I’m sat here in the office at Austin & Rory’s pre-school, with a teddy almost as big as me and a shell of Santa hanging behind me with little donkey playing along from the classroom next door. The children are playing with tinsel and fake snow and there’s a santa cam in the corner….which is more than can be said for our house. Aside from the felt Christmas tree in the playroom and the stash of advent calendars in the kitchen, you wouldn’t know that it was Christmas at all. Today I was planning to clean the house and put the decs up and get in the festive spirit for the big man, that was until we had no nurse cover for Rory to go to nursery and as this has happened SO many times, and I have explored EVERY other avenue to get my boy the education he is entitled to, we have resorted to this! Me hiding and secret suctioning to keep my boy safe whilst he plays with his friends. You wouldn’t believe it unless you were indeed watching us! Maybe on the santa cam 🤔
I’ve found it difficult from the start, putting Austin in a uniform and not Rory, and wait until the last minute to dress them in the mornings as to not put Rory in uniform if he isn’t going to school, because to Rory, that uniform is the key. The cue to telling him his plan for the day, it does have an impact on him. This morning when I put him in uniform he was so excited, running around, happy and vocal. You can usually tell if his emotions are heightened by the amount of sound he forces up his airway. I felt relieved that he was going back to nursery as he has missed so much. Only to find out about an hour later that we had no nurse cover. Then I was faced with a dilemma. Rory was in uniform, excited about going to nursery, and we didn’t have a nurse to go with him. So I got in touch with the nursery manager and out of sheer desperation (luckily she is on the same page with regards to getting Rory in nursery as often as possible) we hatched a plan! And this is how it looked in practice….
I did the FIRST EVER nursery run on my own with both boys walking. Might not seem like a big deal but pulling up on a busy road, getting one out safely and putting their coat on, keeping them safe whilst you get the second out and put their coat on, then carrying the medical rucksack and two school bags as well as holding hands with two energetic toddlers and walking through two outdoor play spaces full of enticing play equipment and then getting them both through the door, coats off, bags up and packed lunch out is a battle i’ve never had the confidence to tackle before – despite being someone who believes they can achieve anything they put their mind to!
I arrived at nursery early, parking up right by the gate so we had less walking to do. I got the boys their coats on in the car and sat them back in their seats before trying to grab them both safely. The calculated planning and step by step pace, whilst feeling anxious as hell. It felt a little bit like jumping out of a plane, once I got these boys out of the car, there was no going back and it was a bit of a ‘freefall’ as I didn’t really know how it was going to go! It was all going well until Austin spotted his sunglasses in the central storage compartment in the car and decided he wanted to wear them and WOULD NOT put them back or leave the car without them, and so we did our first ever nursery run as a group of 3, with sunglasses on. What a wow my little man is!
As I sat down in nursery, I soon became a spare part as they so quickly fell into nursery routine and ate their snack at the table with their friends. I sat there with the medical rucksack watching proudly, my boys so settled and happy, just like all the other children in their class. Who would have seen that 2 years ago – certainly not me!
Once lunch time was over the boys soon settled in playing with their friends and i snook into the office. I found myself helping wrap Christmas gifts and label up bags with the placement student, before blogging – quite enjoyed myself and it certainly took my mind off watching the boys through the office window and checking they were ok. I got called out to suction Rory a few times, sneaking out with the bag, giving him a suction and then hiding behind cabinets and tables before making a dash back into the office when Austin wasn’t looking.
On two occasions he found me, the first time it was too late to hide and so i went out and played with them both until they were engaged with their friends and I snook off again and then the second time I managed to hide under the giant teddy just as he pushed open the office door. Honestly, you wouldn’t believe how ridiculous the whole thing was, but equally, grateful for the nursery staff, firstly for agreeing to the plan, just so that my boy could go to nursery like his brother, but secondly for upping their game on the trachy care and allowing him to be there without a nurse stuck to him, and instead just me in the cupboard! There are no mountains I wouldn’t climb, buttons I wouldn’t push, challenges I wouldn’t take to give my boys a chance!
