Tudor and Jousting fun plus a little bit of religion.

For those who know J's father, it is fairly obvious that J is the proverbial "chip off the old block". Like his Dad he has a love of performing to an audience and generally he is very good at this, although if a rigid structure like a play is going on, a change in the performance can be distressing.

As well as this,  J has achieved his ambition of being an Altar Server at church, it was with great trepidation that I agreed to let him try this as being autistic can make him fairly...random...at times. I took him on a Tuesday evening for the nice quiet evening Mass being led by the lovely (and maybe slightly eccentric) FrB .

J looked like a little angel in his white alb and just needed the halo and wings for the look to be complete. He went round the altar lighting candles to general oohs and aahs of the elderly ladies in the congregation and comments of "oh isn't he sweet". Given that J had been abominable earlier that evening my thoughts went along the lines of "if you pay me enough you can have him". All went well apart from at the beginning of Mass when he announced aloud to FrB (and the congregation in general) that he sounded "like the captain of a pirate ship"! Thankfully FrB took this in his stride and the rest of the service went without a hitch....J is very proud of himself.

So off he has gone with his Dad to be a "Tudor boy" while Dad remains Henry VIIIth and the jousters remain excellent at riding horses and slapstick comedy designed to keep an audence entertained.

J has had an absolutely fantastic time doing this and has enjoyed the friendship of V, the daughter of "Anne Boleyn". V is the smae age as J but they have agreed that she won't tell her boyfriend and J will not tell M (his "girlfriend") about their friendship. They are seen having a cuddle together when either is tired and it is all apparently very sweet.

This week J has an appointment with Judy, a dressmaker who J's Dad knows and who makes all his costumes, she is going to make a costume for J to wear when he goes off with his Dad - naturally with Dad being Henry VIIIth it is natural that J shoukd be Prince Edward VIIth although much less sickly.

I cannot wait to see him today and tomorrow he is once again an Altar Server.

With FrB being off "doing essential pastoral work on some remote islands " (ie holidaying in Fiji) we have the services of the hard working FrD - I hope he is ready for J.

Doctors, medication and fun.

So we went off to the paediatrician with J who treated her to the fun of himself in full flow. He lay on the couch, got off the couch, went under the couch, weighed himself, stood on the height scale and generally became distracted by all the bits in the room.

Discussed his situation with the doctor and she checked his blood pressure to find that it had indeed returned to normal  after a week without medication. Lots of discussion and thought after which we decided that as J's medication works so well he would be better off continuing on it but at a reduced dose. So we have reduced the drug doseage by one third and will monitor things, J will return in two weeks for a blood pressure check and hopefully will be not too inconvenienced by the reduction in the drug.

The lovely doctor also gave me some Melatonin to tackle J's sleep difficulties and we will see if this brings his "falling asleep" time forward from midnight to a more reasonable hour like 9pm!

So a few days in and J appears to be coping well with the reduced dose, he is still calm with it and can sit down to read a book, the food issues are unchanged but nothing new there and all in all I am hoping we have a good outcome to the medication issues. The proof of it will really be seen once J returns to school in September and has to face the daily noise and stresses of the classroom once more.

The issue with Facebook is not yet sorted but will be given full attention in September when school returns.

(Two) Face(d)Book

It has been a week of pure Hell!

On Tuesday I recieved a call from J's school, he had a headache and could they give him some Calpol? Yes they could of course.

Then I checked his blood pressure...I did it three times as is recommended and took the best of three which was 148/96 - so sky high. I rang my GP with a bit of a sinking heart because I knew the advice was going to be "stop the Mediknet", the drug which allows J to focus in school and which helps him deal with the sensory overload a normal classroom brings.

I stopped the Mediknet and the next day in school was a disaster, J simply could not cope. Even worse he had a part in the school concert which he had been so looking forward to. He managed half his part before all went wrong, the children accidentally missed a tiny section of the play out; not a huge thing by any stech of the imagination but it was disasterous for J whose autism does not allow for changes easily. So J became confused and bewildered, he went onto the stage when he should not have been there, nothing too wrong in that as he simply took part in the singing and then left the stage when he realised he should not be there. He went to his 1-1 and I could see he was becoming upset and starting to cry, his lovely 1-1 (Sally) tried to help him but he would not be consoled and so his class teacher took him out and the child who did the part at the previous concert took over.

By 1.40pm the school were on the phone, could I please come and collect J as he was at risk of injuring himself (and others). I went and collected J who was in the medical room when I got there and active as anything, when he saw me he became emotional and started to cry, he sat on my lap and cuddled into me with great heaving sobs and kept repeating "I'm sorry, I'm sorry, I'm sorry". It was hideous.

The next day we had a meeting with the headteacher, J's Dad drove up from Somerset to be there too.
We decided along with the headteacher and with the SENCO that J was unlikely to get anything out of attending school for the final two days and so he spent those two days with me as "authorised absence". Naturally in the calmer and quieter environment of home he was easier to deal with...and we had the Lego out, he bounced on the trampoline and we read.

By Friday I had managed to speak to the paediatrician and an appointment was arranged for 25th July and I heaved a sigh of relief. The tension I had felt for the previous few days began to ease although I still felt an awful tightness about my chest but it was better now I knew an appointment was in place.

Then the phone rang......

