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Friday, December 31, 2010

Inclusion of special needs children in mainstream care: ideal, or idiocy?

After many years of failing to include children with special needs in mainstream care and schooling, we now attempt to include every child, regardless of the scale of their particular difficulties. We are living in an age of political correctness, and it's an absolute taboo to suggest that inclusion of all special needs children is anything but fair, beneficial and right. I want to have a closer look at inclusion and tell you about the unintended side effects of some inclusions that I've witnessed.




As I mentioned in a previous post, one year I had two children with extremely demanding 'special needs' in my preschool group, one with a form of Spectrum Disorder (autism) and one with Oppositional Defiant Disorder (violent refusal to comply). I haven't even mentioned the third special needs child in that group of 20, who was a sweet, quiet child with global developmental delays (her levels of physical, communicative and social development at 4½ years of age were more like those of a 2-year-old).

Was inclusion good for these children, and was inclusion good for the other children in the group? Was inclusion 'fair' for the staff involved?

I met 'Bobbie', the child with global delays, when she was still in the toddlers' room. She was a happy, compliant child and nobody felt an urgent need to fill out the reams of paperwork required to gain a special needs assistant for her benefit. Her failure to socialise and her slow development of motor skills (movement control and strength) and language were noted, but in a busy toddlers' room, who has time to do special daily activities with one child out of 16? Who had the skills to know what activities would be suitable for her? Nobody was offering the staff special training to cope with her special needs. Easy babies are easy to neglect, and Bobbie was physically cared for but not helped to catch up.

Bobbie moved up to my preschool room in January. In a centre which was open for 12 hours a day, the government in its wisdom would only supply one extra, non-specialist staff member for five hours a day, and it took us FOUR MONTHS to get the necessary paperwork completed and approved to get this tiny amount of assistance for what, by then, was a roll call of three special needs children. 
 
I did try to make a special effort to communicate with Bobbie every day, and other teachers commented on how much more she was speaking to me. Within nine months she was speaking in short sentences to all the staff and knew her numbers and the alphabet, something that emerged once we had our extra staff member who could spend time with Bobbie while other children slept. I'll call that a win; perhaps if Bobbie had been at home with mum and her siblings, she would have got even less verbal and intellectual exercise.

But my training had included absolutely no information on how to extend a delayed child's physical skills within a busy preschool curriculum, and even when I asked for help, our resource teachers (all as sorely stretched for time as we were) weren't able to give me many concrete activity ideas that were appropriate for anything but a one-to-one situation. Bobbie was still falling over her own feet, and she was still completely socially isolated from her peers, who had no sympathy whatsoever for her communication difficulties. Nine months later, little had changed.

If Bobbie had been the only special needs child in my room, I might have had some hope of doing (and implementing) some research on her condition (in my own time, unpaid) and I could have worked on increasing the other children's empathy for her differences. But I was drowning already trying to deal with 'George', the ODD child, and by mid-January I was also caring for 'Mick', the SD sufferer. That's 3 special needs children in a room of 20 children, with 2 carers. Bobbie's needs retreated into the background as the room staff went into crisis mode. 
 
Was Bobbie benefiting from inclusion? On balance, I'd have to say it wasn't what she needed most. Yes, her communication skills progressed and she was able to show some cognitive (intellectual) progress. But she remained isolated and entirely passive within the group, and her physical development stayed on hold for the remainder of her last year at preschool, while we tried to cope with much squeakier wheels.

My introduction to Squeaky Wheel Mach 1, George, was a huge hug and smile freely given. I remember thinking what a delightful child he was. In his best moments, George was highly intelligent, affectionate and a wizard with open-ended toys like construction kits; I soon built a strong relationship with him. 
 
But George had, in his own words, 'a monster inside him' which burst forth almost daily and created havoc for his mother, his teachers and his peers. When the monster exploded because George had been asked to share or take turns with a toy, or stop climbing the furniture, or stop trying to push Bobbie off the computer chair (a daily confrontation which would result in Bobbie expressing her rage by screaming piercingly), or move to another area because it was time for a transition in our daily routine, he would become uncontrollably violent, hitting, kicking, biting, throwing furniture, screaming, dribbling, spitting and hurling four-letter words at anyone who came near him- and often if we walked away to try to ignore him, he would chase someone down, usually a peer, with the sole intention of hurting them. 
 
I would take him outside away from the other children, leaving the room understaffed, feeling that this was safer than leaving him there (except of course for me; I was kicked, punched, scratched and bitten while removing George from the room). I talked to him constantly while he was out of control, gently reasoning with him, reassuring him that I loved him and rarely losing my cool, but it had no effect at all. After these outbursts had run their course- which took up to an hour- he would become a sobbing, shuddering mess, begging to come back into the room, cuddling me desperately and wanting to sleep for hours.

I spent hours at home Googling possible causes of ODD, sourcing special diets and strategies for handling him, contacting everyone from DoCS to his mother, who was a sobbing, shuddering mess too every time she had to leave work and come to pick her child up because he had been suspended for the day AGAIN. Nothing made much difference. 
 