Rory did seem a little upset at times and upon digging deeper, I think he was frustrated. He is so used to having an adult stuck to the side of him, be it me, daddy or his nurse and today, he was the most independent he has ever been. Most of the risks weren’t there and so it was easier to watch him from afar and the nursery staff listened in to his tube every now and then and just let me know when he was ruttly, meaning that he didn’t have someone glued to him, pre-empting his needs and so when he did need or want something, snack, drink, reassurance, interaction, playing….whatever…he was frustrated and got upset, then when he saw me he thought it was hometime, grabbed my hand and led me to the door. After settling him a number of times, I decided to take them home, as there was only 15 minutes left of the session, it wouldn’t make a difference, we had done so well. Although no sooner had I got their coats on, my coat on and loaded myself up with 3 rucksacks, the boys decided they were enjoying the interactive whiteboard too much and wanted to stay. SO I stood for 5 minutes before finally managing to get them out of the door, secretly anxious about the walk back to the car, and getting them in the car safely at such a busy time by the main road. But we made it!
I got in the car and couldn’t help but feel so overwhelmed that I had managed to pull it off. My boys had enjoyed their afternoon at nursery, I had actually really enjoyed watching them in nursery, a bit of a bonus for parents as they don’t often see it. I watched by boys playing with their friends, I mean, my boys have friends, they are accepted, popular….they sat so well at snack time, they played with lots of different toys, enjoyed painting, crafting, playing outside. They followed instruction, they did as they were asked, I didn’t hear their names, they didn’t go on time out, it was lovely to watch them…..I am just in awe of them after today! They have come such a long long way from their beginning and sometimes, in the daily struggle of our life, we forget that!
With my new found confidence, I decided to call in and visit my grandma. She doesn’t get to see the boys very often, and when she does, we usually call in and manage about 5 minutes before leaving again because her bungalow is not Austin and Rory friendly and well – it is just chaos. We walked in from the car, perfectly, holding my hands all the way. I asked them to sit nicely on the sofa and they clambered up and sat, except Austin knocked the table by accident which had the christmas tree on and over it went. Grandma was practically pee’ing herself with laughing, I am of course mortified, trying to put it all back together whilst making sure I am damage controlling any further chaos as Austin and Rory are bored of sitting and begin running around. I grabbed a bag of quavers and a handful of jelly babies and sat them back down. We managed about 5 minutes and said our goodbyes. She will have so appreciated seeing her little men and so it was worth the chaos. Off we went home. Feeling accomplished!
Now it is no secret that my boys have struggled with eating, ever since they moved from puree to finger foods, They are awesome with snacks, but won’t entertain a meal, unless it is a mcdonalds or a f&B but even that is not guarenteed. I’ve beaten myself up wondering if I failed at weaning them, but they would eat anything i gave them up until finger foods and they went right of it. I wondered if it was a sensory, texture thing, because we didn’t do much messy play – purely because we couldn’t and so much of our early days were dictated by hospital visits and medical needs, or because I am a complete clean freak whether i have inadvertently made them scared of eating and making a mess. Anyway….after trying all sorts and been at my wits end, the boys eat well in quantity and are a great chunky but healthy size, but just don’t eat well in quality……I came up with a new plan a few weeks ago. They like crunchy and crispy food, and perhaps the reason they like Mcds or f&B chips and nuggets are because they are fried. Now, I don’t fry food, I hate cooking smells, I have real issues with it, so I bought an actifry, with the aim of being able to cook nuggets, fishfingers, chips etc at home with no smells. If I could get them to eat these foods at home, then eventually we can get into a routine and become more adventurous in time. So today, after my already challenging day, the wins had given me energy, as opposed to finally making it home and being so ‘done in’ that I have no motivation! The boys usually arrive home from nursery absolutely starving and end up eating another cold packed lunch / snack box as there isn’t time to make anything warm. Today they had a snack (albeit crisps and sweets) at grandmas so weren’t as absolutely starving, and that gave me time to make them some tea. I also gave them their tea in the playroom as opposed to at the kitchen table because they were settled watching Ben & Holly and I had so much to do. I wouldn’t normally do this because of the mess, I would have strapped them in at the table where the floor is wooden and so maybe this played a part too, the environment was less formal, there was less pressure to eat as they weren’t just sat at the table with their food, they say at their ikea table in the playroom with Ben and Holly taking their attention, and they could come and go. Austin sat down and tucked in straight away – I couldn’t believe it. He sat for 22 minutes nibbling away at his curly fries and nuggets. I was sat on the floor beside him, trying to be calm and not make a big deal or put him off but inside I wanted to scream and shout in excitement. Rory took a cucumber stick and posted it down the radiator grill. Can’t win them all!
