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Post by larsti on Jun 2, 2014 22:32:53 GMT
I don't quite know where to start but I have been feeling more and more that we are constantly reacting to Dash's behaviours on the spur of the moment as it were. It all feels a bit out of control. As an example, say I was taking him into a supermarket I seem to constantly be saying, don't do that, don't do the other and if he doesn't do it again, he will do something else instead. There is no point whatsoever in saying something like 'if you are good you can have a magazine' That's not how we tend to parent anyway. I did one day threaten to put a magazine which was already in the trolley back if he didn't stop being 'silly'(rather vague and unsatisfactory) and then I did end up putting it back. I don't think that achieved anything really. He has such a large repertoire of 'silly' things he does, telling him not to be silly is rather pointless. Today he could have knocked some bottles of wine off the shelf by pushing the trolley quite forcefully  If I say 'hold onto the trolley', he can still push it/pull it, stick his foot under the wheel so that the trolley stops suddenly, which can be quite painful on the stomach  Anyway, he lets go of the trolley and I have to keep reminding him. It is very wearing. Another example would be behaviour in church. I feel that I am not sure really what we expect of him. Obviously being quiet. Sitting still is not such an issue as long as he's quiet. We sit in the back row so we are not so visible. He has a DS which he is allowed on silent now which has helped a bit. What I am saying is I think, I/we don't know what we expect of him really, and if I decided, say, I want you to sit on the floor cross legged in church (I thought of getting a square of carpet which would be exactly were he is allowed to sit) that wouldn't work anyway. I would have to keep telling him again and again to get back on the mat, whereupon he might tell me rather loudly that he hates me. He likes to sit on our laps in church (he is small for his age) but he's all arms and legs and will fiddle with my jewellery (He once whispered to me 'I am going to break your necklace' whereupon he did ) He tries to lick me and all sorts. We were at a concert put on by our home ed group once. Dash was sitting on his Dad's lap. All of a sudden, DH got up and took Dash outside, looking very angry. So in the interval I said to DH 'try not to show your anger' He then showed me the teeth marks in his arm. Even I hadn't seen what had happened and I was sitting right next to them. Mealtimes are usually a nightmare too. He is 'sensory seeking' which is part of the problem. Also difficult to know how much he is capable of doing (or not doing!) And difficult to know how much he actually remembers so we will give him another reminder of expected behaviour (which drives BD mad as we are 'soft' on him). Part of the problem is there are so many behaviours, some just irritating, some potentially dangerous, or emotional stuff like being cheeky or saying 'I hate you' . Someone told him off in the corner shop the other day for speaking to me so rudely. They meant well, but it could have got very difficult if Dash had not just wandered off without listening I get so frustrated when I give an example say to a paediatrician or OT and they come back with something unhelpful. I told the OT that he had tried to bite me when I ruffled his hair which she put down to the fact that he hadn't realised what I was doing when my hand came towards him. That seemed wise and then I realised he often does a sort of snapping thing. Its not exactly biting, but you have t get your hand out of the way quick....and it seems totally unprovoked by anything. I feel that he is leading us a merry dance at the moment. Its just the overwhelming nature of it. I don't know where to start. For one thing I could stop taking him to supermarkets which would be relatively easy to do. But really its a case of feeling we are ineffectual And I don't like seeing Dash getting the better of DH, especially. |
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Post by sooz on Jun 2, 2014 23:00:33 GMT
Have you been reading my mind?? So know where you are coming from on this. Just lately I feel I'm just a big bag of reprimands!! It's constant.
Ok, so I'm going to say something probably quite, erm, well....
If my ds was with a different family, one who's rules on behaviour wasn't quite so firm, would he fare better? Would he just be one of the gang? I think what I'm getting at is that he has to be capable of adhering to my rules for it to have a chance of working. I just don't think he's capable. And, am I setting him up to fail because I expect him to behave in a certain way?
Don't get me wrong, he's good, often, but it seems to take a lot of effort on his part to maintain it and constant vigilance from me. I'm starting to think this is no way to live but I can't get my head around the alternative.
We had an incident yesterday, grandma took him out and at one point he told her to 'shut your mouth'! Where he got that from I have no idea, I'm horrified, grandma was in tears (judging looks from people nearby and my mum can't stand that, she says it's because she doesn't want people to think he's a horrid boy, but I think it's more the reflection on her that gets to her) so she brings him home with him pleading not to tell mummy. If I'm not there with the constant vigilance it all falls apart.
So he's not learning is he? It's just being managed.
