‘Put up or Shut up’ – I am no good at this biting my tongue malarkey.

Well, it has been a while since I posted as life has just been getting in the way. I think it was John Lennon who said something along the lines of ‘ Life is what happens when you are busy making other plans.’ I am so with him on this one.

It has been half term this last week and it has been lovely having my little ones together and we have had some lovely times. I think alot of this is thanks to the fact that I created a visual timetable for J 2-3 weeks before half term and he has known it was coming and we have talked about it and planned things to do all together, so there has been little anxiety for him which is just lovely. However, J has been really poorly this week. High temp., vomiting, listless, lethargic, very clingy. His temp refused to come down so we ended up in A and E and narrowly missed a stay on the children’s ward ( his temperature came down a notch, after yet more meds.) I am so glad we could come home… my poor boy would have not handled a hospital stay at all well, no matter how poorly. He is now, VERY slowly on the mend but  left weak and exhausted and he went horse riding yesterday ( his favourite pastime in the world) and I had to stop his lesson as he just looked so pale and he was not his usual smiley self.

I has a tough start to the week too. I went for the results for my 2nd blood test to the GP, regarding my joint pain and I have now been referred to a rheumatologist as once again I have shown blood results consistent with arthritis…. not sure of what type yet… so will know more in December when I have my 1st appointment. I am worried, some days the pain is so bad and I have only ibuprofen to take and sometimes it doesn’t help at all and I could literally cry and I have a high pain threshold , believe me.

My biggest concern is getting j to school- it is 2 and a half miles away,I don’t drive, no direct bus route, can’t afford taxis all the time and I normally take M in a buggy and let J ride on the back when tired ( thanks goodness for the strength of Pliko pramettes!) If I had had a crystal ball and known about J’s ASD and that my health would be suffering too…. I never would have sent my boy to the school he is at now. But now I just have to deal with it and it is a big concern as I am not hugely happy with J’s support at school anyway or their understanding or even their ability to do what they say will do and then i am struggling to get him there too… ack what a mess:( I did look at another school, but it just didn’t ‘feel right..’ Yes I am picky…. because i do not want for j to go through the stress of changing schools to receive the same lack of support whilst dealing with the change, so the school has got to be right or it is simply a case of ‘ better the devil you know.’ I have been criticised on a forum as my son is receiving more support than some other children and a particular lady said in her area alot of money has been thrown at AS. Firstly, I’d like to move to her area and 2ndly I was not playing th ‘ my child is worse off, no my child is game’…. I wish there was more money going in to SEN across the board. Anyway, the basic message was… ‘put up or shut up’…. i.e. I should be happy with any crumbs thrown in my son’s direction. But I am not very good at this. My son is not receiving the support he needs, I am not being listened to, professionals are not doing what they say they will do or even contacting me regarding observations on my son…… and I am meant to accept this and be grateful into the bargain? How can that be right for my son’s sake? Yes, there is little funding, yes professional services are overstretched etc etc but alot of my ‘ bones of contention’ come down to common courtesy. If you say you are going to observe my son and will contact me to discuss the observation…. please do so. If you say you will make an effort to say good morning to my son to help him with greetings- please don’t ignore him constantly every morning. None of these such things take much time, effort or funding. I am sure it will be written on my notes for my son ‘ PITA’ ( pain in the …) but , so be it. I am not out to make friends just to merely get the support my son needs and deserves. I don’t want to make any enemies either… but I can see this is going to be unavoidable as I am not going to sit back and accept this ‘ put up or shut up’ attitude.


2 Comments (+add yours?)

  1. Deb at aspieinthefamily
    Oct 30, 2011 @ 11:35:20

    Hi, I was wondering how you were doing. Sorry to hear your son has been so poorly and that you are also unwell. My mum had a form of arthritis which was very painful and disabling but the type she had was brought under control with medication (steroids) and she is now a lot more active. Hopefully, you’ll also be able to find some relief.

    I understand what you’re saying about resources for SEN; in my area there is not enough services to go round and there is tension between families and different disabilities. As a mum of older ASD children I get nothing and I’m left to deal with my son’s mental health issues alone (and my daughters aspergers too). But though I get nothing, I would never deny those who do get something; its the Government & authorities that I hate, for their treatment of families dealing with disability and SEN.

    However, like you I’m not going to put up with my children been treated badly and I will continue to fight for their inclusion in society. Unfortunately that has meant I’m not very popular with some professionals and some other parents but I don’t care any more because my first responsibility is to my children. If I don’t advocate for them, then who does?

    Im sorry to hear you’ve been criticised by others. I find it sad when this happens and can only suggest you ignore them and find the people that will support you and there are people out there who understand all what you are going through.

    Deb x

    PS sorry for the mini rant here.


  2. highlanddream
    Oct 30, 2011 @ 14:52:37

    Thanks for your message Deb, I always appreciate your comments. Like you, I will always keep fighting for my children. I never want to look back and think to myself, ” if only I had pushed a bit harder, tried a bit more, attempted a different approach etc” Some days I feel like waving the white flag and then I find my motivation again and I get back on my war horse and head back into the battle….. just like so many other parents do.

    I am pleased to hear your own mum’s arthritis has been helped with medication. I have to keep active as I have no chance of ‘ an easy day.’I am hoping that my own health can be helped with meds as soon as possible…. not only for the pain but i am costing us a fortune with all the things I am dropping (!) ( I shouldn’t joke but I have to keep a sense of humour about it all) and my sense of frustration at struggling helping my boy get his shoes on or do my daughter’s hair or even turn on the tap is getting to me as much if not more than the pain.

    I always feel for you and your family and I do hope your son’s mental health is improving and he is moving towards a better place in his mind and that your daughter is receiving some support appropriate to her needs.

    It is easy to read and hear about the lack of support for families with children with additional needs but no-one knows what it is truly like until they experience it first hand. It is the powerlessness that I find the most difficult feeling to contend with.

    very best wishes to you and yours. Take care,

    Beth x


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N.B. the title of this blog comes from my son’s very literal understanding of ‘ magic carpet ride’ ….. he believes this to be a ‘car pit’ ( as in ‘ sand pit’) and demonstrates this with a plastic lid and toy car. The magic comes in when the toy car is covered with the lid and it disappears!

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