This time last year Jazz had just had her eighteenth birthday. We spent a week in Ibiza where she slept one night out of seven due to her high anxiety.
The anxiety was bought about by her belief, no matter how we reassured her, that she had to “grow up” and manage without me. It was compounded by the fact that she was no longer able to access the therapy we had been receiving for years…our anchor.
The year long transition plan with the local authority had consisted of a few short visits to our house despite the mutil agency meeting conclusion that she had “complex” needs and required intensive transition planning to keep her safe.
When we returned home after our holiday she continued to have sleepless nights and anxiety that caused her to rage and attempt to run out of the house in the middle of the night. On some desperate occasions we called the mental health crisis team and were called to A and E on more than one sad night. Of course they couldn’t help her and the response was to medicate rather than give therapeutic support. This in turn made things worse as the side effects included sleep disturbance and anger.
Thankfully Jazz and I had amazing support in friends who helped us contain the situation in the best way we could.
Despite our understanding of trauma, our training and years of experience we began to feel her slipping away from us.I felt I really couldn’t keep her safe and worried about her coming to harm as she had done in the past during a crisis.
One of them most frightening days of my life was ringing a mental health unit to talk to them about Jazz being admitted. They said her contact with home would be limited and she would not be able to have her security items from home. The reasoning was that she would need to be observed away from the familiar. It was like a nightmare.
I’m so glad now that I went against the feelings of defeat and held on. I fought harder than I have for anything and rang the local authority every day begging for an urgent assessment of our needs. The fact that Jazz was now officially an adult meant I couldn’t be quite as easily fobbed of as I had in the past when asking for support. Despite the fact that an assessment should have been done the year previously and in place for her eighteenth, it eventually came.
I got a phone call two very long months later, when I least expected it, telling me she had been awarded the support she needed to work towards safe independence. I cried with relief. It meant she would be safe within our family. This also meant she could move into the house next door to me and begin to gain confidence away from me. Support workers were to be paid through a Direct Payments scheme funded by Social Care and Health.
Of course that move, even though it was just up a farm track, wasn’t easy. Jazz was terrified but put on such a brave face as she really wanted things to change. As usual with any change, the first few months were “slowly slowly”, a favourite mantra of ours. I visited every day and was in constant phone contact.
A year later and Jazz has just celebrated her nineteenth birthday. She sleeps through the night. She doesn’t need to have someone in the room. She manages her own money and has a far cleaner and more organised house than me. She has trusted others to support her, made new attachments, however wobbly, and has managed some really big challenges like her beloved dog dying.
Things that other families see as small everyday achievements in their teenagers are massive, huge, enormous and brilliant for Jazz. We celebrate the changes in fortune everyday but do feel angry that we didn’t get this support when she was a child. It certainly slowed down her progress and potential in many areas. However we try not to dwell on this as its a familiar story to many parents whose children have special needs.
We are all so proud of her and more than ever convinced that given the right support young people who have experienced trauma and/or have special needs can progress in their lives and not be incarcerated in order to keep them safe.