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Newby, Looking For Advice For 6 Yr Old Son


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#1 tracky2

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Posted 25 November 2015 - 11:17 PM

Hi there

 

I'm glad to have found this sight, already yous have gave me some good advice about recording throughout the process of trying to diagnose my son, so thank you. And hope i have posted this in the right way.

 

I will try and keep this as short as I can.  

I am looking for some advice on dealing with anxiety issues affecting  my wee boy, he has several traits i think that lean towards ASD, so have finally sought advice from the doctor who is referring him on to either CAMHS or pediatric depending. The Doctor feels the anxiety should be investigated regardless.  Will be finding out who is taking control of referell shortly.  School suspects DCD although not sure about this myself because i wouldnt say he was a clumsy child and suffers problems more socially rather than anything else struggles with making friends,  struggles with pretend play, very literall, has some sensory issues, problems with textures, some noises, some smells and most foods, struggles to take direction,  the list could probably go on. I am aware that alot of these traits can merge in to various diagnosis'

 

However one of the main issues we are going through is managing his anxiety.  He suffers badly when anxiety hits to the point where he throws up if left.  It is normally at night ( he says because the TV and things takes his mind of what is bothering) although settling is not great at the best of times, has been  better since using the traffic light timer.  He also has a worry monster that eats his worries at night, several comforters and a night light, his music with ear phones if needed and fan (struggles with temperature, and noise sooths him).  He gets his 5 min cuddle aswell but on bad nights he still gets very upset normally if there is extreme windy wether or something ekse that has bothered him.  It is more apparent in new surroundings (staying at hotels as we found out in the October holidays is a no go even though we prepared him as much as we could, threw up the first night and didnt sleep a wink, had to fall asleep holding my hand the rest of the three nights).

 

Just wondering for those who have children with anxiety issues how do you manage this?.  I know some of the triggers for him but sometimes i am not aware that he feels bad untill full blown anxiety hits.

 

Sorry for the essay ;0)

 



#2 imperfect parent

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Posted 26 November 2015 - 01:27 PM

Hi and welcome. 

 

It sounds from your post as though you are already doing  the right sort of things, and just need a bit of moral support.

 

What we've found is that anxiety increases the need to control, and so one approach we use is to allow as much control as is reasonable.  This often leads to professionals suggesting we be firm and take control, but that really hasn't helped us.  

 

I have 3 children, now in late teens/early 20's, and all have times when they are anxious.  2 have ASD, the 3rd had cyclical vomiting syndrome which is something it might be helpful for you to research.  DD is on medication, which is also used in the prevention and treatment of migraine.  I hadn't heard of it before finding this site; we had been reached a point where her weight was becoming a concern around the age of 8 and a combination of diet (soya and dairy removed) and medication has made a huge difference.  

 

For holidays we camped, and used the same set up each time though we did use different campsites. The familiar layout of the tent helped.  We also camped in the garden before venturing away which ensured that the the whole experience wasn't new.  Over time we graduated to holiday cottages and B and Bs.

 

At the moment DS1 is very anxious, and this means we are reducing expectations and facilitating communication , but very much being led by him.  When things need to be done he has to try to conform and usually can, but things like baths, hair cuts etc are negotiated.  Too much choice can also be a problem so we generally give 2 options; eg if giving a drink (non negotiable) we will offer Fruit juice or milk, but gibe whatever is asked for within reason..

 

Your son needs to feel listened to and have some control whilst being able to rust you to listen and lead.  It  sounds so simple, but it isn't.  Be firm with your boundaries, but not inflexible. 



#3 tracky2

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Posted 26 November 2015 - 10:56 PM

Thanks for replying to me Imperfect Parent,

Your right I guess i just need people that understand the things I am going through right now.  Everything is so different when you really start looking at why your child is that we but different, i guess you have to do things a little differently. I soppose to most you wouldn't look at something like ASD autimatically when you see him.  

Its so hard trying to talk about it to other people.  My husband is in support of what we are all doing but forgets that i need him to talk through things with him now and then, hes not so good at that...  Then theres the people who say things like, dont worry about it, you'll worry more with him being your first?? (Not sure what that means exactly)  I think he just has OCD and anxiety problems, or I wouldn't stress about it, he'll be fine.  I get the impression from some that they think I'm over thinking things.

 

I get that there trying to help but there is times i need people to just get that it can be quite an emorional thing especaully when you have to name it aout loud to professionals.  Sometime i am just looking for some advice on how to handle things he does. To others i guess it looks like iam stressing and looking for things that aren't their.  Maybe there will be no diagnosis at the end of it but I have still got to support a son who is struggling with things that others don't see because they don't know him well enough.  That's where these sights are a god send yous dont judge :)

 

Just to say also that we have finally found a holiday that woks for us its a beach holiday down in Linkishire we stay in a caravan and although its had its moments the first few years, we have cracked it.  He doesn't throw up anymore we know what we have to take with us and what he enjoys, so success.  I guess I just have to lower the expectations of other things he manages what he can. I don't stress about the little things as much with him, yet i try and keep the main things routine like teeth brushing etc.  Luckliy hair cuts have neer been an issue he loves things like that often rubbing his head and back will sooth him.  i dont worry about his clothes or food either now, although that was just recently.  I just rotate what he eats but make sure that he always eats a veg and fruit he likes in a day and always buy soft joggies now (who cares about the latest trends right).   I have learnt something through all this, don't stress the little things right.

