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