Our members often find it difficult to get much in terms of support from the various services. We wonder if the following letter, written by a member of POTATO applies to your situation or your professional department?
It certainly struck a chord with many of us in our Facebook group. So much so we have all decided it should be shared in an anonymous form for you all to see.
Dear Decision Makers,
I adopted a child with complex needs, a child I grew to love with all my heart, a child I have fought for, worried over, battled to get support for, a child who has brought me both joy and challenges.
I believe with all my heart that I am the right person to parent my child, now a young person. I believe I have the skills I need and I can cope with most of the challenges his needs throw at me. But my single parent family is unravelling. Why? Not because I do not have the willingness or skills to parent my son, but because it is a serious challenge which cannot be achieved without support. The support we need is not there.
My son has night time continence needs and erratic sleeping patterns. Hence I have erratic sleeping patterns too. Our monthly respite broke down months ago and we were approved instead for respite at a residential unit which would hopefully meet my son’s needs more effectively. There were no vacancies and there will not be any for the foreseeable future. Respite time was the time to catch up on my sleep in order to be able to continue for another month. I have become more and more exhausted. Last week I fell apart at a routine medical appointment, when the medical professional asked me how I was, other than my medical needs. I finished up being diagnosed as completely exhausted. I am still exhausted. Nothing has changed.
When it comes to complex needs my son’s needs are high up the scale. At first glance they do not appear so, but he has attachment and trauma issues, learning difficulties, and sensory modulation problems, all of which can trigger extreme challenging behaviour. His special school have not been able to meet his needs effectively this term, due to changes in staff. This has escalated challenging behaviour at home.
My son has become too old for any holiday care in existence in our county but I need to work. As a single parent working is the only option I have if I want to pay the bills. I like working. However, as of today I can only work half of my hours as we secured direct payments but only managed to recruit a home carer to provide half of the care hours we need.
I tried to access adoption allowance but it was a fruitless attempt. I cannot access support to work and I cannot access support not to work. Our financial future is non viable.
My son has significant and complex needs. He was adopted relatively late in her childhood. He was in traumatic circumstances for many more years than many other children who get adopted. His therapy needs are great. He has been making good progress in therapy but the funding for this is now in jeopardy. Nobody would argue for therapy their family did not need. Most families in this situation would celebrate when their child/young person no longer needed therapy. It is a massive commitment to support your child/young person through that. When it is time to move on and get on with life it is a huge positive step. However, like many parents, I am left feeling like I am asking for something unreasonable. If my son had cancer we would not fund half of a treatment programme and then leave him high and dry, but somehow mental health is less deserving of support.
The only option left on the table is the unthinkable one, the one I do not want to take. I can ask for my child to re-enter the care system or I can struggle on until either the money runs out or I completely break down, whichever comes first. I know that the unthinkable option will destroy us both, and I will go down fighting with the very last breath in my body, but I can see no way ahead unless the support, both practical and financial, is found. The support we need is not there.
By A member of POTATO used with permission, July 2018