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?

A special needs Christmas

So by now the big man has been, chaos has ensued, the turkey is bubbling away in the curry pot, and we have enough bin bags to fill the wheelie bin twice (and they're not due to lift them till Saturday...) so that's Christmas done!

What was the hardest part of your Christmas?

Getting the turkey to fit in the oven, with pre leg removal still not solving the problem?

Convincing the kids that sprouts are magic turkey food and not elf poop?

Perhaps it was putting 1001 stickers on the kiddies new toys, to be told you've ruined it as its all backwards?

So we suffered all that in our home this year, but while you were circumnavigating the half erected pony mansions, the non operational (because the battery compartment requires a screwdriver that's in the shed) cars and light sabres looking for your phone / remote / game controller, we were frantically searching through them for splints, Lycra sleeves, and specialist pencil grips.

You can't leave the house until you know where these things are, and amidst the additional chaos of Christmas it's surprisingly easy to lose track of them...

But the extra stuff we have is not the biggest issue we face during Christmas, this year I have met two new foes. Skinny, drainpipe trousers are fast becoming my new nightmare! My nearly seven year old is very keen on her fashion, so I try my best to keep her things on trend. The issue we currently have is this skinny jean look. They are all well and good if she can wear her splint on the outside, tucking her jeans / trousers into the leg, but they have turn ups and thick patterned seams and all sorts of fashionable add ons down them... These rub, and don't sit comfortably against her AFO. So we try to slide them over the top, massive fail most of the time. Seamless skinny jeans would be ideal! But they are either dull or hard to find easily. Fashion is often ignorant of the many restrictions they create with some garments. My daughter always struggles with long sleeved tops due to her limited mobility in her right arm but I find it hard to buy her clothes that fit, look good, and don't create additional barriers to her independently dressing.

I'm aware that a top high street retailer are soon rolling out 'disability friendly' sleep wear, but what about the rest of it?

If only fashion could also be considerate... Well let's face it we shops that tailor for size 18+ only, sports shops, petite ranges, tall ranges... All for adults, what about kids? What about those of us that can't easily do up press studs or zips, or slip into skinny drainpipe jeans?

My second new nemesis is scooters! Scooter number two for Xmas, now this one is a doozy as it is a suitcase with a built in scooter, so that makes her carrying school bags and scooting much easier, yay! But they have non adjustable handles... What we need is a scooter that has one 'normal height' handle and one lower down so her shoulder doesn't get stiff. To do this is "customisation" and really expensive! But why can't they be designed to have adjustable features so you can do this easily? That way she can have a minion scooter without me having to scour the Internet for weeks looking for a plain one that meets her needs and then sticking minions onto it!

It sounds silly doesn't it that we can't buy stuff that is aimed at and sold to our kids? It's one of my biggest annoyances!

So what should we do about it? Short of managing our children's expectations and creating a demand for a change to large companies approaches there isn't really a lot we can do...

So like all parents, we grin and bare it...

My child has a hidden disability, what's your excuse?

My daughters and I can often be found food shopping or walking through the local market towns browsing the shops for a little treat. We love getting out and exploring, but sometimes my four year old gets tired and wants to be carried, so we have a buggy for just in case. Sometimes my six year old gets tired and wants to be carried too. Not a problem, we have a buggy major for her, but I can't push two buggies, and my eldest is now too big for a double buggy so my youngest travels on the foot rest of the buggy major, or they share the seat of they are feeling kind enough. For me this is not an issue. I'm happy to do this so my back doesn't hurt from piggy backing one and pushing another...


We are also entitled to a blue badge (currently disputing our lack of replacement but hey ho) and we always use it if the car park is a distance from the shops or if we intend to do lots of walking whilst out.


I am happy that my child is entitled to these services, so we use them as she needs them, which isn't always but its more often than not required.


So when I meet someone on the street who tuts at me for allowing my nearly seven year old to sit in a buggy, our who shouts abuse at me when I park in a disabled bay and exit my car with a perfectly healthy looking family, I always ask one question... What do you think you know about this situation?


Recently I exited a disabled toilet with my two girls to be confronted by a disgruntled elderly lady. "There are toilets in there and baby changing in there. Genuinely disabled people would like to use these facilities" the lady said as she barged her way past my girls nearly knocking my daughter over.
"excuse me" was my reply
"you have no manors, why should I?" I was aghast at the lady who was quite obviously a miserable person today.
"we rightly used that toilet as my daughter has cerebral palsy so needs the rails to steady herself when sitting"
"no she doesn't she looks fine"
I was nervous but said what I thought anyway "you looked pleasant, but looks can be deceiving" grabbing my girls I walked away before I lost my temper.


