Tragic News

I read about a heartbreaking news story yesterday: A mother was in court in Ireland for smothering her toddler daughter to death after receiving her diagnosis of autism. The Mother was found to have a mental health issue so claimed diminished responsibility, as apparently she had believed that the diagnosis was worse than ‘mild autism’. So in her confused state, she must have thought that her daughter would be better off dead than autistic, which is a heart-breaking conclusion to reach. The spectrum is so broad, but perhaps that was not explained to her when she received the diagnosis, so perhaps all she could see were problems ahead for her daughter.

Even when Joshua had his diagnosis of ‘devastating brain damage’ at 4 days old, we never once thought that he would be better off dead than living with his disabilities. We have instead ,always fought for him to have the best opportunities in life by, for instance, sending him to a special school where they can meet his needs and even putting him through brain surgery, in the hope of getting rid of the demon epilepsy/ We were of course shocked to learn of Joshua’s brain damage, but we still wanted him to have the best quality of life that he can have. He is such a happy. smiling young man now that I am reassured that he does enjoy a good quality of life and he is starting to assert himself more, insisting on doing what he wants to do and refusing to do what does not appeal to him.

I wonder though if this mother was worried about the impact of the autism diagnosis on her own life too, not just her daughter’s. Perhaps she was afraid of the prospect of a lifetime of caring responsibility and could not face that life for herself. I can understand that fear, as it is a huge life-changing commitment and if she felt unsupported in that by family, friends and professionals, then perhaps that was simply too much to bear for her. I would like to think that health and social care professionals rallied around her to reassure her about the assistance that is available for her and her daughter, as it can feel a very isolating experience; you can feel as though you are the only one with a  baby like this and that can be overwhelming.

I am simply trying to understand what horrors this mother felt to lead her to want to take her own daughter’s life and whether or not there was more that could have been done to help her to come to terms with the news and to equip her with the armour that she was going to need going forward. I am not saying that their life was going to be easy, but she could have been shown a more positive, hopeful future than she was imagining when she picked up that pillow.

 

School Days

I spent all of my day off in Joshua’s school yesterday: it was our parent coffee morning first, which I really enjoyed as everyone stayed all morning and we had some good conversations. We heard what a tough time a number of families had been having and that, for many, there was relief to leave February behind and begin March with new hope. We have no solutions there, but we do have sympathetic, empathetic ears and there was a sense of mutual support yesterday.

In the afternoon, I had a meeting in school with someone from school who is helping with transition, the manager of the new adult respite provision that we have chosen, our current adult social worker and our new social worker from Health, as apparently we will have two for a while! I did not even know that Health had social workers so that was confusing in the first place, but she has been allocated to us as Joshua will be funded by Health in the future. So she and the manager were there to learn more about Joshua, and the other three of us were happy to provide that background information. I was pleased when at the end of the meeting, the new social worker asked if she could meet him so that she knew who she was talking about, that was really encouraging.

As it was 3 pm, I had agreed to drive him home rather than his usual taxi, so I took her upstairs to 6th form. We found him sitting on the settee in his classroom; he spotted me and leapt up and ran across the classroom for a bear hug, eyeing the social worker next to me with some suspicion. He beamed and when I told him that I had come to take him home, he dashed to the doors and began to kick them to get out. I brought him back to gather his belongings and I distributed the leftover baking from the morning  to the staff and then we walked out together, with Joshua pushing his own wheelchair away.We had only sneaked out about 5 minutes early, but Joshua seemed delighted to be coming home and the Health Social Worker was able to see a happy, animated, loving young man and she even witnessed the door kicking that she had just been told about.

I approved that she had asked to see him as so often, professionals decide the fate of cases on paper only and they have never even met the child. I recall when we went to Tribunal in order to get a place at his current school, I printed off my favourite photograph of him and we had a laminated A4 image of Joshua sitting in front of us while we were talking, just as a reminder that this was an individual with a smile, freckles and twinkling blue eyes, not just  an anonymous case in a long day of hearings. I am not sure if it helped anyone else, but I felt as though he was being represented there.So it was a good day at school and it felt like another big step in Joshua’s future, a step away from school towards his adult life, but a step that I felt supported in by professionals who have his, and our, best interests at heart.