We find ourselves in lockdown again, but instead of getting locked down with negative thoughts of things I can’t control, I have started thinking of how far Luca has come. At the end of the first term of 2021, I had an SSG call with Luca’s teachers. (An “SSG” is a Student Support Group call/meeting at a Special school. Similar to a parent teacher interview- except Luca has his teachers and therapists that are all involved. Together we discuss how he is going at school and we make a plan together of what we can do to help going further- truly wonderful). The teachers told me how settled Luca was now at school. They told me, “it was like he grew up over the holidays”. This makes me so happy, to know he is going to school and he is settled and not screaming for attention or being grumpy. He’s being a good settled, student.

Every day when he comes home from school, I open his communication folder that comes home with him. This is how I find out how his day was. His teachers let me know what they did in class and how Luca was. Its often the first question we ask our children after school “how was your day”… so its just as exciting for me to open up that folder and find out about how much walking he did at school in the schools walker. I think I’ve mentioned it before, that the walker Luca uses (Hart walker) is not able to used at the school due to OHS concerns, so I rely on the walkers at school to get him going…. well going he is! There have been times this year, where he has almost been the only child in class- so the teachers have given him extra walking time. One day, reading his communication book, I cried tears of joy. His teachers described Luca as “being a great little helper who walked to the office to deliver some paperwork”. Oh the visual. Oh the pride that my son is helping out his teachers. The walker he is using at school still has chest support, but is pretty simple for anyone to strap him into- less “intimidating” than his Hart walker…. so we’re trying to get one of these walkers for home, so that he can definitely do more walking. Oh and the teacher said the other day, once they had finished walking and were reading a story, Luca crawled back over to his walker- ready to go for another walk. I can’t stress enough how much I love Luca’s school.

Another mode of transport Luca has been choosing is a bike. Luca’s school corridors are nice and wide to make sure there is room for wheelchairs and the bikes. Imagine cruising your school hallways on your bike and sick stack hat! I’m not sure how much he loves it, but he’s doing it. Just before this current lock down, Luca was able to get back to RDA (Riding for the Disabled). Last year, he was barely able to last 10 minutes on the horse without whinging. This year, he sat on Charlie (the horse) for a full 20 mins. No whinging except when Charlie stopped moving- Luca likes to be on the move! Its a huge improvement- and great for me to be able to enjoy watching him, with pride, as he goes around on a horse.

Luca has always been a quiet one. I’ve always focussed on trying to get him to walk. I’m ok if he is non verbal- his sister does enough talking for the both of them. Since January, Luca has started “saying” “di-di”- now of course, his dad is claiming it as Daddy… But who knows, all I know is that it is a happy sound. One that we all repeat with laughter when it pops out. Sometimes if he says “didi” when eating, I’ll wear some of his food that he spits out. Speaking of food, he’s able to feed himself finger food. He is able to feed himself with a spoon- but still not 100% great with scooping up the food himself. In the past he would yell or scream when he was ready for more food- but these days, he quietly grabs hold of my arm and squeezes- the same way your parents did to tell you to behave- without using words. He drinks from a sippy cup with handles. We still have to hold the cup for him, or otherwise he will cheekily grab it and throw it on the floor- like a cheeky toddler would.

The biggest improvement/progress for Luca and our family has been, having a carer FINALLY in our home. Every Saturday morning, for 3 hours, Luca has his carer play with him, take him for walks, read books, do art, do physio and speechy exercises with him. Now this isn’t just any ol’ carer- this was Luca’s aide from when he was at kinder. The love and respect they have for one another is intense. The moment his carer came to our door, after a 13 month absence- Luca’s face was filled with joy. The 3 hours she spends with Luca, is not only beneficial to Luca but also a gift to Luca’s dad, sister and I, who spend that 3 hours together going for a walk, bike ride, movie or cafe. Its brilliant.

Luca has never been as happy as he is now. His sister has always been able to make him laugh, but recently he’s been so eager to laugh with everyone. I stare deep into Luca’s eyes and really breathe all of him in. He is such a unique little person. He is well loved and he adores me and those around him. I have stopped mourning the boy that I may lose in the future. I have really started enjoying him for the boy he is now. Sadly, just over 3 months ago one of Luca’s little friends died. I still can’t believe he is gone. They had so many similarities. In the middle of most nights recently, Luca wakes up. He is up for an hour or more at a time. He is not crying or upset. He is screaming with laughter, cackling, giggling, chuckling and just so happy. I truly believe that his little mate is with him and they are having fun together. I never disrupt Luca or try and get him back to sleep, I just let him have his “playdate” until he puts himself back to sleep.

Sending all the love to those doing it tough. Try focus on the now or the good things that have been achieved.