what you think is best. I hope that everything goes more smoothly with the school from now on.
Holly, thank you so much for such a thoughtful reply, it’s always lovely to hear from someone who’s experienced it, albeit in different circumstances. As an ‘able bodied’ parent, I spend my life second guessing what will happen as i have no experience myself. Obviously parenting kids without special needs I can draw from my life experiences.
I am very aware of the bullying side and it’s something that worries me, more than anything. Primary is a relatively protected environment but secondary school scares me even to this day!
Also thank you for your lovely blog post about my last post, greatly appreciated x
And so your thoughts now are wildly different? Much of this still resonates with me. Was only today I was thinking about the difficult position of my girl being one of the ‘most expensive’ ones in school, seeing as she needs pretty much full time assistance. But then on the other hand she’s often not able to access all the ‘special’ mainstream days and trips that they do, which leaves me unable to work as I have to be available to either go with her or have her out of school instead. The system is not right 🙁
It’s so different now for Dominic because he is fully funded and the school have learnt and grown (and have a new Head and SENCo) and do a pretty great job and he has amazing LSAs. It is such a long way from the ignorance and blatant discrimination of the early years. All the problems are still rife, just not at the moment for Dominic… But then we have the EHCP transfer soon, so I’m dreading the LA fucking it all up
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