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After Some Advice Re :- Non Asd Young Person


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#1 sonia07

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Posted 20 August 2013 - 05:26 PM

I am having major problems with eldest (big foot) he has MLD and is quite reluctant to go out but when he is at the activity/place he has to get to he is ok. He shuts himself off from every one every day and is reluctant to talk about it.  His self care needs is a issue and his eating habbits are a issue that dietician and dentist have warned that next visit if they haven't improved he will be taken off their lists!!

 

When reminded to brush his teeth, have a shower go and get ready for a appointment he goes off on a right rant, he moans about the nagging etc which has to be done otherwise he wont be doing anything through the day or night. He has to have 1:1 even cleaning his room has he just cant stay on task. His social skills are such a issue I have had to call adults disability team for another assessment and a carers assessment has he just wont go out and socialize.

 

On top of it all his support worker is constantly having ago at me has he isn't following her daily timetable she done for him (i.e. have breakfast, get wash/shower, brush teeth, put on clothes that are clean and ironed etc etc.) I have tried so many times to get through to her what he is like that I feel like I am banging my head against a brick wall :wall .

 

I just don't know what to do with him!!!  so far haven't heard anything from ADT (only for other sibling) , just feel there is something else is there not just MLD, even my parents are seeing his issues has more severe has the others .

 

Anyone have any ideas how I can get a 21 year old to start caring about his own care needs without me having to keep being persistant and he still refusing.  He has put on a fair bit of weight lately has well cause he wont stop eating and drinking (pinching foods/drinks) for other siblings out of the cupboards/fridge and freezer.

 

Just feel at a total loss with him!!


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#2 imperfect parent

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Posted 21 August 2013 - 06:54 AM

No advice, just sympathy.  

 

If only it was as simply as putting up a timetable.

 

To me what you have written sounds as though there are other issues stopping him complying, not just knowing what to do.  The eating and refusing to go out may be linked to anxiety which becomes a vicious circle as pressure to conform increases anxiety and makes conforming harder.  How does a visual timetable address that?


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#3 sonia07

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Posted 21 August 2013 - 05:10 PM

He went off on one several times today while out food shopping for him and the rest of the family. trying to teach him healthy eating and it didn't go well at all, he then stormed off half way through loading his shopping on the belt leaving me to it all, then a short while late I find him sitting on the packing table and get a call that son no 2 has been mugged just around the corner from home, feel like the whole house is like a ticking time bomb!!!!

 

Am very worn out and my arthiritis is playing up in my arms I wanna crawl into bed and shut away for a day or two!!!



#4 madferretlady

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Posted 22 August 2013 - 10:49 AM

gain - no advice just sincere sympathy and total understanding as I am having exact same problems!! My daughter (13) is exactly the same. She wont wash, brush teeth, shower, change clothes............ etc etc etc. Her room is beyond disgraceful. I can't bear to open the door or I would cry. She won't socialize - & has now become "school phobic" too.

 

She was originally diagnosed as ADD (without the H) and some asperger traits. the more I learn about ADD the more I understand about my child. She cannot focus on anything she has no interest in. I enrolled myself on a parent ADHD course as I was at my wits end with frustration at her. I have now learned to really see that she is not deliberately being difficult - her condition actually makes her incapable of stopping her mind from sliding away from the uninteresting task in hand off into her own world. Her mind is like a light switch. She is either "on" or "off" - ie completely involved or completely disinterested. If your boy is not interested in all the personal hygiene and heath bits a stupid chart is not going to change this! Moreover all the nagging will only make him feel pathetic and a failure as no matter how hard he tries he still can't manage to summon up the ability to focus and conform. At least it did with my daughter - I nagged, shouted, bribed, cried, blackmailed - to no avail. All I did was make my child feel like a failure. She actally had a breadown and ended up on anti-depressants so please please please be careful with your son. If he is like my daughter he will not be able to make himself conform no matter how much he wants to to please you, and he will feel a failure as a result - other people can do this , why can't I? what is wrong with me?

 

Ok - so my advice is to stop the charts - he is not 5! But I do not know what you actually can do! You have to tap in to what interests hims somehow and I am still trying to work out how to do that with my daughter. I have let her get her hair dyed strange colours and she does seemsto be more interested in keeping it clean now, but I still have not yet worked out how to get her to brush her teeth or change her clothes. However since I stopped nagging and making it a big issue our relationship has improved, and I have been able to just say casually "£go do yor teeth before we go out" and she has gone and done them. But still a long way to go. it is desperately hard not saying anything which sounds critical of her when her breath smells and you get a whiff of BO.!

