My name's Kate and I'm a Navigate adviser. Navigate is a National service for parents who have a child who is going through diagnosis, or has received a diagnosis of a disability, or acquired an impairment, in the last 12 months. Parents will be able to receive a 6-week period of emotional and practical support from an experienced Navigate adviser.
I’ve got 2 daughters, one is eighteen and one is fourteen. My eldest daughter, Eve, has got cerebral palsy and epilepsy.
Eve was born prematurely at 31 weeks, and needed special care for 17 days. We had a number of follow up appointments, but nobody ever mentioned cerebral palsy. It wasn’t until she was 20 months that we finally got a diagnosis. In these early years, it was very difficult. I had this overwhelming feeling of guilt for many years.
It was that thing of nobody listening to you which made it hard to manage. You’re thrown into this world and I just didn’t have a clue. It was quite a scary time. It’s taken many years to get the support we needed. Most of this support has come from parents of other disabled children, many I met by joining an online forum on Scope’s website about 16 and a half years ago.
Once you see that there are other people going through the same thing as you, you really tend to open up with each other. Although some of us have never actually met face to face, they’re actually the first people I go to when I need support.
I think this is why Scope’s Navigate service could be so invaluable to many parents in the same situation.
Becoming a Navigate adviser
I was doing an interview search, looking for new roles that were out there, and an advert for a Navigate adviser popped up. When I looked at the job description, I thought, “wow, that could have been written for me!”.
It’s exactly the service that parents need when they’re going through the diagnosis period and after. I want to support people who are in the same situation that I was in all those years ago. I’ll be able to tell them that it’s not all doom and gloom, but wonderful in equal measure.
People can feel like they’re drowning around that time, surrounded by professionals who are trying to fit your child into a mainstream society, to fix them. I want to be there to let people know that it’s not about what your child can’t do, there are plenty of things that they can.
The support Navigate can offer parents
Keeping it all inside doesn’t do anything for your emotional wellbeing. Talking about your situation is going to help in the long run and it’ll help you get the support that you actually need as an individual.
Navigate will be able to give people the information that they need to move forward. When you have a disabled child, you have to manage it. There’s nobody else going to come in and do that for you. So, if somebody gives you those tools, and those things that make it that bit easier, you’re half way there. I think that it’s really important to teach those parents, that, okay, I can’t do all of these things for you, but I can show you where to go and what to do. I think that’s what the invaluable bit of this service will be.
This is a service that has been very much needed for such a long period. There’s no support in place whatsoever. If Navigate wasn’t there, these parents wouldn’t have anybody to talk to.