New Beginnings (New Job, New Schools, New Decisions)

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New New New. I’ma start acting brand new. It’s the middle of July and I feel brand new. It’s been a good couple of weeks, amazing in fact. I know it’s been ages since I’ve written, but there’s a few things to update on.

I’ll start with Zariah. She’s amazing. Suddenly, she’s talking for England. She’s always been bubbly, but recently, she’s come out of her shell so much, and it’s nice to see her becoming more vocal. We’re officially leaving the nursery too. Since we got the news that we’d have to start looking for new childcare provisions, things just felt strained at the nursery. We had a meeting about trying to get her to start a special school early, but in the meantime, I don’t want my daughter to stay somewhere where we just no longer feel welcome. It’s just not the same anymore. That is quite sad to say as she has been there since she was 4 months old, but the vibe isn’t the same anymore. At the meeting last week, it just seemed like the nursery are keeping her there out of obligation, not because of a genuine desire to have her around. Buttttt, this is about our new chapter. So today, I officially gave the nursery notice that Zariah was leaving. She will stay at the childminder that will have her when she starts the special school, as I want her to familiarise herself with the new setting before she starts school. We haven’t got a place there yet, but we’ve officially started the consultation process, so in a few months she will have a new school! For now though, we’ll settle for a new childminder part time, and more time with mummy :).

I finally have a new job! That works around my precious girl! That sounds so basic, but having a special needs child, with a nursery that’s no longer accommodating has been difficult to say the least. I’ve had really good jobs previously, and I would have loved to stay at my most recent role, but having a child with fluctuating health needs and studying at university whilst working a job on the other side of London really took it’s toll. I left that job and have just been doing odd bob jobs so far. I’m excited to start a role in a team that literally changes childrens’ lives everyday. I’m quite excited cos it’s in a hospital that Zariah is a patient in, and the department I’d be working in means I would meet parents of children with similar conditions to Zariah. It just excites me!!!

Speaking of similar conditions, let me jump on to the next topic real quick! I had an amazing weekend away with my boyfriend. This time last week we were on a train to Manchester with no cares in the world. It’s nice to have someone that I can completely be myself around, it’s something I’ve never had before. I’ve never had someone who wants to have little weekend getaways and do loads of stuff with me. It’s a lovely feeling to feel loved. But anywaayssssss, whilst I was in Manchester, I met someone with Cerebral Palsy! We just came out of mini golfing, (where I had won basically everything lol) and whilst we were waiting for an uber, I saw a boy and his dad waiting for a cab as well. I’ve seen other people with CP before, like I remember one time in a hospital appointment in London, I saw a dad and his son who was severely disabled, but the dad didn’t look approachable, and I didn’t want the man to think I was insensitive or just nosey. I saw the boy in his powered wheelchair and just ran over (a bit creepy I’ll admit), but I’ve never had the confidence to approach others, and to be honest, it just feels like everyone with CP is hiding, because I literally never see anyone. When I saw the boy (I didn’t get his name in all my excitement), I started asking all kind of questions about the wheelchair, when he got it, how he gets around, what he had before the powered one, and whatever else came to mind. It was such a short conversation, I explained that my daughter had CP, and the dad was so friendly, it was just really nice. It was an amazing way to end a good weekend. I know it sounds pretty normal, but when I tell you sometimes it’s depressing not knowing anyone with CP or having any parents to relate to. Like even as I’m writing this I’m grinning like a Chesire cat, which might sound creepy, but recently, I’ve had more confidence to approach other people with CP and just start a conversation. I saw another lady like 3 days later in a powered wheelchair whilst dropping my daughter to nursery and did it all over again. When I started this blog, I had never met anyone with CP or with children with CP and now they’re popping out everywhere. I love it!

