What did you do in the holidays?

Summer holidays throughout my childhood  were all about my lovely grandparents, days out, and reading. My teenage years involved staying up late watching MTV, angsty music, long lies in, looking at posters in Athena for hours followed by the pictures (cinema) with my school friends. When I look back at my student summers they are a blur of working, and night after night out in town curing hangovers with berocca and red bull. As a new teacher without children my summers were full of festivals, visiting cities, wine, and being skint. When my daughter was born summer holidays suddenly changed again. I felt enormous pressure to fill her every waking moment with stimulating activities and experiences in this world of competitive parenting. All of which exacerbated my own insecurities of being a rubbish mother.

My daughter was nearly 4 when Nate was born. Larger than life. Inquisitive and hilarious. Nate’s first summer was spent in SCBU and there was always this nagging feeling I needed to claw that time back somehow. My children HAD to bond and we needed to start our journey as a family, making memories along the way. Nate was small and frail for the subsequent summers and we worried about venturing very far away from hospitals who knew him well (as he became ill very quickly), but we were determined to go out and about as much as possible for our daughter, and our own sanity.  Around this time Nate continued to spend so much of his life in hospital that we attempted to squeeze in as much family time as possible while he was home and relatively well. Even while on oxygen it was fairly easy at that point to throw Nate in his car seat and be out for the whole day without any issues. 

Now, aged 8, and around 30kg, just leaving the house with Nate feels like a huge accomplishment, some sort of cardiac workout in itself moving him to his wheelchair and then clamping it into the car. We need to plan for being able to change/ toilet him therefore must either visit somewhere with a “changing places” facility i.e a bench and hoist, or be home within a few hours. Just like any child my son needs to be fed. The difference being I need to either take a blended meal with us or find some sort of baby food while out, although the low calories in this food make it less than ideal. We need to remember an extension set, meds, syringes and oxygen. A change of clothes. Pads and wipes. So in my head there needs to be an overwhelming benefit (for at least one of us) to justify the trip itself. 

This year I decided that unless Nate was feeling tip top it really wasn’t worth all the effort and planning.  Nate has slept through expensive trips too many times, and it grates on me to pay entry into places where there’s nothing appropriate for him to do. 

The big lad.

Venturing out as a wheelchair user ( or with one in our case) in this country can be pretty shitty. Nate uses all of his DLA mobility money to lease a wheelchair accessible vehicle or WAV ( note to readers- not a free car!). We are lucky in that both myself and Michael drive, but the lack of disabled spaces, and arseholes parking in them can be problematic. Toileting on days out and long drives is a huge issue. Yes the number of changing places toilets is increasing, but it’s doing so slowly and the majority of service stations and visitor attractions remain without one. At least we can get there I suppose... if you need to use public transport the situation can be much much worse. In our experience bus drivers are often unwilling to ask bus wanker passengers to move from disabled seats and will rather not stop than address the issue and let you on. I was very impressed in London a few years ago when a bus driver got off to explain to us he already had a wheelchair on the bus and had no more room, but that he had contacted the bus behind, they definitely had room, and would only be a few minutes. I’d like to think that level of consideration and/ or training is standard, but I know it probably isn’t. 

I’m still traumatised from my one return bus journey where I nearly tipped Nate’s chair over getting off the bus as the driver refused to put the ramp down, and that was after me having to ask, and then tell some older people to move a few seats down so I could get his chair where it needed to be. Teacher/ Mam “death stare” (as my daughter calls it) comes in handy. 

Railway stations are opening changing places toilets too in a nod to inclusion, but the trains themselves remain a stressful experience requiring a ramp to board only to find wheelchair areas packed full of luggage or passengers refusing to move from allocated seats for those with disabilities. Special assistance ( who are armed with the ramps to get you onto trains) often fail to turn up even when booked well in advance. I can’t log on to twitter without reading on a daily basis the upsetting experiences of people with reduced mobility on our railways. Aeroplanes remain inaccessible to the wheelchairs themselves and to fly you are required to leave your custom chair at the door and hope the baggage handling companies don’t lose or damage it, and remember that you actually need it to disembark. And make sure you don’t need the toilet! 

