It’s been quite a while. Amos went in and out of mainstream and we rode upon the swells and slumps that came our way. The experience enabled our family to grow and adapt in ways we never expected, and gave an idea of how daunting it really is to be inclusive.
Our departure from mainstream was expected, and it was dilemma from the start because we knew how hard it was going to be. There was also the FOMO syndrome (Fear Of Missing Out); not for the academic part of it but for the guilt of not giving the kid a shot at a regular school environment with neurotypical peers. Don’t try, won’t know. So we calibrated expectations and enrolled Amos into a mainstream primary school with only one objective in mind: develop his speech and social skills.
This was a challenge while attending Special Education school (SPED) because many of Amos’ classmates had limited verbal skills and little spontaneous communication amongst them, and the reduced social interaction wasn’t ideal for a developing child. The chance at going mainstream gave Amos the opportunity to simultaneously develop speech and social skills, even just by immersing him in an environment that would expose him to more regular speech than if he had remained in SPED. To us, this came first. Any form of academic achievement would be a bonus.
We spoke to the school management and teachers and got us all aligned on goals and expectations. We prepped Joel about being the big bro of a special needs kid in a big mainstream school with hordes of chattering school kids, talked to him about the need to manage the impressions others might have of him. We brought Amos to the school during the holidays and got Joel to show him around and acclimatise him to it. We got Amos his bag, personalised his stationery, bought him into the idea of going to a huge school for “big boys” and got him all hyped and excited. Then we sprung off the board and dived into a hectic first day.
All was well until we reached the gate, when all of a sudden he shed his usual bubbly self and stopped. We tugged and he held his ground. The queue of schoolchildren started piling up behind him, then purled their way around him as if he was a rock in a stream, many staring as they passed. It took plenty of cajoling and encouragement, tons of you-are-a-big-boy-like-everyone-else slogans, before Amos grudgingly relented and got through the gate by himself. It felt like a mega sales pitch at 6:30 in the morning and it completely drained us. A few days on we thought things would settle once he got used to them, then we started receiving text messages from the teachers.
Amos had been refusing to enter the classroom.
After getting past the gate, Joel usually walked Amos to the classroom and dropped him off at the door. It was a time before the teachers informed us that Amos would stand at the threshold, all geared-up with his bag, water bottle and lunchbox, waiting for the form teacher to invite him in. When she weren’t there, he’d go on standing outside with all his gear for as long as an hour and nothing would move him, not his classmates or the allied educators or teachers. He wanted only the form teacher and it was clockwork. At home we talked to him, dangled incentives and disincentives. Nothing worked. We had to let him be until the tedium of the routine worked some understanding in him.
It took months.
Then came another antic. This time he was refusing the toilet.
You see, there were regular toilet sessions for the younger pupils and Amos refused them all. We were deflated. We thought of him wetting his trousers before a class of 40 kids and we wanted to burrow into a hole and hide there forever… When called to go, he’d stand at the urinal without releasing a drop and for as long as it took to frustrate his teacher. Then it got to a point he wouldn’t leave the class at all. We got in a shadow teacher for him, for a month Papa went down to school daily to coax him with incentives and disincentives. Nothing worked. He wouldn’t pee even after school, after holding it in for 6 hours straight and being racked with spasms, and release a deluge only when he was back home to his goody old toilet. Remarkably, for the weeks he kept this up, he never wet his trousers. But if we left it alone, he’d have a flabby and overstretched bladder by the time he turns 12.
So we tried another tactic—and got big bro Joel to pick him up after class and shepherd him to the toilet. For days Amos went along but didn’t pee. Then one day Amos hustled his brother out of the toilet and locked himself in a cubicle. Joel stole back in and waited stealthily behind the door with ears pricked. The stream of relief he heard was music, and got him racing back out to tell mummy the good news. Success was probably a combination of factors: setting, time of day, sense of empowerment. And while it lasted, we started Joel on the routine of spying behind the cubicle and reporting mission accomplished to his waiting mummy. Joel got right to it. The routine worked, and it endured for the remainder of Amos’ mainstream journey.
