Recently it would seem that I am incapable of resolving any of the things on my ever-growing 'to do' list without appearing desperate, irrational and impatient.

For special needs parents it can often seem our own child is not our own and actually property of “the system”.

One of my biggest frustrations with it all is the admin, the chasing up, the phone calls, the letters, the forms, the applying, the waiting, the call backs, the voicemails – the lot.

I am sure you can all relate and this is probably a recurring theme throughout all of my posts for Firefly thus far. 

You see the caring role, playing with my daughter, all of that – I love it. 

It is exhausting, it is hard work, and but it is rewarding. 

The days can be long, and her need for absolute constant sensory stimulation from me can be wearing but it isn’t even a blip on my stress radar compared to some of the things we encounter daily – the things out of our control.

I spend literally hours once Amy is in bed, researching medications, various diagnoses, feeding issues, different formulas and ingredients, studies, therapies, and indeed fellow bloggers’ posts. 

I’d like to think I have become a bit of an 'Amy expert' and that we know best. 

If I want to change her formula and do a trial – I have to ask permission from our dietician and get a prescription. 

If I want to test some new equipment, we have to get our OT or physio to come and approve. 

When I know we need to go up a g-tube button size, we need to be assessed by community. 

When I explain that I am burnt out and need more respite – it is decided for me what I need. 

It just seems like sometimes I am begging, pleading, gaining permission to do so many things in so many areas of my daughter’s life and it can be so disempowering. 

I know there are others who share my frustration as it is something I have discussed at length with other special needs parents. 

Generally our specialists work well with us and take on board all of our requests but it does always seem that money, funding, or someone up above is calling all of the shots – pre-deciding everything on our behalf.

It is terrifying and upsetting.

Probably my best example would be the ordeal we are facing in getting the right wheelchair for Amy. 

Now I am not proud of this – but I did shout at the lady on the phone. 

I have never ever done this before but the lack of compassion and her reluctance to be helpful pushed me over the edge on what was already a tough day. 

I wasn’t personally offensive, I mainly ranted about how shocking the whole service has been and explained the injury my daughter is currently getting from her current pram.

In some ways I am glad I shouted at her, sometimes people need to see what they have pushed us to and how hard this can be. 

I am asking for a wheelchair for my daughter who is not able to walk – I am not asking for a free holiday home and a cheque for £1 million.

So, we had an assessment a few months ago and were told the wheelchair would be ready in August. 

I was a bit annoyed at the wait but was patient. 

We have been desperate for one for some time as Amy is very tall for her age and her pram is providing no postural support at all. 

The straps, no matter how we adapt them, cut into her and her strong extension pattern (one of her cerebral palsy features) makes their positioning look very uncomfortable and probably dangerous for her spine and hips. 

So I rang them and they had changed their mind on what she was having and couldn’t give me a date for the next assessment. 

I waited a month. 

I rang again to be told they’d sent me a letter with an appointment. 

I had never received this letter.

When I looked at the appointment I was overcome with panic (yes, a big feature of my life is generalised anxiety disorder. Don’t worry, I am medicated) when I realised we had not 3 but 4 appointments booked for that day. 

I rang and asked for a new date and she snottily retorted that I would have to wait until December. 

I asked if I could go on a cancellation list and she said “the best thing to do would be to phone everyday and ask if there are any cancellations”. 

Can you believe she said that? 

I was absolutely horrified that, in addition to the many things I am responsible for in the day, she would assume I have the time and energy to dedicate to a daily phone call to wheelchair services.

Exasperated, I gave up and rearranged all four of the hospital appointments. 

Long story short – we have a wheelchair now but it is absolutely not right for her. 

It’s a very old second hand one, it was a dusty, shoddy-looking thing that does nothing for her extension pattern. 

I decided that we are now going to buy (somehow) our own wheelchair – when I rang for a quote I was told our physio had to be there to authorise the sale and ensure it is right for her needs. 

This makes me feel so demoralised – I absolutely know what she needs, in fact we just want the base of a wheelchair to add her current seat to which has been authorised by physio!

As much as I may have ranted in this post, I would like to state that not everything is out of our control, we have had some truly amazing purchases through the fundraising we have done that hasn’t involved needing physio to approve. 

We’ve managed to buy bubble tubes and all sorts of sensory equipment to help with Amy’s vision. 

We have also been able to get the Firefly GoTo Seat (actually we have two) and I absolutely don’t know how we would have got by without this in our lives. 

The same goes for our Upsee, our special needs iPad holder, our big mac button, and so many other things. 

Filled with rage as I may appear in some of my posts, please know that I have an overwhelming amount of gratitude in my heart for so many people that actually do help to make our lives easier.

I normally like to conclude my posts with some sort of moral to the story, or a positive outcome, or even a bit of advice (usually really good advice that I don’t take it myself!) but today I am running on empty and can’t quite get the words to convey what I want to say to you all. 

I guess this is a whinge post mainly, but also a solidarity post. 

A post saying: you’re not alone, and we do have it hard. 

I guess what I am also saying in a roundabout way is that our main issues in life are out of our control and something somewhere needs to change. 

People need to actually listen, life isn’t always processes and funding, sometimes parents do know best. 

I questioned “why do we have to fight?” many times in my head. 

I know the answer. 

It is for our children. 

They are everything, they are our world. 

It’s more a case of why should we have to fight, shouldn’t it just be a given that our children get what they need? 

Why make it into some kind of challenge?

In addition to that I guess I am also saying how life as a carer is made harder by unnecessary obstacles put in our way. 

There is a great amount of joy to be had in this role, everything that is hard about it is mainly something logistical, it’s not the child herself – the child is actually perfect – that’s the problem, the child is so perfect, so deserving, that we want everything possible to ensure they are getting the quality of life they deserve.


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