parenting with mobility and pain issues...

[Sanguine]

So, anybody got good tips for a new mum? I've got Ehlers Danlos Syndrome (hypermobility type). I have problems with dislocating joints all over, but in particular I have a narky pelvis that hasn't forgiven me for getting pregnant. I had revolting SPD and although it's better than it was I'm still struggling with mobility. I'm also finding that baby care is really hard on my hands and wrists. My wrists pop out every time I pick up the boy, and my fingers are really struggling with things like poppers. My LO is now 15 weeks and getting heavier by the day, I'm accumulating injuries accordingly.

I'd be interested to hear experiences of how to juggle crutches/sticks and baby, also of how best to go about simple baby care tasks like dressing or nappy changing when your hands aren't really working. Can you get baby clothes that don't have poppers, for example? I'd also like to know how people manage the pain in practical terms. I'm thrilled to bits with my lovely baby, I'm just keen to go about things properly so I'm not grinding my body into the ground.

I wish I'd known about mumsnet when I was pregnant, too. I developed MS along with pregnancy and by the time dd was born my life was a nightmare. It was 3 more years before I was diagnosed, at which point I started getting help - well another year, and then I got some help.

DD is 10 now, and obviously I still have mobility, pain and exhaustion problems, but we've moved and I have a much more helpful healthcare team from GP to Consultant; I have some new pills which I've just started which look really promising and I am hoping to be able to walk to the swimming pool and swim with dd for the first time this summer.

I'm posting really to let you all know that you can manage, things get easier, and take all the help you can get. My dd's early childhood would have been so different if I'd had help, so get all you can.

Beach, you can adapt a Stokke quite easily to have a side panel open out.

Prams are a bit more personal as it depends on whether you will need to go in a car/bus, your height, how you walk etc. When ds was little, we had a Mutsy as DH walks very awkwardly and needed the distance, but it was heavy. Best thing is to go to shops with a big range and try them out

BeachBlue I have similar problems. I have a muscle wasting disease so can't lift the car seat or the baby out of cot etc. My dd is 12 weeks old now. I have a bedside crib (made by troll) with a drop down side and it's on wheels. I don't need to get out of bed in the night, I just drag her across to my bed. This is so much better as before we got this, my dp was having to get up and lift her too me everytime she needed feeding. When she goes into her own room I am looking at having a cot adapted by a charity called Remap. I'm hoping they can raise a normal cot and can adapt the sides to a gate type opening. I can't find anything I can manage in the shops. Google their website as they have some examples of products they have adapted.

With regards to a pram I must say my stokke xplory is my best friend! It's lovely and high and is the only one I can manage independently. Without it I would not be able to take her out alone. I also use it in the house as I can't lift her from the sofa, so I put her in the pram, stand up, then I can pick her up. It also has a push chair attachment so you can use up until age 3 I think. I also have the adapters to use the car seat with it. I can't do this myself but it is nice and high. The disadvantage is that it's very heavy. I can manage it as my weakness is in my core and lower body but others might struggle. It's very sturdy so I lean on it to help me up and it keeps me steady when I'm walking. It's expensive but there are often lots on eBay. I would recommend trying them in a shop first.

Hi all.

It is fun being creaky parents all the crazy things we go through.

It is also fabulous and just because we are too bendy, sore, stiff we can be über brilliant parents so here goes, I have had Juvenile arthritis since birth so a lot of me is plastic or deformed joints, reach of an ant etc etc.

1. Huggies easiest brand of nappies to do with poor dexterity or teeth on bad days, or Sainsburys own.

1. Car seats are pants for new born babies and I tried them all at Baby shows! However try them yourself. Look around. However there is a fantastic seat in production that twists to face you at car door allowing easier accessibility of child called the Carkoon but it is not actually in shops to try yet,alternatively the maxi Cosi axiss has been my saving grace, also swivels but only suitable for nine months up.

1. Cot can be altered by a group of old boy engineers who do voluntary work in adapting say a cot from Mothercare to suit your access needs. The group is called REMAP so google them. Or look at the Disabled Parents Network for more medically adapted cot ideas but ones that work well.

1. A BUMBO seat. A life saver for parents who can't hold a baby for long.

1. Buggys less is more, the more rubbish, gadgetry it has on it the harder to open, push, fold and unfold ,it will be for awful joints. "Baby start "buggies in Argos are good simple flip out buggies, light weight hardly a whistle or bell to pull ping, snap, stretch or any other movement difficult for poor dexterity.

1. Ignore odd public, they are parsnips, smile and get on ,you are too busy for it now.

1. Zip fleece suits available in Sainsburys, Next, Mothercare. Avoiding need for awful popper clothing.Leggings with feet and envelope opening neck long sleeve tshirts are also good and available in Mothercare, Tescos etc.

1. eBay, for awful popper clothing ! As poppers have been so worked you can practically blow poppers up and apart.

Just some ideas, all on here are fab parents,you know why because we will teach our children empathy, consideration and emotional intelligence. We can read to our babies because it is an easy task to sit on bed with lots of books so they will no doubt be fab at reading when in school. You give time because you don't manage to get out and about easily.

However rubbish we feel our children will know they are so special to many of us who thought we would never be able to have a child and such joy so you go lovely creaky parents, right I need some painkillers!getting iPhone sore fingers now!

I have a blog with other suggestions and organisation details etc. Your next fun and games will be crawling and then you need to think about accessible gates and playpen. All have solutions though.Keep smiling x

C Jephcott

disabledpositiveparent.blogspot.com

Also Mumsnet blogger under positive disABLEd parents look for a teddy in wheelchair with baby teddy icon.