So this summer Nate started the holidays quietly, sleeping most of the day due to the heat. When the rains came my little Nate perked up and had some better days full of cheek, but it’s incredibly tricky to find things to do that suit a stroppy pre teen and a cheeky small boy who happens to have PMLD and can’t see. So some days I didn’t try. It’s not that we did nothing. We did. But I may or may not have been found around lunch time braless and unwashed on occasion. I even wore no make up *gasp* and left the house, which is massive for someone so pale she looks dug up. Seriously there’s healthier looking vampires ( and I don’t mean those sparkly twats from Twilight). “Fuck it” I thought, I’m not in competition with anyone, and with the overnight care situation remaining unresolved finding motivation to do anything was sometimes pretty hard. BUT I/we have managed to do the following:

- binge watched OITNB 

- caught up with friends 

- met up with a lovely ATRX family 

- binge watched Killjoys 

- spent time with my nieces 

- took Nate swimming

- escaped for a few days with the family 

- escaped the family for a night away with Michael

- started running again 

- drank wine 

- got all of my daughter’s school uniform sorted at the beginning of the holiday ( I deserve a bloody huge parenting award for this, first time ever). 

- read a few books ( husband threatened amazon ban, which was met by a suggested Arsenal ban, argument over)

- daughter has swam most days

- seen some lemurs 

- haircuts for the kids 

- played board games 

- annoyed my daughter

- took the daughter to Friendsfest 

- new slings for Nate

- watched my daughter in the wettest football tournament ever 

That’s in addition to the usual phone calls, meetings, hospital appointments, dog walks, and work work. 

And yes I’m probably more tired now than I was in July. 

Not shit again

Not to be confused with “not more shit again!!!!! Argh” ( a common shout in this house) . 

I need to share some happy not shit photos to brighten this really wet and miserable day. And no Nate still isn’t asleep, 28hrs and counting... 

It’s not shit playing with your fluffy bird ( and trying to eat it) 

Sly licks from your pal Fred aren’t shit either. 

It’s not shit supporting England ( although a bit shit when they get knocked out) 

Birthdays aren’t shit, although working out what to buy him is... 

Being musical isn’t shit, but he’s clearly thinking this is much better with my music therapist 

Walking the dog at the beach isn’t shit. 

And being outside in the sun certainly isn’t shit. 

On support

Our care package after many years is finally what I would call “fairly robust”. We have a personal budget for Nate and can use this to fund respite at a local provider and overnight care in the home. It is flexible which in real terms means we can ( in theory) alter the quantities of each type of support as required. Unfortunately the care company has lost staff and currently can’t fill all of his overnights. It had got to the stage where I was feeling a little bit guilty that we have all of this in place and that things were ticking along as smoothly as they can with a complex young man. So the fact our care package hit what can best be described as a snag seemed somewhat fair. 

How did we get here?

Accessing any version of support involves assessment. Shitloads of assesment. Carers assessment, core assessment, continuing care assessment. Repeatly answering the same depressing questions with the same depressing answers. The process began when Nate was very small, turned blue a lot, and had many many rides in ambulances. He wasn’t expected to live very long and the constant trips to hospital had us as a family hanging on by the tiniest of threads. Much of that time is a blur. The hospital welfare advisor suggested we call the children with disabilities team at social services and ask to be assessed. After much tactical avoidance ( by not calling me back) a lady arrived at my house, put her cigarette out outside my door, and came in to “assess” us. This lady informed us we couldn’t have any respite or help ( not that I knew the name for it back then) as this could only be provided when he turned 7 or 8. She shrugged when I told her he hasn’t expected to live that long and I was torn between a desire to poke her eyes out and having a good cry. The crying won. 

