The first day of school when Isla was on the field waiting to be taken to class with all the other eager 5 year olds I was a blubbering mess. A well meaning mother came up to me and said “don’t worry it gets easier with every child”. Little did she know for me it had got a whole lot worse and was completely different. With Isla’s 2 older sisters they were the other children on the field ready to start their learning journey and I was the proud mother taking photos and not in the least bit teary!!! This time round it felt like I was sending a 3 year old off to school on her own and I just couldn’t see how it would work…..and unfortunately it didn’t !
The school generously had assigned a teacher aide to Isla 4 days for 3 hours until lunchtime which quickly became 5 mornings when everyone realised Isla needed an aide to be a part of the class. She had lunchtime unsupervised and I would arrive to pick her up after lunch with a fear that she would not have returned to class. When walking to her classroom some days I could hear her crying from just beyond the school gate (yes she was that loud) or her peers would run up saying Isla cried a lot today or her cousins and sister would tell me they could hear her howling from their classrooms.
It wasn’t because she didn’t want to be there. She loved school and often I would stay in the classroom for another hour or so as she didn’t want to leave. The crying would usually be a result of it not being her turn. Sometimes the things she was crying about were things she actually couldn’t do such as sharing news by herself or answering a question correctly but that wouldn’t make any difference to her distress. Isla still struggles now to understand why it can’t always be her turn. She was also very “observant” in class and would get upset if the teacher hadn’t wiped everything off the whiteboard for example and things weren’t arranged a certain way. Things that were hard for her would set her off as well as she didn’t want to do them. Writing was always particularly difficult and still is.
We tried everything….firstly once we were denied ORS (which is basically Government funding which in our case enabled us to have the choice of whether we chose Mainstream or Special School education) we decided to see if we could control her ADHD and sensory seeking with Ritalin* in the hope it would help her learn. We tried every dose and option but it turned Isla into an anxious finger picking shell of herself who wouldn’t eat but it didn’t stop her problematic behaviours, it just zonked her out for a few hours which tended to have a rebound effect when it wore off.
We introduced a sensory box to stop her standing up and fiddling with the whiteboard, a wobbly cushion, weighted beanbags, visuals, emotion charts, bite necklaces, teacher/teacher aide training, her own iPad, timeouts and regular meetings with her team. Yes there were a team of us. A SENCO, SLT, OT, TA, RTLB**(WTF?? There really needs to be a manual or course when it comes to special education to learn all the abbreviations and roles of each person involved). Anyway we really gave it a good go. Nothing helped, in fact it seemed to get worse as children in her class were progressing and Isla wasn’t. The children would sit down and write a story about a class trip and illustrate it with a picture…Isla was unable to even recount events let alone write or draw a picture. The gap had already grown too wide.
As time went on and we had run out of ideas to keep Isla engaged and she was attempting full days, she would take herself off to the computer, play with games on the edge of the classroom, fall asleep or play on the iPad and as the teacher had a class full of children to teach she couldn’t spend one on one time just with my child understandably. Her teacher aides were fantastic but as she couldn’t cope with the sensory demands and pace of the classroom she would spend a lot of her time in a room with just her teacher aide especially when her behaviour was disrupting the class.
Her class mates were awesome and so accommodating and accepting of her. On her last day in their class they had all drawn a picture and compiled a book and went round a circle saying what they liked about Isla and that they loved her. We had a party where they all danced to Wiggles songs, even though they had grown out of them preschool, just to make her happy. They were such a lovely group of children and I hope that Isla taught them something along the way even if it was just patience and tolerance.
On the last day of school I took Isla into school and introduced her to her wonderful teacher who had taught her for 2 terms. I said “hi meet Isla, my undrugged daughter”. I had decided with the help of our paediatrician to take her off Ritalin. The teacher at the end of the day was so excited to report that Isla was so engaged, social and happy all day and she had seen the real Isla but unfortunately she would have trouble teaching her as she wouldn’t sit still and had spent a good part of the day out of the classroom !!! We persevered for a few more weeks the following term but things went downhill. The last straw for me was when Isla went to the toilet and came out without her skirt or underwear on and continued to play on the playground oblivious. Her sister came to her rescue to dress her but this was distressing to all of us. She needed more help.
Isla was moved temporarily to the Satellite class within her school while we reapplied for ORS funding. This took a year and was a very stressful time preparing the application as if she had been turned down we would have had to go back to mainstream schooling which clearly hadn’t worked for her. However in the meantime Isla was now in a place where her needs could be met. She was in an environment where she could learn at her own pace, set up with visuals and sensory breaks. With 1 amazing teacher and 2-3 teacher aides full time. She was being taught social skills and independence and her behaviour was mostly under control. She thrived and was so much happier and my life and anxiety levels changed too.
Her development is still painstakingly slow but she is definitely now in the right place. I am very grateful we gave mainstream a go as otherwise I would have always wondered what if. I am also grateful we happen to have a satellite class at our school where Isla can still be part of our community and attend the same school as one of her sisters and cousins. I would like to see a little more inclusion with her class and the rest of the school but this is happening slowly. Best of all Isla now has a best friend Samantha who is in her class. They have a beautiful connection and although they don’t communicate the way the rest of us do just watching them together is so special. Sometimes it’s still a little heartbreaking to see the other children in her year participating in various sports or making their way to assembly to perform. It normally catches me off guard and I grieve a little in what could have been but quickly move on and refocus on my special girl Isla.
*Ritalin (methylphenidate) is a central nervous system stimulant. It affects chemicals in the brain and nerves that contribute to hyperactivity and impulse control.
**SENCO (Special Educator Needs Coordinator), SLT (Speech Language Therapist, OT (Occupational Therapist), TA (Teacher Aide), RTLB (Resource Team Learning and Behaviour)