campin nitemare!!!

[jo jones]

hi all , we have just come back from a wkend campin and i have to say the little one was a nitemare!!!!! from the minute we pitched. in the tent bit further down from us he could see other kids,,,,he went over, went straight into their tent and said he wanted to play with the little girl? i thought ok he has made a friend,,fine,, bout half hour later we wanted to go for a walk,as we could see blaine we called to him,,,,the mother came out and said he has asked us to look after him while you go for a walk!!!!!!!!!!!!!!!!!!!!!!obviously i said i wouldnt leave him with someone i didnt know and she agreed and she said oh he can play when he comes back,,,,off we went with a very upset blaine,,we then tried to explain that these people were total strangers and that he couldnt stay with people who we dont know!!!!this is really difficult to explain to a 6 year old,,,,anyway he did get attached to this little girl to the point that if she went somewhere for a bit blaine was in tears,,,,,the mother came on to me and asked us what we were calling him? i said blaine why? she said well his name is alex isnt it? i explained that he was definately called blaine and made him admit this in front of her,,she said her family had been calling him alex???????????,he also told them that he has a sister called sasha????? i explained he has a brother called jarrad,,,omg i was starting to think what must she be thinking?????? my hubby said they must be thinkin what a bunch of wierdos we are????,,,,,,i dont know why blaine would want to do this?????,,,,anyway he didnt leave this family alone all weekend and i think he got on the parents nerves as he was going to their tent as soon as he saw them,he drove them mad and us cos we were calling him back constantly,,,,,,,,throughout the wkend we were chasing him cos he was running off into random peoples tents,,,,,telling them that he had to check their bedrooms and bouncing on their airbeds,,he went with binoculars to the edge of the field where we could see him,,within seconds he had gone,,,i ran to look cos the beach is just off the field,,he was sat with a pair of elderly people chatting away,,,,,the elderly man said he just came and sat with them!!!!!!!!!!!!!!! omg he just hasnt a clue about any danger whatsoever,,,,he was just talking to anyone,,going up and in the tents for a look,,,,,,and we took loads of toys and stuff to occupy him,,,when it was getting dark he kept asking to go to the toilet on his own???????????? we had to close the tent up early both nights to stop him going off,,,,,,we noticed a major difference in him this year and decided to go campin cos normally it is less stressfull for us as when we go abroad he is fascinated with the drop from the balcony,,,,,,, we also went on a walk but didnt realise there was a big cliff on the the other side,,,,,we had to grip him cos he kept wanting to look over,,he made us sooooo nervous,,,,,,is this normal????i dont know it seems as though he is getting worse as he is older,,he has app on fri with his paed again and she hasnt been given any info on sensory issues so she has asked if i can take it with me,,,,,it does seem that when he was assessed for asd by psych she had passed no info on,,but then again they reckoned that blaine has no asd whatsoever

[NickyB]

Oh, jo, I know just how you feel.

 

Little DS (5 yrs, HFA) has no sense of danger - we're off on hols soon and I'll be making sure we go nowhere near a cliff

 

At the moment, his favourite thing is to go up to complete strangers and talk to them about their car. It can be really embarrasing, alhough most people find it funny, and are amazed that he knows what make and model of car they have

 

He will talk to anyone, and I have to keep an eye on him the whole time, as he would happily go off with a stranger if he found them interesting. It's exhausting

 

Sorry I can't offer much advice - hopefully they'll grow out of it in time

 

Nicky x

[jo jones]

hi nicky and yes it is really hard cos he dont understand that u cant just go on to people as if u know them,,the people thought it was quite funny and were saying oh he is ok???? i was at my wits end running after him all time ,,,,hubby wants to go again this wkend???????????? he is mad,,,,,,as it happens cos this place is known to us and all our mates we normally go in a crowd which is better,, and we normally bump into people we know,,,,,out of all the people i didnt want to see we happened to bump into my eldest boys father and his wife!!!!!!!!!!!!!!!!! blaine had gone round the corner and lucky my ex was walking through????? he picked him up and brought him back,,,,i had gone the other way!!!!!!!! and hubby was by the tent,,,,,god knows where he would have got to???????? should i explain this to paed on fri????? is this a trait of asd????? cos they told me last time this wasnt??????? obviously he is getting worse as he is getting older ,,plus i see this in a young lad with as whom i work with,,,he will approach strangers randomly,,,,,,,,,,,,,i just dunno,,,psych said he is normal ???????????????????????????????????????? thanx anyway jo