On another note, I’ve also made new decisions for myself and my family. I have previously stated that I parent Zariah alone, but have tried on multiple occasions to try and keep my daughters father involved in her life. Even though I have always done everything without his support, I was so conscious of being called “a bitter baby mum”, or “spiteful” or one of those mothers that use their kids as pawns when the dad is actively trying, but no. No more of that matey. I don’t think that sounds exactly like good news, but personally, I’m quite happy. I mean in an ideal world, of course I would love Zariah to have her father involved and for her to have an active, amazing, responsible dad, but you cannot force anybody to do the right thing. My constant attempts to keep her dad involved just affected me negatively. I raise Zariah on my own, without his support, without his contributions, without his presence, and he would sing sweet songs of how much he wants to do for her and how he wants to be involved but never deliver. He would flake on appointments, be unreliable, be rude, and just live his life as if he doesn’t have any responsibilities… Urgh. I do an amazing job of raising my daughter, I don’t need the abuse, I don’t need the name calling, I don’t need the insults, I don’t need the digs. I literally don’t need it. He missed Zariah’s first surgery, all the important appointments, would decide not to turn up to things because he’s annoyed with me, and the list just goes on. Last week he told me I’m not okay in the head and “I need help”. This week he flaked on Zariah’s appointment, despite him having the equipment we needed to proceed with the appointment. Enough is enough. I’ve always listened to everyone’s advice, to keep him involved and keep trying, but if it’s getting to the point where he’s negatively affecting my mental health, my happiness, my daughters routine, stability, and home environment, it’s actually enough. Today was enough. So with that, I made the decision to continue alone. I have support from my family, from my amazing partner, from my friends, and from complete strangers who send messages of well wishes. I don’t see this as bad news. This coming week symbolises a new start for me and I am more than excited to tackle life head first. Life is just really looking up.

We’re only halfway through the year, and my outlook on life has changed so drastically. Things are really looking up, I’m all about self love, self progression and just having peace within yourself. I think my new outlook on life has positively affected my daughter too. She’s happier, she’s more confident, she’s becoming more independent (I can leave the room without her now lol), and she’s becoming wayyy more vocal. Everything is amazing right now and I thank God and couldn’t ask for anything more. It sometimes gets depressing, and with all the trials in the last few months, it’s easy to feel like you’ve been abandoned, but God never forgets you. He always had a plan.

Anyways, thank you all for reading, and as always, message if you EVER need a friend, whether you have CP or a CP baby or not. Much Love xxx

“Special” School Success?!

Listen, I had a great day today. Just felt like a win after a million losses. It was overdue.

I called this blog success, which it is, but I should really call it a half success. In fact it’s probably closer to a quarter success but who cares? The point is I found a school for Zariah! I mean for the past few weeks I’ve visited a load of children’s centres, a few special schools, called a million nurseries and spoken to pretty much every council in north and east London. It grew pretty frustrating pretty quick. Somehow I got sick of hearing constant no’s.

I went to view another special school today. The only thing I can say is that they were amazing. The space is massive, there’s loads of facilities, they have medical staff on site, a swimming pool, trampoline room, sensory room etc etc.. The list literally goes on. They had everything. There’s still a load of little “nigs” that need to be sorted out that’s why I called it a quarter success. It’s still a normal primary school in terms of academic calendars and stuff, so I’ll still need to find a childminder for after school hours and holidays. On the plus side, the area it’s in has loads more childminders to choose from than mine, so hopefully we can find a match. It’s not walking distance from my house, or even one bus distance, so I might not be able to drop her to and from school each morning, but I’ll make an effort to do it a few times a week at least, as I still want to be involved and meet other parents. On the other days, Zariah would use transport provided by the disability team.

I’m so excited to be honest. I mean it’s early days, and like I said, loads needs to be done before we get there, but it’s just nice that things are looking up. She can only start once she’s 3 which is in 6/7 months time, but it gives us time to plan, and I am one heck of a planner lol. Zariah loved the visit, I mean she pretty much loves everyone, but there was enough space for her to jump all over the place, so win win (by the way, my daughter can’t walk or stand independently, but if you hold her up she’ll walk/run/stamp/jump and by the looks on her face and her screeches and giggles, she’s having the time of her life). The day was just good to be honest.

