After the recent Panorama episode- Kids In Crisis highlighting the failures of the mental health system for our children and showing the heartbreak so many families suffer as a result, I can’t help but feel grateful that we, so far seem to have been lucky on our journey in getting a diagnosis so young for Ethan.
As yet we have not been involved with CAMHS but when we inevitably do need their services, will they be there and will any of us get the level of support and help that we may need?
Watching how far into depression and despair these children and families had been forced into, purely due to the lack of understanding or available support was heartbreaking and has made me worry for my sons future and realise how much needs to change for the benefit of all of our children.
Our experience so far has been very positive and I really hope this continues. It has been almost three years now since the first steps were taken to help us and below is a brief timeline of why it has been a positive experience for us so far:
1) Incredibly understanding and helpful nursery staff didn’t just judge my son and us as parents, they wanted to help by getting early years advisory involved to give advise to us all
2) Early years lady didn’t judge my son or us as parents, she assessed with an open mind and listened to us and staff, allowing her to see that there was more to it than a naughty child or lack of discipline
3) Forward thinking by Early years lady meant that she chose to send off the referral for a paediatric assessment before he was old enough to usually be accepted, as she knew by the time he got to the top of the list (18 week waiting list in 2016, much longer now I suspect!), he would be coming up to three years old
4) A diagnosis of Autism Spectrum Disorder from the paediatrician at his first assessment gave us some answers about his behaviours and many more questions to research, leading us to learn ways to help Ethan and our family as a whole
5) Open minded school staff who are willing to read the information I provide about Pathological Demand Avoidance and use the strategies suggested because they trust that I know my son best and know what works
6) A school who are applying for an Education, Health and Care Plan (EHC Plan or EHCP) for my son themselves because they can see that he will need that extra support and want to be proactive in supporting him and us
7) Even though our paediatrician is unable to give a formal PDA diagnosis, she is keen to write a report based around his demand avoidance and anxiety so that it is there for any future issues that arise
We are only at the beginning of our journey and I know that there may be much tougher times ahead in the future as my boy grows, changes and the demands naturally grow in everyday life but hopefully the system wont then let us down when we need it most
There needs to be change, funding and education for those who should be there to help children and parents, rather than to make life more complicated and difficult for them
I, like so many others find comfort in reading blogs and social media posts from others in a similar situation to our family and there are many Facebook support groups who welcome new members and are always willing to offer support and advise
Lastly, I would like to say a quick thank you to everyone who has opted to follow my little blog, it means an awful lot to me to know that I can be another voice to spread awareness
Also a big thank you to https://notesonpda.wordpress.com, http://www.stephstwogirls.co.uk/ and https://www.pdasociety.org.uk for their recent help and advise about various things involving blogs, appointments and training!