April 15th. The journey continues…
Yesterday was colourful! As I mentioned in an earlier blog, James has been experiencing some issues with his current medication so we are in the process of weaning him off all medication. We are doing this in order to observe him and therefore be better informed about the most appropriate step to then make. We are now half way through this withdrawal process. Overall, I would say that when he’s calm he’s great – better than he’s been for ages – but he is certainly having bigger and more violent meltdowns.
Yesterday morning started off OK. I sorted out the boys cupboards whilst they played outside on the street with some neighbourhood kids. The kids in our street are lovely kids and by and large, they are very understanding of James in particular. Whilst they’re in our home, you can oversee what’s going on and intervene where necessary. However, when they’re out on the street on scooters and stopping at different driveways to play games, it’s less easy to intervene when needed. Yesterday, this resulted in James having a huge meltdown.
When he’s stressed or overloaded, he gets increasingly controlling of play. He wants to be the ‘boss’, organising everyone else. A poor understanding of turn taking and reciprocity in conversation and play, are common issue for kids on the spectrum. Sometimes the neighbourhood kids will jolly along with this but understandably, sometimes the kids get tired of it! On these occasions, James struggles to accept this and says the kids are being ‘mean’ (which they are not) and that they need to ‘say sorry’ (which they don’t!). Yesterday he was absolutely hysterical out the front of our house, screaming at the other children and crying. I went out and got him but he was totally out of control. He is getting so big now that he’s really hard to manage him on my own. It took a lot of effort to get him back inside the house. Fortunately, my Mum was here so she was able to provide support.
Mum and Dad have witnessed meltdowns before but it’s always shocking I guess for them to experience it in person. It took ages to calm James down. Mum called Dad and he quickly turned up to help as well. Seriously … how lucky are we to have this support? Dad and I then had a quick strategy session about what was going on with the medication withdrawal and did I need any further direction or help.
If you’ve ever lost anyone or experienced a traumatic event, you’ll remember that terrible feeling you experience when you go back to work or out into the world for the first time, and you realise that life has just continued to happen. You realise that the world has simply continued to turn but you can’t imagine how because you feel like the whole world has been turned upside down. Do you know the feeling I mean? Since having James I have experienced that feeling often and it’s quite isolating. Like yesterday, his meltdown was traumatic for everyone … but then I needed to go to the bakery and I had that kind of weird feeling of being traumatised and wondering if anyone could sense it? I’m not sure if I’ve articulated this clearly enough for you to understand but it’s a feeling I experience a lot.
Later in the day, Chris took the boys down to the park for a quiet play on their own. I stayed at home in order to collect my thoughts a bit. Whilst taking a breather, a beautiful friend and colleague of mine Vanessa turned up with baked goodies for Chris and me. After the day I’d had, I cried and gave her the biggest hug ever. I’m sure that to many people these kinds of gestures seem so small and insignificant … but in truth these kinds of gestures are huge and make a big difference. It made me think that I am truly so very blessed. There are so many beautiful, understanding and caring people in our life. I’m learning that whilst I don’t enjoy feeling vulnerable (not one little bit!!!), sometimes it’s OK to admit the going is tough; to accept help and to share some hugs and accept the kindness of friends. So what started out as a really rough day, ended up being a very special day. Thanks to all the beautiful people in our lives for your understanding and support. It means the world xxxx