A blog about parenting a little boy with a rare genetic disorder.
Friday, 2 March 2012
I promise this blog won't just be about me moaning. I am most of the time a very positive, glass half full sort of person. I have long since learnt to accept Max's disability and a lot of the time wouldn't have it any other way. I don't spend time thinking what would Max be like without his chromosome deletion, because he wouldn't be the Max we know and love without it. Max is funny, happy, full of energy and melts my heart on a daily basis. The love, pride and admiration I feel for this little boy is intense. Max has and continues to amaze us with his determination and sense of fun. He has made me appreciate things that before having him I took for granted , his innocence and the pure joy he experiences from everyday things is infectious.
There is a but and that but punctuates our lives on a daily basis. The but is Max's behaviour. This evening we have experienced over an hour of Max hitting, biting ( us and himself), kicking, head butting and attempting to destroy our home. Why? I don't know the answer to " why". Is it behavioural? is it sensory?. How do we stop it? We have had years of input from a behaviour team, a learning disability nurse and a Psychiatrist. We have spent a small fortune on therapy. We have and still do use visual timetables, behaviour charts, time out, rules boundaries. He takes medication to attempt to control it. Things have improved in some ways, eighteen months ago he displayed these behaviours indiscriminately, at school and with carers. Now he saves these outbursts for Richard and I. They are shocking, scary and violent. They leave us and him drained and exhausted. They isolate us and him and at times leave us feeling desperate. It's lonely having a child who attacks himself and others. We are as a family pretty resilient. We try to deal with the crises and move on, but there are days when it feels so bleak and hopeless and I guess this evening is one of those days. We cope by drinking far too much wine and by getting some fantastic support from our carers. We both worry about what will happen if this behaviour continues as he grows older. Currently the pressure on Richard is immense he is the only one who is strong enough to restrain Max, which means he needs to be around almost all of the time.Most of all we both feel for Max , it must feel terrible to feel this intense rage, it's almost like something takes over him, he ends up red in the face and exhausted.I will continue to look for answers and solutions but currently there don't seem to be any that we haven't tried. We just have to hope that as Max's speech improves that he is able to find other ways of expressing himself that doesn't involve violence and self harm.