Packing for your holiday NOT made easy!

Today I waved my son off on his school trip to France, might not sound like much but this is a great achievement for a 14 year old with autism who has never been away from home in that situation before, never mind abroad. He has had chances to go before but has always turned the offer down,but this time he has taken another step on his journey into adulthood. 


I had to go into the school to get them to reassure him that he would not be made to eat anything he didn't like and that they would always make sure he had something to eat even if it was just a cheese sandwich (he only eats about 10 different meals, part of the sensory issues stemming from his autism). They also reassured him that they would be up early every day so the fact he is up early in the mornings is a good thing, they turned it into a positive.


Well last night it was time to pack his case, you may have heard me screaming from where ever you are reading this! He is very very fussy about what clothes he will wear, textures, colours, styles etc etc and even though he had been with me when we went shopping it still wasn't plain sailing.


In his words I was fussing.." why are you putting my clothes in so neat when I will just be shoving the case under my bed?".


I bought him a baseball cap." Why did you get one with stripes on front? I will have to wear it inside out!" (I could not find a plain black one anywhere, shop keepers please note!!)


When sent to his room to choose one more t shirt to go in case, all me and his sister could hear was " That one is too green, that is yellow, that one has pink on it, that one has writing, that one is too plain etc etc" you get the drift.

I got out the plain socks I had bought and when I showed him them, got " They are ok, at least you didn't get ones saying "I am gay" on them" (where did that one come from??)


I couldn't find his comb so told him to get one at the service station when they stopped there, to be told " If the hotel rooms have hairdryers I am sure they have combs" in a tone of voice implying I was stupid.


" Do you have my euros mum?" "Yes C, I have showed you them and told you I have them several times"


When asked to get his rucksack to use as hand luggage, he told me he was just using a carrier bag as they said use a bag, not a rucksack. It took quite a bit of persuasion to convince him that they did not mean a carrier.


He uses his rucksack for school and when he brought it downstairs he said it was full of crumbs so he couldn't use it. I was baffled by this but went for a look and couldn't believe what was in the bottom. At school they have a running track that leaves bits of grit and sand on their trainers, well there must have been about 2 inches of this in the bottom of his bag (he has a separate bag for his trainers so the mind boggles as to how it got there).After the holidays I am going to the school to check that they still have a running track and it isn't all in my house!


Finally he was in bed and I could start to breathe slowly again, till this morning. He had to be at the school for 6.30am and the coach was leaving at 7am. He must have said " Remember we have to be there for 6.30am" about 10 times , closely followed by " Mum, have you got my euros?" We made it to the school on time and the other children were arriving along with the teachers who were going with them. Well, the coach was late!! When I say late, I only mean 10 minutes..but coach drivers please note, if you are taking my son anywhere and you say you will be there for 6.30am..BE THERE for 6.30am and NOT 6.40am! You have no idea the headache I got for your lateness!


Cases were loaded, I gave his euros to his teacher (and made sure he saw me do it) and they all got onto the coach. Children were looking out the windows, waving to their parents and friends with excited looks on their faces..and C? Well he was sitting playing on his DS oblivious to the fact that I was standing waving...he did glance up at one point and gave a slight gesture with his hand that you could say was an attempt at a wave( well thats what I'm telling myself)


Now I am sitting here, feeling like I have lost something and doing enough worrying for the whole coach load of kids parents..but I am also very proud of him and looking forward to hearing all about when he gets home.But no doubt when I ask him about his holiday will get the one word answer "Fine".


This is their itinerary and C's comments on them.


SUNDAY and MONDAY
Full days spent at Disneyland Paris and Walt Disney Studios
Me:"Wish I was going there, you must be looking forward to going"
C: "It's Disneyland mum, no big deal"

TUESDAY

Day spent in Paris, boat on the river Siene, trip up Eiffel Tower, shopping and tour of Paris at night.

C:" Whats so special about the Eiffel Tower, its just a tower"

WEDNESDAY

Time to travel home, stopping at a chocolate factory on the way to the ferry.

Me: " What are you looking forward to most?"

C:" The chocolate factory of course" A boy after my own heart lol.

