The reason I started this blog is because someone needed to start the ball rolling of getting UK help out to disabled parents. There is a serious lack of input from professionals and it just is not enough to have the odd random web site where there are the suggestions of where to buy specialist cots at £2000 a go when actually you need to learn where to buy popper free clothing and how to change a nappy with ease.
When I was pregnant with Christopher I had no information. I was seeing an OT at the time about getting our bathroom converted to a walk in shower, she knew I was pregnant and almost fled the house! She suggested absolutely nothing, said that I should look on line, that was the extent of her help, frankly this is hopefully a rare and exceptionally poor response as an OT in 2011. If you are too old to do your job and can't come up with more than that then for goodness sakes leave! There are lots of people with real drive and ideas available on the market.
She did keep going on and on about how I should get a kitchen sink that was on a platform that could go up and down and then discussed her problems she was having with her thousands of pounds kitchen installation of her own. I decided I didn't need a Disabled Facility Grant for such a ridiculous bit of "special equipment" when there are others who would really need funding for something like that but we could buy our own IKEA kitchen and do our own adaptions to any thing.
I went to see the Midwife who was a very sweet lady but she knew nothing about working with disabled parents. She waived a bit of paper under my nose and said there is a breastfeeding anti natal class going, she didn't tell me if there were stairs I couldn't do,parking availability,chairs available to sit on as I couldn't get down on bean bags! At one visit to the Midwife clinic she proposed I climbed two flights of stairs despite knowing that I had to have a stair lift at home as I can not climb stairs!
The best experience I had of being a "to be parent" was the medical team, such as the anesthetist and consultant. I had to have a C-section at 35 weeks and Christopher had to be a planned early delivery because I am petite in every direction and I have fragile bone construction, the team were concerned about what the extra weight would do to the joints. I was given steroid injections to make sure Christopher's lungs were developed well before birth. The anesthetist discussed knocking me out as I have a very curved spine so they can not get epidurals in any where. My neck does not flex enough to stick tubes down my throat when I am out so they have to stick fiber optic tubes down my nose and into my windpipe whilst awake. They used morphine to make me very zonked whilst they tubed me. The anesthetist was fantastic! He took his time, looked at my difficulties and reassured me. As was the whole consultant led team. Medically I was well cared for and closely monitored. Christopher was a little stonned on Morphine when he was born but he came round and I held a perfect little chap at 2.30pm on the 30th Dec 2010.
After birth I was stuck on a normal and under staffed maternity ward. I could hardly move from the C section, I had to learn to pick Christopher up on my own as soon as Mark left, this was difficult because I had started to cease up which always happens to me after anesthetic. With burning arms and hands I gently found my own way of picking Christopher up, only a few hours old and he was patient and the calmest baby in the room. We worked together. I dragged a pillow over my lap whilst balancing Christopher on my bed and managed to get him onto the pillow and bent my breast to him to feed him. I have no idea where I got the pillow idea from, I think I had seen breast pillows in shops and thought that might mean I don't need to hold his weight so much.
Mum and Dad came in with 35 week old titchy clothes, with elastic waist pale blue cord trousers and a nice envelope neck little top. However with my ceased hands and arms I just couldn't get the clothes on him in the morning and so I put him into good old velcro long sleeve vests from Mothercare until Mark came and helped me put a little more on him.
I just got so upset in hospital, my husband was tired and feeling sad without us home. I couldn't manage a darn thing on the ward, there was no accessible shower, no nurses trained in working with creaky people so at times I couldn't even undo my own medication bottles to get my required drugs, the cot was difficult to lift Christopher out of, they served food somewhere in the ward, no one showed me where and I couldn't have walked there any way as I was starting to get the flare women get with arthritis after having a baby. I was sliding myself out to the loo and stumbling back on legs that were giving up. In the end I just said I am going to have to go home with my son because this place is not set up to my needs. Still no OT came or any one to offer ideas on daily child care of my son and it seemed pointless sitting around in an inaccessible place. At least at home my husband and I had gone and brought shop brought baby stuff that could help me.
My husband struggled to haul me into the car at the hospital because my knees don't bend much and yet I couldn't use my stomach muscles from the c section, to move myself into the car like I usually do to compensate for my lack of bend ability. We got home thank god.
It was New Years Day. I was full of usual parent feelings of "oh my god what do I do now" and then the reality of the disabled parent of "oh my god how can I do the next baby related thing!?!"
This is why I am working on this blog and why I have huge plans for a new web site. Something that offers real support to disabled parents,creaky parents, bad back parents or just normal parents. I have so many ideas and so many plans.I will make sure I get help out to parents to be, let them know you are not alone, lots of disabled men and women have babies and lots of fun,huge joy and happiness is to be found.