I’m in positive spirits about everything at the moment. I mean, it’s ages away, and we would still need to try and arrange something with the nursery to allow her to stay until she turns 3, or maybe find the perfect childminder in the area of her (potential) new school, but I really am looking up.

Of course, when I told my daughter’s dad about the news all excited and sh*t, he found a way to turn it around into a pre-argument. God knows what about because he doesn’t show up to anything, which is why I never invite him anywhere anymore. It rained on my parade for a few minutes, but I was swiftly cheered up by my partner, and to be honest, a little blip can never take away from how good today was. I had been searching for weeks and getting every door shut in my face, so the relief I feel now is just amazing. I can’t wait to get the wheels in motion, and for once I’m really looking forward to our next steps regarding Zariah’s education.

I was going to upload a cute picture of Zariah today, because she looked gorgeous when I dressed her this morning. The weather was nice, Zariah was in good spirits, but like a rookie, I forgot to take pictures at the start of the day and just said I would take them when we got home. When I took Zariah out of the car though, she did her business all over the place. God knows what I fed her, (she’s on some medication that helps her release her bowels), but yoooo. She decorated the whole outfit, everywhere I touched there was doo doo. You ever felt like this is a whole mess, you just gotta throw the whole baby away? That was me this afternoon. It was horrendous, and babies don’t stay still long enough for you to clean them, and Zariah wiped her sh*t on my arms, my fingers, my jumper, her jumper, her vest, dress and all down her legs and back. She’s all giggling and I’m having an internal panic attack.

Anyways, long story short, no cute pictures today. Blame Zariah.

If anyone is from Hackney, East London, and knows any childminders, please give me a shout! We’re a quarter of the way through the school journey!

Thank you everyone for the messages of support, the recommendations for schools, activities, childcare options and everything else. Thank you for sharing, reading, commenting, and messaging. It means more than you can ever imagine. Thank you to my boyfriend and my family who are ALWAYS an ear when I need one. Thank you xxx

They Want My 2 Year Old Driving a Wheelchair?

Cool, so I haven’t written in a while. I should really be thanking the girl whose blog I just read, because she’s actually what inspired me to start writing.

Zariah and I had a hectic week. Not a particularly horrible one, actually it ended quite well but started in a bit of a mess. Nothing particularly extravagant happened, but I thought I should share in the name of raising awareness and transparency.

So like most children with CP, Zariah had appointments almost everyday this week. In the name of this “transparency” thing though, that’s a lie. I really shouldn’t say “like most children with CP” because other than Zariah I know literally zero children with CP, so maybe it’s different for others, so I’ll just start again. On Monday, we had a big(ish) meeting with the majority of Zariah’s medical professionals (the physiotherapist, paediatrician, speech and language therapist and the occupational therapist). It started off as a general meeting just to update all the professionals on where we are with Zariah’s care, because even though they all work out of the same building, their communication can sometimes be trash (no shade to Hackney Ark if you’re reading this lol). Anyways, the appointment. It started off well, the paediatrician is this lovely Caribbean lady, she’s thorough and really knows what she’s talking about. We’ve had her since Zariah was born, which is nice because other than her and the occupational therapist, everyone else has changed like a hundred times. I can barely remember anyone’s names. Moving on though, I filled the paediatrician in on the latest of Zariah’s seizures, updates with medication, how Zariah is coping generally etc. and then we went into Zariah’s progress with each of the other therapists. The physiotherapist mentioned that Zariah recently had the GMFM assessment and the outcome was that Zariah is borderline 4/5 in their grading terms, meaning that it’s unlikely she will walk. It just felt like she kept trying to drum it in. She told me that she had spoken with Zariah’s other medical professionals and they “had all agreed” on it. All I heard is “we all think your child is going to be a vegetable” over and over again. Maybe it’s because I’m young or whatever or she thinks I’m too hopeful, but that appointment was only a few weeks ago love, trust me, I remember. You don’t have to keep beating the stick over my head. It’s just a touchy subject, I still get teary about it, how does one even get over that? It’s heartbreaking news.