Have a wonderful time C, I am so proud of you x

Wordless Wednesday

My grandson J just minutes after he was born. He is 2 now and can't believe how quick he has grown up!

J as he is today with his mum E.

Meet me on Monday

Java from Never Growing Old hosts a blog hop on a Monday where she posts 5 questions so that we can get to know each other better. Thought I would give it a go, so this is my first Meet me on a Monday post.
Questions:

1.  If you had to eat only one food for the rest of your life, what would it be?
2.  Do you write your blog posts in advance or the day you post them?
3.  Have you ever ridden in an ambulance?
4.  What is your favorite candle scent?
5.  Coffee or tea?
-----------------------------------------------------------------------------------------------------------------------------------
1. If you had to eat only one food for the rest of your life, what would it be?
Chocolate of course!! Is there anything else?


2.Do you write your blog posts in advance or the day you post them?
I haven't been blogging that long and at the moment post when I have written them, maybe that will change.

3.Have you ever ridden in an ambulance?

No, never even visited hospital as a child, saved all the hospital visits for with my children.

4.What is your favourite candle scent?

I love my candles and like lots of scents, but my favourite has to be Cinnamon.

5.Coffee or Tea?

Got to be tea, can't function in the morning till I have had at least 3 brews!

World Autism Awareness Day

If you have been following my blog, you will be aware that my 14 year old son was diagnosed with high functioning autism when he was 3 years old. 


Like many people, I was not fully aware of all the ranges of autism, to me an autistic child was one that was non verbal, would spin things in circles, have no communication with the world in any form etc etc..looking back I now know how ignorant I was. I do not feel ashamed about the view I had, I had never been told any different, nobody had made me AWARE. 


To me, that is what Autism Awareness day is all about...making people aware of all the differing degrees and aware that just like 2 non austic people are never the same, neither are autistc people. They all have their own personalties, different sensory issues, and different interests.


I knew that my son was "different" from a young age. As a baby he had been very sociable, laughing, loving attention,good eater, a joy to be around. However he was always ill, ear infections, chest infections, skin infections, virus's, chicken pox,  suspected meningitis...all before he was 12 months! It was after his 1st birthday that things changed..was like somebody had come and taken my child away and swapped him with another one (close friends said the same)


He stopped saying the few words he had, he screamed if anyone he didnt know spoke to him, he screamed if music was on, he screamed if one of his siblings sat next to him, he lost all eye contact, stopped sleeping and would hardly eat. There were also all the screaming fits where I had no idea at all what had upset him. Cars got lined up, infact everything got lined up. But he was amazing with jigsaws and could finish one he had never seen before in minutes.


Luckily I had a great health visitor and gp, they knew me and his sisters well , so when I voiced my concerns they were not brushed under the carpet. When he 2 he was given a place in a childrens centre 2 days a week where he had 1 to 1 from a wonderful key worker he got very close to, and was referred to the childrens hospital to see a leading consultant in autism..I was so scared when the word autism was first mentioned, like I said, I didnt know much about it.


Over his time at the childrens centre things gradually improved..he began to talk, ok not much at first, but was a start, his key worker got him toilet trained during the day (something i had had no luck with) and I began to learn the things that triggered the screaming, so life began to get that little bit easier. 


Just before his 3rd birthday, he was formally diagnosed with "high functioning autism".In one way I was relieved, it was now official it was not "my fault" (something a lot of parents feel when no one can explain why thier child is behaving in a certain way), but on the same hand it hit me like a ton bricks and I went about in a daze for many days to come. We got a social worker who arranged respite one Saturday a month so I could go for days out and spend time with my daughters without having to worry about C wanting to go home. An organisation called Spectrum came for home visits to give me advice, and went in to the nursery attached to the local school to show them how to make C's time their easier, and he got an auxiliary for his time there, so he had 1 to 1 attention.


He came on leaps and bounds and was statemented  in readiness for starting school , the auxiliary to remain with him..then we moved to England...but thats another story, lets just say the help and support vanished over night.


