27 May 2018

Being faced with late termination choices


This is a post that has been sitting in my drafts for a long while, with only the title written. I've known for a long time that I've wanted to write it, but I've been avoiding it all the while the thoughts and words still swimming round my head.

I'm not even sure how it's going to go, but I feel I need to write it. Maybe I've been urged to by all the things circulating about repealing the 8th amendment and the referendum that has just happened in Ireland (which I 100% am a YES to) so I felt like maybe now was the time. I want to be as honest as possible and state that this is just MY experience, MY feelings at the time and now is in NO-WAY a judgement on what other people have done or may do in the future. It's solely about my life and the choices we made. I would never ever judge any other person from doing differently from myself, because everyone is different, everyone's reasons are different and there will never be a need to justify. It's also a warning that this is a difficult subject to talk about and I'm fully aware that this could be triggering and upsetting for people to read. So please bear that in mind.

17 May 2018

Rohan at two (and a bit!) PART ONE


I can't believe this has taken me so long to write. I don't know why and it's become one of those things that the longer I leave, the harder it is to start. Poor Rohan, I'm pretty sure there were monthly updates about Theo, but Rohan's last one was when he was 18 months. He's now 25 or is it 26 months? Or just over two for most people.

But really he's still about a year old. We had a paediatrician appointment recently where we went to discuss his general progress and talk about all the different areas in his development. I still find it really difficult to tell people his age as when I say two there's still that vast gap in what people think a two year old looks like and should be doing, and what Rohan is doing. So really sometimes I do wonder if it would be easier to say he was about a year old, as that's where he is thereabouts developmentally.

He's been mobile for quite a while now, from perhaps the end of the Summer/ September time. What started as a sort of commando crawl soon progressed into pulling himself along with his hands in sitting position, to then learning to move by just using his legs. It's not exactly ideal and crawling would have perhaps been better but I'm so happy that he figured out a way to be mobile all on his own. As usual with Rohan, nothing is quite conventional! But since he's become a bum shuffler he's managed to be pretty speedy when he wants to, and seems content at his mode of travel. Since he's become more confident in moving he's now progressed to kneeling and getting himself into a high kneeling position too. From here he is desperately trying to pull himself up to standing when holding onto something like the sofa, coffee table or us! With the smallest amount of support he will do it, but his little legs tend to not be able to get into the right position to push himself up. I'm confident he'll get there soon though, in fact the other day whilst he was standing up against the sofa he managed to do a few sides steps and cruise his way along the sofa to reach his bottle. Since writing this a few weeks ago, he has now in fact learnt how to pull himself up to a stand! I was so surprised that just out of nowhere he showed us that he can move his feet and plant them again to get to where he wants. I only hope that he continues to progress as well as he has been, as I can't wait for him to be able to walk.


I do feel like we're still stuck in that limbo at the moment, where he can't really do that much when we're outside of the house. I guess that has a lot to do with the weather as it's pretty hard to put him down when the ground is so wet and muddy, but I'm hoping now that Spring and Summer has arrived and things are a bit drier he'll be able to explore outside a little more. I want him to be able to join in with outings with us a little more and be able to reach and interact with things like everyone else. Being stuck on the ground on your bum isn't really ideal! But I'm just happy really that he has progressed, and progressed pretty far actually. Sometimes just in the space of a few weeks he just seems to be so much more confident and happy on his feet and standing. He's now added pulling himself to a stand into his normal range of movements, and something we don't have to help him with, and every day actually he's getting more confident and pulling himself up onto more and more things. There's a little leg that is also keen to get climbing, but can't quite get far enough. We've also been working on climbing the stairs, which he's so close to mastering! I just love being able to see these little steps of progress, and each time we try it really seems as though he's getting better all the time.


We recently had a speech and language therapist come to assess Rohan when he was eating and drinking, and whilst all went well we're still on very basic levels. Most of his meals are puree, and whilst he is really good at feeding himself, and even eating finger food, the gagging and being sick is still an issue. I think for such a long time we were so concerned about his weight that we were really careful about what we gave him to eat as we didn't want anything to come back up. I realise now that we totally lost confidence in his weaning because of this and have stayed at the puree stage for way too long. We also got a bit reliant on just feeding him from a pouch, as he could hold and suck it himself, but really we needed to get him used to being fed or him feeding himself from a spoon and also chewing food.

