for the radio silence but it’s been a pretty busy week. Freddie has met his new therapist team (we boarder two NHS trusts and they’ve decided we need to be moved from the trust we were under to the other trust, actually, it’s our GP surgery that has opted to move – but that’s an entirely different blog post) plus seen his nurse.
Master Cheese had a combined appointment meeting his new Physio and OT. It was nice and simple because they came to the house. We were a little nervous about meeting his new physio because we loved his previous one so much and were quite attached to her, however, his new one I warmed to very quickly. She was softly spoken, friendly and gentle. She subtly approached Freddie to assess him instead of just getting straight into things – not that he would mind. As for the OT, I didn’t have quite as good first impression. She arrived later and wanted to see his equipment so I took her to see his Triton chair, she asked me how/when he uses it, mainly, do we use it for meal times. I said no. I explained his previous OT thought keeping him in his highchair for meal times was better and he would learn it’s for eating, whereas the chair is for various purposes and that could be confusing to a child with communication delay. She replied, very sternly, telling me the chairs cost £2,500 and when she gives them to her children she would say they need to be used for meal times every day because that’s a lot of money to pay out for equipment. I considered myself told and out loud I replied ‘okay’ (in my head I said ‘he will still eat in his highchair though’). The OT softened a little as the appointment went on, and she was in the company of the physio. I still found her a bit unnecessarily short, maybe I was a bit sensitive from our ‘chair’ encounter as James thought she was okay.
His physio was incredibly positive (as they are) confirming that he has a lot of strength he just can’t control it. James asked if we could getting him crawling (I must admit, I hate it when he wants answers about the future because I just live for now, I guess I also think he’ll never crawl and I’ve made my peace with that, plus his previous physio never thought he’d crawl) she said she wasn’t sure Freddie would, but admitted she was just going by this meeting and she didn’t really know him yet. She did, however, say that he stands really beautifully and maybe we could work on that and get aids (shoes/supports) to help him stand independently at some point. He loves standing, genuinely loves it, and he’s so tall when he stands up straight! She confirmed that his legs are very strong but his pelvis is unreliable. We will be working on lots of kneeling with him as well as sitting at his bench playing. She’s coming back to the house in a month.
As we all walked through the kitchen, the OT stopped at Freddie’s highchair to look at it. I think she referenced him eating in his Triton chair again so I explained he liked his highchair. Things such as he likes being able to twist around to check who’s coming down the stairs/in the front door and he has space to learn forward and take food off of the kitchen counter – which he loves doing! Both James and I said we thought it was all good for his core development, which is why we’d let him do it. Thankfully they both agreed that it seemed fair to let him continue eating as he had been.
It’s a tricky business dealing with professionals when it comes to Freddie, especially ones that haven’t been on our journey with us. I think I was more accepting last summer when I was clueless and didn’t even feel like I knew Freddie, let alone what was best for him. I just wanted someone to tell me how to make things better. I’m now in the position where I spend pretty much all my time with him, I know what makes him happy, his limitations… I know him better than anybody so I find it hard when somebody – who has never met either of us – starts saying how things need to be done, but I respect people who take a minute to get to know him and ask about him. Relevant things. I also respect professionals who respect the fact I’m his mother and carer, therefore I do know him better. Don’t get me wrong, nobody says that they know him better it’s just some people make it clear I do and that they’re happy to take their lead from me, others just talk at me!
I appear to have waffled on for a very long time so will save his Speech and Language for tomorrow.
