Special needs and disabled children - the childcare mystery!

So I am am currently on a quest to find adequate childcare for my disabled daughter and her sister - by this I mean I am looking for a holiday and before and after school club that is able and capable of caring for my child whilst meeting her needs but allowing our family the flexible childcare we need to allow both myself and their dad to work in our current chosen careers.

Wow... I knew it wasn't going to be easy but what a minefield it truly is!

Up until recently I have accepted the standard response I get that childcare providers such as holiday clubs and breakfast clubs have given "well she will need one to one which means we need to employ more staff and that will need to be funded by you or social care" 

We have not explored social care previously as I don't think we will meet the criteria required to access the funding. But perhaps we were wrong to assume this.

The other side of this is that she has been heavily dependant on support to self care. Toileting has always been a "can you help me" scenario, especially when getting on and off adult sized loos and with hygiene. But this has changed over the last few months. After Christmas my little angel was 'buggy bound' due to some problems with her feet. She had to be manually manoeuvred around the house and lifted on and off the toilet. She was off school for 10 days as a result of the impact this had on the support they were able to offer. This situation was on and off for three months. It wasn't until Easter that she was fully independently mobile again. I was worried sick, crying every night, and panicking about the impact this would have on her independence at home and school as well as her confidence and friendships. I needn't have worried as it actually had the opposite effect than I expected. She is more determined to be independant, which has led to some leaps in her confidence and ability to complete some challenging tasks. Her friends saw her vulnerabilities, which appears to have strengthened their friendships as they push her to do more for herself but are there by her side to step in at any moment to help her out. But I digress. 

This has all led to her being less reliant on outside help and support. Which means this whole "she will need one to one" speel will no longer wash with me as that is simply not true. At school where her limitations impact her education, yes she needs one to one constantly! But in a club where she is free to just do as she pleases, like at home, one to one is not needed all the time. Yes there may be times where she might ask for extra help, like wiping herself or cutting up food, but this very rarely happens now as she is so determined to do things alone.

So I have been on a hunt for a childcare option that can work for us. I know we live in a rural county where we struggle for variety and locality in some areas but still, it can't be too hard can it?

Yes, the answer is definitely yes, it can be really hard and worse! 

Being told your child is "too much for us to cope with" is heart breaking. Seeing the awkwardness in someone's eyes as they listen to you explain some of the support needs my child has, trying to make her sound so easy to care for whilst reiterating the important bits that can be the difference between life and death with her. It's really crap if I'm honest. Once people meet her they see how easy it is to care for her, but on paper she reads like a complex insurance claim waiting to happen! Yes her conditions are complicated, their management requires confidence and some in depth understanding, but you know what, if in doubt call 999 then call me. It's not complicated to do that much... I have to do this day in and day out. Often people say "but she's your daughter, you choose to do this" erm no I didn't choose to be a parent carer to a disabled child. I chose to be a parent, the carer part came along with no input from me (apart from the near death experience as my body rejected her so badly it started to shut itself down) 

And while we are on the subject of choice, I often get told "what about reasonable adjustments? Don't they have to make them for disabled people?" Well yes, we could pursue that path, but after being told "oh gosh I don't think we could meet her needs" or "wow, that's a scary prospect isn't it" you kind of loose confidence in the provider to be able to WANT to care for my child. 

So where does this leave us? Well child,infers are an option, but they charge a freaking fortune when you say the word disabled as they have to reduce their ratios in accordance with Ofsted (not sure how much of that is true... I am trying to find out and will update you all when I'm clear on the subject) or they are not flexible enough to meet our needs. 

So what's the answer? I could work from home... Tried that and there's only so much motivation can do to combat a demanding seven year old, plus I like to leave work at work when I can! Or I could not work... But I have a right to be my own person, to provide for my family. Plus the work I do actually helps to improve these crappy situations our family find ourselves in, so why would I stop doing that? Plus what example is that for my children? Giving up so easily...

I will find a way. I will get the right childcare. I will also keep harping on about this to the local authority and highlight the need for inclusion to be improved!

C'mon scoob, let's solove this mystery!

The power of pancakes

Motivation... What do you use? 

