My friendship with Jocelyn started when a lovely mutual friend introduced us during my pregnancy with Nicholas. Although I hadn’t yet even met my third child, I was grateful to have my first real life connection with another family in the Down syndrome community and Jocelyn has been a wealth of knowledge and source of support for me ever since. These days, we mainly see each other looking a little frazzled as we do dropoffs and pickups, but I’m so glad we’re able to share the school journey together at the same primary school. Thanks for sharing stories of your beautiful auburn haired girl here again with us. ~ Annie x
We started our journey towards schooling early, as you do when you have a child with a diagnosis. My research brought me to the conclusion that I wanted our Miss E in a mainstream setting and I was willing to look at all avenues to lead us there. We went to a State Special School playgroup on and off from when she was about one and until, at three, she was put into the Kindergarten program there for one day per week. I offset that with two days at a local C&K traditional day care. The next year she went one day a week to the State Special School and a five day fortnight at our local C&K Kindergarten program. We stopped going to Special School halfway through the year as she was not getting as much out of the program now that she was at Kindy. It was also ‘the year of illness’ for us and I needed to cut out a source of bugs. We decided on a second year of kindergarten at C&K in 2014, delaying our entry to Prep until 2015.
Both of these streams were great building blocks to get us to our goal of full time mainstream Prep. I greatly valued the advice and input of the Special School staff in the time that we were there. Their time and work with Miss E in a much smaller class setting was invaluable.
The Kindergarten that Miss E went to for two years was amazing for her. I burst into tears on her last day as I handed over the thank you bottle of Moet to her teacher, an amazing teacher who had listened to all my concerns and had guided our girl through her two years to see her emerge so very very school ready. Together, we and the kindy team had managed her transition beautifully and it was thanks to this that she walked into that classroom on her first day like she owned the joint. Also during those two years I had developed enough trust to let her go. It was hard to do, to hand her over to a school five days a week, as it is for any mother, but we were ready.
The first day came and our little family all walked to school together. We arrived at the classroom and she just walked in, said “Bye Mum” and got down to business playing. That was it, over, done. She didn’t look back. I didn’t really know what to do. We left her and went for coffee. I think I was in shock – it had been so anticlimactic. After the hours of discussion on school selection, the meetings with staff, the planning… it was done, we were there, she was in full time main stream school. Goodness, what now? It is taking some adjustment for me to move on to the next stage, to work out how to manage the child at school, therapy outside, inside and around, rollercoaster. At the moment we are still just putting therapy aside as she works her way through prep. So far she’s doing herself very proud, holding her own, thriving and absolutely loving it.
Miss E’s school has full time assistance in the prep classroom. Her class assistant has previous experience working with kids with Down syndrome and was placed in Miss E’s class at her school’s choice. Thank you! We asked for a structured teacher for Miss E, and have been blessed with an amazing educator to steer us through our first year. She is just the right combination of authoritative, caring, OCD and scary for our girl. You read all the horror stories and, in comparison, we seem to have ended up in something of a fairy tale. The thing that has warmed my heart the most though is that two of Miss E’s classmates have siblings with Down syndrome. I mean seriously, is that even possible?
It has been an amazing year for our girl. It hasn’t all been easy, but I am trying to focus on this school journey being a marathon not a sprint. There are things I find really tough. I find the not knowing the worst. I can’t see in there, and my girl isn’t much of a conversationalist. So I really have very little idea of what goes on in class on a day to day basis. Controlling old me really struggles with that one. The IEP meetings are rough and not because of the attitude of the school or the staff, of which I have only good things to say, but because they are so confronting. First one I didn’t sleep before, did mountains of prep for, made my husband come and definitely shouted at him beforehand. Second one was much better; steady, steady.
Now let’s talk highlights – so many highlights. One of the biggest was our little girl getting her award at a full-school assembly for being the first child in her class to recognise all 473 sight words in the school list. How awesome is she! I had requested that they make a bit of a fuss but I hadn’t expected a special award on parade. My husband and I went with her Nanna and two younger siblings. I cried as the school community gave her a rousing round of applause as she strutted up so proudly for her certificate, smashing stereotypes with every stride. My heart burst as she was so proud, we were so proud, they were so proud. It was a really great moment.
The most important memory of her prep year to me was from a different assembly. As assembly ended I watched her class stand and head up the steps towards their classroom. I watched her beautiful auburn hair, bobbing up and down as she awkwardly mounted the steps carrying her wedge cushion in one hand. I could see her working so much harder than the other kids; I could see her labouring to balance, taking the steps one by one, rocking side to side, and hurrying to keep up as the others just skipped up them without a thought. In that moment I was completely floored as I was reminded that no matter how much therapy practise, vitamin supplements and home work we do or don’t do, it will probably always be harder.
Those of us who walk this walk, we all work so hard to look past the differences and to celebrate what’s the same. After living this life for six years, she is just Miss E to us; I just don’t see the diagnosis anymore. In that moment there was such an enormous flood of love and respect for my daughter working her way up those stairs and holding her own. I was so glad that it was the auburn haired little girl who belonged to me for she just works harder, at everything, every day, all the time and that shouldn’t be overlooked; it should be recognised, celebrated and awarded.
So I thank you Mrs Love for prompting me to stop and take stock. It has been a big year around here and we still have a term to go. As we begin term 4, I will work harder to remember to cut her some slack, to not read that reader or not practice that talk, to leave the therapy homework undone. To instead focus more on appreciating how hard she’s already worked today and every day, to endeavour to celebrate the efforts not just the successes, and to always choose love above all else.
Jocelyn is married to Mark and together they have three fabulous little people, all living happily together in Brisbane, Australia. She is a full time stay at home mum with an Engineering degree in a box under her bed. She loves to read, to bake, to plan, to write lists, to learn and to sleep.
Jocelyn’s first guest post on Mummalove appeared in October 2014: Choosing Family: a mother’s reflection on having more children after her first baby was born with Down syndrome