Thursday, 18 August 2011

Independent,positive disabled parents, a journey through being parents and living with arthritis.

Another blog written by parents, yep but this is really is! Sure we are a happy,fun and loving family consisting of one son,one husband (Mark) and one wife (me), no difference there you say. However both myself and Mark have severe arthritis and not of the old biddy type which is average wear and tear on joints over time, but where the immune system attacks itself and declares war on all joints and organs.  I have had arthritis since 15 months old and I have bionic knees, hips, elbow, ankle, wrist.I will be having my knees re-replaced as a result of carrying more weight during pregnancy.I have to be honest I do have limitations (something I don't like to admit in public often),I have zero reach,weak muscles and a walking distant of an ageing snail !

Mark is creaky all over but very tall,I am 4ft 11 due to steroid treatment throughout my childhood.Mark is yet to get fantastic plastic joints and doesn't have the same extensive damage as me as he got the illness in his 20s but he has more immune attack than me (which you get earlier on in the illness) so he feels more flu like than I do.

Rules of the house/ blog, this is not a place for people to moan about DLA applications, if you want to do that there are loads of DLA hijackers on any disabled forum. This blog is a place for people to read about independent parenting. It is a place that says just because you have limited limb movement etc you can be a fantastic mummy and/or daddy. Our only carer exception is in the form of one furry dog from a charity called Canine Partners in the form of a big golden lab called Yasmin,more on her later. We have no human carers as we would feel a certain lack of independence and our dignity would feel like it was sliding away. 

Finally I am saddened that in 2011 there is a distinct lack of knowledge of equipment or how to manage with a whacking big baby and any form of physical disability. Professionals have offered very little because they just haven't been given the knowledge or experience to deal with a physically disabled parent. Being a first time parent is a difficult adjustment for anyone but it is ten fold harder to be a disabled parent,it is harder to get out,hard to be in pain and to keep smiling and hard to fight with the buggy or car seat every day, we regularly fall out with one another! 

Watch this space to read about two Physically disabled parents journey through parenting with our first child. The blog will review high street baby and child equipment that is off the shelf ,easy to use as a parent with creakiness, or requires little or no adaptation. The pros and cons of equipment will be discussed. Every thing from where to buy popper free clothes to how to bath a baby. As a Psychologist I believe play, fun,tranquility in home and books are all good in this child rearing game. Therefore there will be blogs on play when you can't get on the floor and how to have surgery when teaching a child to read! If you are a disabled parent please help build this resource for future parents and comment with your ideas,tips etc. I would really welcome you with a cyber cup of tea x

Art work by Mark Jephcott Copyright 2011