[NickyB]

should i explain this to paed on fri????? is this a trait of asd????? cos they told me last time this wasnt???????

 

I think you should definitely tell the paed about it. Do you keep a diary of all the things blaine gets up to? - we found it was really useful to have something in writing to show how often DS does 'odd' things. I suppose it could be seen as being 'normal' to do these things but, I feel that the difference is whether they learn from them and then change their behaviour. I'm not an expert, but I feel it's about the understanding of relationships between people. Do you think blaine understands that he should behave differently with strangers and people that he knows, or does he see everyone as being the same, whether he knows them or not?

 

Hope that made sense - my brain hurts now

[jo jones]

we have tried to teach him about strangers and so on but like u say he does see everyone as the same,,we can go to tesco and he will be chatting to random people??????? we took a diary with us to psych and she said pointless as he is normal???????? basically cos i work in autism im lookin for it???????,,so they tell me,,paed is different though she does understand that he is different and she recognised the sensory probs he is having,,only then did we get anywhere,,cos then we had referrals to o/t and salt and also behavioural therapy,, which confirmed what we knew anyway,,,,psych didnt want to know!!!!!!!!,,,but we have been told that paed will not dx him without psych agreement so im hopin that she can answer sum of my questions again for me,,,

[cmuir]

Hi

 

Keep a diary recording details like your camping weekend. If your heart and your head tell you that something's not right, then don't let anyone tell you otherwise including GP/specialist/etc without them giving you an explanation.

 

In my son's case intially our GP/Health Visitor/Community Paediatrician/etc categorically told me that R didn't have an ASD. Once we got past the finger pointing, and as time went on, they eventually acknowledged although they didn't know what, that there was something wrong with R. By that stage, I felt so low and utterly desperate for answers (I also felt that I'd been on the rollercoaster too long to give up!), that I wouldn't let it drop until I got answers. Eventually, I got the name of an NHS specialist who has an excellent reputation for being incredibly knowledgeable, and pleased with her to see my son and I. It was only a matter of a further two weeks from that point that she diagnosed R with AS.

 

Guess what I'm saying is that whilst I don't believe that parents are qualified to diagnose conditions themselves, we are nevertheless experts in our child's behaviour ie we know better than anyone when something isn't quite right - in my book, that qualifies us to have an opinion and express that to specialists and ultimately pursue answers/diagnosis.

 

I really sympathise because I've been in similar situations many a time. Whilst my son's traits and obsessions come and go and get replaced with another, I've found certain aspects of his behaviour easier to cope with with age and understanding.

 

Caroline

[Flora]

None of my kids have done this, but I did it when I was a kid! I remember doing it on holiday on more than one occasion! I can even remember the names.... Once I was called 'Pauline' and I had a brother called 'James'..... then my brother came to play with us and dropped me in it . I can't speak for why your son does it.... but I know I did it because I was embarrased about my name.... it was a rare name in those days but quite common now, I also wanted to find out what it 'felt' like to be called something different! ... although that doesn't explain why I also lied about my brother's name!

 

Anyway.... I don't think this is related to ASD (although I do have an adult dx of AS but I think that's just a coincidence)....

