Tag Archives: special needs

Cognac & Cigars

So I haven’t actually written much since I started my blog many moons ago due to the stresses of life and the joy of dealing with chronic pain and fatigue.

I sit staring at the screen wondering how I can tell people what living with chronic pain is like but it’s impossible to explain to anyone who hasn’t gone through it themselves.  I know certain people in my life including some family members think that I enjoy sitting at home watching day time TV with my feet up using the excuse of pain as to why I don’t work, although I am allowed some dispensation as I also care for my son!

In fact it has been banded about that I like to sit on my arse drinking Cognac, smoking on a fat Cuban, watching the delights of day time TV, whilst they flog their guts out at work paying for me to do just that!   I personally don’t see what’s wrong with that myself, I just wish it was true and that I had the sort of money to afford to do it but fair play to the people that do and can!                                                                                                                                        They just don’t get it but then they wouldn’t because, and this is my mantra, they don’t get it unless they have lived it, and as they haven’t then they won’t understand.                           I actually had my brother-in-law tell me one day, over a few to many cocktails,  how much he wishes he had my life.  I nearly fell on the floor but instead burst into tears and told him, if he really knew what my life was like he wouldn’t be wishing he could live it and that it was me wishing I had the life he and my brother does, with no money worries, a fantastic job that takes him all over the world,  no ill health or a ill child to support and look after and no real support to help me!!!   He just couldn’t see it, even after I pointed out about my pain my illness causes, the depression, the overwhelming anxiety and fear coping as a single mum and with a child with special needs and twins at that, but he insisted he would and that was nothing compared to his stressful life!

I think my last words to him, as I stumbled to the toilet trying not to cry with sheer frustration, were “If only you could live a week in my shoes then we’ll see if you’d still want to be me!”  The subject was rapidly changed when I reappeared and funnily the Cognac came out, but you get my point about people not understanding what it’s like to life with chronic pain and a child with Special Needs, they think we have it easy compared to someone who is working!

I did have a good snigger recently though, as he and my brother had my boys stay for several days, they normally only have his brother,  and  boy did they struggled dealing with 2 grumpy teenage boys, getting them up early in the mornings, special diets, meltdowns and a child that is totally random and struggles with everyday life they so take for granted!  Welcome to a world of Autism  and Special Needs boys, still want to be me?  Hahahaha

Lets just say I think they finally realised it’s not so easy when it comes to a child that has different needs, that maybe I wasn’t exaggerating about my son’s needs and isn’t as easy to deal with, as it probably is when they have his “normal” brother to stay!

I always live in hope though, I suppose that’s what keeps me slightly sane!

Ta ta for now x







Tears of joy, courtesy of a vibrating gadget!

Hi honestly don’t know where the weeks are going, they just seem to fly by and before you know it another month has disappeared!  I wanted to blog every week with a witty repertoire of my life, my kids and what has befallen us each week, to the delight of my, I’d like to say many readers but I’m quite at that level yet, fellow bloggers but today is the first chance I have had to sit down and manage to blog!  To be honest I’m not even sure I’m doing it right and following the correct bloggers etiquette, if there is such a thing!   I mean are you mean’t to write about your life in a witty way to catch the readers attention, so they in turn will follow you or do you just write from the heart and be damned if there are no funny moments or witticisms to enthrall your readers an.d hope they “get you”?  I didn’t realise blogging could be so difficult or maybe it’s just me making it difficult, I just don’t know, so maybe I’ll try a little of both and see what happens!

Now if you have read my previous blogs you would have come across the saga of the blood test situation with my son.  He has a major phobia of needles and so far nothing has worked.  I say nothing has worked so far, but I may of finally cracked it.     Yes, we finally managed a blood test with no tears, tantrums or extra grey hairs on my head from the stress, although I will admit to feeling sick with apprehension all day praying he wouldn’t go into a meltdown on me as I was on my own this time.  This was a MAJOR acheivement and I am so very proud of him!

So the plan was don’t tell him he had one, use a gadget called Buzzy, highly recommend it if your child has to have lots of injections or blood tests, and a lot of fingers and toes crossed that it would work and it did!  We had a small tantrum in the car, once he discovered where he was going, but I had a chat with him and pointed out everything I had put in place to help him and that this time we would be using Buzzy and it should really help with the pain etc.. I also think telling him how guilty it made me feel when he had a melt down, may of also helped a tad.  Yes it maybe classed as emotional blackmail but believe me when you have to drag your kid kicking and screaming into a room every time he needs a blood test, you will try ANYTHING to try and stop that happening again!

So after warning the staff what he can be like, he walks in, sits on my lap without a murmur.  At this point I’m holding my breath waiting for the inevitable “please don’t make me do this” tearful cry but no, still not a word.  I’m now feeling slightly hopeful we will come out of this unscathed but I’m still getting ready to grab him in case he does a runner.  Out come Buzzy and its placed on his arm and still he is fine.  Now Buzzy is a small Bee that vibrates and has wings that are a small ice pack. The wings are slotted into Buzzy then its placed on the area where the needle goes in and is switched on and starts to vibrate, this numbs the area and alerts the nerves. Just as the needle goes in Buzzy is moved up the arm, still vibrating so then the nerves become confused and adjusts the pain levels so the child isn’t meant to feel anything as the needle goes in and the blood is taken. 

Well it worked amazingly well and it was all done and dusted in seconds.   I think I sat there for several minutes not quite comprehending what had just happened and nor could the nurse who had witnessed my son’s meltdowns, many times before!  Even the phlebotomist asked me what I had said to him before he went in to make him so calm! hahahaha

My son’s reaction?  ” Wow mum that was the quickest blood test ever!”  I didn’t know whether to laugh or cry when I replied “well you didn’t do your usual meltdown down, so the bloods could be taken quickly.”   ” Yeah” he replied ” there’s nothing to it really, but Buzzy was funny though, made my arm tingle.”  All I could see was a very puzzled Plebotomist, wondering where this demon child was that she had be pre-warned about.  I didn’t know whether to hug him or throttle him for making me look like some crazed mother who was demonising her child, when in fact he was a perfect Angel.