I feel, hopefully that now we've realised this, and that his weight isn't such an issue anymore thankfully, that we can start building up all of our confidences and try and expand his range of food. He's pretty good with cooked and soft vegetables that he can hold and bite small amounts of, as well as soft fruits and he seems so much more interested in what we're eating too. He's also getting pretty good at communicating what he wants and doesn't want. We've been doing makaton for a while with him, and whilst he doesn't exactly do the signs all the time, he's definitely getting the understanding. So far we only do a few basic ones with him, such as water, food, more, finished and milk. He can do water, more and finished with a little prompting. We also do a few more around home life, such as bedtime, bath, car, home, play, toys, mummy, daddy, brother and cat (which is his favourite!) He's really trying to copy a few, but most of the time just ends up clapping when he attempts a sign, but for me that's showing that he's taking it in and knows he needs to do something with his hands and slowly they'll all start to become their own sign.

He definitely has his own way of telling you he wants something, recently he's taken to bringing you objects, such as his cup for water, or taking you to the cupboard where we keep his cereal and pouches when he's hungry. He laughs when you say the thing he wants, and discards or wont even look at the objects you are offering him if it's not what he wants. He's got some very specific noises for different things and can really tell me if he wants something. He does that thing though where he will be completely fine and happy with other people, then when he sees me he starts to whinge and ask for things. I guess it's because he knows that I'm the one who understands him the most and can give him what he wants. It's nice in a way but I'd much rather the whinging didn't happen!!


Every week we have a portage worker come for a session at home, where we are really focussing on decision making, attention and shared games. So far he's still very stubborn on what he wants to play with and his attention doesn't last too long on things he hasn't decided to play with, but like with most things he's still come for far. He's really good at taking turns and sharing items such as books with us, he likes to roll a ball or drum between us and is really great at asking for help. He loves shape sorters and toys that have a really good action and reward and especially anything that lights up or makes noise. A drum is still his favourite thing, as well as people's hands. We've been working so hard on giving him confidence for doing things on his own or with his own hands, as he gets really obsessed with making other people's hands drum or bang on things. We're still a little unsure as to why he does this, but it's getting a little better. One thing we did realise is that he really likes looking in the mirror or any reflective surface to watch himself do things. It's like he almost doesn't realise that his hands can do things until he can watch himself do it in his reflection, which sort of explains why he likes to use other people's hands to do things. He also likes to get children's hands to do things, which he doesn't quite understand that he can't go up to children and just grab their hands! It's all meant with the best intentions and a lot of the time is meant as a hello or let's play together, but more often than not is done a little too forcefully and the other children don't really get it! Poor things!


But one thing he is, is really social. He loves other people and other children, and when he spots someone around his own size he will make a beeline for them and wants to interact so much. He always gives people the biggest smiles, and it is definitely the first thing that people comment on. He's definitely not a shy child and there's always quite a lot of attention on him which he loves. I love watching his relationships with people and he can be really affectionate. He leans his head to side and loves to snuggle into your shoulder, we get great big open mouth kisses too and he loves being held and cuddled. We still have to rock him to sleep or near sleep a lot of the time, and for now I love this time where his body fits in so perfectly and he snuggles in. It's not often that he's still anymore, so any chances that I get like this I take! He will put his little arms up to ask to be picked up and really likes just sitting on my hip and watching everything. He started nursery back in September and really loves going there. I've seen his relationship with his key-worker really blossom too, and it's lovely to know that he has a bond with other people outside of the family. He has also just started at a childminder once a week, which gives me a good chunk of time to myself. I think it will be a really good thing for him, to be in a home environment with a group of children of ranging ages. The other children are all 'typical' for want of a better word, where as his nursery they all have additional needs of some degree. I think the mix of two will be so good for him and he's already thriving in both places. It's not been an easy journey to get him into both, but I'll save that for another time!

I think I'll leave it here for his little development and social update, and come back (sooner rather than later I hope!) for a second update on all things medical.


 Thanks for reading!



