Latasha and I first met in Melbourne, as we underwent an intense week at a conference together (one of the many we have attended for our children, as she mentions below) and were reacquainted at a more recent workshop. She’s a fellow Mum-of-three-boys and her love for all three of her sons was so obvious from the moment I met her. For those of us yet to tackle the school scene, I am so thankful to her for honestly sharing her experiences and lessons she’s learned along the way on her son’s schooling journey.
I am a mother to three gorgeous boys, two of whom have now left home. Tim is our 21 year old traveller who loves skateboarding and snowboarding and lives five minutes north of us, renting with his mates, studying at uni and working part time. Ramey is 19 years old. He is a skateboarder, and lives with his mates five minutes south of us, as well as studying at uni and working part time with his Dad. Charley is our 14 year old basketballer, dog lover and high schooler, who loves drumming, hip hop and performing once a year and is a great help in the kitchen. He also happens to have Down syndrome.
Charley has had a huge impact on our whole family. He has brought so much love to this family, as have all the boys. Even as the older boys stand at 6ft 4” and 6ft 2”, I still get my mummy cuddles. Charley has taught me patience, humour (very necessary in a household of boys), and how to slow down in life and he has also taught me to speak up! It is necessary to advocate for our children, and that has become even more obvious throughout Charley’s education.
Charley’s primary school years were mostly a happy, positive experience. The particular school we chose was well known for the extra support for kids with special needs which is what attracted us in the first place. The Special Education Unit, Prep and Grade One years were fantastic. Charley was reading well, keeping up with his peers, giving speeches and generally enjoying school. As the school was growing, so were number of children with special needs. However, the support did not increase along with the numbers. The teachers were under a lot of pressure. Charley was flying under the radar as he was compliant and his needs were not being met. He was going backwards. After meetings, going over IEP’s, uncomfortable moments and irreparable relationships between myself and the main teacher, we left half way through Grade Three.
Soon after, we found a lovely private school of 200 children. There was no special education unit but support was offered in the classroom with kind and compassionate educators. This is exactly what we wanted. Charley loved this school and made lots of friends. In his final year at this primary school, Charley ran for Sports Captain for his sports team. He gave his speech in front of the school and received the loudest cheer for his efforts. He did not make Sports Captain but he did achieve the position of Sports Leader and supported the Sports Captains in all their duties. I wrote a letter of appreciation to the Principal thanking all of Charley’s educators over the years. It was very sad saying good-bye to this school and leaving our comfort zone when we moved towns to be with my husband, John, and closer to Tim and Ramey.
Charley and I were used to the older boys coming and going. My husband had worked away for six years, coming home every second or third weekend. After the older boys had spent time away from home travelling or studying, this year we are all in the same town again. It’s nice for Charley to have his dad home every night and we have a weekly family night which involves Tim and Ramey and girlfriends coming over for dinner and board games. We all love it. 2016 was going to be the wonderful year of togetherness, with everybody in the same town, Charley starting high school and my mother living only two hours away. I planned to take time off to help Charley with the transition into high school. We looked forward to this time for new beginnings, however it hasn’t been quite as rosy as anticipated.
I did my homework on finding the best high school for Charley. I made all the phone calls and decided out of the seven calls we would visit four high schools, of which one was independent, one private, and two state schools. We knew in our hearts the last school we visited was the one! The Head of Special Education (HOSE) was very approachable, we felt comfortable and Charley was very welcome. We heard about the support offered in all classes and lunch times and the skill centre, which offered modified maths and English programs with smaller groups. They had a senior program for Certificate 1 and 2 training in Hospitality and Agriculture. In our meeting, the HOSE used the terms “individual learning, open minded, keeping up the communication”. We were impressed with the inclusive approach. We were told we needed to be in the local catchment area in order to attend the school, so we bought a house in the catchment, put in our application to the school and Charley did his transitional days.
The final week of school in December 2015 was a whirlwind. Charley finished primary school and I finished my last day of work as a Teachers Aide in a beautiful little country school on 11th December. Charley’s concert performance was on 12th December and we moved house the following day. Then, in the early hours of 14th December, we received a phone call saying that my Mum had been taken to hospital in an ambulance. The doctors discovered mum had stage 4 lung cancer which had travelled to her brain. Charley and I spent the whole Christmas holidays by Mum’s side and in her little house. John came down when he could. We had my birthday, Christmas and New Years in hospital.
This was not supposed to happen. We had planned to go to New Zealand in 2016. Mum was going to show me where she was born and grew up, as well as show me where I was born and had my first few years. It was going to be a trip of meeting up with extended family. But Mum died on 6th February at the age of 70. I was numb.
Charley ended up missing four out of his first eight days of high school. I hadn’t even bought any books. I managed to colour code and enlarge his timetable in the second week while sitting in the nursing home. The next week I covered his books in colours to match his subjects. Math was blue, English was red etc. This helped Charley to manage his own school bag and organise his books independently. I sent out emails to the HOSE, skills centre, admin to the skills centre and his Case Manager explaining Charley’s absences. I had also put a brochure together for all his teachers, plus HOSE and admin. The brochure explained Charley’s strengths and his best ways of learning. There was a hard copy for each teacher, which Charley wanted to hand out personally. Half of them came home. I asked the Teacher Aide to help Charley hand them out, but this didn’t happen. The Teacher Aide is our only means of contact, as we were asked to take Charley to the drop off point where the aide would be waiting each morning and pick him up at the same area in the afternoons. I emailed the brochures I’d created to admin, asking her to forward it on to Charley’s teachers. I had one response.