 

As for the compulsive eating problem - well my daughter is ok this way, but my ADHD son is exactly the same. I have had to stop buying biscuits, crisps etc as he would eat the lot. i have to hide food ( he would eat and entire family pack of ham in one go). He is 9 and very overweight and I really do not know what to do with him. All advice appreciated. I sometime wonder if he is self medicating - ie seeking the stimulation he so craves from food. 

 

I am not sure how a chart is supposed to help your son! I could make charts until doomsday and my daughter would not be able to adhere to any of them. I get so fed up with the wonderful "theories" of the experts, and the fact that when they do not work fail it is somehow my fault and my daughters for not trying hard enough. 

 

My daughter hates social situations - and with good reason. She has tried so hard to fit in for so may years and somehow never quite gets it right and ends up being ridiculed. Social situations are not fun for children like her - they are dreadfully hard work and very stressful. Don't let yourself be pushed into making him socalize. Socialization is only good if it is positive - if it is negative then it can be harmful. As I said my daughter is now school phobic as a result of my forcing her to go to school when it was becoming clear this was causing her a great deal of anxiety. You know your child best, and it is a sad fact that the experts are often no such thing - it is we who have to educate them. Our wonderful ADDNI charity in N Ireland runs youth clubs where it handpicks which teens go together - thus ensuring that the children are in groups where they are all similar and thus "normal" . This is the one social setting my daughter likes going and relaxes. I have now stopped pushing her into other settings as I have come to realize how stressful these were for her. It is so important to feel "normal" and not always different.

 

 

Interested to hear how you get on!



#5 sonia07

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Posted 22 August 2013 - 07:34 PM

Madferretlady with his food issue I am gonna ask doctor if it could be prader willis syndrome, it was discussed years ago has dobey officials though son no2 has it has he is overweight (he has same build has his dad and his uncles but don't eat excessively and is more active).

 

I know there is something else there just don't know what when I did question it many years ago I was old its just his moderate learning difficulties and all children/young people are different but I know it isn't just that iykwim.  His support worker he has at moment has been verbally laying into me infront of him and k/d and other members of the family has she thinks I have given up!! She doesn't realize how much I do , did have to stand back recently due to my own poor health.  I am currently awaiting for a family support worker from mencap who hopefully will be working with all the kids and not just one specific child, they seem more friendlier has well and am trying to find some evening clubs for him who pick him up and drop him off so he has less stress of going out and getting their on time. (just trying to seek funding ).

 

My son goes off on a verbal rant everytime he is asked to do something whether its for himself or a chore he often disappears while doing things around the home (disappears around the home) often wanders off when out has well. Even today he was supposed to attend a meeting with his support worker about a trip to drayton manor all the clients have next week he left at a reasonable time didn't turn up there but arrived home 4 hours later saying he went there!!

 

Things are really hard and not just with him, son no 2 had to do a video interview with the police today and his anxiety was way high, he done really well considering and is calm has anything now (he got mugged just around the corner from home yday!). If I do find out any ways to deal with his issues I will post !

 

good luck



#6 madferretlady

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Posted 22 August 2013 - 11:01 PM

gosh you have your hands full!

 

Your son sounds more & more like my daughter. She disappears when asked to do stuff, wanders off, didn't turn up to music classes in school when supposed to (& like your son would tell me she had been there). It is incredibly frustrating - I am not the most organised person in the world myself (I know where she gets her ADD from!) and I find it so hard to remember to keep checking she is doing as she was asked (like getting ready to go out) - & she usually isn't. I don't have as big a family as you - just 5, ranging from 21 to 9 years old (though all have disabilities of some sort or another - ME, ABI, ASD,ADD & ADHD.) but still with everything else I have to do it drives me mad having to constantly remind her and check up on her.

