By law Dov and Lev were allowed to go to our local public school but many principals were unenthusiastic about embracing special-needs children; school buildings were old and often impossible to retro-fit for physical disability; teachers were overworked and spent a lot of time on children with behavioural problems; and Dov and Lev would in all likelihood receive little extra support in the classroom.
A recent headline in the paper had shouted: TEACHERS OVERWHELMED BY SPECIAL NEEDS.The article had explained how inadequate mainstream public schools were at dealing with kids who needed extra help. Toileting might be a problem, I’d heard. I imagined my boys sitting in a pooey nappy, lost and confused, in wheelchairs at the back of the classroom with a stressed teacher trying to teach thirty kids to read. It was my worst nightmare. There were special units in mainstream public schools, but the ratio of staff to children was only one to six. I couldn’t see Dov and Lev managing with so little assistance.
‘Why?’ Dror said. ‘It might be the best place for them.’
‘It’s not the best place. How can you say that?’ I asked, incredulous. ‘They need to be around normal children. How does it help them to be around disabled children or kids having fits and banging their heads on the wall? How is that good for them? For anyone? They shouldn’t put all these kids together. It’s just stupid,’ I said, blood rushing to my face.
In my mind’s eye I saw nightmare number two: Dov and Lev in a special school silently observing the encircling chaos, occasionally wincing at the harsh noise of children crying, kicking and screaming. I pictured teachers running around frenetically, preoccupied with all the other children while Dov and Lev were left alone.
My boys were so passive, so accommodating, so sweet, so full of potential . . . They had the chance to be okay if only we worked harder. I had to work harder.
‘What do they get out of having regular kids in their class?’ he asked stubbornly. ‘They can’t run around with them in the playground. They won’t be able to join in all the activities in the classroom. They’ll just be left out.’
‘Well, at least they’ll see what other kids do, and everyone says, everyone, that inclusion is the most important thing. I don’t want them shut away in some special school. They should be part of the community.’ I was infuriated now.
‘I don’t see what the big deal about inclusion is,’ said Dror.
‘Well, you haven’t read anything about it, have you?’ I said bitterly, conveniently forgetting the mountains of scientific papers he was reading. I’d just ordered two books from Amazon on the topic but hadn’t had the guts to read them yet. He didn’t know that though.
‘Let’s try and have an open mind,’ he said as we walked up the gently sloping ramp to the entrance.
Elizabeth Worth gave us both a strong handshake and ushered us to sit down at a round table, sweeping off a mound of papers and dumping them on her messy desk. Thoughts ran through my mind as we talked to her. She was in her fifties, dressed neatly but casually in a white shirt and navy pants. She had a kind open face . . .
Seems like a normal woman, nice and normal, I said to myself. But did she really know what went on in the classrooms, behind closed doors? Dov and Lev couldn’t complain; they wouldn’t be able to tell us if they were being mistreated . . .
I sighed loudly. It was just too hard.
‘She seems nice,’ I said to Dror as we left, deciding not to fill him in on all my thoughts this time. Give the poor guy a break.
‘Really nice,’ he agreed, putting his arm around my shoulder.
‘Let’s have a coffee,’ I suggested.
But as we sat and sipped our lattes I couldn’t find the words to describe how I felt. I just knew that I didn’t want Dov and Lev, us, me, my family, to be labelled as ‘special’ with a capital ‘S’.
Dov and Lev are normal, my body screamed. Hear that? Normal!
The following week I skulked around the playground at Jasmine’s school, looking for ramps and access points. No steps in the primary school area but that damned school assembly hall seemed only accessible by a huge staircase. Undeterred, I called the school secretary and made an appointment.
‘Dror and I are meeting with Jasmine’s school,’ I told Mum over the phone. She was always complimenting the school, so I thought she’d be pleased.
‘Oh! What’s wrong? Is something wrong with Jasmine?’ she panicked.
‘No, no,’ I sighed. ‘About Dov and Lev. Remember I told you we were looking for schools?’
