Hospital appointment from hell

Yesterday day had to be one of the worst appointments I have ever had to sit through. The reason for the appointment is that youngest has had problems with her bladder since birth & now that she has reached the grand age of 12 it has got worse. After waiting a year to see the consultant & completing the sheet which required you to measure the wee & drink intake.

I went knowing that one of the things they were going to say that she doesn’t drink enough & therefore doesn’t visit the toilet enough. What I wasn’t prepared for was two doctors & one nurse sitting giving me a lecture on how she needs to drink more, not listening to a word I was saying or answering the questions that I had.

For a child with autism seeing someone different is hard enough but seeing 3 people at the same time was over kill. There was absolutely no consideration given to her needs or the problem.

During this wonderful visit I was told to bribe her if she drinks a litre of water a day at the end of the week she can have a present & then after 3 months she could have a iPad. So for a autistic child who takes things literally she’s expecting a iPad that the doctor promised her.

I have never left a doctors appointment feeling so useless,guilty & upset as I did yesterday & now I must save up for a iPad.

Where have I been

I know its been a while, in fact it’s been over a month so many things have happened some good and some bad. It’s been one of those busy months with christmas and going away and then we had the illnesses and then trying to get back to normal, what ever that is.

Those who have read my blog before will know that my father died in april so this christmas was the first one without him. We started planning for christmas in a kind of organised throw food at it way. We just didn’t want to run out of anything but really it was the robots inside both me and my mum that were working overtime to make sure that christmas was christmas without the one we love.

So mum came round for breakfast and we had some lovely smoked haddock and the girls opened their santa presents. What always amazes me about youngest is that she opens her presents very carefully, looks at them then puts them in a pile its as if she is trying to process what she has. Next was the dreaded phone call to my mother in law, now you may though that she does not like me, so it’s always one of those moments in the day that i dread just in case someone says something. As both Grandchildren talk to her oldest first followed by youngest only problem was she said to youngest, ‘is grandma and grandad (my mum & dad) coming to dinner, oh yes he’s dead’. Can you imagine how awful it was to hear that someone could be so cruel as to say that to a child but with that she said goodbye and put the phone down.

This was just a snippit of the fun that we had at christmas. We went away for New Year to Devon and had a nice holiday in a lovely hotel with lovely people. Then we come back and its nothing but illness after illness for youngest which has meant that she has had more than a week and a half off school. which those parents with children on the spectrum will know really was not fun add to that the fact that she’s not sleeping. you can kind of understand my absence but i’m back now and hopefully normal service will be resumed.

Strength

If there was a pill or an injection that you could take as a mother to help you cope with all the struggles and fights that you have to take on for your kids trust me I would for once be pushing in the queue to get mine before they ran out.

The last two weeks for me has meant constant emails to oldest daughters school due to her being bullied for which they yet again don’t seem capable of doing anything about. Then monday we had a CAF meeting where it became apparent that to try to get youngest help in the high school is going to be another battle because they seem incapable of giving dates so that meetings can take place to help with the transition.

This only leaves you wondering if you have made the right decision although there really isn’t another alternative because the school is the feeder school so they brainwash children into wanting to go there. This means for us with a child with Autism they refuse to go anywhere else.

I know nothing will be sorted out before christmas but you would at least like to know that the ball is rolling and that they are going to do all they can for your child.

As for my eldest well still the bullying continues add this to the fact that the head of year who is also one of her teachers always seems to be excluding her from things, really to not have her exercise book once is a mistake as its nearly every lesson what does that make it, oh and who do I have to report the bullying to yes you have guessed it her head of year.

Add this to the news yesterday that I got told that youngest daughter may need to have her jaw broken and reset in the right permission along with two teeth out or she could have braces and two teeth out, the first brace will force her jaw in the right place and after that has worked then she will need to have another brace which will force her teeth round. Would anyone care to explain this to a child with autism who has to have the same clothes and the right fitting who it took 10 years to wear her glasses and still that’s not all the time.

So the present I want most this year is strength to take on all the battles that are due to be coming my way.

 

Support

In the last week we have had the school nurse discharge youngest from receiving her services (We had obviously had our quota) and the educational psychologist offer to help in 3 months time with the transfer to high school. So it really was a case of giving something and taking another thing away. What struck me is that the way things are within our local area, I don’t know if it’s the same in all areas,I  hope it isn’t, Children are forgotten. These are the future generation and children with any type of special need should be given help with anything they need, so that they can reach their full potential and have the same opportunities as everyone else. Sadly that is not the case.

If you have had your quota then you have had it. So they have left a child who has anxiety problems over everything, no way of dealing with them except the use of her anti depressant that she was prescribed over a year ago.GP isn’t interested and will just keep dishing out the antidepressants, surely the answer lies not behind medication but behind management of anxieties. As parents you can only do so much you can not be held responsible for the problems that other people cause your children from watching a dvd at school on knife crime to going off timetable and not knowing what is happening next.

At home we plan things, we explain things and we are all well aware of what are the pressure points of the anxieties but at school they don’t have the time to do that for all the children that need it.

One of the most intriguing questions I was asked was about support and whether I had any. Other than my mum and husband the answers ‘No’ , I don’t know anyone else with a child with youngest’s needs, I spend so much of my time trying to ensure that things at home and school don’t kick off a meltdown, that I’m to exhausted to go out and find this support.

My question is where is this wonderful support, can you go and find it in the supermarket, is it in the phone book under S. I have to say after asking this question and my response of No I was told that I should have, I wasn’t told where I could find such a wonderful provision .

I guess what I am saying in this post is that although I am aware that support is important and trust me at times I would love someone to come round and offer me a shoulder to cry on, it’s not easy to come by especially if you have professionals who have quota’s and they need to be adhered to so when your time is up, then that’s it and the realistic answer is there is no support for anyone.