 

I am working hard to see what our ADDNI group calls "the child behind the behaviour", And trying hard not to take every failure to do as she is told as a personal slight.  Trying to put myself in her shoes and see the world from her perspective, to understand WHY she is reacting as she is to any given situation. It isn't easy but it can be an eye opener. I didn't like myself very much when I looked at myself through her eyes - always impatient, criticising, frustrated and actually quite resentful that she wasn't a more co-operative child. I am trying to stop making her do or go to things just because I am told by Tom, Dick and Harry that she should because it would be "good for her", trying  to listen to her and what she feels about things, ie give her some control over what happens to her. And do you know what - our relationship is improving. She is starting to see that I am in her corner, not just one of the many people trying to get her to do things which make her anxious. As a result she is starting to tell me bits and pieces - eg why she hates going to music, rather than pretending to go but hiding. We still have a long way to go but we have started down the road.

 

Don't know if this helps but it is my own experience.  


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#7 sonia07

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Posted 23 August 2013 - 07:55 AM

It def does help, my eldest is not much of a talker only when it comes to expressing his frustration!!  Just like son no3.  I struggle to see through his eyes but do try, just have a brain like a sieve. He does ask to go to the gym but when the open sessions have finished and when he wants to go in the mornig with his brother they both refuse to get up then I get the backlash from them both.

It is very hard not just for me but for all of them and try and help them with what they want to do, He isn't good with  money and is eager to go shopping on his own but just isn't able to and really finds that hard to understand!!

 

After what happened to his brother the other day its very scary to just let them go to the shop on their own and now I feel I need to try and hide their vunerability to stop it happening. They all have gone through so much (been glassed in  the eye for sitting on the bus, threatened with a knife , verbally attacked and physically on the bus, attacked just a short distance from home on way home from school (son no 3) and was left with a broken cartlidge in his nose, forced to leave college cause they have issues socialy, and recently mugged while just getting a drink from local shop!! I just feel the need to do something but am struggling to grasp what it is, I try to give them some rules before they go out so they are safe but they laugh and run off. Life is soo hard when they don't understand



#8 madferretlady

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Posted 23 August 2013 - 10:09 AM

I am not surprised they have issues socially - apart from their conditions they have had pretty dreadful experiences. I do not know what to say. So far my lot have had nothing like this. My 13 year old daughter was systematically bullied (physically & psychologically) throughout primary school, and has ended up a nervous wreck about social situations of any kind.  But none of my ASD/ADHD children have experienced aggression from strangers - possibly because my oldest two are neuro-typical and pretty self assured and are usually with them?  

 

I am sure you are at your wits end. My heart goes out to you. I cannot presume to give advice as I have not travelled this part of your road. Anyway I am sure you have tried everything - all the social stories etc.. My ASD boy doesn't go shopping as such - he is allowed to get his clothes etc online - he has his own card with a limited amount on it. He really enjoys this as he doesn't feel pressured by having to talk to sales staff, having to manage crowds or make decisions quickly. He can browse for as long as he likes and take as long as he wants to decide. Might this be an option for your oldest to let him feel he is doing his own shopping, and being trusted to take some control?  

 

I know what you mean about your brain being a sieve - I remember nothing these days. I don't know how much of my scatterbrain is due to my innate personality and how much is due to stress and depression.

 

I also understand the frustration you feel at being made the scapegoat for people not getting out of bed. Happens here too. Husband and 3rd child are the main culprits. Actually lost temper with them about this -told them they were big enough to tell themselves to get up, that I would accept responsibility for wakening them and for one reminder and that that would be it. After that it was down to them. I do have to make sure I always remind them of this arrangement - I say that it is time to get up and that I will tell them again in 10 minutes and that that will be it. Sometimes it works, sometimes it doesn't - but I am trying not to feel guilty when they are late for things. I cannot be responsible for absolutely everything. And neither can you - you will make yourself a nervous wreck.

 

It was alot more difficult to stand back when it is 13 year old not getting out of bed for school however! She would have been perfectly happy to lie in bed day after day & never go. Cue the nagging, shouting, pulling out of bed and pushing out the door onto the school bus. Exhausting for both of us. However as it turned out I should have realised there was something more going on than wilfulness and laziness - she hated going to school because the social interactions overwhelmed her. She had no friends and was desperately alone and unhappy. 

 

So I suppose my point is - sometimes you need to stop in the midst of all the "here we go again" arguments and think. Is there another way this could be done? How else can I approach this problem? Can I give my children some degree of control, and thus relieve my self of having to be responsible for everything all of the time? 

 

I read somewhere that if you tell a child a thing the same way a thousand times and he still hasn't taken it on board, it isn't the child who is the slow learner! I think that is brilliant and I know it applies to me. When I hear myself saying "I keep telling you...when will you listen...." etc I now stop and think!