I have just realised that we dont give him choice as such, we  ask him what he wants to do etc , but I know now that he doesnt take direction very well he doesn't seem to process things like that very well and he can take a long time to decide on anything, can take several name calls to get anything done actually lol  giving him a choice of maybe two things might help him feel in control, even though I am still guiding him

 

Thanks again

tracky2



#4 imperfect parent

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Posted 27 November 2015 - 09:11 AM

Sometimes it's hard to believe in yourself in the face of what is thrown at you as a parent.

 

My concerns about DS1 were dismissed because he was a boy, and my eldest is a girl, our diagnostic team said ASD so mild he doesn't need a DX 12 years ago, but he was diagnosed with sever autism at 13.

 

Processing can be generally poor (DS1 in our family) , but also impacted by high anxiety (DS2).  Thinking about it maybe that is why DS1 has such poor processing skills; he's permanently anxious :Duh:  That thought hit me as I typed.

When given 2 options/choices DS1 is more able to give an alternative than if we give open choice.  So asked would you like an apple or a pear he will reply banana; given the option of any fruit gets no answer, but offering a banana with no other option is likely to get the response no IYKWIM.

 

This is a great site, though somewhat quieter than it has been previously.  if you search key word using the search box on the top right of the page you can find a wealth of information.  


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#5 Maverick

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Posted 28 November 2015 - 01:24 PM

Hi, aswell as the above I would explore whether he actually understands the different feelings and emotions he is experiencing including the physical symptoms. Ev tiredness - heavy eyes, weak limbs, hard to think etc. If an asd child doesn't understand some feelings this shoots their anxiety levels up. Also routine and consistency and predictability is key. If your child knows what is happening each day this can help hugely. Also the child knowing what is expected of him in each social situation can help. Rigid/flexible thinking family rules work well as well as using social stories and comic strip conversations. We also use an anxiety level measure so if my son is struggling he just says a number to me and I know how bad he is feeling and can immediately try and manage the situation without him having to try and explain.
All works well to help here... Sorry if I have waffled on lol.
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#6 tracky2

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Posted 28 November 2015 - 08:20 PM

Thanks Maverick, the trouble with L is he often looks like he understands things and has very good language skills that i guess i forget he me not be able to connect exactly how he feels.  This weekend L has been quite agitated, not meltdowns as such,  really struggling to take direction ( afraid i have lost it more often than not this weekend, guess were all a little fraid at the edges  :wall )

Hes quite emotional crying alot and falling out with everybody the problem i am wondering now is if something happened at school. the teacher hasnt mentioned anything lately but it may be a possibility?  I do have the feelings chart and things but when i showed him it he just gave me it back saying it wouldnt help. OOh actually just thought whilst typing his we sister got a big cuddly dog at Ikea as a treat the other day when he was at school and this appears to be where it started.  I tried to go for the sharing the pet etc but L's became fiercly attached to it and its causing grief, he never liked cuddlies before so we never got him one the other day.  Hmm typical, now hes just moody with everything and everybody.  Had to stop K from taking it to her aunties tonight because it was causing war.

 

I am curious to know how you manage different situations with your son, I seem to be trailing behind with this and we are in it with L before we know it. Night time is his worse time for anxiety  and as youve read I know put things in place to ease this but otherwise I am unsure how to progress. I have looked at PECS and things but haven't put anything in place because i dont really know what i am working with yet, he hasn't been seen by anyone yet regards DX.

 

What i am finding difficult is working out the possible ASD behaviours and the typical 6 year old noughties.  I think maybe working on the boundaries might help but dont know quite how to work them around a possible ASD child? I would normally directly work with the 6 year old stuff through taking away tv time etc but feel that sometimes it appears that me doing that does not achieve anything, when he was younger the noughty step etc didnt work.    Can you give me an example of famliy rules, that sounds like something that could be useful?

 

I think i need to work on my tolerence aswell, think more wine might help ^_^  

 

Love your juggling ICON Maverick that is exactly how i feel most of the time although i think my balls are scattered lol



#7 bluewater

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Posted 29 November 2015 - 10:28 PM

Hi tracky2,

 

What you say about boundaries was certainly true for ds1 (now 14). We struggled (and still struggle) with boundaries, and couldn't understand why no parenting suggestions worked. Time out was hopeless as were star charts or consequences for actions. Sharing was a major issue. I don't have an answer, we only started to understand more when he was dx age 10 and more recently realise he has some aspects of pda as well as ASD.

 

I hope someone on here can give you more practical ideas...