By April he had already kicked one assistant hard enough to cause soft tissue damage; he had scratched another savagely all over her arms; he had pegged a wooden block at another, striking her close to the temple; he had given me such a good uppercut that I had a painful bruise on my jaw- and he had punched, kicked and otherwise traumatised the other 4- and 5-year-olds in the room to such an extent that many were suffering from school refusal. He pulled the art off the walls, he swung like Tarzan from hanging display lines and destroyed them, he threw furniture, he broke equipment (including my electric keyboard). We were unable to help him maintain impulse control; we didn't have the staff numbers- remember, it took us four months to get approval for an extra worker- and we didn't have the required skill set or any offer of training. I wrote specific behaviour plans, working off gut instinct and knowledge of the child in the absence of expert advice, but had no time allocated to train the other staff to follow these plans. Most of my assistants seemed to believe that they should be able to control George's outbursts by being firm enough (which patently obviously didn't work), or that it was all George's mother's fault and we should just expel him; special needs training was desperately needed, but not funded.

George didn't last long enough to benefit from the extra (untrained) special needs staff member; a week before the final approval came through, he was finally expelled from daycare after coming close to throttling one of his smaller peers who had done him no harm at all. It was the last straw for the other child, one of the 'school refusers', and the little one's mother predictably presented the centre with the 'it's him or us' ultimatum. As George's mum left the centre with him for the last time, she screamed at him that nobody here liked him, that she was going to lose her job because of him, that he wasn't allowed to come to this school ever again because he was so naughty, and so on all the way to the car and out of our earshot. 
 
Was inclusion a good thing for this child? I think of the scared little boy who trusted me and cuddled up to me after the monster had run amok being told by mum that nobody here liked him, when the truth was that nobody here had the skill set or the time to deal with his needs without seriously neglecting the other children. I think of him being shuffled off to another non-specialist centre, forming a trusting relationship with another carer who yet again would have to look after him without the required training or staff-child ratio to make real help possible, and eventually ending up in the too-hard basket again. It breaks my heart.

While all this was going on with George, Squeaky Wheel Mach 2's needs had been on hold too. None of the staff had specialist training in dealing with his behaviours either, and we had no way of anticipating Mick's mega-disruptive activities as he had been enrolled without any mention of special needs by his parents, despite having classic signs of high-functioning autism which unfolded as we watched in horror. 

At 4 years of age, he spoke in one-word, mispronounced exclamations, slapping at us when we came too close and screaming as ear-piercingly as Bobbie when he was thwarted. Within a few days of arriving, he had opened a supposedly childproof drawer while we were dealing with an outburst from George (one of his special talents was for understanding how things worked mechanically), extracted the staple gun and started firing it at other children (fortunately it was empty). Within a few weeks, he had bitten many of the children and pulled the totem tennis pole out of the sand in the sandpit, swung it around and inflicted a serious head injury on another 4-year-old. 

He screamed his way through rest time, or if he did go to sleep (after one carer sat with him exclusively for up to an hour), woke just as we had cleaned up the room to go outside and went on a rampage, throwing boxes of toys all over the floor, tearing displays off the walls and screaming at such a deafeningly high pitch that everyone in the room had to cover their ears. He urinated in the waste paper basket inside and on the astroturf outside. He had no idea of his own strength, and when he tried to join in the boys' superhero games he would really hurt them. He and George obsessed over the same toys and clashed constantly, and we were constantly separating them and dealing with two outbursts at once.

Over time I came to love Mick as much as I adored George. He was, again, a very affectionate child once he trusted me, and his biggest problem was his lack of communication skills. I realised that his frustration levels were huge, and his impulse control and understanding of consequence were zero. 
 
When George left and our extra staff member was finally allocated, we were able to source some help from a special needs consultant. We learned to use flash cards and hand signs to help Mick understand us; our relationship with him improved, but he still needed constant one-to-one supervision, as he had no sense of cause and effect at all and would over-react physically at the drop of a hat. Life improved for everybody for the 5 hours a day that the extra staff member was available to watch him and withdraw him from the room when he became too disruptive. I was able to involve the rest of the children in caring for Mick; they helped show him what was acceptable and unacceptable, told me when he was doing something dangerous, and even started to involve him in their games and offer him play companionship. He was in great demand for games of chasings, as he was a fast and tireless runner.

But Mick often attended from 8.30am till 6pm at night. Before and after the extra staff member was available, one of us tried to watch him and cope with his extremes while the other coped with the other 19 children, including Bobby. It didn't work. Children came to us crying almost as soon as we took our direct gaze off Mick; he was tired by the end of the day, his frustration levels were huge and he lashed out at anyone in his path or threw things randomly, connecting with unsuspecting passers-by. Heaven help everyone when we needed to change a nappy, or comfort a child who had fallen over; Mick seemed to know when we weren't watching him.

In the end it all got too hard. Mick's parents, tired of hearing about the problems we had with him, withdrew him and enrolled him at another centre- again, without any warning of his special needs. He was suspended within days. My heart bled for him, too.

I think Mick did benefit from the love, the sign language and the structure which we provided in his life. He just needed a constant watcher for every moment he was with us, which- again- was not funded.

