A typical day yesterday as Freddies carer-
Freddie wakes & I put a clean nappy & clean set of clothes on him .
Breakfast time. I make Freddie weetabix & Evie toast. Evie eats her breakfast while watching the tv, I have to feed Freddie as he isn’t able to self feed. Freddie can be hard to feed as he tends to spit & dribble his food alot.
I clean Freddie up after a very messy breakfast. Evie gets herself dressed while I prep Freddies first dose of medicines.
3 sets of medicines administered. Clobazam, Epilim & Domperidone. Along with this there is plenty of water to keep Freddie hydrated. I also check his dribble patch is still in place behind his ear & replace if necessary. I also give his gastrostomy site a clean. Syringes are cleaned ready for his next dose.
I quickly get dressed. I either take Freddie with me or strap him in his chair so hes safe. He can’t be left alone for even a minute as he is very good at getting into trouble.
Time to start therapy. We start with our speech and language games.
Next we do some physio. A small amount of tummy time using our secret weapon, the ipad to encourage Freddie to lay on his tummy for as long as possible. He manages about 30 seconds.
I bring our box of sensory toys down and explore lots of different textures and encourage Freddie to use his hands to feel them.
Speech & language therapist arrives. She shows me some new games to play with Freddie and we work through ways of keeping Freddies attention. We try to include Evie in the games too and I learn some new makaton signs.
Lunch time for Freddie. I feed him half a jar of baby food, again fairly messy with the spitting & dribbling.
Nappy change and Freddie goes to bed for his afternoon nap.
I make me & Evie lunch. I then have jobs to do like washing up, washing & drying clothes & ironing. I also use this time if i have any phone calls I need to make to the hospitals or therapists or to chase up equipment.
I wake Freddie up & I try feed him a bottle of milk. Freddie struggles with fluids and is very easily distracted. After milk we have a nappy change.
I sit down with Freddie & we have a play on his ipad. I use this to try & increase his concentration levels & to encourage his to use his hands.
Freddie gets tired after too much unsupported sitting, he starts falling over & his spine bends so I sit him in his corner chair with some toys while I go and wash his bottles up and make a new batch of milk.
I try and do a bit more physio with Freddie. I encourage him to go on his tummy again and help him to get into a crawling position.
I prep Freddie another half jar of baby food ready for his tea and start cooking Evie a meal. I spoon feed Freddie while Evie feeds herself. I then leave Freddie in his highchair while I prep his evening meds & get the pots washed up.
I administer Freddie 3 more meds, movicol, domperidone and omeprazole. I also give him another load of fluids. Syringes are washed ready for the night time meds.
I give Freddie a wipe down with a clean flannel and clean his gastrostomy site. I put some e45 cream on him & I then get his pjs on while Evie gets hers on. We spend the next hour winding down ready for bed, sometimes with sensory lights & toys or sometimes we look at Freddies ipad.
I brush Freddies teeth & change his nappy ready for bed.
Freddie is put in his bed & I then read Evie a story before she goes to bed.
I spend the next 2 hours going up and down the stairs as Freddie won’t settle. He screams and screams until he sees my face and then will stop & just smile. He struggles with going to sleep despite clearly being tired. I do him another nappy change in this time and eventually he goes to sleep.
During the evening i prep Freddies night feed & get his pump ready. Freddie is hooked up to the feeding pump to up his calories for the day and also has 2 more meds doses, Eplim & Clobazam and he has another nappy change. There’s some crying overnight but nothing too bad.
The above doesn’t include fitting in seeing Freddie’s 18 doctors and other therapists. It doesn’t include changing the water in his mickey button, it doesn’t include household jobs like going shopping or trying to hoover and keep the house clean. It doesn’t do justice to how much effort goes into doing Freddies physio or other therapy. It doesn’t include sorting out prescriptions or taking delivery of medical items. It doesn’t mention that when I change a nappy I have to fight Freddie to stay still as he has no idea what i’m trying to do to him. It doesn’t include the sick I clean during the day & night from his reflux, and when his nappy leaks over night. It doesn’t include the carrying around of Freddie that I do or trying to bath him. It doesn’t include trying to spend time with Evie while keeping Freddie entertained at the same time. It doesn’t include the fact I have to try & squeeze in driving lessons & have a wedding to finish planning in 4 weeks times.
Some people may read the above and think so what? I do this with my children too. But the big difference is your child will grow up. They will go on to feed themselves, to dress themselves and use a toilet. The will become able enough to look after themselves. It is very unlikely Freddie ever will. He will need a carer his whole life.
This is what I do for my 34p an hour. If I didn’t chose to care for Freddie he would cost alot of money for someone else to be paid to care for him. I read that it can cost up to 3 times as much to raise a disabled child. But with a disabled child many of the mothers/fathers leave work to become a full time carer & therefore earn only their 34p an hours and not a full time job workers wage. No wonder they say 4 in 10 disabled children live in poverty.