So, as you can probably tell by the title, right now I’m on 1000. I can’t put into words how much of an amazing day today has been. It just feels like testimony after testimony, and for that I’m eternally grateful. At times where it feels like no one is on our side, here comes God, waving his hands of wonders all over our lives. He is truly amazing.
I know I haven’t written in literally months, but there has been so much going on, and so much I need to fill you in on, which will come in time, but today, we’re talking WINS. I don’t ever take L’s (losses), however in the past few months especially, I’ve hit so many brick walls, and felt like I was fighting a losing battle on my own. I mean this whole blog started after I was told my daughter will never walk, and then days before that I was told to find new childcare for Zariah ‘cos they can’t cater to her need anymore. In just a number of days I was handed so much bad news, and felt myself sinking into a depression. On the back of the news from the nursery, I started looking for special schools for Zariah, and when I found the perfect one and thought things were looking up, I was shot back down and told they wouldn’t take her until next year (I will go into that in another blog). I got into a major back and forth battle with them, and it wasn’t pretty. Urgh. Well today, I signed papers for my daughter to be admitted to that same school, next week. Can I get a hallelujah? Amen? Praise God? Something? Honestly, excited is such an understatement. I fought for my baby and I won. I’m coming for the JUGULARRRRRRR of anyone who’s not tryna do right by my baby girl.
Aside from the amazing school news, which is the literal peak of my entire year after the battle we went through, I’ve got new blogs I’m working on, I started my FINAL year of university today, got good news from my first choice graduate scheme, and overall, things in my life are just starting to piece well together. I’m eternally grateful for everyone that’s been wishing Zariah well, and I’m looking forward to the next stage in this madness adventure. I know I have readers who also have special needs children, with some in areas that really don’t offer much for your children, so I will explain the whole school battle with the learning trust in another blog.
Thank you again for all the love and support, and as always, feel free to message me absolutely anything. I pray everyone else uses the rest of 2019 to take CONSTANT wins x
My baby is starting school!!!
Also, completely unrelated but as a Nigerian, I have to mention it. Happy Independence Day to the LOUDEST, MOST TALENTED, MOST POPULAR nation in Africa. Another good thing to add to my list of wins x
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
You know what nobody tells you? How isolating it’s going to be. How much harder you and your child are going to have it, and how little everyone will do to accommodate to you.
When the doctor sat down and told me Zariah is likely to be capable of nothing, they should have also included that you will feel lonely even when there’s a multitude of people around you. They should have said life for everyone else goes on, whilst you feel like yours is moving at a snails pace, or sometimes not moving at all. They should have said you might be depressed for the rest of your life. They should have said that.
In my first ever blog, I mentioned (briefly) that my daughters nursery was kicking her out because they “can’t cater” to her anymore. It’s a little bit more complicated than that, and I probably shouldn’t have said “kicking her out”, but long story short, they told me to try and find alternative arrangements for her, and that’s what we’ve (well I’ve) been doing, well trying to do. It’s proving quite difficult.
The nursery hasn’t actually chucked us out onto the street and said don’t come back by the way. I got a lot of outraged parents saying I should take action or complain about the nursery. It wasn’t that simple, and tbh they are lovely people, I don’t really blame them. So here’s the back story. Zariah has been at that nursery for 2 years now. She started at 4 months. It’s early I know, but honestly, staying at home for me was really depressing. It was medical appointment after appointment, and I spent ages trying to find a support group for people who have gone through similar circumstances, or for parents who have children with CP and couldn’t find a thing. There was nothing for us. It was hard to take Zariah out and about in a buggy, she couldn’t lay on her back, she would scream and cry in discomfort, and it was a lot to carry her in my hands or the sling. I think I was just way too overwhelmed. Even though she didn’t have a diagnosis yet, by 4 months we knew it was coming, and could see the differences between Zariah and other children. I keep saying a lot of “we’s”, but I think by now it’s clear that I am a single parent. It’s just me and my girly. I mean obviously Zariah has a dad, who she sees sometimes, but that’s pretty much it.
Anyways, back to the nursery. I started her there at 4 months and went back to work for 2 days a week. I just wanted to go back to normal adult life and have a minute or two away from throw up and soiled nappies. Is that bad? At this point, the diagnosis was likely, Zariah wasn’t making any progress towards milestones and she was really stiff, at that age she couldn’t bend her arms or legs. I wanted her to be around other children from early, and I wanted her to be a sociable baby, even if she was physically limited, so I looked for “normal” nurseries. I came across the nursery Zariah is at now, who said they had experience with special needs children, which ticked like 100 boxes for me. I arranged to view the nursery and meet the staff and it all went from there. They were amazing. I explained the likelihood of the cerebral palsy diagnosis, and they did their best to accommodate for Zariah. Zariah only drank milk at this point, and had problems feeding from birth (remember we had to teach her to suck, and she was tube fed for weeks before she started breastfeeding/sucking properly). I used to express in the night and bring bottles there, or sometimes come to nursery from work, and breastfeed Zariah in the staff room. The nursery really tried. There was one member of staff there who was like Zariah’s second mum. Did everything for her, and as Zariah got older, she would only go to this member of staff. Zariah’s time at the nursery has just been amazing.
