downsides past & present

A journal friend is having her journal featured this week on the US side of AOL...The journal in question is Saras Days which i have a link to on the right :o) ...She also has an autistic son and is using this week to raise awareness of autism and explaining how they went through diagnosis...A lot of what she has written both this week and in the past i feel affinity for...I know that most who read my journal read Saras too but if you don't have a looksy as she writes so well and she's also very witty...Her entry from yesterday i very much have empathy with and decided to write a bit about my own experience of same thing today.

Going out both in the past and also the present can turn into a complete and utter nightmare time...As i have said often autism is so jekyll and hyde and no-one can understand it unless they live with it on a daily basis...Neither of my sons particularly like going out in crowds so shopping can be mega difficult...When they were toddlers and in G's case a baby then it was easier as i left them at home with their dad and went out on my own...G as a baby used to scream the roof down when we went into certain shops...At the time i found it very embarrasing and used to just dump whatever i was intending to buy and leave the place...After a while i noticed it was in the same shops and came to the conclusion the lighting was affecting him in them...So unless he was asleep i avoided them like the plague...It was particularly hard as it was always in shops that sold baby/toddler clothing...Also once his M was born having a double pushchair and a 3 year old in tow was bad enough to go shopping with let alone this screaming monster as G seemed to be at the time...I have since found out that he is particularly sensitive to certain types of lighting...I didn't know this for definite until he was 13 and he had filled in a worksheet at his base...It is not so much the actual beams coming from the light but the bulbs...He can hear them buzzing and he hears them really loud...I always knew that M had hypersensitive hearing but not G until he did this worksheet...I now know that halogen lighting he doesn't hear the bulb and i have replaced most of the lights in the flat to halogen ones.

By the time G was capable of walking enough not to be in the pushchair i thought i knew all the places in town to avoid...I didn't want to have to drag him by the hand out of places...G was already diagnosed by then but M wasn't...The places G couldn't go into i knew but then M started having screaming fits in other places <sigh> ...M had by this time developed epilepsy (since grown out of it) and his screaming tantrums had no rhyme nor reason...His chopped and changed everytime we were out...He would throw himself down on the ground and bang his head of the pavement or floor for what felt like hours...Sometimes they would last for seconds sometimes 45 minutes...As they got older and M was also diagnosed autistic it became more stressful...Both myself and my daughter had already lost some so called friends because of this...General public would stare and whisper at us...K bless her even when she was only about 6 or 7 would go up to people and say 'Don't you know i is rude to stare didn't your parents teach you manners' ...Or she would say 'My brothers are autistic what is your problem' ...I never once told her off for being cheeky as she had a very valid point and i was proud of her...One thing i learnt pretty quick when my sons were small was to develop an very thick skin...I have *lost it* with people in the past and still do but i do try to keep it to a minimum...One particular time that sticks very much in my memories is when the boys were about 7& 8 or maybe 8 & 9...I know i was a single parent by this time...My mum had come in and we were out shopping in town and going for lunch too...We had gone into M&S and M went totally of the rails...People were staring and i was trying desperately to keep a hold of him so i could take him outside to calm down...One couple were *whispering* a lot but loud enough for me to actually hear what was being said...So i got my mum to hold his hand and i marched right up to them...I did shout but tried to stay calm through my tears...I explained he was autistic and that he was not some brat who needed a good skelp on his backside...I said smacking him would only escalate it as he had no comprehension of why he would be getting a smack...Consequence one extremely embarrased couple who muttered an apology and left the area.

G did improve to point where he seemed to cope okies...He's always been more introverted than M...I did notice though that if we were out and it was getting crowded if you took his hand he was rigid and shaky...M has always been more vocal so it is easier to spot his fears...M still throws his wobblys and the most recent one was on sunday...As readers know they have this footie tournament next wednesday...They are required to wear football boots and shin pads for it...After respite we went down to JJB's to buy boots and shin pads...M lost the plot in the first JJB's we went into...He started banging his head off the shelves as G was trying on a pair...They didn't have any costing less than £50 for M and i wasn't about to pay that much for football boots...By the time G had tried his on and i was going to buy them M had decided to run off...G ran after him but luckily for me he had stopped at the top of the stairs and sat down screaming...He still has the road sense of a 5 year old and at 6 feet tall and 14 stone i can't restrain him so it can be a worry...Certain things he can be like a toddler in a mans body...I explained to the shop assistants not to go up to him and why and was best to just leave him alone...I have been called allsorts in the past like uncaring mother etc for taking that kind of action...Really it is the best thing to do as trying to comfort him just makes things worse...Left to calm down by himself has always been the best course of action...We did go to the other JJB's and i left the boys in the car and went in on my own and managed to get boots for M...On monday he happily put them on and was pleased with them.

I am not saying that every child or teenager anyone sees in the street/shop/playpark has the problems my sons do but do stop and think if possible...It's NOT an excuse for their behaviour and i do tell them off but in a way they can understand...Autism is not a visible disability and like any disability that isn't physical so people can see it then it can be doubly hard for parents/carers to deal with...We have never had what most would call a *normal* family life and my marriage broke up because of it...But we haven't had a *bad* life we just do things different...I will miss K like crazy when she leaves home for uni at the weekend BUT i have always encouraged her to leave home to do that...I want her to start having a *normal* life for herself away from her brothers and how life has been over the last 13 years for her...For Sara and her family and myself there are an awful lot of us around now and awareness of how it can be for both the person with the condition and their families is needed...I now have cards that i can give to people but i haven't as yet used them as i prefer to say myself...Am used to it now but those cards i could have been doing with 13 years ago when i was still new to it and vulnerable...Am rambling on way too much now so am gonna shut up LOL...Just one last thing G is very much aware of how he can be which is why he found having to talk in front of his whole class so stressful...With his aspergers he likes everything to be just right and it wasn't......toodle pip xx