‘Yes, of course, darling. But Jasmine’s school? Is that a good idea?’ she asked.
‘Well, yes, I think it is.’ I gritted my teeth. ‘They would be a normal part of the community. That’s important.’
‘But darling . . . do you think it would be good for Jasmine?’
‘I think it’s good for Jasmine to be comfortable with her brothers around. Don’t you think so?’ I said, my voice resonating with anger.
‘Well, yes, but it would also be nice for her to have her own independent life, separate from the needs of Dov and Lev.’
‘I don’t think she needs to have a separate life,’ I said. We were a family and I didn’t want us to be separate. I also didn’t want Jasmine to be ashamed of Dov and Lev, and rationalised that it would be easier for her if they were at her school and in her social setting instead of their disabilities being a whispered rumour among her classmates. But really, I didn’t know what the right thing was, only that this had to be my and Dror’s decision.
‘Well, if you think it’s okay . . .’ she trailed off. ‘I’m not sure if I agree.’
While we waited at the school office I practised my breathing.
‘So how can I help you?’ the principal asked as we sat down on the leather lounge adjacent to her desk. She smiled so sweetly that I forgot to be nervous for a moment.
‘Well, Jasmine is so happy here,’ I said, ‘and we would love her brothers to be at the same school as her . . . but they have very special needs . . . I guess we want to get a feeling for whether the school would be able to handle them,’ I finished.
‘Okay, well, tell me a little bit about them,’ she suggested.
I gave Dror the eye. Come on, your turn.
Dror took the signal and gave the principal a detailed medical analysis of Dov and Lev’s condition with explanations of MCT8 and DITPA.
The principal seemed overwhelmed.
‘What he’s saying,’ I butted in, ‘is that they aren’t mobile, although they’re improving, and use a walker, but they aren’t walking independently. And they can’t talk, but we are working on communication signs with them. They often indicate “yes” or “no” when we ask them a question.’
The principal waited for more.
‘Have you ever had anyone . . . um . . . with any kind of problem,’ I said, saying ‘problem’ slowly so as to incorporate all the possibilities, ‘at the school before?’
‘Well, we did have someone with a broken leg and had to adapt the classroom,’ she offered. ‘And there have been a few children with learning difficulties.’
Shit, they’ll have no idea what to do with them, I thought.
We discussed whether the school could get government funding to enable extra teaching support, and whether the classrooms and common areas were accessible enough.
‘I’ll contact the Association of Independent Schools and get back to you. Really nice to meet you,’ she said, holding open her office door.
‘You too,’ I agreed, shaking her soft hand.
‘Fuck,’ I said to Dror as we walked out the front gate. ‘I don’t know if they’ll be able to handle Dov and Lev.’
‘This isn’t the place for them,’ Dror said definitively.
‘But wouldn’t it be nice for them to be at the same school as Jasmine? Be a part of the community?’
‘When’s our next appointment at that other school?’
‘In two weeks, but it’s far away from us,’ I said, sighing and wondering if Michelle had
started investigating schools.
I asked her the next time we met for coffee but she hadn’t and was just as confused as I was.
Dror and I went to two other special schools, both over an hour’s drive from our house. The first focused on children with physical disabilities.
‘Look beyond their disabilities,’ Dror prompted when he saw me wincing at the sight in the playground. The kids were all locked in their assorted wheelchairs; some had a ring around their forehead for complete head support. They were unable to run, chase, climb and skip: it was a completely different world to Jasmine’s school, where children’s faces blurred as they raced past me. I forced myself to picture Dov and Lev there, in their walkers. I couldn’t make myself imagine the wheelchairs. That was still a taboo word for me, just like ‘disability’ had once been. I could see that they would fit in, that they could belong, and I turned away and pretended to dig in my bag for something, hoping not to succumb to tears before our tour was finished.