My daughter is one of those wonderful examples of stubbornness where you know she is capable of lots of things if only she would apply herself to really get it nailed! But no, she will not do something until she is ready, that has always been 'her way', and that's okay!

But how do we motivate these little monsters so that they keep trying and keep pushing their abilities? Well with our little one, when she was really little, we tried everything. Getting her bottom shuffling was a real challenge until we realised that she enjoyed chasing dishcloths. She would watch us for hours throwing a dishcloth from one to the other over her head, she would try to move after it but couldn't quite get it. Then one day I threw it for her and said "could you get that for mummy?" and she went, bottom shuffling across the room like an energiser bunny. I cried with joy, it was such a silly but pivotal moment for us.

With toileting it was choc bars and choc drops that inspired both my girls to become independant in the bathroom. (Food seems to be a good motivator, shockingly!) 

Over the years we have tried everything from sticker charts to marble jars, money to sweets... For each new challenge she needs to master it tends to be something completely different that motivates her. We are currently using pancakes with honey and chocolate sauce as a deal clincher to get her to do some yoga in the mornings, our 'secret Physiotherapy'!  We have even sat there feeding her a mouthful for every pose she moves into... I know! 

But ultimately it's all down to her, she will do things in her own time and at her own pace. That will never change! And actually this makes her a very strong individual, with little fear and lots of enthusiasm for trying new adventures.

What motivates your child to overcome a challenge? To try something new? Or to master that thing they have almost got the knack of?

Mum's the word

I answer to many names since having children, mum being the most popular one. But that doesn't mean I'm not still me, Zara.

So why is it that when we take our daughter anywhere professionals refer to me as mum? I'm not their mum... I'm also not being mum when relaying sometimes complex information about my daughters last alder hey neurosurgical outpatients appointment. I'm being Zara, professional parent.

I've heard from many parent carers over the last few years that this is one of the most frustrating parts of their contact with other professionals. And as someone who also works within this specialist field it really gets me!

So why is it a problem?

Well let's start with respect shall we. Many moons ago, when I was a young child, my grandparents instilled in me that to show respect to another person is paramount to earning their respect in return. You do this by introducing yourself when you meet for the first time, being open and polite in manners and body language, and calling them Mr... Mrs... until they say you can use their first name. You never refer to them by anything else unless they expressly permit you to.

So why do professionals keep calling me mum? Do they not respect the valuable contribution I can offer to the conversation? Do they not respect my role as parent carer to a disabled child? Do they not respect me in my own right? This automatically puts the parent carer on the backfoot as they are immediately asking questions about their value. This leads to anxiety, nervousness, doubting the importance of anything they say. And that's just wrong! 

I am the one that sees the daily impact living with a disability has on on my daughter. I am the one that soothes the tears when she is refused access to a bouncy castle because she has to wear a splint. I am the one that has to deliver thirty minutes of physio when she wakes and thirty minutes of physio when she goes to bed. I am the only person who attends EVERY SINGLE appointment other than her! So who is the most qualified person to talk about my child? Oh that would be me, Zara...

Another issue I find in the use of the name mum by professionals, and something my youngest got really confused about a few years ago, is it is completely confusing for children! I'm their mum, so asking a question like "what does mummy think?" makes them wonder who you are talking to. I don't know about you but my children know my name as other grown ups call me Zara. Having children didn't take my identity from me, so why wouldn't people use my name? So when a dr once asked "what does mummy think?" to my then three year old, she sweetly replied "who's mummy? My mummy's Zara" and I creased with laughter as I had seen it coming. The dr wasn't sure what to say so I had to explain that to them (my children) I am mum, mummy, mumma, but to everyone else I am Zara, and my children at 3 & 5 years old understand that.

It got me thinking though, with children that have autistic traits or learning difficulties where they sometimes can see things very black and white, calling me mum instead of Zara will undermine their respect for you as you are being silly using the wrong name. How will that impact your relationship with that child? I'd imagine they would not be as respectful of your opinion in the future...

So when you as a professional go to call me mum, just think about what that says about you. Are you being disrespectful? Are you being silly? Or are you simply not thinking about your manners?