I have been trying to sleep, even just for a few hours this evening, but all I could do was think, think, think.
So I thought; blog it and get it out of my mind. That's a problem for me-thinking too much and over-analysing events and potential events.
The first thing rumbling around my head is DS's new school. I already told the teacher and assistant to spend up the acquisition of a transfer bundle, and soon after that the visit. This is because DS is already fixating on the school and the 'what ifs' [what a little chip off the old block, huh?] and because when I spoke to the epilepsy nurse[EN] he stated that the neurologist has already been informed about DS, so he may be brought in for tests before the end of the school year.
Which gets my onto the number two thing rumbling around my head. Does DS potentially have ring chromosome 20 syndrome? A lot of things fit- the 'tourettes' could be myclonic jerks and the inattentiveness could be absence seizures as well as his focal seizures which turn into tonic clonic seizures?
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The EN did say it hadn't been considered before because it is so rare, but that I should bring it up with the Neurologist [neuro]. He fits the pattern of odd behaviours and psychiatric issues being investigated which is common in this syndrome.
Then what becomes of him? The traditional brain surgeries don't work well on that syndrome, but there has been some success with the VNS. But with such a small pool of people living with this syndrome it is hard to get my questions answered.
Will he develop abnormally behaviourally/mental health wise if the seizures are controlled? Will he live independently or in supported living? Will he develop appropriate adult relationships? Will he have children? Will he be mentally strong enough to deal with his issues of gender confusion?
My personal preference, right now, is for him to move out when he finishes whatever schooling he can, into supported living. M and P are against that, M having worked in one of those places, and they have offered to have him stay at their house, but to be honest, I believe that all children, disabled or otherwise deserve an adult life free of the constraints of living with family, and I am sick of them sticking their noses in- they would take over his treatment, and knowing them, get rid of every piece of progress to suit their world view that illness only happens to other people. I want my DS in a place that acknowledges his issues, allows him to follow a treatment plan that *I* devise with the doctors and where he is independent enough, without risking safety. I know, 10-13yrs before that occurs but, I like to be prepared.
Another point I have been wondering, is, with the PCOS, and excess weight, and general repulsiveness to most people, will I ever get to have another child? If so, would it need to be an IVF thing where they genetically test the embryo for syndromes etc? Or would I, could I, have another child like DS? Will I ever even manage to have another relationship? Or am I doomed to become the woman with fifteen cats and no hair brush?
I have also been considering some issues I need to raise with the social worker [SW] with her boss present at one of my DS's never ending review meetings:
1. I want to raise the issue of TD. Which is a parental assessment unit based on behaviourism. Now, DS's consultant psychiatrist and epilepsy consultant believe my DS's issues are 'emotionally based' not 'behaviourally based'. How is removing my son and I from our home, support systems, life and more importantly the daily stressors, meant to help them assess my 'parenting style' especially since the issue lies within DS's emotional responses?
S: My suggestion is that we can do one of two things- follow up on a new respite fosterer, which I agreed to the last time [no, SW I did NOT say I didn't want that to happen.] and if you wish to see how I interact with my son in a parental capacity- install cameras in my home. Go ahead. I have nothing to hide, and you will get a more accurate picture of our lives.
2. I wish to raise the issue of SW asking ME to explain about a medical procedure that I was SUPPOSED to be hearing about from her. It was very poor practise, and left me with more questions than answers.
S: My suggestion is that she perhaps brings a Dictaphone to the meetings, or would bring detailed notes, preferably sooner, rather than later. As all it does is cause a state of panic to know the 'professionals' are having a meeting at which I am not able to attend. Do not worry about using 'big words', I am not as dumb as I look and if needed I can look those 'scary' words up in a medical dictionary.
3. I would like to raise how unsupportive and lacking in understanding SW can be. When you turn up for a visit and it is obviously a day for a meltdown please understand that certain things will make the situation worse. When I go to restrain DS, asking 'aren't you going to stop him?' is not helpful. When I AM restraining him, and he is grabbing random items/throwing them, saying 'aren't you going to tidy that up?' is also unhelpful. And when leaving after seeing my child in full outburst mode, requiring one to one intervention throughout every SECOND of your stay, telling me that 'you really need to tidy up.' is most unhelpful.
S. I have several suggestions in this case. If you need to impart important information, [even if you admit you didn't understand it] and the child is having a meltdown, perhaps removing yourself from the situation would be better. Maybe make an appointment to see the mother when the child is in school. If the child is obviously acting up, please do NOT murmur 'good boy, be a good boy and help mummy' over and over again. Firstly DS has a gender issue, and being called a boy infuriates him more, therefore you fed into the temper. Don't praise a child when they are having a meltdown- this is providing a positive response for a negative action and confuses DS. And finally, if you don't understand what the drs meant when they said they are unsure as to how much of the behaviour is related to epilepsy, then HOW can you recommend me for a behaviourally based program at TD? His whole problem may be based upon an organic problem and yet you still choose to prefer to believe it is my fault. This feels very unfair and I believe it to be untrue.
I believe that what I need for DS at the moment is as follows; a medication to reduce the level of domestic violence/destruction I experience at the hands of DS every day and melatonin to allow him to sleep more than a few hours a night.
Following his banning from the evening clubs I organized due to erratic behaviour/violence; I am suggesting that he attends AFC four full days, and one half day a week to ensure he has a friendship group and also to prepare him to return to school fulltime whenever he begins at CW. It should be easier to maintain the household with him out of the house more than a maximum of three hours daily. I would appreciate if they could help with funding with this but I'm not holding my breath. I could also use the time to prepare for my return to education in september.
I am going to keep mood/seizure diaries for DS again from monday to help the neurologist.
I also plan to do a grand clear out tomorrow of everything from towels to books to clothes. This house has too much junk in it and it makes it very difficult to clean. I will also get my decorating/updating the house plan sorted out in the evening as I want to make this home a jewel in my crown. Those are my targets for tomorrow and I WILL fulfil them.
My target for tonight is to sleep before midnight.
I think you most definitely need a new social worker. She or he clearly doesn't have the relevant experience to help support you and your wee bubble. He needs the best help in order for his issues to not affect his education and social growth any more than is necessary, and this SW is failing on that front.
ReplyDeleteHave you tried showing the video you have of getting him ready for school in the morning? I think that video tells of his behaviour being separate from your parenting method. I can't say I'm a parent (I'm infertile due to Turner Syndrome), but I have a good head on my shoulders and can safely say that you did nothing to encourage or cause his upset, and you stayed level and firm throughout without using any wording that would make him feel under attack or blame.
I hear parents calling their children all sorts for much milder "bad" behaviour, yet no SW makes those parents feel inadequate. I think with that kind of "support", it is little wonder that you can't see the worth of yourself.
The bit that really saddens me is that he kept asking you for medicine to make him be like a normal child. If that isn't a clear indicator that he doesn't feel like he is the same as everyone else, I don't now what is. What more evidence do they need than a little boy knowing that his behaviour isn't like that displayed by others?
Thank you, and I am glad you saw the video... it showed a lot of his struggle. I WILL be bringing up the points I mention in later posts up at his case conference in June. I am prepared!
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