I went in the kitchen to make tea for me and Ash and when I returned, Rory was sat nibbling, so then I wondered if in the past, they just got bored of sat in the kitchen and so I took it away too quickly, whereas actually, giving them plenty of time to eat it, they have both had a good feed. I couldn’t believe it. And then, 5 days after introducing Makaton (officially) Austin asked me for more…..and I managed to get it on video.
What an absolutely extraordinary day! It hasn’t all been win win win though, here’s a snapshot of what we have been up to since our last blog on 2nd December…
We had a few adventure days just me and Rory when he couldn’t go to nursery, despite Rory being a bit poorly, we ventured to Wentworth for a lunch treat in the cafe, to check out the christmas displays for a sensory fix and a visit to the farm.
We had a really rubbish night, suctioning Rory constantly, the machine keeping both boys awake and the chaos of Rorys machine and Austins cries at being woken and so Beau was really stressed and scratched the door frantically to be let into the garden. At 1am, I let her in the garden, only for her to run off and hide, resulting in me down the garden in Ashs coat, my PJS, in the pouring rain with an iphone torch, a pack of ham and some dog treats, trying to find her, with the only possible place she could be, the bush right at the bottom corner of our garden, pitch black and i’m trying to reason with the dog. Firstly shouting key phrases ‘brush ya teeth’ ‘treat’ ‘nannies here’ ‘r dad’ ‘walkies’ to then ‘listen Beau, we love you very much, i’m really sorry that it is chaos, but i’d really like it if you came inside and we can talk about it’……before going back inside and hoping in some mind-lost kind of logic, she would return. On going back to the doo, who was sulking her way up the path – Beau! Got her in eventually at gone 1:30am!
The following day, I had a mini meltdown out of pure desperation, fighting for help again, fighting for support, feeling like I couldn’t do it all on my own, like I was failing Rory and needed help. I contacted friends and ex-colleagues for advice, advice which I normally would have sidelined, but this time I pushed myself out of my comfort zone and resulted in contacting;
- The disabled childrens team to look at ways of supporting us without the formalities which I want to avoid.
- Nursery to look at other options for supporting Rory, his communication needs and his attendance.
- Caremark to prompt another staff recruitment drive to try and fill Rory’s shifts.
- The NHS Continuing Care Nursing Team to review how Rory’s 1:1 funding is being spent and how we can make improvements.
- The ENT consultant to get a date in place for Rory’s review, and pushing for another chance to get his trachy decannulated next year.
- Speech and Language, making a referral and fighting for input after being discharged only a few months ago.
I managed to complete the referral and get an appointment with Speech & Language the very next day. I planned for a productive appointment.
I already had plans the following day to meet my old boss and good friend Laura in meadowhall for a cuppa whilst the boys were at nursery and it was just what I needed to feed the soul. Sitting in Meadowhall, with no children, having an adult, intellectual conversation just gave me a bit of myself back. Enough to empower me to fight for Rory in our meeting with SALT only a few hours later. I raced back after a quick cuppa to collect A&R from nursery early, dropping Austin off at home and then taking Rory to his meeting. The appointment was over an hour long, the therapist spent a lot of time listening, which is important to appreciate Rory’s background, and then together we put a plan in place, to begin makaton, with 5 signs, and then with the therapist visiting nursery and then ringing me afterwards. My priority and my suggestion or request, whichever way you look at it was to give Rory a means of communicating his needs and supporting nursery to help him with this. I believe this ball is in motion!
The following day, I met with my friend Vicky for lunch, it was the first time since the boys were born that we have lunched together, maybe even longer since we have been on our own, just the two of us and not with the men in tow. It was great to have a long awaited girly catch up with my bestie, and I collected the boys from nursery feeling refreshed and a little bit more like myself. The pre-child me!
However….I returned to nursery to a drama. Rory had poured a cup of water down himself and his nurse had done an emergency dressing change and been heavily suctioning him because of the water on his chest, resulting in the battery low on his machine. It didn’t help that it was also raining which meant Rory would continue to need lots of suction, and out machine needed pluggin in – urgently. It was our friends birthday party at a local soft play and unfortuantely A&R couldn’t go because we couldn’t get there and be there safely with a low battery on the machine. So we had to cancel which was really unfortunate!
