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

The haircut can wait!

This weekend I was meant to be taking C for his haircut, sounds simple, but it is one of those trips out that I dread the most. From since I can remember, getting his haircut has left him, and us, traumatised. It is a sensory issue that is related to his autism..unlike most of us, he says it "hurts" and " feels horrible" and " why can't you just let it grow, I don't mind"
Until the age of about 10, we used to have to cut it at home, one of us holding him while the other one cut..but as he got older this became more difficult and after a lot of discussion and some bribery , we made his first visit to a hairdresser's. The visit went well , I heaved a sigh of relief and thought "sorted". The next few years went well, going back to the same shop and the same person and even though he still complained about going , there were no meltdowns or tears...till one day , the shop was closed and I tried to get him into another one. " the shop is too red", "the person looks weird", "the shop smells funny" and that day we ended up back home , hair still intact.
We have found another shop that he will tolerate but the days of just making an appointment and going are gone...he will argue constantly about what day we should go, give reasons why that day is a bad day etc etc and by the time we get there and back we are both mentally drained.
Well yesterday was meant to be one of those days and I am now sitting feeling guilty for chickening out. We had already had a stressful week, as he was at the opticians for his yearly eye test and had to choose some new glasses...you guessed it, not straightforward. He is fine with the test but is terrible at choosing ( not just glasses, he takes a very long time to choose between anything). After looking at all the frames he could have, he finally made his mind up after about 45 mins ...the frames were "too brown", "too black", "too thin", "too wide", "too weird" etc etc.
So now I have the hairdressers to look forward to next week...and now wish we had gone yesterday!

Well here we go!

Well here we go, my first post in my new blog. This is a place where I can write down my thoughts and feelings about everyday life, which for me mainly means family life, genealogy and all the usual highs and lows of life.

I am also hoping to include some of my discoveries from doing my family tree. I have always been interested in family history but it was when my grandmother died that I got into it seriously, I realised I had missed out on the chance to ask her more about her life and what she could remember about her family, so the journey began. I have not found anyone famous, or discovered a lost family fortune, but I have found out a lot about my ancestors lives and how they lived, along with a few skeletons in the cupboard (my favourite part!)

Along with all the family research, or as my kids call it "collecting dead people"..most of my time is spent with family...my youngest child ( well he is a teenager now, not allowed to call him a child lol), has high functioning autism/aspergers syndrome and it has been a long , sometimes hard, journey...but he is an amazing person who has made us all very proud and we wouldnt have him any other way. I also have a 2 year old grandson, J, who is just adorable, he lives with my daughter a few hours away, so dont get to see him as often as I would like, but my daughter either comes here or I go there for a few days most months.

My grandmother  (age 4), Helen Dixon, who started my interest in family history.

Well thats all for now, off to design my blog layout etc and hopefully make it look I have some idea of what I am doing.