A step in the right direction

So we’ve been quiet for a little while. Mostly because we’ve been busy in a positive way. We’ve had a holiday and we’re planning our wedding so generally we’re doing something or other.

With May being PWS awareness month it seemed fitting to do an update post.

So what has happened since I last wrote a post…. *goes and checks last post*

We now have consistent signs and a good amount of speech. We say please for things we want and we say thank you (a lot) we even have a game that we’ve named thank you. He has some spiderman cards that he likes to put on you one by one and say thank you every time he puts it on you. We’ve mastered the word no. This has a wonderful waggy finger with it to ensure you fully understand the no, it’s highly entertaining.

Seizures are still fully under control (thank god) so that’s becoming less and less of a worry.

In nursery he is slowly moving up to the toddler room. He’s enjoying it so much that he will stand at the door of his current room pointing to get out of the room and into his new room

We have 100% found our willy. He doesnt like wearing clothes and at any given opportunity will strip off and do his best to get out of his nappy and have a play. We aren’t quite at the potty training stage just yet but we are getting there as he will tell me yes or no when I ask if he’s done a poo or not. We’re in no rush to do it, as with everything else we’re waiting for it to happen in Olivers time. I’m yet to work out if the outbursts over certain items of clothing is an issue or not. He could just be working out what boundaries he can push or it could be some kind of other issue…we will see!

We had our final review with portage and compared to how well he has progressed since we started. According to the tick boxes he’s only about 6 months behind cognitively and a little more physically but we knew that. He was a tiny potato that didn’t really move when we first met Roz. He couldn’t sit independently but now (this leads me on perfectly to my video) he is able to do this

Now please don’t see everyone’s lack of reaction as a lack of caring. There was a lot of this little step (physically small but its a huge achievement) on holiday and we discovered that if we pay attention to him he won’t do it but if you ignore him and video him in a stealthy way he will try it.

Now we just need to build up his confidence

Go orange day is Friday 31st so if anyone would like to wear orange and tag us in photos we’d absolutely love that!

The ‘my child’s a genius’ moment

Now I’m sure you can guess by the title that I’ve hit into a stage where he’s started doing new things very rapidly.

I don’t know whether I had low expectations for what Oliver would do and when or I just abandoned expectations and took things as they’ve come and all of a sudden so many things are happening that I’ve had a wide eyed moment and thought ‘shit my child’s a genius’

Don’t get me wrong I don’t think he’s going to ever astonish people with his IQ and I can clearly see that he’s doing things that all other children are doing….but he’s my child and I made him (with a bit of help from Mike) and he’s doing so many new things that he’s constantly amazes me. No one tells you when you have a child much other than ‘it’s the most amazing thing’, ‘you’ve never know a love like it’ and ‘it’s hard’. I’m sure every mum has that moment where they look and go ‘bloody hell look at what you can do! I’ve only shown you that once and now you’ve mastered it’

Photos now take a couple of takes …

Olivers brain seems to have had more ‘sponge power’ since he’s started growth hormone. He’s grown, he’s put weight on, he’s much more vocal and now he’s ‘doing things’. He’s not walking, he’s only just (by the skin of his teeth) commando crawling. He is, however, the fastest roller in nursery and is now solving little puzzles like his lock a block and his ball tube without any problem. My new favourite is blowing a kiss, he can’t blow a kiss and what he does is comparable to a nazi salute or someone acting out taking their hat off to greet you good day BUT I know exactly what it means and now you do too! This is my favourite part of having a child, being able to look at him and know exactly what he’s after, when he’s not right. It is by far the most amazing skill (other than patience) that he’s taught me. I didn’t think it’d be him teaching me.

He is the happiest little soul and I’ve now been informed that all visitors to the nursery have to give him a high five when they come in the room, he also loves to dance with Karen and the girls. Portage was even impressed when we started with a language bag and he managed to get all animals bar the sheep correct on the first go. He has amazing concentration and has a keen eye for where you’re hiding things and picks things up so quickly that mummy and daddy need to start watching what they say just in case!

There isn’t really much purpose to this post other than to boast about how well we’re doing, I don’t think it’s the ‘norm’ to be as excited by ‘where’s your head?’ Or ‘can you point at the piggy for me please’ as we are but our norm is different to everyone else’s

For the parents of all children out there, especially the ones who develop a little more in their own time rather than the doctors and health visitors schedule, enjoy every moment as I’m already starting to realise that time is going far far too fast and I wish I could slow it down!

Often referred to as the ‘beginning of the end’ this is Olivers first forward movement. We’ve waited a lot longer than other people to get to this point….I may regret it at a later date but I say bring on the end!