Having been initially diagnosed in the January 2015, with Atypical Autism, by CAMHS Tier 4, and having received no support post diagnosis – my family hit crisis point! The daily struggles of trying to manage my daughter’s extreme behaviours, including being physically attacked and daily multiple meltdowns, I felt that I could no longer continue dealing with this on my own. We needed HELP and we need help NOW!
So where to turn to?
Again, given my job at the time I was lucky enough to know of organisations that may have been able to offer support, so I set about contacting them, making referral after referral! Here are a few of the services I tried to reach out to and their response:
- Adult Social Care – they batted this back to Children’s Services, because it involved a child! No consideration was given to my needs
- Short Breaks Scheme – this was no longer running and nor was the SEN Specialist Childminding group. I was signposted to Duty Social Worker for advice
- Short Breaks Scheme Team Leader – no response
- Spectrum – there was nothing we could access due to my daughter’s age. Advice on ‘restraint training’ was provided but when I followed this up it turned out not appropriate for a lone restraint
- Young Carers (for my older daughter) – eligible but no help received, not even when my older daughter text them in crisis
- SIBS Group – only go up to age 16yrs so therefore my daughter was too old
- Care for the Carers – only eligible if caring for a 18yr+
- ASD Monitoring Group – received a leaflet giving details of activity days and confirmation that telephone support was no longer available. Could offer support in school but not in the home
- YoungMinds – eventually spoke to a ‘Specialist Advisor’ but when I outlined our situation, the advisor confirmed that our situation was ‘out of his expertise’
- Children’s Services Disabilities Team – we didn’t meet criteria
- Children’s Services – was told I was doing everything I should be and that respite was not something that they offer!
So now what??!!!
The main reason for my desperation was, I suppose, that I needed respite – I felt I was so out of my depth (struggling to manage/cope with the multiple meltdowns on a daily basis) and I needed a break to enable me to recharge my (very flat) batteries! I was emotionally and physically exhausted!
However, I believe that this was the first time that I truly felt so alone! Every service I had approached, either from those I knew about or had googled, could offer me nothing! How could I be in this position of hitting crisis and there was NOONE that could offer ANY help?
CRISIS, in my experience, is a very dark place and was the first time I questioned ‘is this what true depression feels like?’. Those evenings when my daughter was finally asleep, I would spend hours crying, even rocking in the corner, literally, wondering how our lives had become what it had. But I knew this wasn’t depression, I knew that I was only feeling this way purely because of the situation I was in and dealing with. There were even days when I found myself unable to go to work as I was just an emotional wreck!
Even in the depths of crisis, I knew I had to dig deep and fight even harder for that support. So I kept banging on Children’s Services door by daily calls. Again, due to my employment at this time, I knew that we met their criteria, however it clearly would take more than just me banging on about how we needed support for them to pick us up.
Months went by but Children’s Services EVENTUALLY took notice of us and made the decision to assess! Ultimately it was following yet another referral to them, this time from Autism Sussex. I just so happened to have a home visit from Autism Sussex (when I was sporting my worse injuries to date) to explore, what if anything, they could offer in the way of support and it was then the worker saw first hand the significant bruising on both of my forearms.
At last, I thought, we were FINALLY going to get some help from Children’s Services however, how wrong could I have been?!