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Not a new member but been gone a while - Carers UK Forum

Not a new member but been gone a while

Tell us a bit about yourself here.
Hello All,

Hope you are all okay.

I have been a member for many many years but I have not been here for a long time so I thought I would re-introduce myself.

I am a parent carer to my son who is now 14yrs old, I myself have bipolar and borderline personality disorder.

I have always put everything into whatever I have done but the last 14 years has certainly tested me in everything that I am. It has been the most difficult, frustrating, worrying, belittling, exhausting, lonely and heart wrenching and soul destroying but not forgetting the most rewarding - at times, most loving - at times, never ending experience of my life.

My son, who after four years of us living in hell, was diagnosed at six years old with, Attention Deficit Hyperactivity Disorder, Oppositional Defiance Disorder, severe behavioural problems and at ten years old was also diagnosed with Learning difficulties, thought processing problems, he also suffers with anxiety issues and still has severe behavioural problems.

I have had very little help or support from any 'professionals', having been denied access to most services, no help or support from family or friends, it has been twelve years of trial and error and a lot of researching through books and the web as well as twelve years of endless fighting with social services, education, police, other services, through letters and meetings as well as verbal confrontations with family, friends, neighbours and the general public.

At present life is pure hell.

My son was medicated immediately he was diagnosed, only 5mg per day of Equasym, which has increased to at present - or until 2 weeks ago, 50mgs x 4 times per day ( totalling 200mgs per day ) of Methylphenadate, which is basically an adults dose. At present he is taking ZERO mgs per day of anything.

His school wanted to see him unmedicated, I personally thought this was a cruel thing to be done to someone who has been medicated for the last eight years,to not do this gradually over time but ALL medications to stop immediately.

That was two weeks ago, the first week being so heart wrenching and soul destroying to see him all over the place and not be able to help him, to the second week where he had become so impossible to control I have contemplated suicide but then my only goal in life is to make sure he is catered for in everyway for when I depart this world, so even if this is what I want, I cannot see it through. I understand why the school wanted this, but I would have thought it would have been done in a more organised and structured way, this lots of experienced help and support for him when things deteriated and became impossible, not as it has been, with only myself having to deal with all that has happened over the past two weeks.

My dread is that he will return to school on Monday and be either excluded or expelled. Another fight and life goes on.

-xxx-
Hello Kim and welcome back :)

I wish I could advise you but I have no experience that would be of any use to you (I cared for my Mum who had Alzheimer's). I do sympathise though with the untenable position that you have been put in and can only hope that when the school see the results of their action they will realise how much harm they have caused.

Surely though the school should not be able to take this kind of action without reference to the medical profession - more especially without reference to your son's doctor who should be the responsible for controlling the dosage of his medication ?
Hi Kim,

I can relate to a fair few of your issues, except it not being with a child. I do agree with Susie and am utterly horrified the school wanted to see your son off his medication!! that must have been horrible for you and your son and I do hope that he is back on his meds now.

Many hugs, kiki xx
Welcome back Kim, it sounds like you've been in a nightmare situation. x x
My son , now 34 has sld and is hyperactive. To me, the school is completely out of order. Make a formal complaint, to me it's misconduct, ver, very serious indeed. Complaint to the Education Departmrnt. In the n
meantime, go and see your son's GP - perhaps he would take up the issue for you, assuming he prescribedcthe medication?
Hi Kim...I was very sad to read your post. It all obviously came from the heart and it seems that you have been battling so hard for so long. I find it incredible that the school could put both of you in this position and can only hope that this request was done with medical supervision. Do they assume that your son doesn't need the medication he has been prescribed? Unbelievable!

Glad that you have found us again after such a long time and please rest assured that we will be here to offer as much support as we can to you.

Bell x
Hi Cheekipixi,

You have a lot to contend with.

The teenage years and hormones can turn the most easy going child into a nightmare, let alone one with pre-existing challenges. I had a hellish time trying to cope with S when his hormones plus newly emerging health problems kicked in, thankfully this is now improving (he's 22.) Like you, no help from so called professionals.

On what grounds do the school have the right to stipulate that he stops his meds?! They are educationalists not medics! I'm also appalled that they wanted this done so suddenly and also whilst he was on school holiday, so you and he had to deal with alone.

Melly1
Hi - I was amazed, reading your post. How did all this come about with the school? Did the medical profession agree? I can't imagine they would. It can sometimes be dangerous to go "cold turkey". I think both of you have been treated unprofessionally. His Dr. shd be informed immediately. If he has a social worker, the same applies. The school sounds unsuitable. I cannot imagine a school which suggests what they did understanding your son's needs. I would complain to the Director of Children + Families at your local council + also copy your complaint to the Chair of that Committee, who'll be a councillor. You can get those details from your Council's website. Also, there's a site called ipsea which is full of advice on all sorts of educational matters which cd be helpful to you. I'm so sorry this has happened but it's important you regain the initiative + sort things out. Good luck with everything.
I'd forgotten about IPSEA. They were brilliant, in the end they helped my son have a one to one support worker for a year, and then I appealed all the way to the secretary of state for education. He told the
LA that their plans were unsuitable, and placed my son in a wonderful school. It was a traumatic period in my life, but well worth the struggle.

e