09 April 2018

Mother's Day


So yes, Mother's day was indeed a month ago. But seeing as I've not even opened up this blog it's pretty good progress that it's only a month late. (I'm just ignoring the half written post on Rohan's two year update)

But anyway, that out the way I thought it might be nice to share a few photos from Mother's Day. We didn't plan to do anything or see any of our own Mother's this day, we didn't feel like paying extra than normal to eat a pub roast (and eating out is just a bit stressful at the moment!) and with the exception of spending the day in bed (or in a hotel or spa!) on my own and not seeing my children, I didn't really mind what we did. Which actually turned out to be a great plan, because sometimes when it's a "special occasion" there's this big pressure to do something big, planned and sentimental. There's so much you "should" be buying to celebrate your mother, when actually it doesn't really matter does it? It's also so important to realise that this day can be so so difficult for others for a variety of reasons, that actually sometimes it feels a bit much to shout about how wonderful your mothers day has been and all the unneeded extravagance. I'm happy with a cup of tea in bed, a homemade card and perhaps a bunch of flowers (all of which I did get and was very happy about!)

At the last minute we decided to go somewhere we've not been for a long time, and realised that it's not too far from where we now live. So we headed to Wells for the afternoon. It was forecast to rain later in the day so we didn't really fancy hanging around too long, but after a potter in some shops, a look around the grounds of the cathedral, Theo and I had a mini cafe date whilst Rob walked a tired babe around to sleep. We then walked some more, sat and watched Theo roll down some banks of grass by the Cathedral entrance and then stumbled upon the most idyllic row of cottages you ever did see. And here of course we took it as a photo opportunity and managed to get a few nice portraits of me with my children, and that makes me very happy. Hope you enjoy them!


 (A few of the interesting angled ones were taken by Theo!)

12 March 2018

Snow day!


I thought I had better get round to sharing a few pictures from when the beast from the east hit before Spring weaves it's way in and everything is looking green and fresh and the snow is long gone. 

It was romantic to see the snow falling non-stop, filling our world with white in an area that hardly gets transformed like this. There were whoops of joy from the street outside when the children got turned away at the school gates on Thursday morning. When the snow eased a little we ventured out to the village shops (a post office with essentials and a pharmacy) to stock up a little as you know, we're British and like to panic. But thankfully we did as the next day it was all gone! Rob was working from home anyway like normal, so we had nowhere to go and nothing to do other than enjoy the snow. But in actual fact, other than a few little runs around the garden, the wind was too strong and the temperature way too cold to enjoy it for long so we snuggled inside. Whilst Rohan napped Theo and I did some science experiments and then we all watched a movie together before our local pub was calling to us for open fires, homemade chips and a pint of guiness! We felt like true artic explorers, bravely battling the drifts and blizzard to get there.

Friday was the true snow day, and we dragged Rob away from his work for a little while to go sledging. There was no need to worry about where to go, we just had to follow the steady stream of people trekking up the hill pulling all sorts of sleds and homemade contraptions. We greeted classmates and people from the village before making our way up the top of the slope. This really is the best place we've ever been able to go sledging (to be fair it's not snowed this much in five years!) and it's only 10 minutes walk from our house. But it was amazing to see so many people out enjoying themselves, ourselves included!

Later Theo and I attempted to make a snowman, but after a lot of sweating away and time spent we only managed a meagre snowman. It was completely the wrong type of snow (who knew there was the wrong and right sort of snow to make a snowman!?) and way too powdery to stick together. But we persevered and made the skinniest, most sorrowful snowman you ever did see. Rohan had his first proper experience of snow too, we sat him down in his all in one and he was thoroughly enjoying watching everything going on until Theo put snow down his neck which he didn't really love! But then cue some falling into the snow from Theo and all was ok again, that is until a rogue snowball aimed at Theo hit him on the side of the head and it was game over. Not the best introduction to snow right?!

On Saturday with the snow already starting to melt we made one last trek up the hill for some sledging again, and then back home to make a much better snowman. It literally took about ten minutes after rolling three giant balls up around the garden to have a 6ft snowman whose head didn't cave in as soon as you touched it. 

By Sunday we were all ready to get out the village after being stuck for three days, and the roads seemed a lot clearer, so we got up early and headed into to Bristol and enjoyed the sudden jump up in temperature and the ability to go outside without 36 layers on. So that was that, our snow holiday for 2018!


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