I always encourage others to be the bigger person, but do you know what... People need educating!
 Not all disabled people fit into societies stereotypes, my child isn't in a wheelchair for example... Why do people need to be so rude when all they need to do is ask a question "did you know that was a disabled facility?" would have suffice and I would have politely explained the situation to the lady.


At what point did we become so disbelieving in this country? If we cant see it it is obviously not there... Well that simply isn't the case for many disabled people or those with additional needs.


So what is your excuse? Ignorance is not bliss in this case, it is simply rude, upsetting, and quite frankly downright disgusting. To think ill of a situation without fully understanding the facts is just not acceptable anymore. The sooner society understands that the better!

Doing it for ourselves... Is a professional essential to meeting needs?

So last week I took my two girls swimming and I had a really good physiotherapy session with my eldest in the warm water. And i started to think. We don't see our physiotherapist very often, in the past this has concerned me, but there are some very good reasons for this.

1.) our physio can offer us a limited pool of information to work with, ie my daughters needs haven't changed alot over seven years so neither has her physio programme. It is as essential today as it was when she was six months old.

2.) we don't have many questions, but when we do we call our physio to clarify. This reduces the number of visits as we will discuss the matters arising as they arise rather than build them to a point where we need a one hour slot to fit it all in.

3.) our community physio team are under resourced and over stretched so they can't come weekly to deliver physio. They can offer support, advice, and delivery of care where it is essential but that's about it as they don't have enough hours in the day to do more.

4.) our physio trusts and believes that we as parents can be left in command of our daughters programme, we can deliver and meet her care needs as well as any professional, which fills me with pride as there are many parents that wouldn't have the confidence to do this alone as we have done.

This got me thinking, does it really matter that we don't see our physio as frequently as we would like if the visits we do get are good enough quality and empowering enough that we can continue to deliver what our daughter needs?

If services were better able to recognise the families that can be empowered to self serve, and were able to train parents to deliver the appropriate care, we could keep more families on the books with less intense programmes being delivered directly by parents with support from the professionals. This would free up the professionals time to support families that have greater need for the professionals hands on delivery, it would also mean fewer families having to be discharged and re referred so often due to the fluctuating needs of their child or young person. This would reduce the stress on all involved in the long term.


So do service cuts matter?
well yes they do, we still need the service to operate, we still need the resources and the staff to deliver the work. But what we don't need is to be stuck in a system that discharges you because you don't need the intensity of care that others do. My daughter still needs her physio, orthotics, optometry, occupational therapy etc but she doesn't need to have it delivered directly by the therapists weekly. Services need to change tactics. Instead of cutting funding, be more imaginative and creative with the delivery. Empower families to deliver some of the therapy more effectively at home, bridging the gap when the specialists cant visit every two months.


Often parents tell me that their child only gets four hours of speech and language therapy a month. I always ask how true that statement is. Does your child stop talking when there's no therapist around? Do you not continue with the activities you salt practitioner has offered you? Does your school not continue to work towards that target area?
Answered no... So your young person gets far more than four hours of speech and language a month, it's just not delivered by the salt practitioner.


I understand that cuts are never good news, and that funding is always required, and that professionals are essential. But can we not be more empowered, can we not be more resilient? Is a professional essential to the daily delivery of all our Childs needs?
Sometimes yes, and sometimes no.


I urge you to think about it...

The elephant in the room

I have spent nearly seven years trying to get my head around the fact that we don't talk about the elephant in the room...

Depression!

Why is it so hard for us to openly talk about depression? It is estimated that one in six adults in the UK suffer with a mental illness, the most common of which being anxiety and depression. And we don't like to talk about it because... What, it's shameful / embarrassing / taboo? Why? If one in six adults may have a mental illness that means on average you could meet upwards of one and a half thousand people with a mental illness in our lifetime. So why are we so shy when talking about it?

As a parent carer of a disabled child or a child with additional needs we are more susceptible to being medicated for anxiety or depression. But medication isn't the only way to deal with this.

After twenty months of "what a shame you never got to experience a normal labour / first few months" blabber and my standard response of "but I know no different, this is our normal" I finally got it. It hit me like a tidal wave in the first three days, then I shrugged it off and thought it was just the baby blues that all mums get for the first few days after child birth. My second daughter had arrived and I did what I had always done, plodded on. It wasn't until maybe three months after she arrived that I spotted the difference, I was more animated and interactive with this baby than the first one. Why? What had changed? And what did it matter?

Well it didn't matter, not really, but that is hindsight and the knowledge of what was really happening talking. At the time it was huge, the biggest and scariest thing since my eldest had made her defiant way into the world. At the time I had realised that not only had I missed out on those precious moments with my eldest that I was now enjoying with my youngest, but she had missed out on them too. I had failed her by not keeping her safe in pregnancy, as my body had rejected her in the end, but I had failed in giving her the start in life she deserved. After all the trauma of a pre term birth, six weeks in hospital, numerous specialist appointments since, and life saving brain surgery, I had not made those moments in between as special as they should have been. Why? Because I was in a daze, I couldn't handle the"stuff" that was being thrown at us so frequently. But what was different now? Why did I treat my youngest so differently?

