The response I’ve had from writing this blog, has honestly been overwhelming. People really feel they’re getting to know Oscar and are investing in his progress. It’s a window to our little world and I love that people have fallen in love with him a little bit. So this week I’ve decided to give you a bit of an Oscar update. The highs and the lows…
I swear I’ve said it before, in fact I know I have… Never, not for one second, let your guard down. Always fear the worst case scenario, then when things go great, you’ll be pleasantly surprised. I’d let my guard down the day we went for a routine heart check up around March last year, only to be told that Oscar would need surgery imminently, otherwise he might not live until his 2nd birthday. The best case scenario was living until his 5th. What the eff????? Well, last week I did it again. I let my guard down and this time, it might not have been on the severity level of heart surgery but still I felt like I’d had a blow to the stomach by a rather large implement.
This time, we’d been going up to the Royal Brompton for Oscar’s routine heart check up, and if I’m honest, in my teeny tiny pea brain, I’d thought he was going to get signed off for a while and told to come back in a year. I knew something was wrong again, when the lady was taking ages looking at his ECO. That combined with her “Has he been unwell lately?”, caused me, once we were sat back in the waiting room, to say to Chris, “something’s wrong, I know something’s wrong”. “Noooooooo, Juts,” (Juts is Chris’ affectionate name for me. Most husbands would use something loving and endearing, but no, mine uses my maiden name, Jutsum, and shortens it to Juts. I’m told it’s a northern thing?!?!) Anyway, “Nooooo Juts, it’s all fine”. He tells me later, after we’re told the news, that he KNEW something was up too but he didn’t want to panic me. Right.
So yes, we go in to see Oscar’s consultant, after various ECG’s, Ecos, etc., only to be told that his lungs are under strain at the moment and although not a direct threat to the heart, if left, it could be. Oscar has had a cold recently and we were told it may be because of this, but as the lungs were under strain and weren’t the last few checkups, it could be something called Sleep Apnoea. Sleep apnoea is fairly common in children who have DS. It’s something that happens when our children are asleep. They have smaller windpipes and that, combined with the fact that they have larger tongues, means that in sleep their tongues can drop to the back of their throats, cutting off their oxygen supply. It’s very common in obese people or snorers, apparently. In children who have DS though there are other factors that add to their oxygen supply being cut off – low muscle tone in the mouth and upper airway, poor coordination of airway movements, narrowed air passages in the mid face and throat and hypertrophy (enlargement) of adenoid and tonsillar tissues. If left untreated, sleep disordered breathing has been shown to affect cognitive abilities, behaviour, growth rate and more the more serious consequences of pulmonary hypertension (abnormally high blood pressure in the arteries of the lungs).
Anyway the long and short of it is, that he needs to have a sleep study done. So they can see if his oxygen levels and carbon dioxide output along with a few other things that have gone over my head (must listen properly next time) are correct. I was called by the Brompton yesterday and told that our local hospital will be in touch soon and Oscar (and I) will spend the night in hospital. He has also been referred to an ENT specialist and we have to return to the Brompton once all this has been done, to talk about the next course of action. They’re talking about him having his tonsils and adenoids out!!!! So yeah, as I said, not heart surgery scary, but still not ideal and the thought of my little man having to go through surgery again makes me get all trembly lipped and wobbly voiced. Hey ho… A night in our local hospital with Oscar, without getting up in the night to tend to Alfie may mean I get a bit more sleep? Every cloud, hey?!? Yeah, who am I kidding.
The good news though, is that Oscar had (yet another) hearing test the other week, and although still congested (glue ear), they said he’s responding to some of the lower tones. Meaning that his hearing has improved slightly. I’m really happy with this and I’m not sure if it’s coincidence but he’s been a lot more vocal recently. Could be a result of the improved hearing? Who knows?