It took me six months to make another appointment with Centennial School; the books on special schools I’d bought through Amazon were still untouched. I moved them from my bedside table to the bookshelf.
‘Look, that’s the pram I want to buy,’ I said to Dror, pointing to a double-stroller by the sliding glass doors of the school entrance. It was standing next to a whole depository of well-used special-needs equipment.
‘I’ve only seen it on the computer, none of the shops have it. That’s so great, I can finally see it in real life,’ I said, inspecting the buckles and footrests for its suitability. Dov and Lev were growing out of their toddler pram and I was looking into a special-needs pram for twins. I had googled ferociously and found many sites for twins and dozens for disabilities, but twins with disabilities? That was the niche of the niche. The positive thing about their going to a special-needs school, I thought, was that I could meet other parents in a similar situation. Be part of a community. How nice would that be.
‘Lovely to see you again,’ Elizabeth said as we walked in.
‘You too, thank you,’ I replied, smiling genuinely.
On our tour of the school Elizabeth greeted each student by name as we walked the corridors and peeked into rooms. During recess a teenage boy with Down syndrome explained his role in the tea room and shook our hands firmly. He struggled with the ‘c’ in ‘coffee’ and asked us to repeat our names several times before he mastered them. He was lovely. I had been too judgmental. Around the corner from the tea room was the hydrotherapy pool.
‘How often do the kids go in?’ I asked.
‘At least once a week,’ Elizabeth said. ‘Although this week they have swimming camp so they’re going in every day for ten days.’
We walked into the room where the four- and five-year-olds were taught. There were five or six children in each room, with two teachers. One child was in a complex wheelchair with her head flung back, her eyes rolling.
I heard Dror’s ‘look beyond the disability’ echo in my mind, or maybe he whispered it in my ear. Deep breath.
A few other children sat quietly at their tables and appeared quite ‘normal’.
What’s wrong with them? I wondered, scanning their bodies.
One girl looked a little like Dov and Lev. She sat in a special chair that supported her around the chest and was bolstered between the legs so she couldn’t slip. She was focused and attentive.
On the wall was a photograph of each child and a description of their medical, physical and social needs as an easy reference for the teachers and assistants. I walked over and stood in front of the laminated signs, yearning to read them all in detail, to understand who Dov and Lev might be learning with, but I was too embarrassed to linger.
‘This isn’t necessarily an end point,’ Elizabeth said. ‘We don’t aim to keep the children here. If we or the parents feel that they are able to go into a mainstream environment, we facilitate them to move on.’
Dror and I nodded fervently.
‘It’s funny,’ she added, ‘the more successful we are in encouraging the children to excel, the more often we have to say goodbye to them.’
Funny? I thought. That is the antithesis of funny.
Her words did bring me comfort, however. I was getting better at living in the moment and saying no when fear beckoned. My puzzle pieces were still in disarray but I felt more confident that a new picture could be made. Something beautiful.
If I couldn’t know what the future held for Dov and Lev, how could I choose a school that would label them for life? I only wanted a school for now. I still believed that one day those naughty brain cells would finally zap into action and send the right signals to the right places.
What I did know now was that Dov and Lev needed special attention and staff who knew how to draw the best out of them, who had the skills to understand and communicate with them. Would they ever learn to read? To count? Maybe the DITPA would work miracles after all, or the medical research would bear fruit. Either way, I wanted to give them the best chance and would send them wherever they would be best understood. I was beginning to get it: there was them, and there was me. I had a lifetime of baggage: shame, guilt and judgment. When I saw the other children in the special schools, often this baggage didn’t allow me to see clearly. Dov and Lev had no baggage. They embraced life as they knew it and found joy in everything: from the velcro on their AFOs to the swinging straps of their walkers.
I needed to remove my ego and see the task for what it was: finding the best for my boys.
