Setting the above aside, Rudy is a beautiful, happy, intelligent and loving boy. He is very affectionate and kind. Rudy is a big rascal who lives a good carry on. He has a great sense of humour and his smile is worth a thousand words. Rudy is continually described as a lovable rogue.
Rudy was assessed as needing two to three nights respite per month, although this was never guaranteed as historically respite dates were cancelled at short notice.
However, when COVID happened in 2020, things changed forever. The purpose-built respite home Rudy went to (Lindsay House) was repurposed to house children on a residential basis.
Respite is irreplaceable, it's priceless - the ability to do family things such as going out for meals... the chance to recharge batteries, the gift of being able to have a sound night’s sleep... the simple things that people take for granted.
As a family, we have been emotionally, mentally and physically damaged for almost ten years by a litany of failings by the system. The system that has a duty of care to our family to provide adequate support and respite services.
In 2021, we felt compelled to take a Judicial Review (JR) against the Trust due to the ongoing lack of transparency. We were successful with the JR and the SEHSCT was found in breach of its duty of care.
However, the upheaval of taking the JR and the associated stress and anxiety proved pointless. Things have worsened with regards the lack of respite facilities and resources.
Following a spate of serious incidents over the past few years, all of which have been documented with the Trust, crisis point has been recorded several times. I have advised the Disability Social Workers team within the Trust that Rudy and our family are unsafe. Rudy is extremely forceful and strong. He has attacked staff in various environments, causing horrendous injuries. However "they" continue to be reactive as opposed to proactive in their actions. It is a vicious circle of despair.
It is imperative that we receive regular respite to allow us to actually function. We are beaten, bruised and broken.
We want Rudy to remain at home with us for as long as possible, but the sad truth is that, without regular respite, we are running out of time. With regards the future, I despair and worry about the younger children coming through the system. Respite is non-existent which will lead to families not having the ability to cope/ manage/function.
The prevalence of autism is increasing. The Government needs to take immediate action before the unnecessary death of a young person or a struggling parent.
Rudy's daddy John has just had emergency knee surgery, rendering him immobile for six to eight weeks. John drives up to 90 miles per day with Rudy to provide the vestibular sensory input he requires. Therefore I am due to multi task, times ten. Given I still work, this is impossible. As Rudy requires 3:1 support /assistance, I cannot fathom how the Trust thinks this is acceptable.
Sadly, this mirrors a family crisis earlier this year when I was hospitalised due to cervogenical headaches. I required a lumber puncture which involved admission to hospital and an overnight stay. I requested help for John and the boys on Monday to enable me to get the lumber puncture procedure. I received notification on Friday that there was nothing the Trust could offer. At Rudy's next LAC, I reiterated to the Trust that I could have been dead and buried before any acknowledgement that there was no help/support available. Absolutely abhorrent!
