Remember that song from the 90's "Things can only get better"? Yes I know its a cheesy song but it has become my mantra recently. Let me attempt to explain why……….
As many of you know Jack has struggled with ill mental health for many years, horrendous outbursts and self harm have become a way of life for us for the past six years, and like everything else we have just dealt with it. When you have a child with complex needs there is no plan B, this is your life and to an extent you just get on with it. Of course there is support out there and we are very lucky to have an excellent social worker for Jack, a brilliant school, a school nurse that we all love , fabulous support workers , a really understanding employer and of course our trusted family and friends who are there no matter what. But for the past year things have been bloody hard.
Jack and Lucy have a truly wonderful paediatric psychiatrist who has always been at the end of a phone, she has laughed with us and cried with us. However as Jack was growing up she was limited by clinical governance as to what she could prescribe for Jacks increasingly deteriorating mental health. We waited in anticipation for Jacks 18th birthday when he would transition to adult psychiatry and the medicine that could make a difference. The magical first appointment day arrived, unfortunately I had undergone abdominal surgery and despite my best intentions I was unable to attend, so Ian and our good friend Billy took Jack along, they were told that Jack would be observed over a period of time before any changes were made. I was really disappointed and called the new psychiatrist myself, another appointment was made and Jack was seen again. At this appointment he screamed and shouted and used words that would make a sailor blush, and so began the slow process to change his medication.
Nothing really changed, if anything his behaviour and moods got worse. We were back and forth to appointments for the next five months and all the while we watched our beautiful and precious son become a person that we didn't know. He screamed for hours, he threw heavy furniture around like they were made of matchsticks, he developed an almost super human strength, he screamed for hours, he called us the most unimaginable names, I think he actually invented a few new swear words, and the worst part – he hurt himself. He really hurt himself, blood poured out of his mouth as he repeatedly punched himself in the face, he bit huge chunks out of his arms ( you could literally hear the skin tear) his clothes were often covered in blood. And when this stopped he sobbed for hours. All the while we just kept on going with little sleep, it was relentless.
July 3rd began just like any other day, Jack screamed the place down like he had done recently whilst he was getting ready for school. I went to work as usual but had a horrible sense of foreboding ( call it mothers intuition), at lunchtime Ian called me and told me that I needed to come home as Jack was very unwell and the psychiatrist was on his way to the house. I came home and found an incredibly distressed Jack, within 20 minutes the learning disability nurse arrived shortly followed by the psychiatrist. We were told that Jack needed to be admitted to a psychiatric facility 35 miles away from our home. Ian hastily packed a bag and we travelled to our destination. I really don't remember much about our journey except that Jack was eating crisps, the first thing he had eaten in 24 hours.
We arrived at our destination and were shown in. Ian and I were bundled into an office by a taciturn nurse who didn't introduce themselves, offer us a coffee or tell us anything about the facility. We sat down and he started to take a medical history, I dutifully answered the questions and then became aware that everyone was staring at me whilst a young student nurse proffered a box of NHS tissues. I was crying and I hadn't even realised, I looked down at my top to see that it was soaked with tears – I mean how do you cry that much without noticing? Jack appeared at the window to the office and asked me why I was crying and what was wrong. Of course that made me start to sob, it got worse when the nurse got up and closed the blinds so that we could no longer see Jack. Very quickly the paperwork was completed and we were bundled out of the ward.
I will never as long as I live forget the sound of my baby screaming for me as the ward door was locked behind us. Ever!
I don't remember the journey home. I am told that I vomited in the car park and howled like a wounded animal all the way.
We got home and tried to act like nothing was wrong in front of Lucy, Ian did a much better job than I did. Then came the phonecall to tell us that Jack had tried to leave the ward and had now been sectioned. Neither of us ate or slept that night , we drank endless coffee and chain smoked. The following day we went up as soon as Lucy had gone to school , we found Jack laying on the floor, his hair was a mess and he hadn't been shaved, he was silent apart from asking to come home, his jaw swung wildly like a person who was on a comedown from drugs. The television set droned away in the corner and some clown had decided that playing "Bridge over troubled water" was a good idea. Once again that pesky sobbing started. A well intentioned member of staff said " don't worry love, soon he will settle and not want to go home" and that was precisely the kick up arse that I needed. Crying was helping precisely no one.
When we got home I rang every contact that I had, I sought advice and Ian did the same.
I must state at this point that the outpouring of love and support that we were receiving was simply overwhelming, we couldn't keep up with the 500 odd messages that we had received via social media, the calls, the cards, the flowers, wine and gifts for Jack and Lucy and the various offers of practical and emotional help. The people at my work were also amazing, lots of texts, offers of help and assurances that I need not worry about work and to concentrate on my family.
However our mission was to get Jack to a place where he could come home. The ward was OK but very much like an institution, rigid times set for everything, no stimulation, I heard phrases like "toileting" that I thought had gone out with the Ark, two of the nurses were lovely but the rest were not at all keen on us being there and asking questions. They wouldn't let us see Jacks room until I asked them what they were hiding and mentioned Winterbourne , in a way I wished I hadn't seen it as it was like a prison cell. Jack tried to open the wardrobe to show me where his clothes were and the door was locked, in fact everything there was locked. The first day I sobbed all the way home, the second as far as Bridgend, until after a week I could manage the whole 35 miles without crying at all.
As the week progressed we kept asking questions such as why Jack wasn't allowed a drink because lunch was in 20 minutes ( his top lip was stuck to his teeth he was so thirsty) , we challenged and we fought. Until finally we had a multi disciplinary meeting, Jacks amazing social worker had returned from annual leave early to be there for our family, the wonderful school nurse was there when she really didn't have to be ( I did nearly lose my composure when she produced multiple copies of Jack happy and smiling at the school Christmas party and said "this is the Jack we know and love, lets get him back to that") the two lovely nurses from the learning disability team were also there along with the manger of the mental health team who we had never met until that day. But they all played a blinder. They reinforced the support they could offer Jack and talked about what a loving and supportive family Jack has, I should mention that Lucy didn't notice that Jack was gone for 48 hours. A plan was put in place and for the fist time in nearly a week I felt better.
Jack continued to improve but so desperately wanted to come home, we wanted him home. Then 7 days into his 28 day section we were told the section was being lifted and Jack could be discharged the following day. My wonderful family worked really hard to finish decorating Jacks bedroom ( he had trashed it when he was very unwell) in time for him to come home. I drove up early the following morning and when Jack asked if he could come home it was the best feeling in the world to be telling him yes. We both hugged and cried. We quickly gathered his belongings and I drove us home.
Our baby was finally home.
Things haven't been easy since his discharge from hospital, his medication is still being adjusted, he is incredibly clingy and follows me everywhere, he wont go out unless its with someone he trust implicitly as he is scared he wont be able to come home again.
But we will get there, as D:Ream once said "things can only get better" and I have to believe that.