Battle fatigue and burnout when raising a disabled child. It’s real and it’s around the corner!

Parenting is a tough gig. No one ever truly prepares you for the sleep deprivation and fatigue in the first few years of parenthood. Add a child with PMLD (profound and multiple learning disabilities) in to the mix and you are catapulted into the stratasphere of inability to function without copious amounts of coffee and a twisted sense of humour.

I am utterly blessed to have 3 children under 6. We spent 5 years trying to conceive our eldest child and had almost resigned ourselves to the possibility that children may never be on the cards for us. Thankfully that wasn’t the case but our journey is not the one we expected or longed for in all those dark days of infertility.

Almost 6 years in to my parenting journey and I feel like I’m heading for burnout. It’s not the nappies, the feeds, the childhood illnesses, the being up during the night with the kids when they need me. I adore those nights where one wakes up upset and wants me to scoop them up and snuggle them down and be their safe place as they melt back in to me and drift off again.

My exhaustion comes from having to be constantly in battle mode.

I feel like we conquer one battle only to move on to the next. You slice the head of one battle and 3 grows back in its place. In addition to being a mum I also work full time in a call centre. I work 9 hour 45 minute shifts either 4 or 5 days per week depending on the week. I’ve just had 2 days “off”. These days were not spent taking my kids out, catching up on housework or even sitting with my kids playing with their toys. They were spent gathering evidence for Hannah’s DLA renewal, fighting our housing association to get the large communal area enclosed for the children’s safety and having the most frustrating of conversations with our disability social worker regarding Hannah’s Self Directed Support application.

Social work want to know why Hannah needs a large size changing table to meet her continence needs and why we just can’t lie her on a plastic sheet on the floor. Yup. You read that right! With all the campaigning for changing places facilities we are still having to have these conversations with professionals. I explained that apart from the fact that it’s disgusting to change ANYONE on the floor, my back can’t handle changing her on the floor. What if my back goes out? I can’t work therefore can’t earn, I can’t function therefore I can’t care for my children.

She also then proceeded to say well really Hannah is just like any other 5 year old mobility wise. It might have been at this point my voice got raised and without shouting at her, very firmly told her that I won’t stand for anyone downplaying my daughter’s disabilities just to reduce the services she is entitled to. She backtracked at this point and tried to state she was playing devil’s advocate for when out application goes to the next stage but I don’t buy it.

Then there’s the dreaded DLA renewal. So far I have had to re-apply for Hannah’s DLA 5 times. One of those actually went all the way to tribunal. We get awarded 1 year at a time as her needs might change. Unless her 8th chromosome grows back I doubt it. Hannah will always have PMLD. That’s not me writing off her future or not having faith in her ability to progress. It’s fact. Her condition is genetic and as it stands she is delayed by over 60% of her age. So why do we have to fight so hard for everything.

I understand budget cuts. I understand being understaffed. What I don’t understand is mis-allocation of resources in the public purse. Disability benefits being put in place then millions spent in trying to prevent people from accessing them or disproving their entitlement to them. Health services focusing their spend in a reactive way and only helping in crisis when it would cost much less to provide a preventative service.

I am grateful to live in a country where disability benefits and an amazing healthcare system are in place. But accessing them for my daughter costs me my own physical and mental health.

The time Hannah spent on life support in 2014 could have been avoided had she been properly assessed and given antibiotics. Instead she had 6 GP appointments, 3 of those were out of hours, a 40 minute seizure where she aspurated her stomach contents and it almost killed her, almost 2 hours in resus with 20 doctors fighting to keep her alive, an emergency CT scan, 5 days on life support with round the clock 1:1 care, countless expensive drugs and tests, a further 4 days in hospital and the subsequent mental health treatment I needed to get over the PTSD I suffered as a result of witnessing doctors intubate my child as they fought to save her life. The cost of all this easily ran in to tens of thousands of pounds.

I am grateful but I am also exhausted. We’ve battled more than anyone should EVER have to in the last 5 years and it shows no sign of letting up. But if we don’t do it, then who will? So I have to straighten myself up, suck it up and keep going (with the help of coffee and a wonderful support network of family, friends and fellow warriors). It’s my only choice. Hannah didn’t ask to be born with disabilities. No one does. She has fought so hard to stay alive so far. The least I can do is fight her battles that she can’t, for the things that she needs to keep fighting her own battle and keep her safe, secure and healthy.

My own mental health and fortitude is tested repeatedly and I just hope that things get easier. The more people challenge and and fight constructively then change WILL happen. It won’t re-write our history but if fighting these battles means it improves things for Hannah and all those families that come behind us so they don’t have to fight so hard then it’s worth it.

Author: Rebecca Pender

Rebecca Pender is based in Glasgow, Scotland and one of her many hats she wears is mum to 3 young girls under 6. Her eldest daughter Hannah has an extremely rare genetic condition called Inv Dup Del 8p. She also lives with epilepsy, brain abnormalities and a learning disability. As a family they refuse to let any diagnosis or struggle define what they can or cannot achieve, they may just have to improvise the plans. A graduate of the internationally recognised Partners in Policymaking programme, a leadership programme for parents of disabled children and disabled self advocates, Rebecca is a huge champion of disability rights and is determined to break down barriers for disabled people in areas like inclusion, collaborative care with health providers and social injustice. You can follow her on Facebook and also on Twitter.

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