TWENTY-EIGHT
I put on black pants, small vegan-vinyl heels, black eyeliner and a silky buttoned shirt. It felt nice to be out of my jeans and sneakers as I drove to the Voiceless office to brief our pro-bono facilitator for our upcoming strategy meeting.The strategy I had written more than two years ago had been accomplished and we needed a new one. We were about to bring the whole Voiceless team together to talk about goals for the next two years.
‘Marjorie’s just handed in her resignation this morning,’ Elaine said as I sat down at my desk.
‘Seriously?’ I asked. Shit. That made two resignations in two weeks.
‘After buying her house in the mountains, she just can’t handle the commute,’ Elaine explained.
After the meeting I power-walked to my car. The prospect of facing double recruitment and training was too much. More bloody tears.
Although it had been six months since I’d started my sabbatical, I felt myself cringing at the prospect of going back into the office. But I also had to, wanted to, play a role in the recruitment and restructuring process. If I didn’t choose our small team of staff, Voiceless would feel even more lost to me. I had to step back into the role of CEO again. So I returned to the Voiceless office every day, deliberating over the issue with my father and meeting with our staff to hear suggestions about restructuring, as well as drafting job descriptions, talking to recruiters and interviewing the first round of applicants.
Monday morning and my phone beeped. It was Lisa. Hi, how are you? Would love to get together this weekend, Sunday morning? Let me know.
I left it a day to respond, hoping she would forget or have made other plans. I felt like a terrible friend, but I just didn’t feel like socialising. To me it was lose–lose: either I had to avoid discussion of Dov and Lev, thus feeling fake, or else make an effort to share, making me vulnerable to responses that inevitably upset me. Get-togethers left me exhausted, swinging violently from feeling offended to reassuring others that I was OK. I didn’t know what the solution was.
Yes, I craved solitude and isolation, but I still didn’t have the guts to cut ties. Or perhaps something else kept me hanging on. A deep knowing that, yes, my friends cared.
I finally responded on Thursday. Would love to see you too! It’s been ages! Sunday not so good, let’s try next weekend? xx Okay, she responded, uncharacteristically curt. No smiley face. No xx for kisses. Not good.
Fuck, she was angry. I’d better call.
<
br /> ‘Hey, Lisa, how are you?’
‘Fine,’ she said, her voice dead.
‘Well, I thought I should just call you. All this texting is annoying, isn’t it?’
‘I guess.’ Silence.
‘Everything okay? Have I done something to upset you?’ I was starting to panic.
‘Well, to be honest, since you’re asking, seems to me you’re just not that interested in our friendship any more,’ she said. I had never heard her sound so cold. ‘That’s okay. Look,’ she continued, softening slightly, ‘I understand you’re busy and have a lot going on. But I just need to know who my real friends are. I don’t have time for superficial friendships. I want my friends to really care. Actually want to see me.’
I felt suddenly angry. Wasn’t I the victim here? She was the one who couldn’t read my mind. But I managed to step out of my victimhood and see her point. From her perspective, I must have seemed distant and disinterested.
‘I’m sorry you feel like that,’ I said. Twenty years of friendship down the drain. Was that what I wanted? No.
‘It’s not that I don’t care,’ I implored. ‘Really. I didn’t mean to make you feel that way. Let’s talk in person?’ I needed to see her face, read her body language.
‘Okay. When are you free?’ she said.
‘How’s tomorrow night? I can come when the kids are asleep.’
The next evening I drove to her house, terrified of the conflict, of the emotions that would surface. My breathing was laboured. I knocked quietly and held my breath. I didn’t want her to break up with me. I knew that now. She opened the door and we brushed each other’s cheeks with a kiss.
‘Hope you don’t mind,’ she said, looking down at her floral pyjamas and fuzzy pink slippers. ‘I’m usually in bed by nine these days.’
I was pleased she still felt so comfortable around me. She made me rooibos tea, remembering the soy milk, and dandelion for herself.
‘Look, I’m sorry I upset you,’ I jumped in. ‘It’s just really hard for me at the moment.’ My throat constricted and tears welled.
The Miracle of Love Page 23