I quickly learnt that high school is a completely different place to primary school. For one, this was a large school with 2000 children. Most primary school teachers are happy for you to ask questions and volunteer in the classrooms. High schools do not seem to want parents around. Communication is done by email and the learning journal. I have learnt that the bigger the school, the more kids with special needs, which means more vocal parents advising the teachers of their own child’s needs. Some parents use a more confrontational approach than I do, and this can put teachers and aides on guard.
With this disappointing start to high school at an already difficult time for our family, I became discouraged. I was not interested in a lot of communication at this point. I was not in a good state of mind and I didn’t like the thought of seeing someone face to face anyway, but some of my emails were not being responded to and messages weren’t coming back in the learning journal. Verbal communication is generally done at the pick up with the aides, but some aides ask that parents email the teachers individually. And it hasn’t been possible to have parent-teacher meetings with all teachers. This school offers a meeting with one teacher (the maths or english teacher from the skills centre) for 15 minutes twice a year, with whom we can discuss matters from all subjects. At Tim and Ramey’s high school, we were able to have 15 minute meetings with every teacher two times a year! Not all of Charley’s subjects have been modified to Charley’s level. I noticed worksheets from Charley’s books were not even touched as they were at a typical Grade Seven standard. Charley was not even getting assessed for two of his subjects! Expectations from the teachers appeared to be very low for Charley’s education. I find the loss of control over Charley’s education so overwhelming. I was completely fine with Tim and Ramey going to highschool with minimal communication as they could communicate themselves, but it is difficult for Charley to tell me or teachers about his day and to express his feelings.
At the end of Term One, Charley wanted to have a gathering with some friends at the bowling alley. I thought this would be a good idea to work on making some mates for Charley and for me to speak to other mums. I spoke to Admin at the skill centre as well as one of the teachers, who also thought it was a good idea. We sent out 13 invitations five days before break up. Only one girl came, but she was already one of Charley’s friends. I later discovered teachers do not support the students with handing out invitations. This must be done outside around the bag racks at lunch time by themselves! All these students have special needs, so we weren’t sure if all the invites were received, or if they were taken out of bags or if parents simply didn’t respond or turn up. It was difficult to know what actually happened.
I investigated alternative schools in order to a find a small country high school who had those kind and compassionate teachers like in Charley’s primary school. I soon discovered it is impossible to find a small high school in a populated area. I felt that the schools I did check out would not be an improvement on our current situation. I could sense nervousness from the Principals and heard comments like, “Well, it would be difficult to support your child’s needs” and “Didn’t you know there is a special school close by?”
While I was becoming more and more devastated, Charley still seemed enthusiastic about school. He would be dressed early with his bag packed, waiting for me to get him to school every morning. Sensing his keenness, homeschooling seemed out of the question. I decided to write 2016 off as any kind of decent school year for Charley and wait to see what teachers Charley has next year. My husband is also disappointed with the whole situation, as well as finding it unusual to see his wife so down. Where was his strong, work-it-out, get-the-job-done wife gone? He knew I wasn’t prepared for a battle. Grief affects everyone in different ways. We considered buying a caravan and going on that great Australian trip we’d always talked about. We often discussed taking Charley around Australia between primary and high school, but it was difficult with John’s work to get away. Next year it might be more possible, but in the meantime, John suggested that Charley and I get away somewhere.
In Term Two, I booked a holiday for Charley and I to go to New Zealand. We flew into Queenstown, hired a car and travelled 3000 kilometres over 20 days across both the North and South islands. We stayed with our extended family, and were shown where my Mum was born and grew up in the south and then where I was born and had my early years in the north. We really felt the love and we were in no hurry to come back.
Unfortunately, when we returned to school, Term Three was not much better than our experiences in Term One. After emails and meetings and losing Charley in the school with another child, I have come to believe we are in a school with educators inexperienced in teaching students with intellectual impairment. They tend to manage behaviour through detentions before exploring prevention strategies.
In February, I attended a conference – one of many I have been to over the years that have discussed education, new therapies, etc. At this particular conference, I asked the question, “How do we get through high school?”
The presenter responded, “One day at a time!”
I have decided I am not going to any more conferences. I know what has to happen! I just wish I could get Charley’s high school educators to go to these conferences, like his teachers from primary school would. I wish educators could be better supported in the school hours. Having children with Down syndrome at mainstream schools can be beneficial for all involved. Inclusion helps teach the other kids patience, empathy and leadership skills and, hopefully, when they are working adults in our community as teachers, doctors and in retail and other services, they will have the people skills learned through their younger years. I know we have come a long way in acceptance and inclusion but we still have a long way to go! It’s difficult when I have to waste my emotional energy on other people’s limited ways of thinking when I know how much Charley has to offer the world.
Now that we’re in Term Four, there have thankfully been some positive changes. We are now getting assessed for all subjects, Charley has been moved to a different Grade Seven class where there are less distractions and he has made two new friends. I am in the process of setting up a mothers support group for mums of children with special needs at this highschool through the SIPN network. I am also planning some time away down south with Charley. He learned so much travelling around New Zealand. He can navigate with Google Maps, work out times, distances and money concepts and he got up close to seals, tried new foods and wrote in a diary every day.
I am very proud of Charley. I love his determination, confidence and social skills. I know he will be independent in life with all the right supports in place.
And with our high school journey, we will just take it one day or one mental health day or one holiday at a time.
Latasha is a mum to three gorgeous boys, a spoilt golden retriever and a bossy tabby cat, and wife to a hardworking, supportive husband. She is a Teachers Aide by trade and a proud advocate for her son, Charley, who has Down syndrome.
