This week is #CarersWeek2018.
Being a parent involves many challenges however being a parent of a child with disabilities and/or complex/special needs is all the more challenging.
In my case, each morning would begin with me doing chest physiotherapy for Joshua, to aid his secretions. Usually this made him physically sick so I'd bath him and do a wash load to clean up. Then I'd make his feed up, opening a new bottle, feeding tube, adding calorie powder and programming the pump. Joshua had 15 medicines per day, I'd prepare what I could for the day ahead. I'd need to remember to take everything when we went out, including sterilised water etc for his flushes. I'd spend the day checking the time to prepare and give each medicine and kept his medical journal up to date.
Joshua had 20+ professionals, each day would be spent making phone calls to various services, attending appointments, and chasing up follow up equipment and prescriptions, etc.
Some days may not go to plan, Joshua would pull out his NG tube or he'd often be sick at least 3 times in the car on my way to work. The laxatives/suppositories would all of sudden kick in and his bottom would 'explode' mid shopping, causing for a sink bath in the public toilets... This was our normality. I'd give anything and everything to have it back!
Of an evening after repeat chest physio and feed preparations I barely slept for watching over Joshua. He had severe reflux and due to his disabilities was immobile therefore when he was sick I had to ensure that I speedily turned him or sat him up. Due to Josh's brain damage he could not control his body temperature. I woke at least 6 times a night to change the base sheet that he slept on and to turn him.
Occupational Therapists would advise me as to how to carry Josh as he was getting bigger and how to bath him with regards to looking after my posture so as not to damage my back, etc. These are all factors which are often overlooked when we think of carers...
Being a #Carer would no doubt be easier if #ChangingPlaces facilities were widely available, we were lucky in that Josh could still be carried and could fit on a changing station. It would have absolutely broke my heart to see him being changed on a dirty, germ ridden toilet floor.
Every situation is different but caring for a child with #SEND is hugely challenging, at the time I actually didn't realise how difficult life sometimes was. It was my normality, it's what had to be done, it's what I did as Joshua's Mummy. Joshua needed me and I need him. I miss being his carer, I feel lost all the more as I used to have such a busy 'care routine' but I will always be Joshua's Mummy.
We were incredibly fortunate to have a large, supportive family who were able to offer us #respite if and when we needed help. Sadly, not everyone has this support network available.
I now encourage those who are carers to ensure that they take the time to care for themselves and more importantly be kind to yourself.
To help our families to #connectsupportthrive and #inspireinclusion we're looking forward to welcoming Pauline from @CrossroadsTogether on the 11th July to expand on ways in which carers can gain support...