Day 60 of #100 day project

Day 60 (20 of writing) – Sunday 30 April 2023 – 09:20 am

Part 2 of why I advocate for family voice in the Disability world.

Read part 1 here –

Once we had settled into our routines at home, we started to investigate options to extend Mitchell’s life in the community (apart from our walks). Mitchell would need a one on one person to be with him at all times, to carry the oxygen and be capable in case of emergency. My first attempt at this was to take Mitchell and Holly to a playgroup together, and while Holly was accepted into the group easily, and other Mums sat and chatted while their children played, I had felt like an outcast as I trailed around with Mitchell carrying his oxygen and trying to get him to engage. It felt like it was never going to be an option, so I thought it would be better to look for a kindy or playgroup that would make both Mitchell and I welcome. The early intervention team organised an education support worker (ESW) to come to our house and ‘play’ with Mitchell to build his skills, and then helped us find a playgroup which was supportive of children with higher needs. Mitchell was able to attend once per week, with both his ESW and myself present and explore a new environment with other kids. This playgroup was run by volunteers in a church hall in Papatoetoe, and not supported with government funding. It was one of the first examples of being accepted into a community that we found. It didn’t meet my needs of wanting to find another mother friend who had a child like mine, but Mitchell was happy and content exploring with his ESW. I think at that stage, I just didn’t have time to nurture a friendship.

The playgroup was just once a week, and after a while we were keen to increase Mitchell’s exposure to other people, and started trying to find a ‘mainstream’ option that would work. Once again, our EIT stepped in, I consider us lucky that the team we had kept trying. Mitchell started going to Kiddywinks in Manurewa. Kiddywinks was a kindergarten associated with the Baptist church, and while they would not accept Mitchell on his own, he could come with his ESW. The missing piece was that both the ESW and the Kindy were not prepared to take on the emergency trache cares which meant I would have to go too. I wanted a break, so our compromise was that I would drive Mitchell to Kindy, he would go in with the ESW and I would sit in the carpark. My break was to have a sleep in the car, or read a book. One day, I heard music coming from the church next door, and peeked in to find they were teaching line dancing. I started giving this a try. I had learned at this stage, to take opportunities that present themselves. I got some exercise, adult company and I was still in reach for emergencies.

We were extremely fortunate to have both a great ESW and to find a kindergarten that had a flat, tidy and safe outdoor play area. The staff there were great at including Mitchell (with Barbara) and he got to experience pretty inclusive ‘mainstream’ education. It wasn’t perfect that I had to sit outside and wait in the car (just in case), but it was certainly a step up from staying at home. The risks for Mitchell were that his tracheostomy could come out/be pulled out/get blocked and this would leave him unable to breathe, plus if he were to trip or fall, he had no protection over his organs in his stomach. He had (and still has) no muscle over the intestine, liver and bowel, and if he were to fall on anything sharp, it would go straight through the skin to his organs. Hence, when he was first learning to walk (3 to 4 years of age), we were as close as we could be – but, at the same time trying to give him a feeling of independence.

In December 2008, the twins turned 5 years old and it was time to work out a plan for school. We were zoned for Alfriston School, a small school with a slightly rural catchment that went up to Year 8. Holly started there on her birthday in December as she was well ready to begin. We had begun working with our early intervention team on what would work for Mitchell, and it was suggested that it was going to be better/easier for him to go to a ‘special school’. We started completing paperwork about funding and were given a choice of apply for High Health Needs or ORRS funding, in order to support Mitchell to go to school. Remembering at this stage, he was still tube fed, using Oxygen via his swedish nose on a trache, wearing nappies, not eating orally, not able to talk, but he could vocalise sounds and a bit unstable on his feet, reverting to bum shuffling if tired or going up or down steps.

While we were trying to work out what the differences or benefits of either of these funding packages meant, I had arranged a visit to Rosehill Special School, which was the closest school for Mitchell to attend. I went alone, as Phil was at work. That visit crushed my soul. When I exited the car park I was in floods of tears.

I was shown classrooms, the swimming pool area, therapy and sensory rooms by the one of the schools deputy principals. She was enthusiastic about what Mitchell could achieve there, how they would look after him, what would be available to him – but it felt bleak. It was a realisation once again that there was such a stark difference to how Mitchell would experience school to how Holly would. There was only a very, very small green space for play, teenagers roaming in the same playground area that looked enormous to me, when I thought about the safety of Mitchell in that space. The school felt tired, and although there were two new classrooms – one of which Mitchell might go into, the rest of the environment was made me feel anxious. I couldn’t see our beautiful sweet boy going there. But, equally, I couldn’t see how he could be safe at Alfriston school, with lots of kids running about, doing kids stuff – how would they know not to pull out his tube, trip on his oxygen tubing, or push him over accidentally. I desperately wanted him to start school, but at the same time neither environment felt safe.

I talked over my fears with Phil and our team, and we decided we would wait a while, take some time to think over what would be best. After a lot of angst, we decided it would be unsafe and realistic for Mitchell to attend mainstream school, and went down the path of ‘special school’. By early 2009, we had discovered that there could be an option of attending a ‘satellite class’ – these are classrooms catering to ORRS funded students, with high or very high needs, but hosted at a mainstream school. Students attend a classroom with peers, but attend some of the mainstream activities at the school. Unfortunately, Alfriston school, which Holly attended, did not offer a satellite class. This meant once again, separate schools for our twins. Closer to us, than Rosehill Base school was Manurewa East School, which had two satellite classrooms. This time, I went along to look with more of an idea on how ‘special education’ might look. It was a compromise – this had safety, it was two classrooms set apart from the other classrooms, but with a small fenced grass area solely for the students in these classes, it had a set up with a lunchroom/meeting room for the staff in the middle of the two classes, with big glass windows where they could watch through if the teacher was out of the room temporarily. It was new, and bright and shiny, with a smart board, clean looking education toys, visuals hanging on the walls, and most importantly a friendly teacher.

If felt better – not perfect, not what you imagine your child’s school life to be like – but here, we could see safety and adapted learning in place. It was flat, without steps and there were only about 5 or 6 kids in the class at any one time. We decided this could work. Mitchell would still be with other kids attending mainstream school for assemblies, to go out into the playground with his teacher aide, to learn from other peers who did not have learning disabilities, who could speak, who could run and play.

Satellite schools are hosted at a mainstream school, but run by the ‘base’ special school. This affects how the funding given by the government is distributed. In a mainstream school, if a student with ORRS funding attends, the allocation is attached to the student and the number of hours given is used how best matched to that student in Teacher Aide hours, the mainstream school will normally have a SENCO (Special Education Needs Co-ordinator) who works with implementing the therapy, development of the teacher and/or aides to assist the learning of their students with extra needs. When you attend a special school or a satellite (hosted by a special school), you also tap into their therapists. They come with Speech Language Therapists, Occupational Therapists, Physiotherapists, and sometimes a Psychologist and/or social worker. The input from the specialists is kind of on top of the funding allocated directly to the student – this meant for us the biggest input and benefits for Mitchell could be received through the base school.

Next up, was to choose whether the High Health Needs or ORRS funding was best. Little did I know back then how this decision could affect us and him later in life.

To be continued

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