C is now at high school, coping way better than I ever hoped, doing great in class and loved by all who know him. Ok, he still only eats about 10 foods, he still hates baths, washing his hair and getting it cut. He still has problems understanding why us non autistic people act like we do , still takes a lifetime to choose when given a choice and still hates the feeling of new clothes on his skin...BUT he HAS grown up, has ambitions of being a computer game developer, makes us laugh, has developed a dry sense of humour..and yes, like other teenagers his age knows exactly how to wind me up! lol.


So if is there were two things I would like to see come about from Autism Awareness Day, would be that the next time you see a child screaming at their parents in the supermarket, a mother having to drag her child along the street while dodging the kicks and punches, a child who says what they think appearing to be rude..that you just stop and think for a second that that child may not be acting that way because they are spoilt, badly behaved etc , they may have autism.


Second, if you are reading this as one of those parents who "knows something is not right" and nobody will listen to you..NEVER give up, you know your child better than any doctor or professional.


Thank you for taking the time to read my post. If you would like to learn more click here for The National Autistic Society

School update and son's review

This is an update to last post. Went to the school this morning for C's review and to argue his case for not being made to change his subjects and think we have things sorted out..fingers crossed!

The review came first, where they discuss how he is doing in class, his grades and how he is getting on at school in general. Surprise surprise, he is doing excellent in Maths, Sciences, ICT, Media and Graphics..and struggling in English, Religious Education and Citizenship. Found myself having to explain AGAIN why this is (we do this every year), about how he struggles with hand writing and any subject that is related to "how and why people think and act the way they do" and that the reason he is so good at maths, science etc is that it is facts and figures.

At every review in the past there has always been an instance of where C does his "saying it as it is" thing,  and I find myself either trying not to laugh or looking for a hole in the floor to climb under. Today it seemed we were going to avoid that one, till his learning mentor asked him " Why do you think you do not do very well in Citizenship C?" I had a feeling that his answer would not just be "because I dont understand it"..and was right. Answer was " Cos the teacher doesn't teach us anything, how are we meant to learn anything when she only says 2 sentences?" 

Mentor " I am sure that isnt right C, are you sure?"

C's answer " I am not stupid, I know what I hear, she says 2 sentences and then lets us just talk to eachother. What is the point of that?"

His mentor looked horrified and starting scribbling in her notes about having to check that Mrs X is teaching etc etc. I did try to explain that if she was asking the class to discuss something, this would not count as teaching to C as she was not teaching them facts and figures..but not sure she listened..so now got visions of poor Mrs X being interogated about her teaching methods and not having a clue what is going on!!

Now moving onto the subject of C having to drop something he is good at for something he will struggle with...the learning mentor backed out of that one and handed me over to the deputy head...lucky guy! He started off with the " this is the best thing for C etc etc and that the colleges will be making it hard for children without the EBacc to get on courses.", but it didn't wash with me. Sat and explained all the reasons it was not best for C, and told him I had already rung the college and they told me they cannot see them ever refusing a child places on software design, games devolpment and computer courses because they dont have the new EBacc. He wasnt expecting that one! So he told me that if I could get a letter in writing from the college saying that, he would make C an exception. 

He then went onto to say he cannot make it easy for C to not do the EBacc as it would open the flood gates for other parents to argue the case for their children. I said that I didnt go along with that, as due to C having been diagnosed with High Functioning Autism, the school should be making "reasonable adjustments" if it was in his best interests and not put him at a disadvantage because of it.

So now this is the stage we are at..if I get a letter from college they will let him stick to his current subjects..if the college wont write one they will let him keep his current subjects due to it being in his best interests due to his autism. Is it just me, or is it daft that we have to get the letter if they are going to make an exception even if we dont? Or is he hoping I will go away and forget about it if the letter can't be got?

If its the latter, he is out of luck, just rang the college again and their school liason officer sounded surprised at them asking me for proof. He said he wont write a letter but has told me to get the head to email him and he will tell him what he told me..so now waiting on the school ringing me back again...oh what fun.

Want to jump and down for joy at winning...but dont think I will be able to do that until I have it in black and white from the school.

Thanks everbody for their support and advice this last few days..its great to know you are not on your own xx