I cried and cried. I cried because I couldn’t cope with constantly monitoring all of his equipment. I cried because I loved him so much. I cried because I felt helpless as I watched his oxygen requirements edge upwards and him struggle to breathe on a regular basis. Eventually I cried at the right people. We were fortunate to have a fantastic local service led by portage which involved play groups, sensory play and Physio led sessions. All of this was just about keeping me sane and it was here I first heard that it was pretty obvious Nate met the criteria to access the local hospice. It was this that marked the first step in getting us the support we needed. Respite at the hospice was a lifeline. Getting to where we are now support wise is long, complicated and fairly novel-esque so this is probably enough information.

Over the last 2 weeks I have read with despair critical comments made by parents of young people and adults both with and without disabilities. The comments were mainly linked to the recent Panorama documentary “Fighting for my child”  found here: 

https://www.bbc.co.uk/iplayer/episode/b0bc2ch6/panorama-fighting-for-my-child

The comments included “well I’ve never have respite and I’ve managed” or “I wouldn’t let anyone else look after my child” and “it’s the parents’ responsibility why do they think someone else should help them out?” “ why should the grandmother be paid?” Now I know many parents who do a fantastic job looking after their young people who have disabilities without additional support, however they don’t use their personal situation as a way to bash other families. Every child is different. Family dynamics vary hugely. If you don’t need respite that’s great, if you don’t want it that’s fine too. If you’ve been knocked back because of the assessment process or decision making toolkit saying you don’t meet the criteria, technicalities, panel, or a lack of support by professionals doing the assessments I am enraged for you. If your care providers are shit let’s sort the bastards out and stick together 💪🏻 supporting each other on the way. 

If you are on your knees with your caring role you will need to muster up the energy to say the right things to the right people to ( hopefully) access anything at all. 

One thread on Facebook spiralled into a commentary that families get enough money handed to them and they should fund these things themselves. I’d like to point out DLA is for everyday living expenses and it doesn’t go as far as you think. To put this in perspective Nate’s whole monthly DLA would fund one night and part of a day in his current respite. Panorama went on to show a mother who lost her direct payments she had been using to employ her son’s grandmother. This triggered horror and indignation amongst the masses which demonstrated that the general public has no comprehension of the demands of caring for a complex child and that they seem to think this lady wouldn’t have her own bills to pay and life to fund, instead of horror that a vulnerable family had lost access to their only means of practical support. 

Some of these commentators- mainly people unfamiliar with caring for children and young people with complex needs ( and even some that are) went on to pass judgment on the situation below where a sibling has the full responsibility of an adult carer. 

https://bbc.in/2McJR7k

*pulls on ranty pants*

You don’t get to dismiss the need for respite and support in one breath then get to criticise families who put huge expectations on siblings in the next. In an ideal world siblings and young carers shouldn’t have that level of caring expected of them ( the article details the extreme end of young caring and I was horrified ). However the reality in this climate of cuts is massively different from the ideal and families survive and function whichever way they can. It’s easy for me to say I wouldn’t put that level of responsibility on my daughter when we have a support package in place. Equally you don’t get to cry over the poor children and their families and then support cuts to local services. Vital respite provision is being cut around the country and many families will suffer as a result. 

To come full circle this morning Nate is best described as “pure radge” having not slept a wink last night. He is very dystonic and sweating profusely. IF he does go to sleep today he will need his ventilator and oxygen, if not we can expect gelastic seizures and tonic episodes tonight. “Luckily” the care company sent their senior carer over as a stand in until they have recruited and trained new staff and can actually fulfil the package. Them being in last night is the only reason I can function today. The best way I can describe our caring role is for you to imagine a newborn’s demands, add in loads of meds and equipment, and then them never ever grow out of it. 

So yes I let other people look after my child. 

Rested Natie 

No sleep Natie