Because there was no expectation on me...

As a parent of a disabled child people expect your life to become dedicated to that person, they expect your world to spin on its axis and change direction forever. But it has already done that on the day you get told that all of your hopes and dreams for your Childs future may be nothing but that, hopes and dreams, unrealistic in this new world of disability. You are already consumed by fear, regret, guilt, and a whole bunch of other negative emotions. You need something that you hold onto to keep you at least partially sane, for me that was doing things I would normally expect to do, like shopping or going out with friends. I remember one time, while my little one was in hospital still, my cousin was going wedding dress shopping and I was eager to join her and my aunts. When I asked if I could go too I was looked at like some sort of joke had been shared that I had missed, I was astonished to be told that "no you have a baby in the hospital to look after, you don't have time to do these things."

I felt such shame in wanting to be a part of the special occasion that I relented and said "of course you're right..." I now realise what I should of said was that I had just come from the hospital after being thrown out at 6am as I had sat there all night and fallen asleep in the chair after having been there since 8am the previous day. Maybe I deserved a break, maybe I needed one to ensure that I was still me somewhere inside and not a tired shell.

So I felt guilty. I had realised that my first baby had been neglected of the all consuming need to bathe her in love because I had been too worried about my own identity in amongst the chaos of her earlier start to life.

So now the love that I smothered both of my girls in was eating away at me because surely it was too little too late... Surely I had already failed.

Do you see how it can begin and then spiral out of control?

But that's just ridiculous isn't it? Why would I feel guilty about wanting to do something for me, about trying to focus on all the different needs I had to address everyday for my first born. Well because that's what its expected of me.

As a parent of disabled child we try to conform as much as we can by way of making up for the fact that this one area of our life is not "normal". So we get easily upset when these simple things don't do as we expect. Like, for example, the lasagne turns out too crispy and you just freak out, throwing it in the bin. Completely overreacting. And when you tell people they all look at each other and mid knowingly, sharing some unspoken understanding that you have obviously lost it, you are failing as a parent, you can't cope with your disabled child.

Well no, what a load of rubbish!

I can't cope with the pressure society puts on me to cope! I can't cope with sitting in the dark alone!

I am lucky that my partner was, and still is, really supportive of me.   He sat with me when I cried telling me to let it out, he took me out when I needed cheering up, he put the children to bed when I needed to spend time being me not mummy, and he loved me more for sharing all of this with him.

So lets talk about it, it's not shameful it's normal! Every parent goes through it, we just have extra stuff that makes us put off dealing with depression, anxiety, and all the other stresses that we secretly hold inside. Make people aware of the fact that today is a bad day, but tomorrow might not be. It is our right and our duty to our own health to be honest about this.

So I mentioned that parents of disabled children (well carers in general to be accurate) are more likely to be medicated for depression than most people. Why is this? Because we have a responsibly to the health, safety, and wellbeing of another person that we all recognise as being really important to maintain, even when we are not doing so great ourselves. And because we lead such chaotic and busy lives, medication is the easier way to manage depression and anxiety. But there are loads of other ways too.

I found the burden of explaining that mum is on medication for depression at my daughters clinical appointments when completing family history was just as bad for me as being depressed and taking no action. So I took different action, I changed my medication from pills to exercise. I started going to fitness classes and joined a gym, where I caught a bug for living healthy. So I trained as a fitness instructor and swapped taking tablets for teaching classes. And it works. Whenever I am having a bad day, I learn new routines or throw myself into that nights classes.

Now don't all go joining the gym on my say so. Each person has their own piece of themselves that offers them a positive nuerochemical response (releases the happy hormone serotonin)

Mine is dancing, so fitness works really well for me. Other people I know enjoy crochet, card making, furniture restoration, running, gardening, and one of my friends finds solice in education so has thrown herself into training to be a teacher in SEN. And there are all the other alternatives too like therapy, meditation and mindfulness, and so much more.

What I am saying is that the elephant in the room doesn't have to block the doors and windows, it doesn't have to be so big that you can't handle it. Talk about it with those you love and trust, share your fears and concerns. I will bet you that they feel the same sometimes too and that they have also kept quiet.

Keep being honest with yourself and soon enough all those big scary emotions get put into perspective. They don't always leave, but you will find a way of looking at them for what they really are. Are part of you, not all of you.

As a parting note, I challenge you to tell a loved one about an emotion you experience today that you would never normally share... And explain WHY!

Good Luck x