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#8 tracky2

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Posted 29 November 2015 - 10:53 PM

thanks bluewater all advise is helpful :)



#9 imperfect parent

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Posted 30 November 2015 - 12:31 PM

Time out doesn't work for mine either, but rewards and earned time do.  It's not as effective now, but it has worked well for many years.  The skill with reward is that it must be achievable so small steps are rewarded and nothing is ever removed.  Some people use beans, marbles etc, I used small stickers, tick sheets and even spots on a dalmation ( 3 yr old at the time of 101 Dalmations film)

 

Rewards to be earned varied from computer time in hour slots to items they wanted.  To earn rewards it was doing as asked, having sufficient drinks in a day, going out side for walks, small household tasks. You can tailor it to your child and tweak depending on how it works. If you are open and honest with him then you will be able to work out a good reward system together.



#10 tracky2

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Posted 02 December 2015 - 10:11 AM

That sounds like something we can do imprefect parent, we tried the marble thing before but he lost interest and rewards charts loose momentum aswell.  think maybe a lego jar might do the trick where he does what we ask and he gets a lego brick in his jar, he will get the extra reward of playing with the lego at the end aswell as set reward if needed, might just be enough of a motivation.  I like the idea of using it for things like going out for walks, small chores etc.  These things are a battle in my house anyway, why would we go outside and get fresh air? :) Lucky he isnt in to the xbox yet , altough weve got one its the Ipad in our house.

 

i have also decided to work on the house boundaries, i was picking up on them any way but L probably needs the prompts now on his expectations, that we dont want him to be cheecky, talk back or lift his hands and keep to set bed time during the week where, he tends to want to hit out although gently and controled at the moment when he feels you are making fun, humour very much an issue in our house, so i guess i have to calmly remind him that we do not lift our hands?     The rest we can negotiated depending on how is anxiety is being managed that day to what we expect from him the jar reward should help with that right?

 

I have looked in to trying pictures regarding routine Maverick and have put tgether a make shift communication folder and plan on using it where i feel his anxiety is higher causing him to require a pictorial prompt.  Hoping that verbal prompts and repetative words will get us through the days where he manages better.  i am also going to establish the feelings board hopefully he will begin to let us know how he feels before the anxiey hits.  I've came up with another idea not sure if i read it from one of you guys or not but basically its establishing keyrings where i can attach them to his school bag with pictures and words on with the items he needs to remeber to bring home, we struggle with remebering homework jotter, packed lunch, bottle water etc.

 

Its funny how just listening to you guys and writing in reply makes things so much easier, i can think clearer to what i need to do its less of a muddle :)  Oh and forgive my spelling i cant ind spell check on this this thing yet  :mellow:



#11 Maverick

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Posted 03 December 2015 - 03:23 PM

Hi Tracky,  Sounds like you are putting things in place.

 

When J was L's age we concentrated on 'start' behaviour to create some positivity and increase his self esteem (if low is very linked to anxiety) so we weren't getting down all the time about things that were going wrong (eg meltdowns).  So we picked three things we wanted J to start doing (things that were easily achieved) like being kind to his sister.  We agreed with him what these things were.  Everytime we spotted him doing this behaviour we rewarded him with a 'catch me' card.  J would collect cards all week and the idea is you hand out a lot!  At the end of the week we would count them up and then he would receive an agreed reward.  In our case every card counted to one minute staying up late.  You have to agree the start behaviours and the reward with L before you start.  This way L is so busy concentrating on getting these cards he is not thinking/worrying about other stuff.

 

With regard to the feelings chart etc I always have to remind myself to use child appropriate words.  A child might not really understand the word 'anxious' but will find it easier to understand 'worried'.  A feelings dictionary is another good thing to do together to explain what the word is and what the emotion feels like.

 

The rigid/flexible rules are for teaching children what is expected of them in the home.  Rigid (red) rules are non negotiable like 'you must never open the front door unless Mummy is with you'.  Red rules must always be followed.  Flexible (orange) rules are rules that are usually followed but can be bended sometimes like ' you usually go to bed at 7 pm but at the weekends we may let you stay up later'.  The idea is you sit down as a family and create the rules together and all must follow them.  Only do 3/4 of each to start with as L is quite young.  I find it reassures my J, he knows what is expected and doesn't have to worry.

 

Are the keyrings called TomTags ?  I have seen them and know of others who have used them.  Hope they help.  Anything you can do so L knows what is happening, that there is consistency and routine for him and there are no surprises will help enormously.

 

All of the above is part of a 'low arousal' technique where you are trying to reduce/prevent L getting to the stage where he melts down and it all becomes too much.  It might also b a good idea to keep a behavioural diary for the times it gets too much and write down what, where, when, how it happens and overtime you might be able to spot patterns of why its occurring.

 

Most importantly remember you are doing a brilliant job and your boy I am sure is wonderful.  You cant fix everything at once as you must look after yourself too.. just pick one thing to set up at a time... all of the above are long term strategies.

 

Waffling again lol I am off to juggle. :-)


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#12 tracky2

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Posted 03 December 2015 - 07:06 PM

Hi Maverick, hope your juggling balls are all in order  :) and one thing you do not do is waffle.  

your posts are always full of great ideas.

 

Weve had a good couple of days, hope you have too.  Been working alot though Yawn



#13 Maverick

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Posted 03 December 2015 - 08:08 PM

Its been a long hard week...too much work !  Cant wait for the weekend to come. x So glad you have had a good few days.






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