21. Sep, 2018


 Transition to Adult Services. 

It's stressful. Its ambiguous.

Our children when they grow into young adults, their needs and the help needed doesn't go away because they reach 18 years of age.

Others step into your home for an instant and deem to know all about you. The person you have cared for and been a parent to gets questioned and torn apart. Its unnecessary and it's awful. Frameworks and tick boxes don't work. We are the parent/carer how dare others say to me and report that I'm an 'over protective parent' We do our best. We keep our children and young adult safe.

I concentrate to much in medical matters.

Well yes of course.The health and welfare go together. Walk in my shoes! Get inside my head for 24 hours! 

We've managed to cope all these years. My son needs help with welfare and financial matters. Who are they to tell you that I'm making him less independent and that he can cope.

It's a big bad world out there. You're making my son vulnerable in the community. I'm flabbergasted at the attitudes of so called professionally qualified individuals on their first impressions on issues that we've endured for 18 years. Questioning medical diagnosis. How can someone possibly raise a decent correct interpretation of someone's medical needs and welfare needs when less than an hour in your home.

Nobody sees the seizures!

Of course nobody will see the seizures. In first instance not all seizures are seen. His seizures are nocturnal and happen early morning. Because not seen doesn't mean they are not there. How wrong can someone be!

Let's be totally clear here.

What changes from the care we give from Paediatric to Adult Services?

Why would you suddenly not realise and help with continuing independence?

Humiliating and demeaning the parent/carer is totally unacceptable and full of inaccuracies.

My son's health & support needs will always be lifelong.

Others are making a fundamental mistake underestimating my continuing support for my son. Everyone has the right to live independently. Everyone has the right to live safely and not be vulnerable in the community. Everyone deserves to feel safe and secure in the environment. Some people just don't know enough about Epilepsy and other contraindications. 

Who do they think got him to his potential with more to give. Fighting against adversity for the past 18 years. Some others need to live and learn. Take on board nothing is black and white. There are many grey areas in an often overlooked and complex life.