“A day in my life as a special needs mum is much the same as that of a typical mum. I get up, make breakfast for the kids, dress them and get them to school. But with Meliah, her breakfast consists of morning meds and her special milk feed that goes through the tube in her stomach. Dressing her involves raising her adapted bed to my height so I’m not bending down to her and trying to dress the wriggling, excited, happy monkey that I’ve just woken up. Meliah likes to party through the night, so most mornings she’s still asleep when I go in. But as soon as she sees her uniform, she’s wriggling with joy!
Getting in the car is always a battle. She doesn’t walk very well, and doesn’t want to walk outside, but as part of her therapy, I make her walk to the car every morning. This is usually accompanied by her chuntering to herself the whole way! Meliah can’t talk and her communication is limited to hand over hand and noises. But when you know her, it’s abundantly clear what she wants, as she demonstrates every morning in the car when demanding that morning’s chosen toy.
Taking Meliah to school is a relief for me. Not in a ‘I don’t want her around’ way. But just that for those few hours a day, she’s with people that know her and care for her. They understand her, and she’s safe. When she’s at school I can switch my brain off and do all the other things that need doing. They know how to deal with her quirks and what to do in an emergency. They’re also very good with dealing with stressed-out parents!
Once we get home from school, Meliah likes to have antisocial time. Too much social interaction overwhelms her. So after school she likes to sit in her chair on her tablet. She has 4 feeds a day, an unusual arrangement as most tube-fed children are either on it all day or all night. But this was one of the many decisions that you have to make as a special needs mum: I wanted her to have set meal times, in the optimistic hope that one day she will eat meals!
Meliah does not like going to bed because it means she has to put her toys down. However, she also loves going to bed because she loves her bed and her bedtime projector! So we usually have a small cry with a bit of stimming but then she’s happy to go up! We turn on the projector and the baby monitor (to monitor for seizures) and she happily sits and there until she falls asleep. Literally. She doesn’t lie down until she falls down because she’s asleep!
My day to day life differs only in small ways. Nappy changes still at 7 yrs old. Feeds instead of meals. Medication morning and night. Daily therapy practice. Communicating without words. But it’s not always a typical day. Some days we spend in the hospital or other medical practices. Some days we deal with more than others. And that’s where places like Peter Pan really help. Because when Meliah was first diagnosed, I had nobody to turn to who had any experience in any of this.
Being a special needs mum is something you don’t know how to do. It’s not instinctive as normal mummying is. There are no ‘what to expect when you’re expecting a special needs baby’ books. Because every special needs child is so different. There are so many forms to fill in, sometimes so many battles to fight to get your child what they need, to get help, a diagnosis, the right therapy. It’s lonely when you have to give up work and friends because you’re spending all your time just coping. But when Meliah started Peter Pan, I found friends in the parents and staff there. I found the help that I so desperately needed. Because it gets so overwhelming, when you can give your child that takes up every second, and every spare inch of your head space, to someone who you trust, who you know can deal with them, well, it’s just a relief that you can’t put into words. Which is why when I was asked to be a Parent Trustee for the centre, I jumped at the chance. Because special needs parents need special needs parents.”
Definition of  stimming:
Stimming is a self-stimulatory behaviour that is marked by a repetitive action or movement of the body such as repeatedly tapping on objects or the ears, snapping the fingers, blinking the eyes, rocking from side to side, or grunting, and is typically associated with certain conditions such as autism spectrum disorder. It helps to process the sensory input we’re gathering, stay calm and grounded when overwhelmed, and express joy, distress, or whatever we might be feeling.