 

My daughters scenario serves to remind me that sometimes the problem isn't getting the child to conform to x,y or z. There is something deeper going on. The refusal to co-operate is just a symptom of a bigger issue lurking underneath the surface.

 

I am in awe of you - I do not know how you manage 


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#9 sonia07

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Posted 27 September 2013 - 08:07 AM

I question every day how do I manage, we have finally got a referral after 1st doctor refused but 2 days later done one without informing me.

 

Sw said they don't fit the criteria for direct payments has they don't have a learning disability (oh yes they do) they can access the community with out support (no they cant because that's what me and support workers are doing! deerrr!!!) . They have access to clubs etc  (they only started going to a drama club last week days after we saw her and they don't like it!!!). Cant understand some people who quickly judge whats going on and think they have access to everything has it is and and are greedy asking for more!! (they barely have access to anything!). Once again sw wants to refer big foot to 3 additional services that will be too much for him to handle all at once hence the reason I require direct payments to control it all!.

 

I have asked for a carers assessment but no reply about that!

 

 

After the big kick off (by myself and support worker ) last Wednesday in front of social worker :sofa:  things ain't the same with his support worker, am looking into getting a advocate for ds1 and ds2 and myself has I am not being heard at all.  I am trying to get rid of both support workers and fight to get direct payments for them both so I can access support for day/evening time for them and hopefully they will be able to move on gradually!!

 

Had to go doctors has was on verge of cracking up due to high stress levels this week, which has also been making me so ill I cant leave the house!!

 

We now have to referals for assessment for possible asd for both ds1 and ds2 and different places, hope there isn't a long wait for this!!!

 

Just gonna take one day at a time and hope things try and improve! (wishful thinking eh!!!)



#10 Tangled

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Posted 27 September 2013 - 08:18 AM

Hi

Sorry that services which are supposed to help you are making your life worse.

I think the one day at a time outlook is needed from time to time as always looking at the big picture and what will be best for the future can be overwhelming. You have enough to deal with day to day - you need to do whatever you need to do to look after yourself first - you won't be fit to help your children if you don't.

I'm trying to be day to day at the moment too. Things are feeling very stressful - and that is with one SEN child and an NT one. You do a good job balancing all that you have got on.

Tangled xx

#11 Dizzie1

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Posted 27 September 2013 - 07:27 PM

Hi Sonia

 

Sorry I don't have any advice, just sending hugs.  Wishing you better days and hope

things begin to improve.  Do hope you get the Direct Payments and the assessments don't

take too long.  As usual, its the waiting that doesn't help, whilst day to day you manage. xxx



#12 sonia07

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Posted 28 September 2013 - 11:54 AM

Thankyou ladies for your support :)

 

I have some one trying to look into things for me from the local childrens centre who I usually see for sleep clinic and she runs the local asd support group, She has taken some of the stress off me (wonder if she would like to be my pa!!!! lmao).

 

Managed to calm myself down this week by doing everyone's ironing (you really wouldn't want to do that!!!),  was so stressed out that I was just feeling sick at the thought of having to go out!!!  Now I have 5 rooms to decorate I have set myself a finish time for all 5 so hopefully that would direct some of the stress (room one started yesterday!). All have to be done by end of November and am looking forward to it all, even got some of the older ones helping and k/d will do flooring for me :).

 

Got so much on with all the kids I have now been volunteered to wash 6 football kits!!!!  k/d is in s**t street for that!!!  Kids started back at football today so no extra sleep at weekends now :(.

 

Waiting never seems to help at all just makes me a bit more stressed has I have to continue dealing with their issues without any recognition or support!



#13 imperfect parent

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Posted 01 October 2013 - 02:59 PM

It just all gets too much sometimes for all of us.  Slow it down and try to tackle fewer things at once.  I was going to say one thing at a time, but that would take forever with your brood.



#14 sonia07

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Posted 02 October 2013 - 07:25 PM

Could never see the end with my brood IP.

 

Support worker has done a letter for supporting assessment for eldest and not happy with it at all. I don't feel its supporting it at all just pointing out that home id the wrong environment for him (I think that's what she is trying to say!)

 

Not sure if I should use it .

 

I have had to try and rest for 2 days has just so exhausted by whats been going on and has took  6 hours just to get eldest (big foot) down stairs today!!!






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