As I have mentioned before I belong to a number of online support groups for parents of children with hemiplegia, epileptics and a local group for parents of ‘inspirational kids’, so I see and share in the types of issues that those parents are facing and if I feel that I have anything, from my own experience as Joshua’s mum, to contribute then I make comments or give reassurance. There are two this week alone that I have experience of and have made comments and have shared in the thread of comments :
One was from a mother who I met at Great Ormond Street ,while Joshua was there in 2014 for his brain surgery, and we have remained Facebook friends ever since. She is now worried as her son’s behaviour has changed since he came off an anti-epileptic drug and she was seeking reassurance, as he was taken off one of his medications post-surgery. However, I was able to tell her that ,while Joshua has never been able to reduce his medication post-surgery, I am well aware of the devasting side effects that these drugs can have, including complete behaviour meltdowns and personality changes. I was also able to support her by reminding her that the surgery has not had a positive outcome for everyone, again hoping to make her feel less isolated. Therefore, as a result, another Facebook friend of hers pointed her, and me, in the direction of another webiste to refer to, that I was previously unaware of.
Last night, a distressed mum explained that her 12 year old son had spent a long time in the school toilets on his own, and the teacher had been concerned that he had been engaging in teenaged self-exploration in there.Evidently, the mother was shocked as she had not seen any signs of this sexual behaviour at home and she felt embarrassed and her husband was going to call the school today. There followed an out-pouring of symapthy and support for this mother, so that by the end of the evening I hope that she did not feel too isolated. Then I shared my surprise when this issue was raised for Joshua several years ago during his annual review as similarly I had not seen any such behaviour at home. Even I found it a really uncomfortable conversation, and one that I never expected to have in my life.
Really there is a real benefit in these support groups as parents feel able to share their experiences, in a confidential environment, with other mums and dads who know exactly what they have gone, or are going, through. It is rare that I know and have met the GOSH mum, but in the main, these are strangers, but they are openly sharing their concerns with other parents in similar situations and it helps us all to feel less isolated and we may pick up useful parenting feedback, as advice is offered in a kind, non-judgemental and supportive way.