I don’t want to keep dwelling on that, and maybe I should start to try and move on from that appointment, but even now writing about it and the appointment on Monday is just making me teary. I told the professionals about our struggle to find a nursery or childminder or school for Zariah. Being the centre for disability in our borough, I assumed that they would be able to give me some advice or have some experience of schools that accept and cater well for children with CP. They gave me the name of a nursery that is accessible and said that they’re not sure of the hours but they do offer around the year care. That boosted my mood a little bit after the whole not walking thing, but it was short lived. The physiotherapist said that once I find a nursery or school that is accessible for Zariah, they will start looking at giving her a powered wheelchair for her to get around, that nursery is the perfect place for her to learn how to use it. I almost choked. Excuse me?

& would you look at that, my tears are back for goodness sake.

In my head I was just thinking wtf? My child is 2. 2?! They want my TODDLER to drive a powered vehicle? I immediately had a picture of the powered wheelchairs you see people using in the street, with like a gear stick that you move about to power it? How are you gonna teach my toddler, who doesn’t understand much outside of the basics, to manage a powered vehicle? On top of that, it kind of just signified them completely giving up on her walking or being mobile by herself. Zariah can’t even sit up on her own, like what the actual hell?! The appointment for me, just felt like it was going from bad to worse. It was hard for me to take it as good news, but I kept it together. The physio and OT could see the shock on my face, and so they said they would email me details about the wheelchair for me to read after the appointment, and we moved on..

So this is the wheelchair image they sent me. Zariah has a communication button that looks just like the buttons that power the wheelchair. It made me feel less freaked out and I stared at this for ages. Still quite depressing. I know it may make life easier for Zariah, but it’s still a lot to swallow, and just signifies them completely giving up on her getting around alone.

Anyways, my thoughts on the wheelchair aside, we spoke about loads of other medical things, like aqua therapy for Zariah, her upcoming botox (I’m going to write a blog about this soon, it’s another thing that I almost choked and died about when they mentioned it lol), and her hip X-Rays. Overall she’s doing fairly well. That appointment wasn’t a horrible one, and I kept it together through the shocks and (what felt like) blows, but I felt deflated, and was one poke away from losing my sh*t.

I took what the therapists said about one particular nursery though, and contacted them in a bid to find out more about what they offer in terms of sessions and vacancies. I called them whilst I was in the car, after dropping my daughter off to her dads. When I spoke to them they said they don’t offer round the year care and they are a nursery “school” so it’s still only 9am-3pm… I know it’s so minor, but have you ever been completely on edge, and the slightest even half irritation just drives you to breaking point? I cut the phone mid sentence and broke down crying in my car. It might sound sooo trivial, it’s really not enough to ruin someone’s day or anything like that, but literally, that was it for me. I cried and cried in my car. Sometimes it feels like everywhere you go, they’re gonna shut the door in your face. It gets depressing. All through last week I spent time looking for childminders, schools, and nurseries, and nothing. I just want to work! It sounds so crazy but sometimes it can be hard, and when I say sometimes I mean a lot of the time. A LOT of the time. I just want Zariah to have the same opportunities as everyone else to be honest. I mean I continued driving after my cry, picked myself up and got back to it, but yeah, it can be hard.

ANYWAYSSS, my week wasn’t all bad, and hopefully I’ll have some news to share with everyone soon, but that was my Monday guys. Hope everyone had a better week lol, and again, if anyone knows anyone who may know anyone, please share! I’ll keep you guys updated and thank you so much for reading x