Yesterday was the first time Faith met the psychologist, I was very nervous prior to the appointment not really knowing what to expect. I’d explained to Faith that she was going to meet two ladies, who wanted to talk to her and play some games. She had accepted this on the way to school and kissed me good bye. The appointment was for 2:30 meaning I had to pick her up early from school, and she was not happy with this, crying as soon as she saw me and telling me to go away. I explained again where we were going and why I was early, but she had a face like thunder all the way to the car. I hoped this episode might continue into the clinic, so they could see an episode for themselves, but no such luck. We were in the car awhile due to traffic and she fell asleep, so woke a happier little girl.
When we entered the clinic, the ladies met us and took us into a big play room, where paints and paper were already out for Faith. I initially sat with her at the table, but I could see that one of the ladies had sat further away from the table with a chair for me to join her. I waited till Faith had settled enough to pick up a paintbrush and slowly walked over to join the other lady. Faith very politely carried out the task she was given of painting a family picture and talking about each member as she did.
She never actually relaxed though, constantly smiling and looking over to me for reassurance and playing with her hair. The lady had picked up on this and noted that even though she was smiling it was obvious that she was very uncomfortable in her surroundings. She went on to talk to me about the week we had had with Faith. Which hadn’t been the best (again), I stated that I was unsure about the quiet time/time out as I felt concerned and worried for Faith’s safety when this was happening due to her biting or scratching herself. She agreed that maybe we needed to adjust this a bit and an adult actually offer to stay in the room with her, explaining you were doing it so if she needed you, you were there for her. She emphasized that she realised that each episode was different and at times this may not be possible if she was being aggressive towards you and screaming for you to leave her alone. But on typing this I’m thinking maybe, at these times she would accept a different person in the room with her. ?? Who knows?
All this uncertainty makes me think back through our whole journey so far, and how medical professionals, who do not understand HH have come out with some terrible explanations or so called solutions. Over the years I have been told everything including from: that the lump in Faith’s head is just a dead piece of skin and people live and die with them and never have any problems to being told after a scan when I was pregnant that my baby’s facial features were deformed and she had no fingers or toes. When she was a baby have frequent seizures, I was told over the phone they were baby movements and to stop worrying.
So as Katherine stated medical professionals do make mistakes and some are reluctant to admit when they don’t know and so they will make harsh comments. As a medical professional myself, I was always taught in my training that the parents know their child best and to follow their lead. This is so true for families who have children with any kind of disability as we are living it day in and day out. When Faith was a baby, I actually had a nurse say this to a doctor in A&E resus, when he tried to tell me she wasn’t having a seizure, even though I was telling him (screaming at him) that she had been doing this now for 30 minutes and he wouldn’t do anything. We are the best advocates for our children.