A parent who I know rang me in my capacity as Governor, she didn't kno what to do but there had been a lot of complaining on Facebook regarding the school's reward scheme and halfway down the responses was a parent stating that "I bet that little shit who ruined the Yr 4 concert got a reward, he was on stage when he should not have been and ruined the hard work of all the other children".
Initially I put this down to the ramblings of someone who did not know J's diagnosis....until the name was passed on. I was stunned, this parent has a child with a disability herself and is very nice to my face outside the schoolgates and even worse she knows very well the diagnosis J has.
J's Dad was fuming and sent her a message via Facebook pointing out that J was autistic and telling her that referring to him (or any child) as "a little shit" was hideous. Her response was interesting...

She was not apologising
J spoiled the hard work of all the other children
J misbehaved and got away with it
She "knows" about special needs as she has a child with special needs herself (so that qualifies her obviously to make ignorant comments).
The school should not have let J take part if he was distressed
The school were at fault.

So I am uptight all over again...but I am not letting this get to me as I have the whole summer to get through yet. I have copies of her messages (and all the others complaining about the school) and they will be going to the headteacher as soon as I get back.

But it's interesting.......she is so  nice to my face....but evidently not behind my back and now I am wondering how many others are the same.

Truth hurts!

There are occasions where I wonder about the diagnosis J received because his vocabulary is so good, he can mask a great deal simply because at times he can talk the talk and give a good impression of having understood and processed things when in fact he has not.
There are other occasions when I know that the diagnosis of autism was quite correct and J tells me in no uncertain terms either verbally or in other ways. His non-verbal ways include retreating under a table, hands over ears while he hisses loudly at all comers!
Sometimes like all those on the spectrum he is unfailingly truthful with no thought about how his words or actions affect others - or maybe he HAS considered how his actions affect someone and does it anyway.

So J does NOT like being teased or laughed at or called names, it upsets and distresses him but it also makes him very angry. His anger has led to several incidents in school which have often involved him bolting from the classroom or retreating under a desk to hiss at anyone who comes near.
Just lately though his talk while upset about things is of physical violence and he wants to hit or punch someone or other for their wrongs against him. We have talked about this in depth and J knows that hitting others is both wrong and not very nice. However, as I explained to the nice CAMHS (Child & Adolescent Mental Health Service) who visited to carry out an assessment, it IS just talk and so far he has not hit anyone. Little did I know that as we were talking, the school were sorting out yet another issue of teasing which had culminated in J thumping the boy who had upset him. The school had handled this very well (as is usual with them) and J had eventually apologised to the other child who had graciously apologised for teasing him and accepted J's apology. All was well.

So that evening I discuassed the incident with J who explained that the other boy who is in the year above him had called him "stupid". This had upset J very much and so ..."I hit him".

I asked J how he had felt after hitting the other child expecting to hear "I was sorry" but instead got "I felt pleased because it hurt him and I wanted it to really hurt".

Okaaayyyyyy! So we discussed it further while J raged about being teased and told me about all the other children he planned to hit too! Then eventually he calmed down and told me "but then after a while I felt sad about hurting him and I said sorry and he said sorry too and we are both alright".

So this child teased J, he processed it but could not follow the usual rules about finding an adult (or maybe DID think about that and chose to ignore that advice) and the other child was thumped. J was utterly truthful about his intentions to hurt and that worries me a great deal, he is getting bigger all the time and much stronger. He is also maturing though and with that maturity might come more self control.

I am hoping......

Team Around the Child meeting

We recently had a Team Around the Child (TAC) meeting regarding J in school. This involves several people involved with J sitting round a table to look at his progress and to discuss what other input might help him with specific issues.

 Firstly we had an update from the school, J is making progress and achieving well although his "achieving well" is not that of a standard child but finally after all this time he is moving from "below average" to "average". Certain situations and frustration still have him fleeing the classroom or retreating under a desk with his hands over his ears and hissing at anyone who comes near but on the whole this has all improved. My quirky little boy is growing up and starting cope with some things he could not previously manage. His LSA (Learning Support Assistant), Sally reported that J was making progress in leaps and bounds with reading and that he had finally accepted he would not be playing the lead role in the class play (this acceptance took weeks and weeks of talking and discussion). He is playing the allocated part with gusto and enjoying it.

The local health visitor for children with learning difficulties told me of a local group named SHARE which ran after school activites for children with special needs. I have the number and will give them a ring.

The local CAMHS were conspicuous by their absence and had sent a letter saying J's challenges could all be met within "Tier 2 services" , ie not urgent. I now have a letter and an appointment for an assessment which will see J join yet another very very long waiting list. Similar to the sensory occupational therapy one on which he has now been waiting for two years.

The specialist teacher (Ros) reported good success with a social communication group involving Lego. J has to explain a brick type to one child who has to pass the correct brick to a second child (the buildre) and then explain how to build a Lego design brick by brick. J is not allowed to touch the bricks and has to explain using only verbal communication. The "not touching the bricks" bit took some discussion and acceptance but Ros reported that J did well with guidance and that she was looking forward to working on all this with him again.

And at home, J remains challenging at times and now adding in that he can "look after myself,", this from the child who can still not put on his own socks with ease. This accusation comes from being forbidden to play with certain children outside (we live in a quiet cul de sac) who ask J out to play simply because they can tease him or get him to do things they know are not allowed. J thinks they are his "friends" and it is taking a great deal of discussion to try and get across that friends do not ask you to do unwise things.....like smash a glass bottle they have handed to you. Nor do they say "if you don't do that we won't be your friends..". It's a steep learning curve for J and he remains isolated at times which is hard to see.