Also unfortunate, we had a night off booked in with Nannie and Grandad, but Nannie came down with FLU, and so we had to cancel.
We met our friends Kerry, Tim and Jonah at Play Valley. It has been a while since we saw them. Novelty of being in soft play in winter verses reality of Jonah having had much more experience of play centres than us and being able to run independently whilst Kerry & Tim enjoyed a hot drink and me and Ash following A&R (especially Rory for his tube) around in the play area with barely chance for a chat. In the end, Ash did a full sesh with the boys in the play area and I caught up with Kerry and Tim. He is such a star that husband of mine.
Sunday saw Nannie Newboroughs 60th birthday meal. We had been nervous about this as it was quite a drive away at a not very child friendly eatery. We worried about the boys being sat for 2 hours in the car in travelling and being expected to sit for a good length of time at the table too. We saved the boys nap for the car journey, which was a win. We packed sticker books, colouring, play-dough, snacks, trains….and sat right at the end of the table. We played with the boys the whole time and we managed them well. They sat for almost 3 hours, plus the car journey either side and they were impeccably behaved! Not bad at all for 2 x two year olds!
Monday arrived and we had another non- nursery day for Rory. I had to collect Ash from work (luckily he was working locally) to help me do the nursery run before dropping him back at work. I took the little man to the bank and for a wander around town. We checked out the new Barnsley Markets and had a cheese and onion sandwich and a bowl of chips in Hiltons, which, Mum and Craig, if you are reading, will know just how awesome that is. #childhoodmemories #generations
On collection at the end of the nursery session, Rory had dropped to sleep, so my first time doing pick up on my own, I have a Rory who is fast asleep – GREAT! I made the decision to leave all the medical equipment in the car (don’t judge) I suctioned him and thought that should I desperately need it I can run back to the car within a minute. It made it much easier as I carried a fast asleep Rory all the way there, and attempted to hold Austin’s hand as well as the way back. My muscle was shaking from the weight of Rory, two people asked if I needed help so you can imagine what chaos it looked like.
Pam came to cut the boys hair – I don’t know where she gets her heart from that lass, towing her bag out with my two who HATE having their hair cut and 3 adults pinning them down just managing a cut that resembles a fight with a hedge trimmer. Shes a star! We also tried to cut finger and toe nails that night – both resulting in me asking the nursery manager not to be making any calls and putting me on any badparent lists because my children have got half a hair cut and half their finger nails trimmed. If you know – you know!
We had another nurse-less day, we went for lunch in ASDA cafe with Auntie Charlotte, who also helped with nursery drop-off as Daddy was working in Stoke. Rory was extremely excited about travelling the escalator in ASDA for the first time but threw a bit of a curveball when mummy wanted to go and instead army crawled the full length of the shop in protest! Mummy obviously took a cheeky pic before trying to reason with me! We managed to feed the ducks from the car park and collect Austin from nursery, although that wasn’t without drama because Austin had a biscuit that he had decorated and Rory tried to steal, resulting in wet icing all over his hand which stressed him out, resulting in him trying to wipe his hand all over the concrete playground to try and get it off, whilst Austin was letting everyone know how unhappy he was that his brother had touched his biscuit. I managed to get them back to the car and strapped in, when I looked across and Rory had managed to steal the biscuit and take a bite. Meltdown!
We had a visit from one of the co-ordinators from Caremark as well, with a prospective new nurse. Hopefully one day we will cover the shifts!
As Daddy was going to be super late from work, Mummy hatched a plan. She had to go back out in the car to collect Beau who she had left at Nannies whilst the nurse visited and so she took us to Mcds for tea. It was a treat to be out in the dark, so with us both and Beau in tow, we grabbed a mcds, drove round looking at christmas lights and parked under the twinklies in milton car park. Sat in our own bubble, having our tea!
Bringing us right back to today, when we managed nursery, albeit not in the conventional way!
Here are some pics to make you smile, caption them as you wish…
The only elf on the shelf there is in our house!
If only I could tie Peppa to the back of a truck and drive….Great minds Austin!
Rory in a box, last few available!
One of mummys friends who reads our blogs shared a blog that mummy wrote two years ago, mummy read it back and was filled with emotion. We have come such a long way and whilst it is hard and does feel exceptionally hard at times, it will never be as hard as those early days, because we will always be much stronger and wiser. Read back at that blog with the link below, two years ago and see it for yourself…