 

Flora X

[jo jones]

hi all and thanx,,i have been told to wait cos it will come to light the probs he has as he gets older,,,,over the last few months i think he has got much worse,,behavioural and generally,,,,,,but this could have got worse due to the effects of his bump,,,when the paed rang me i did ask about that? and she said that she cannot answer that for me and maybe he should see the neurosurgeon again as the changes in his behaviour could have been through the trauma,,,,when he first had the bump they told us to monitor it so we did but when we went back in april and said that behaviour had changed and so on they just said it is cos he is getting older and they didnt think that there was any neurological damage from the bump????? maybe i would question that or is it just coincidence??? i dunno,,school also says now that his concentration is poor???????????

[Sallya]

Hi Jo,

 

done lots of camping since the kids were very little, and it is very hard when they are young, but does get easier as they get older. I collect games, bat and ball games, giant noughts and crosses, bubbles, mini parachutes, cheapy games from the supermarket. The kids from all the other tents come and play with us, and join in, instead of wandering off and annoying other campers. the kids have got walkie talkies, and they are very useful/ novelty value for keeping in touch with if they should wander off. We always chose a campsite with a park. Portable dvd players are also really useful for those hard to fill moments/rain. The more you go, the more they get used to it, and the easier it gets.s

xxx

[jo jones]

we took loads of stuff with us to play with but he wasnt bothered,,,we also took a portable dvd which normally he loves,,,,every other time we have been he has been ok and we go a few times through the summer,,just dunno why this time it was so bad?????????,,,i did realise though how different he was to other children his age,,,how he would only play with the little girl and not her brothers??? and would follow her around like a puppy ,if she went off for a walk with her mum blaine would be crying,,but wasnt interested in the brothers??????????? strange i think,,,,,,,,,

[joybed]

We caravan a lot and had similar problems when M was little. We once went to Fort William and they gave us a pitch right by the loch side. i went straight to the office and explained they would have to swap us with someone else as DS was likely to go for a swim. she thought I was barking mad as he was 7 at the time. When he was 5 and just diagnosed he also had no idea about stranger danger in his head if he knew there name they were not a stranger so anyone wearing a badge wasn,t a stranger or he would simply ask there name. He still goes off and chats to random people about computers so still no idea of strangers, but these days he is inclined to accuse people of bullying him. He is incredibly sensitive and doesn,t like being called names so even if someone gives him a pet name (like smiler or love) he says they are bullying him. This leads to me having to give all kinds of explanations to complete strangers. I think they do get worse as they get older as i think some of the "autistic" behaviour can be explained away and there is the cute factor. When they get bigger they are just seen as weird. M is also becoming increasingly isolated as he gets older and less willing to join in with things, he has to be persuaded to go anywhere even with us. We go on holiday next week and he says he is staying in his tent on his own the whole time with the door turned away from us, he says he may let his sister in if she is lucky so we willl be fighting to get him to join in with meals games etc. We are going to Cornwall again same campsite, same pitch as we know the facilites are up to his standards and it is familiar and very quiet. Our holidays are also very challenging with 2, 4 year olds as well but I refuse to be beaten and keep going M takes a while to settle but by the second week we have him calmed a little.

As far as diagnosis goes we battled on for ages with school acknowledging he had problems but refusing to refer him. He was seeing a clinical psychologist for 18 months who repeatedly said he had autistic tendencies but wouldn,t diagnose (didn,t want to lable him apparently). Diagnosis came when he changed schools after a house move and i explained my concerns to the headmaster while looking around the school. M started the next day and by lunchtime a referral had been made to CDC. He was diagnosed within 4 weeks. Keep battling on you know your child better than anyone.

[jo jones]

thanx joybed,,i know i aint going mad,,,,,cos i said all along about his sensory probs,,,,i told hv when he was 2 that he lived on sausages and yoghurt???their answer was well he dont look starved does he??????????? i will keep pushing and even though they accused me of lookin for it cos i work in autism,,i think this has given me a better insight to what i am observing in my own child,as you say i know my child better,,,,,we will keep campin cos he loves it but will use a bungeee rope i think nxt time ha ha

[bikemad]

Ds is the same we love camping but god is can be so hard esp if he does a disapearing act that takes all of a split second!!!!!!!!!