We got the diagnosis, they tried to adapt so much for her there. They got her involved in activities, this one member of staff used to take time out of her personal time at home and search for activities on the internet that stimulate babies with sensory disabilities. She would improvise and made handcrafted versions of things she saw on the internet, would carry Zariah up and down, would teach other staff about Zariah’s routine. Literally, when I tell you, this woman is the kind of nursery nurse you pray for. She was part of the family. As Zariah has gotten older, the rest of the staff, and babies have just been amazing. Zariah loves it there. The kids love her. Some of the children have been at the nursery since Zariah started, she’s literally grown up with them. The whole isolation thing I was talking about earlier, didn’t exist. So when I got the news that the nursery are struggling to find suitable arrangements to accommodate for Zariah, the blow just felt 10 times worse. The one place Zariah has stability, has friends, is accepted and has a routine, can’t care for her anymore.
The nursery isn’t accessible. There’s a lot of stairs, and the playground for the children is downstairs, with all the nursery rooms upstairs. It’s an old building, it wasn’t made to be accessible. Zariah is no longer a baby and likes to play outside and be with the children that are her age, but she isn’t mobile. She can’t crawl or walk or anything else, and so staff have to carry her up and down everyday. The nursery have agreed it’s not feasible for them to keep carrying her around, especially as she is getting older and is not mobile, so now we have to go. They have tried, and are still trying to find ways around the accessibility issue, but it just comes down to money, which they don’t have enough of.
So yeah, on the 17th May, they told us they wouldn’t be able to keep her long term, and we should start looking at alternatives for childcare. I’m a working mum, but have always sorted my work around my child and childcare, so at times, especially now, it has been really strained. But moving on, I started looking for special schools. There were quite a few special schools in our borough and the neighbouring one, but when you cut that down to schools that cater for children with CP or other physical disabilities, there were only two. To be honest, I don’t actually need to look for schools that are close because Zariah would be eligible for transport to pick her up to and from whichever school I decide to take her to, but who really wants to send their child far away? I won’t be as involved in her care, or be able to adequately monitor the school or Zariah’s progess, and let’s not forget, my baby is only 2. 2 years old, and they want me to look for primary schools already. The special schools cater for children ages 2 to 19 usually, dependent on their needs but the hours are different, they don’t offer around the year care, and it’s almost impossible to find after school provisions for children with additional needs.
It’s starting to get real difficult, and as a mum you never wanna give up, and pretty much can’t anyways, but it’s like what do you do? Where do you find childcare?? I can’t be the only person with a disabled child, so what does everyone else do? I cant be the only single parent of a disabled child either? I can’t see myself sitting at home living off of disability benefits because who really is that helping? It’s not enough to live on, and it’s just a one way street to depression. How do you find childcare? Or childminders, or a school with decent hours to support a working parent? It’s lonely, some days I find myself calling 4 or 5 different councils, or childminders and it just gets disheartening. I still want a career, a successful career. I still want to accomplish things, even more so now because I have Zariah. I don’t want her to struggle, and I refuse to live here or be in this position forever. But it really is isolating, having so many doors close in your face. “We can’t cater to her anymore, we don’t offer care for special babies, we don’t have an after school service, I can’t take her on if she can’t walk” bla bla bla. This is what drives people to depression, the constant rejection from society, the lack of awareness and education on conditions that affect a large community of people.
Anyways, I’m pretty sure I’m just rambling now, but just wanted to express my frustration somewhere, cos even though people offer support and kind wishes, it’s still isolating. As days go on, it just feels more and more like it’s just gonna be me and Zariah for the rest of our days, and no one is gonna be here to help. Just need to get used to it really and figure a way around it, but sometimes it just feels like it’s all too much. I hope I’m not a bad parent for saying this, but it’s like I’m 23 years old, it’s hard to keep your head in the game and keep going, some days I legit just want to crawl away and disappear. Some days I want to run away, but I couldn’t leave my girl. We’re literally on our own, maybe when I get my degree I’ll do my research about where there’s the best support and just take my baby and up and leave. There’s not many special provisions for Zariah, the focus seems to be on autism these days, maybe that’s more common, so I gotta come up with my own devices so my daughter doesn’t fall through the cracks. It’s just a lot sometimes.
We’re in the process of visiting schools and will maybe look at other nurseries, I’m not entirely sure, I don’t want to take her to another nursery for them to say the same thing down the line. I’ll try and keep you guys updated anyways, and keep my head above water.
If anyone has any ideas, or knows any childminders or anyone with special needs experience, I could really use some help. Or just someone with ideas, because it’s becoming quite overwhelming, maybe I’m just not reaching the right people yet. Anyways, thanks again for reading, and yeah.. hit me up xxx