Something happened recently and to you guys it might sound silly and completely insignificant… But it was the first time that I really got what Oscar was trying to communicate. Sure there have been times he’s gestured towards his drink or got cross about something and I could figure out what he was trying to get across but the other day, while walking past the park, I fully understood. I was pushing both boys down the road. Oscar was his usual happy self, smiling, laughing (again at nothing in particular) as we walked along. We were walking past the park, where the children’s play equipment was and I suddenly noticed the change in his mood. He started really trying to get my attention vocally, then as we walked past, started getting upset as if he was sad I’d walked past it. He was craning his neck to still see it so I stopped the buggy. “Do you want to go to the park, Oscar?” I turned the buggy towards it and crossed the road to go in. As I did he started clapping. Amazing!!!! It really was the first time I’d completely understood him. Happy moment for me.
Another proud mummy moment was at the farm the other week. We’d gone along with two of our lovely friends and their children, both Oscar’s age but who don’t have DS. In a social situation like that, I’m always mindful that Oz might not be able to “keep up”…. But he really did. To see him with the girls, looking at all the animals, playing in the playground, walking around with them, melted my heart again. I know as he gets older, the gap may get wider, but in that moment, I couldn’t have been prouder of him.
Finally, we have now enrolled Oscar in nursery. He’s due to start in September, 2 days a week and although I know it’s the right decision and will, I’m sure, help his development, I am obviously a nervous wreck at the moment about handing over the responsibility to complete strangers. We have spent a great deal of time searching for the right setting for Oscar. We’ve visited quite a few but it was this one that, when I walked through the door, I just knew Oscar would be happy. The staff couldn’t have been more welcoming and positive. I popped in just this week to talk to the SENCO on site (Special Educational Needs Coordinator) to let her know that I’d like to arrange a meeting with her and whomever his appointed key worker was to be and that a few of Oscar’s team (portage worker, early years support, physio etc,) would ideally be attending. The meeting has been suggested, just so we’re all on the same page. I’ve always said I want Oscar to just be included. He does a lot of therapy but there at nursery, I want him to just be. Sure, he has targets, his speech, jolly phonics, developmental games etc, and we’re working towards though. But at nursery, I want him to be with children of his own age, who will accept him for who he is and in turn, thrive. I guess that’s what the meetings for… To talk all that through. Anyway when I was in the reception talking to the SENCO, one of the girls that works there, who had loved Oz last time we visited, happened to be walking past. I was telling SENCO that I wanted the right key worker for Oz. Someone who had an interest in learning about DS or that already had some kind of understanding. This lovely girl, who had recognised us from before, launched in to how she already use to look after a child with DS and that she would love to do it. As she’d been so fab with Oz, I said I’d be more than happy for her to be his key worker. It was sorted. The three of us chatted about arranging the meeting and it was all really positive. I felt relieved… Until Oscar’s new key workers final comment… Which I know was meant as a complete compliment but did make me laugh. She said: “I just can’t believe it. He’s doing so well, compared to when he was in last. He’s so gorgeous. I mean I hope you don’t mind me saying but I know there’s different levels of Down Syndrome, but he doesn’t seem… bad does he?” (looking at me for approval).
I had to laugh (internally obviously). I know it was completely UnPC of her to talk about the different levels of severity, as we all know, you either have Down Syndrome or not. There are no levels and it’s not about being high functioning or not. But obviously (internally), I was pleased she thought he was doing so well.
I looked over at the SENCO who was literally squirming. Pretty sure she was thinking, pleeeeeeeeeease ssssshhhhhh now! So, now I’m stressing slightly that this key worker hasn’t got the first clue, but thank god we have that meeting. I’m guessing she may be briefed before.
It’s been said before, but our children really do continue to amaze us every day. What might be the tiniest thing for the typical child, for our children, it’s just heart burstingly brilliant when they achieve something. I always used to hear, prior to having Oscar, other parents of children who have DS say, I wouldn’t change them for the world. I used to think, really? You wouldn’t change them? Seriously? But now I totally get it. I wouldn’t for all the tea in china… Although I don’t actually like tea but you know what I mean. And I refer back to that article that I read just a few days after having Oz. I read “Who wants to go to the grave, saying they lead a normal mundane life?”… So we might have a few extra trips to the Brompton to deal with over the next few months and my toddler might not be able to TELL me he wants to go to the park, we just have to figure it out between ourselves. What’s normal anyway? As I also read this week, normal is actually only a setting on a washing machine. I’ll stick with THIS LIFE thanks.