Amos became quite a spectacle for the repertoire of antics he had. So people stared. It was inevitable. Some of them stared in a way as to wonder if the school took in challenged individuals alongside the gifted ones. Others stared out of curiosity. Some offered well-meaning remarks that didn’t turn out too well. A shadow teacher was crucial because Amos needed plenty of shepherding and scaffolding in his learning, and a child with special needs is one child too many for the class teachers to handle against a class full of frisky neurotypical children. But it was expensive to say the least. If you’re looking for the challenges of being inclusive. This is undoubtedly one of them.
On the brighter side, the mainstream stint demonstrated the effects of peer influence in speech and independence in daily chores. Expectedly, Amos began verbalising far more often than his time at the special school. He felt more empowered to do his own writing, pack his bag, work as a group and help out with classroom duties. There was routine, regulation and a greater responsibility on Amos to conform to instructions, timings, deadlines and standards that took him out of his comfort zone. To some extent they compelled him to adapt to lesson changes, manage expectations and disappointments and be aware of his own actions.
Once during art class, Amos was absorbed in his work and was immensely proud of it—until he glimpsed the work his classmates were handing up. He perceived the difference in quality and stopped working, his enthusiasm vanishing as if there never was. According to the teacher, he then folded up his work and slid it quietly into his bag. On another occasion he had spelling. He usually did pretty well for spelling, though not for that session. When the scores came back, he crushed the paper without a word and shoved it into his bag. It was a lot for the poor kid to chew and swallow, but we learned that peer influence (or pressure) had a profound effect in reinforcing his understanding of social dynamics. For certain it revealed a side of him we never knew.
Academically, we weren’t surprised at the rate Amos was falling back. He had his strengths and shortcomings. He thrived on reading and writing and stayed away from math as if it were radioactive slime. Mandarin was also quite out of reach due to his limited exposure and the amount of memory work needed. The teachers also couldn’t spend enough time with him when they had a full class to deal with. So the learning challenges was as much a matter of limited cognitive ability as limited resources.
This gave us a glimpse of the magnitude of such challenges in an inclusive setting. While in mainstream Amos received assistance from the allied educators (AED), and until then we never realised the number of “special needs” embedded within the neurotypical community. Many of these needs might be undiagnosed upon admission into the school, and with increasing regularity we see the AEDs being deployed to tend to them.
Resources appear to be stretched thin, and we were forced to consider that our mainstream school system and scaffolding might be a long way off from total inclusiveness. Trained professionals extend not only to the AEDs, but mainstream teachers may also need to be equipped with special education skills and adopt tailored approaches (e.g. a variety of break-out and integrated classes) for challenged individuals. Most certainly, the mainstream enrolment system would benefit from accurate and early means of diagnosis. Without it, we might never know what an inclusive system truly means or the scale and type of resources we need to support it.
We have known kids with special needs who have attempted mainstream and returned to SPED. Amos is now one of them. But the experience brought benefits. Amos’ desire to communicate verbally has vastly improved, so did his ability to read, spell and write. He wanted to be smart and capable like his classmates and his streak of independence grew. By the end of it he could dress himself as well as his big bro, do buttons and zippers and all. So in a way, we have—to an extent—accomplished the objective we had for him in a mainstream education.
In deciding to put Amos back to SPED we had a great deal of reframing and resolving to do. We wanted to make sure we weren’t delusional over what he and his future could be. We don’t want to blame the system either. That would be denial. By the time Amos turns 18, SPED will end and he would have come to the end of the road. If he isn’t deemed employable by then he probably wouldn’t be employed for the rest of his life. So we’re working within the thin margin between making the best of his abilities and expecting too little of him, and in 9 years or less we’d have a better idea of where the path leads. Until then, we have the work cut out for him and us.
Phew! A long post after a long hiatus.
In a flash, Amos is 9 going to 10, and as sprightly as ever. We wonder if he’d ever comprehend or remember what we’d been through with him, or whether it mattered at all. He’s now back in SPED, has been for the past year and thriving in it with the help of wonderful, dedicated teachers. We find comfort in that, and in knowing that however bumpy the road ahead might be, we do not tread it alone.
“…for we walk by faith, not by sight.”
2 Corinthians 5:7
Image credit: Mche Lee (unsplash.com)