But all in all, I was a very proud mummy and could kiss the makers of Buzzy for stopping me going any further grey when the words blood tests are mentioned! curtesy


Stop the ride I wanna get off!

I’m not quite sure where to begin as the weeks just seem to be racing by and so much has happened, what with a family wedding, my son fitted with a block brace and being nothing but ill since he has had it, an x-ray to discover he has scoliosis, a blood test and a part in the school play!

So first things first, I think I  left you last with the blood test saga, which ended up with my mother and I having to half carry, half drag my son into the room, with me holding him down in the chair whilst sat on my lap!!  Luckily I did have the foresight to go in and warn them that at some point I may have to become angry and shout at him loudly to get him to calm down as sometimes it’s the only way to get through to him, as his fear just blocks out everything else.  The problem is when I have to do that in the past,  I then got treated as an uncaring, nasty mum, who obviously has no compassion for her son.  Although now they know me, so i don’t get the “LOOK” but if i’ts a new nurse I do have to pre-warn them, so my son isn’t, discreetly, slipped the number to Child Line when we come out!

They then decided to tell me that as he’s 13 they want him to go over to the adult phlebotomy unit for future tests. I laughed hysterically, before sobbing and clinging desperately to the staff nurses arm, “You cannot be serious?  Did you not just witness what happened back there?”

Well can you imagine the scene?  A room full of adults waiting for a blood test when suddenly they see a screaming child being dragged into a cubicle by a stressed out mother.  Next minute all they hear is his mother shouting at her child to stop screaming and calm down etc. etc. (I’m sure you get the jist of what I would be saying)!  With screaming child telling mum to get off him and leave him alone!  Mum shouting “just do it, I’ve got him held down” to the nurse while child sobs hysterically!

You can imagine the reaction when we stepped out the cubicle.  No doubt I would be lynched the minute I came out, held face down on the floor, whilst receiving a few swift kicks in the ribs, till the police and child protection arrived to escort this heartless cow of a mother away, while whispers of poor child, how callous reverberated around the room!!                   Just the thought of this sends shudders of fear down my spine and sweat pop out of places it shouldn’t!  So for the sake of my sanity and my sons, I took action.

I mean I probably shouldn’t of called the Staff Nurse a liar and a callous cow or sarcastically thanked the receptionist for being soooo unhelpful, or  sneaked behind their backs to complain to his Specialist Nurse, who is an absolute angel by the way, to get  her to sanction that he could continue to visit the children’s department for his tests! But hey, all’s fair in love and war and never cross a stressed out, tired mum, YOU WILL NEVER WIN!

A small victory, I know, but one none the less, in the constant world of hospital battles.  Also another plus is my  nightmares have finally stopped, of me being lead away, put in stocks and pelted with rotten fruit for being a bad mother, by hysterical laughing nurses and patients!  Believe me that’s a  tame one, the others involved zombie nurses and extremely large syringes!

So we got past that challenge to find out he needs another test as his potassium level is .1 below what it should be.  Seriously?  Are they trying to put me in an early grave? I’m sure  a .1 difference isn’t going to cause major issues in his health that requires them to issue another blood test!  Do they not see the crazed looked in my eyes or my hair that’s turning greyer and greyer?   So for the sake of my sanity I took the decision not to take him. Well I say I took the decision, I did talk to several friends and family members for their advice, to ease my guilt,  and they all agreed for .1 that is really wasn’t worth putting him through all that fear again or adding anymore grey hairs to my head!

I just feel like some days I am constantly banging my head against a brink wall with people who wont listen to me and think its OK to treat my son like they would a child without special needs, without  understanding the extra stress this puts on parents and the guilt it can cause, as you start to question if you are actually a good parent or just an over anxious parent that they seem to like to imply!

Anyway moving on, we have had some good news though, so it is possible!   We have reapplied for a School Statement and got through to the statuary assessment stage this time! This is a massive achievement as its taken over 4 years to get this far!  So I met the Ed Psych yesterday to go through my concerns regarding my son and the school.                          But oh my goodness, she looked like a child herself!  When she walked in I thought she was a sixth former till I realised the school didn’t have a sixth form!!                                        Although to be fair, to her, she was very nice and very positive so between me and the school, we have a very large amount of fingers and toes crossed that he gets accepted.  We have about a 2 month wait to find out but will keep you posted.

The next week will hopefully be slightly less stressed, as I am in hospital tomorrow for pain relief injections in my back.  I hate hospitals, despite the fact i practically live in them, but this is for me so today I have a major headache and quiet panic attacks about the ensuing procedure!  I say quiet as I can hardly freak out when I am trying to convince my son there is nothing to worry about when going into hospital!  You would think, after 26 operations, that I have managed to master by fear and see it as just another day out but surrounded by Dr’s and nurses and large needles!  But no I’m still a wimp and feel slightly hypercritical when telling my son off for throwing a fit about his own procedures!     Gosh, being a grown up sucks at times, that’s why I think I still act like the biggest kid going. Although it’s fun when you embarrass your kids by acting like a bigger kid than them and get me and my mother together and I’m even worse! But  I digress!  So yes, hospital tomorrow a few days of me being looked after for a change, then a week of hospital appointments this time for my other son!  Will it ever end, I wonder?

My Life is like a constant Merry Go Round and I do enjoy it, but sometimes, just sometimes I just wanna stop the ride, get off, and just my catch my breath for a few minutes!