The difficulties are not confined to Australia, I might add. Read this blog post from the US, written by the parent of a special needs child:
Beyond the broom closet

So, in my experience, the special needs children are not really getting what they need. But what about the other children in the class? 
 
Let's just focus on a few of their 'special needs'- because all children have needs, and all children have a right to have those needs met.

'Ian' had come to us from life in a refuge, after experiencing extreme family violence. Was exposure to George and Mick's extreme behaviours good for him, do you think? Or was inclusion an ideal pursued at his expense? He retreated into stunned silence every time there was an outburst, and anxiously reported back to me that people were 'fighting' even when the other children were playing perfectly normal superhero games. He had been enrolled in a search for normality in his life.

'Ilona' was an exceptionally gifted child whose parent didn't recognise her special need for extension and support. She needed one-to-one interaction, as her intellectual abilities were far beyond those of her peers and she was refusing to come to school out of boredom rather than fear. Until she developed a personal one-on-one relationship with a staff member she would completely ignore anything they said, or argue the point and refuse to comply. How well do you think we were preparing Ilona for school in the midst of our 'inclusion' chaos? See my post on Gifted Children if you have any doubts about Ilona's own special needs.

'Tom' I have already mentioned in another post. He was being bullied relentlessly while all this was going on and our attention was diverted by the major violence occurring daily.

'Maria' started displaying overtly sexual behaviour and language in February, just after reconnecting with her father. Slot in dozens of calls to DoCS between those to George and Mick's parents, then contemplate how much time we had available to deal with the needs of this extremely unpredictable, vulnerable and damaged child.

I could go on, but I think you'll see where I'm coming from.

Despite the horror year I experienced with these children, I do still believe in inclusion- but not at the expense of every other child in the room, and not at the expense of traumatising staff. Two members of the room staff were on antidepressants by the end of March, and both put it down to workplace stress. I loved trying to help these children to integrate, but I failed because the situation was completely unworkable. I hated neglecting the needs of 18 other children in the room on a daily basis because we were all so consumed by the special needs of two. I still think about these children often, and wonder sadly what else I could have done.

My conclusion from all of this? Until governments are prepared to pay for appropriately trained special needs staff for every moment that a special needs child with extremely violent behaviour or serious developmental delay attends a mainstream school or care centre, inclusion of these children is a recipe for disaster for all involved- not least for the special needs child.

And parents, spare a thought for the hard-working staff who struggle to help and care for your children, whatever their needs. We DO try. We DO take our responsibilities seriously. But sometimes, we're simply stretched in too many directions at once.


4 comments:

  1. gosh AA,....I am exhausted reading your post... we are experiencing something similar at Miss6's private school. they have taken on a set of very autistic twin boys,.(I would think for the additional funding). these children have no language skills at all apart from screaming. In a class of only 12 children, these 2 boys are a major disruption. they scream,..kick,...shout,...throw things,..break things etc. Miss6 comes home regularly saying that "A&F" make so much noise that she can't concentrate. that they hurt her,..and throw things that hit other kids. sigh. i am all for inclusion., but not at the expense of my childs development. I have spoken to the school. it is their policy to be inclusive.

    great,. but at what price?

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  2. Sadly we have fallen over backwards in an attempt to redress past wrongs, and now other children's needs are being ignored.
    Inclusion should NOT mean your child is subjected to violence- the school needs to do better. Maybe they need to read this blog to remind themselves that the main question is whether anyone is actually benefiting from this inclusion!

    I'd be collecting your facts- contact the school again and ask what behaviour plans and support structures they've put in place for these kids to avoid fallout on other children. If that gets no result, approach the headmistress/master with a letter- see the letter structure provided in the bullying post. It can be easily adapted to a letter on unintentional discrimination by the school against your child's needs.

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  3. In an ideal world, there would be funding for all kids that caters to their needs. In an ideal world, we wouldn't need to spend so much tax payer money on managing violent criminals and defending our countries against possible invading hordes and terrorists.

    Meanwhile, we are stuck in a less-than-perfect world where the only way to help some kids is at the expense of others. What sort of decision is that for someone to have to make? No wonder teachers burn out.

    I feel for your special needs kids - those with acronym labels and those without. And I feel for you. Keep up the great work Annie - your compassion and caring make a real difference in an unstable world.

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  4. My son has communication and speech delays, and receives services by attending our towns integrated preschool. It seems to work well, largely because there is an excellent teacher-student ratio, and support from trained specialists. My son has made great progress, and friends who have children without special needs enrolled are also very happy with the program. Children with special needs attend for free; those without pay (still a very affordable option compared to the available alternatives). So I think it can work with the right support, but I feel for teachers and children who don't have the resources they need.

    Of course, my son's needs are somewhat mild compared to those you describe, and it remains to be seen how he will cope with kindergarten, when there will be fewer resources focused on him and his needs. In his case, there is the potential that he could improve enough over the next two years to cope quite well. I am very grateful to live in a state that sees the merit in properly funding early childhood education in order to prevent more serious problems in the future.

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