Wednesday 24 October 2012

She is talking shit!

I have had a very busy few weeks but now it is the school holidays....thank god.

For me that doesn't mean a lie in as such but it does mean that I can start the morning a little bit slower than my usual "hit the ground running" start to my day.

These last few weeks I have managed to wean Jack off the pain killer Tramadol which he had been taking for his reflux. That went smoothly but more or less as soon as he stopped taking it, he started having looser bowel movements. This is most likely because the Tramadol can often cause constipation therefore coming off it can make things looser. Plus this is an ongoing problem with Jack and I am continually juggling medicine to keep everything regular whilst making sure he isn't constipated as this can cause his seizures to escalate.

Very quickly this became a problem for the school who made a huge fuss suggesting that he had a dose of the runs and complaining about having to give him a full change of clothes twice a day. It didn't help matters that they were using the his old pads which are way too big for him and therefore more likely to leak.

The teacher insisted that I come and look at these soiled pads because in her expert opinion, Jack could be dehydrated and need medical attention. When I told her that I knew exactly what she was talking about and that I wasn't worried as it wasn't as if he was pooping every half an hour for god's sake!

For over 2 weeks I was continually harassed by this teacher about this problem even though I had explained that he had changed meds, was still recovering from his Fundoplication, had had his feed changed umpteen times in the last year, that I was no longer giving him medicine to keep him regular and that I was trying to adjust his feed to help with this issue.

pic from here


This teacher was complaining that Jack was spending well over an hour in the bathroom every morning getting cleaned up by two members of staff leaving her short of help. I explained that I could shower Jack, wash and dry his hair, dress him and get him into his bed in 30 mins so what exactly were her two members of staff doing in the bathroom all that time!

I was getting so damn stressed by this teacher's continual harassment and it all came to a head on the day I was picking him up for an appointment at wheelchair services in Aberdeen. This teacher high jacked me as I was coming in to collect Jack, insisting I take a look at his soiled clothes because she felt there was a problem and I obviously wasn't willing to do anything about it, in her eyes.

I was furious as I knew exactly what she was talking about, had been dealing with this problem on and off for years so I said through gritted teeth "I am already doing everything possible in the background and I am literally jumping through hoops for you to solve this problem!" I think she knew that I was angry cos she finally said "It's not about me, it's about Jack". I totally ignored her then cos this is the first time she actually mentioned the inconvenience it was having for poor Jack.

I just wanted to get the hell out of there. But no it wasn't to be as this woman made sure she kept at me right up until I got to my car where she finally buggered off!!!

By the time I got Jack into the car, I was that mad, I was crying! Now it takes a lot to make me cry so you can just imagine how bloody fuming I actually was. I really don't think that this woman had any idea of the self control it was taking for me not to smack her one!

pic from here

By all means, as a professional, express your concerns to a parent but when the parent is listening and giving you valid reasons for the change and asking you to wait and watch and see, then you should at least allow them that courtesy instead of coming up with your own diagnosis of something you know nothing about!

I spent most of the drive through to Aberdeen in a state of rage and despair. Rage at this woman and despair because Jack was so floppy and tired while he was sitting in the back of the car in his wheelchair, that his head kept flopping forward and partially cutting off his airway. This resulted in him having periods where he was going a funny colour so I had to stop the car and put on his soft collar.

By the time I got to Wheelchair Services I was distraught and quite frankly I had had enough. I felt such a fool when I got upset again explaining to the O.T. that Jack no longer has the energy to even keep himself upright and he is practically folded in half in his wheelchair these days.

This, to me, is a real, bona fide problem as it impacts on his organs, his breathing, his muscles etc etc and to be honest is a much bigger concern to me than anything apart from the seizures.

The next day I sent a new pack of pads to the school, suggesting that they use them instead and also asking them to dispose of the sterile water they were using in school as I had noticed the bag they had given me was about to expire. I was still pretty mad but we were going to be having a review meeting the next day so at least I was getting to air my feelings then.

Within the hour, the teacher was back on the phone explaining that they aren't using the sterile water these days but that they would dispose of it. She also said that she was phoning to "clear the air". That's when I let her have it! I was so mad that she was trying to sort it out before this meeting that I didn't hold back.

You would have been very proud of me cos I managed to get my point across and I didn't swear, not once! LOL.

pic from here

She kept apologising when I said "you are actually undermining my parenting by suggesting that he is dehydrated. Do you even know what the signs of dehydration are? Do you actually think that if I thought for a minute that this was a problem that I wouldn't have called and spoke to a doctor by now? Do you even know that if I withhold the meds for keeping him regular, that he then might become constipated and could  start fitting like crazy? What would you prefer; him to have looser bowels or to be 999'd from the school because of seizures? I know what I would choose!"

The very next day, at the review meeting, the Head Teacher said "so it seems the bowel problem has been fixed, what did you do?" I answered "making sure the school are using the right size pads has helped hugely, withholding meds and altering the speed of his feed but these are not quick fixes".

She expressed her concern that her staff were in the bathroom for so long but when I queried this, saying how quickly I could do it, I then turned to the teacher and asked "why are they in the bathroom so damn long?" She replied that "well, he often has a seizure whilst in there!".

I threw up my hands saying "so it's not his loose movements that are keeping him in there so long then!"

I rest my case.


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