And I think that's the problem, those expectations we have, the set of rules, the politeness, manners, kindness......all the things we'd love them to have and our hopes that repetition will instil in them, just ain't working! So where do we go from here??
Wish I had an answer. Xxx
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Post by serrakunda on Jun 2, 2014 23:24:23 GMT
I recognise quite a bit of what you describe. Simba is sensory seeking as well. To be honest wouldn't expect Simba to sit still or be quiet in church even with a DS. I don't go church but it's bad enough getting him to sit still waiting for an appointment at the dentist etc where he doesn't have to be particularly quiet. I tend to avoid things where I know he just isn't going to be able to 'behave' . I don't take Simba to the supermarket often but when I do I let him push the trolley but stand to the side and keep a hand on it so I can control it. I also dont go to the supermarket 'cold'. It's always after swimming, or if it's local,shops we've walked there or he's scootered. Maybe you could give give Dash a shopping list so he has something specific to focus on in finding the items. I've also realised that Simba's ability to 'behave' nicely is time limited but in quite an odd way. So for example as I don't drive we spend a lot of time on buses and trains. He always has things to do but will get fidgety. But it doesn't seem to be related to the length of the journey. So he can sit quite happily on a train for three hours and spend the last hour being a right pain, or we can be on a 20 minute bus journey and he's fine for 15 minutes and the last 5 he starts getting fidgety. If we have to do anything where he is confined in any sense for a period of time, I try to make sure he's had a period of activity immediately before or after.
I've found Simba's behaviour far easier to manage by basically working him into the ground! We do a lot of exercise, I don't drive so we walk a lot, he scoots or carries a backpack. He swims at least twice a week, has a weekly session with personal trainer, he is starting tennis lessons this week. He has the trampoline. Basically any opportunity I get to do something active with him, I take it. It tires him out which helps in itself, but satisfies a lot of the sensory seeking behaviours. Sometimes it's difficult to get him out there but I make him do it. It's quite interesting seeing how his face changes in the middle of some intense physical activity, he is definitely on a 'high' , and his behaviour is overall is much better for it.
I don't get though is the general rudeness, bad manners though, he has his moments but on the whole not too bad there.
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Post by doubletrouble on Jun 3, 2014 8:03:25 GMT
It's so difficult trying to control a child who does this. It really used to wind me up and I have walked out of a supermarket and abandoned the trolley on more than one occasion. I found the only thing I could do was tell him I couldn't continue with this behaviour and we would be going, I said this two times then on the third I followed through. I found the fewer words the better. I try very hard not to engage with him at all when he is abusive or silly. I just continue what I am doing - getting him dressed - yes I have to help him get dressed in the morning even though he is 11 - telling him to get dressed again and again makes no difference all you get is a load of abuse. I'm afraid I have also realised that I was suffering from stress and have ended up with anti depressants which have made the whole situation bearable and enabled us to carry on in as calm a way as possible. No matter how often you told them off they just start again within seconds. I started looking at symptoms of types of disorders like ADHD, sensory processing disorder etc. and found DS fitted the profiles of several of these. We were then able to go to CAMHs and discuss this, at which point he was assessed for Adhd first and then we were able to get a better O.T. who assessed his sensory problems in more detail. It was found that he had problems in large spaces, crowds and confined places with noise. So we had adjusted our expectations of what he can cope with. His ADHD meds. turn him into a 'normal' child - half an hour ago he was calling me an f--ing B. and telling us we will die and he was going to kill the dog. We get this most mornings before the meds. kick in, especially when he is more anxious - he is having exams today.
