We have a wonderful nine year old boy who has spent the last two years being pushed from pillar to post in educational settings. After two years we expected to be given a clear diagnosis following weekly consultations and meetings and assessments. We have been told from the original diagnosis simply needed a rubber stamp from speech and language therapist which was grey and non-committal. My partner has spent the last two years reading and researching nearly every day and night. We have changed the way we manage his behaviour in accordance with published methods. We haven't got it right yet but we are improving. CAMHS have recently completed a 3DI assessment which was hailed as the definitive answer. We have a report that states Atypical Autism is a query and that he has met all areas to qualify for a positive diagnosis for Hyperkinetic Disorder. There are a great of conflicting comments in the body of the report that seem to form an opposite picture to the one we described, at length(over ten hours). Now we are are told that it is not ADHD nor is it ASC but in fact we have to bring in the boundaries and 'grow a pair'. Every book, forum, coffee morning, meeting and professional agree that he shows all the signs of high functioning autism and ADHD yet now the lead professional is doing a U-turn and appears to be going against the 3DI and the findings of everyone's findings previously. It is a matter of behaviour management.
We are constantly beating ourselves up about the way we manage our boy and are now hitting an all time low. We have little faith or confidence in our ability and knowledge as parents after being different things all the time, being shown up meetings with school when professionals contradict weeks of conversation with no warning. We have tried everything we have found to try and support mungo and his two younger siblings. Now we have run out of things to try and CAMHS are blaming Mungo's challenges on our parenting. we need to start re-affirming the boundaries and ensure that he is given the tools to deal with life as any other child his age.
For example recently he has gone without dinner at school on a number of occasions because he is distressed. The most recent occurred when he stepped out of the dinner queue to help a younger child open a yoghurt. He returned to the queue and having lost a couple of places meant that he then missed out on the meal option he was waiting for as they ran out. He then got cross and stormed out of the dinner hall and into the playground. He had set his mind on that dinner option the night before when we told him what he could have. He was upset that because he was actually helping someone it was unfair that he then lost out on dinner. He could not adjust to the alternative and did not eat until he got home, seven hours after breakfast. Today when we asked that he be given an opportunity to eat a packed lunch if occurred again we were told that he would use it as a controlling behaviour. To get mum down and get what he wants. We have stated previously that if he is unhappy or has a melt down he becomes hungry afterwards. If he is wobbling, hunger is a key trigger for full on meltdown and that we felt it was in the best interest of the school staff and pupils as well as Mungo if he were given the opportunity to eat something when he had calmed down sufficiently. Response: This is an example of Mungo trying to control and that all steps should be taken to stop him digging his heels in.
What is the point of attending meetings every week listening and responding, completing reports, giving feedback, informing key people, sharing the bits that that work and those that don't, attending appointments, seminars, courses and all the rest of it if no one actually listens to us? Afterall we're only parents.
