Living With EvC

16/3/05

Home
Description
Medical Stuff
Methods of Detection
Genetics
Growth charts
Stories
Photo Gallery
Living With EvC
Video Clips
Links
Glossary
References
Contact Us
About Us

 

Living With EvC

In the support group you will find parents of babies who have had virtually no health problems at all, so their lives are relatively normal. Their children never have to go to hospital except for outpatient appointments to monitor their growth. Then there are others who have had frequent, or long hospital stays due to heart, lung, or orthopaedic problems. We (meaning the entire family) all adapt in time because we have to. It is a difficult, but often rewarding journey.

Once the medical problems, if there are any, are grown out of, kids with EvC usually do very well. There is no need for them not to be active. Like any other children they have their individual personalities, so some will be very sporty, others musical, arty, cerebral, etc. You cannot make blanket generalisations. All I am trying to say is that EvC is only part of them, it doesn't define who they are. Once the medical stuff is out of the way, or in between times, you won't think about EvC or see EvC when you look at your child - you will see them. It can be hard for other people to do this, and wondering how your child and you will cope with this as they grow is a worry. Each child has their own way of dealing with it - humour, explaining/understanding, aggression, introversion, etc. - like everyone else. Personally I hope Angus leans towards the humorous end of the spectrum as he gets older.

As a parent you will naturally feel protective of your child, and can be acutely conscious of people staring. One mother and daughter I know made me laugh because the daughter said she wasn't really aware of the staring until her mother pointed it out! This simply highlights the fact that a lot of things will bother you far more as a parent, than bother your child - so don't point it out unless necessary. The majority of starers aren't even aware that they're doing it. They've simply spotted someone who doesn't look like they expected and they're curious. This doesn't excuse the fact that it's rude, but for the most part it's done without malice, and a gentle smile and wave can be all that's required to bring the fact they've been caught out to their attention. For those who are bold enough to ask the question, "What's wrong with him/her?" a simple, "Nothing. They're wonderful," is good enough. It can be tempting to explain all about EvC, but it really isn't a stranger's business. Aggression doesn't solve anything either, and can give people, and possibly your child, the impression that you are either embarrassed or ashamed of your child and that's awful.

 

Around the House

New parents can worry about needing a lot of adaptations to the house to help their child become more independent. The majority of people I've spoken to say that it's simply not necessary. Lengthening the light pull in the bathroom, providing small steps (you can get cheap ones from Ikea for toddlers) in strategic places, and using a booster seat for longer than you would have done at the dinner table can be all that's required. Angus is 2 1/2 years old at the time of writing this, and we have a small chair that we've trimmed the legs off for him to use in the living room. He has a booster seat on a kitchen chair for any baking activities and to sit at the dinner table. He has a standard seat to use in the bath which we got from ToysRUs, and that's it really. He can climb the stairs up and down. If he wants to wash his hands, we stand him on a kitchen stool and keep an arm round him. As he gets older, he will develop his climbing skills further and will be able to get on and off the sofa by himself. I may buy a Primo Freedom Trainer for him, but you can only get it from the USA which is a pain.

Home | Description | Medical Stuff | Methods of Detection | Genetics | Growth charts | Stories | Photo Gallery | Living With EvC | Video Clips | Links | Glossary | References | Contact Us | About Us

This site was last updated 03/31/09

Kate Lawrence (BscHons Physiotherapy) 2005