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Post by larsti on Jun 3, 2014 10:25:40 GMT
All of that is SO helpful...thank you.I think I just wanted to try to get my thoughts in order (as well as practical advice) and your comments have given me something to 'grab hold of' (like a life buoy!!) I have never thought of leaving the trolley behind doubletrouble but you know what, I have often felt a sort of panic that I don't know how I'm going to cope until the end of the shop and get through the checkout without going berserk  I never do a big shop with or without Dash. Its always a small trolley. Serrakunda, he probably could do with more physical activity some days. When I have taken him shopping on the way home from swimming lesson or football, it doesn't seem to be any better but I will make a note to fit more activity in because that is something that could be improved. Thanks for reminding me about meds doubletrouble. The FASD specialist told us that he doesn't fit all the criteria for ADHD of autism which he was screening for as well, but has traits of both. I wonder if the paed would prescribe meds for him without an ADHD diagnosis? I think part of my problem currently is the feeling that we are failing. He is getting older and things are not improving, if anything getting worse. I do find getting my head around the fact that he 'can't help it' difficult. Its knowing what is reasonable to expect. It goes against the grain to do nothing. I totally agree with your post sooz. I think yet again its going to be us who have to adjust and change our thinking not expect him to IYKWIM. I used to appreciate Garden's comments about not punishing her children. That was always our inclination up to a point (with BCs) Even with BCs I am not convinced that taking something away after the event will help them not do something next time, especially if its something they've done in the heat of the moment. I am also getting more comments from others. They are great at church and very tolerant and supportive, one lady plays at ships with him every single week after the service. They sit in the old fashioned pulpit and sail away somewhere The service lasts an hour, 30 minutes of 'sermon' which DH often does so I'm on my own then. On one occasion I was ill and DH was speaking so he took Dash with him, having checked that the sailor lady could sit with him. He was much better with her. 2 elderly ladies who sit in front of us every week were telling me on Sunday that he needs to go to school so he can learn to concentrate. I used to take him out and do something with him during the sermon but that wasn't very satisfactory for me!! He loves going and has some jobs....taking the offering during which he pretends to be a steam train (I told you they were tolerant!) and handing out the biscuits at the end. There are only 2 other children, Violet and her friend who is the same age. I used to be a lot calmer than I am now and DH gets irritable too. Oh and back to meds. Coming off the anti Ds now. Went to the GP to say I am happy to stay on them thank you very much and she asked me how life was. I told her much the same. 2 major stressors, Dash and DH's working hours and neither of them are going to change in the near future. And she said well then if that is normal life for you, then best come off the anti Ds!!!! SO I got a prescription for a lower dose. I think she is right though. No adverse affects so far from lower dose which there was last time I tried to come off them. Thank you so much all! |
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Post by larsti on Jun 3, 2014 10:31:58 GMT
Toko thanks for reminding me of telling them what to do rather than what not to do. I could do that much more. I remember ham saying a similar thing and saying that if you say don't do x, it is x that will stick in their mind, so better to say do y. I do try to say 'walk' rather than 'don't run' when I've sent him to get something i supermarket which strangely he is capable of doing, although sometimes with accompanying siren sounds  |
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Post by wibbley on Jun 3, 2014 11:09:41 GMT
Got another one here too Larsti
I switched to online food shopping several years ago. It was hellish and supermarkets do totally overwhelm DS.
I know at times it's me that needs to ignore/walk away, but there are days when it just chips away and I finally loose it. Yesterday was one and ended with me getting cross and shouting during dinner because DS WOULD NOT take his hands out of his mouth when eating.
It's behaviour I cant comprehend - yes I know the hands in mouth is sensory behaviour, but why not stop when asked? Why in fact ramp it up to the point where I get really angry? Agghhhhhhh! DD left the table at this point and went into another room, then later said to me "you should ignore him, he does it for attention"....that's a 7 1/2yr old DD telling 42 yr old mum!!! Of course, she is right.
The "walk" rather "don't run" works for DS, he needs to know WHAT to do not what NOT to do. But of course, I often forget this too. In fact DS loves loves loves to do the right thing and be praised. There are many times when he gets it so so wrong and it really unclear WHY he did xyz. They appear random acts and make no sense, I get cross. Everyone is upset. Sometimes later, sometimes WEEKS later he will say something that explains his way of thinking. I.e. we had a long standing issue with football, with DS just getting in trouble all the time for what seemed like random acts of impulsive hurting others. Then one week he said "football is about kicking the ball at others as hard as you can". On more questioning we realised that what he saw visually, kicking a ball into the goal and someone stopping the ball bodily to him translated as the right thing to do was to actually kick it at someone. We have also had similar issues over the game 'tag' which he thought was a game where everyone ran about hitting each other. To him, it is all perfectly logical. Those are 2 big examples, but I think in daily life he operates using lots of mini versions of his own reality. As he is not one for conversation, we usually are unaware of what his mindset it or why he does the sometimes very random things he does. My DS is unpredictable in behaviour, and I think precisely because of his lack of understanding of the world.
He is also a fidget and very impulsive. It's a good mix!
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Post by serrakunda on Jun 3, 2014 11:17:44 GMT
Do you have a local carer's centre? I accessed a great program from my centre for parents of children with autism/adhd etc. It wasnt about the conditions themselves, nor a parenting course, but focused on us as parents, how we feel about things, why we respond as we do, really about trying to rethink things, some relaxation techniques. I found it really helpful. It was run by our local univesity so I know was quite specific to our area but maybe there is something similar in your area?
I made some good friends and we are still meeting up every month or so for a coffee and to offload. A bit like being here its somewhere to say things you cant say elsewhere.
If you are home educating, when do you get a break to recharge, do you get anytime to yourself ?
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Post by shadow on Jun 3, 2014 11:30:51 GMT
THE WILD BEHAVIOUR IS REALLY HARD - oops - when they are disregulated I never found much that would work - many times shadette completely flipped so as she was at school I would do shopping without her - and kept to the local co op as much as possible when she was with me - they knew her and accepted her idiosyncrasies- and she felt safer there - if we were waiting to pay I found doing a shoulder massage calmed her
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Post by doubletrouble on Jun 3, 2014 11:43:20 GMT
Larsti you have always come across as the very capable caring type of person who is always helping others - the way you were there to give others a break at the recent camp is just one example. I have been told that the most capable people are the ones who are often more susceptible to stress and I find your Doc's comments a bit odd - this is normal life so you should be able to cope with it!! When you are like this people just expect you to be able to cope and we have a tendency to make light of what we are going through - I know I used to. It's not normal to have this constant behaviour to deal with especially if you are home educating so you never get a break - I couldn't do it. I am one of the mums who can't wait till the are back at school so I can get a bit of rest bit!
When was Dash last looked at re ADHD/Autism? he may have been quite young to get a true diagnosis. We were told that if he reacts positively to the meds CAMHs used that as a conformation of the diagnosis. and in my opinion wouldn't do any harm in trying.
Serrakunda - that's great about the carer's centre. It really makes such a difference when you have a group of people to off load to. It is just like therapy for parents and often you find out about other things people have tried or been to.
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badwolf
Bronze Member
Married Adopter and Home Educator
Posts: 93 
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Post by badwolf on Jun 3, 2014 11:58:53 GMT
My son is similarly behaved... Its the constant managing his behaviour.... It always feels so negative. You can never have to much fun or he gets so silly its annoying etc.. I stick my kid in the trolley with a book. He is still, quiet and it works. The trolley is a bit heavier and I have less room for shopping but anything to get the shopping done in peace. If its a quicker shop I can give him jobs and constantly remind him not to touch etc. but its impossible all the time.
Badwolf
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Post by larsti on Jun 3, 2014 12:42:11 GMT
This is so helpful  I cheat at home ed...first relaxed approach, second, we pay a friend to teach Dash 3 mornings a week and he also goes to her one afternoon to do school run/playground and tea with children she looks after. He has several friends there. I almost never have 'play dates' here. We go to someone else's house which in one case suits them too because it is an hour's drive and they have 3 under 5s as well as Dash's friend! Or we meet friends at a park or whatever....Mum is always there to look after their own children and have a chat with So..I do get breaks and my DH when he is home, although he always lots of catching up to do when he gets home, he will have Dash doing lego/brio in his office while I have my hair cut or whatever. I sleep a lot too! So this morning DH gave Dash breakfast and got him ready to go to friend's so I didn't see Dash until 12 So that's manageable. Actually DH has less relaxation than me, which is a worry I feel I shouldn't lean on him so much. Also he is capable of occupying himself...he is an inventor Give him some string and a roll of sellotape and bits and pieces and he will have a winch rigged up in no time. He will watch iplayer which is often educational (Dick and Dom Absolute Genius...I recommend that!!) So I can't complain too much. This is really helping because I am seeing a pattern....whereas I thought it was absolute chaos!! He can be a nightmare at home which is probably a cue for going out! But he can also occupy himself while I do something else while I get on with something else or doze in a chair  I expect they wouldn't diagnose ADHD because he can concentrate on some things? That's what I picked up from old boards anyway. Double trouble I used to be much more helpful than I am now (and it was nothing to take Sooz's son with us!!! How embarrassing! :  I almost never volunteer for anything these days in case on the day I am too stressed. What you say is the thesis for my favourite depression book 'Depressive Illness: The Curse of the Strong' by Dr Tim Cantopher. When there is meal at church, I let the other ladies do everything (too many cooks and all that!!) and my DD makes a pudding so that's our family's contribution. I did make a shepherd's pie once, but I don't bust a gut. That does cause a bit of an identity crisis but needs must! I take Dash to playground while they are getting everything ready and DH calls me when its time to come back! If I go down hill I will have no hesitation in going back to GP. Although she is supportive and referred us to Dr Mukherjee under NHS ( we were going to pay for assessment) she doesn't really understand what life is like. She asked me if I had explained to Dash that it was dangerous to pull my wire necklace from behind while I was in the driving seat. I was only trying to explain how life is so exciting with Dash, but she focussed in on the specific. Well, yes that was dangerous and so are lots of other things  There is a carer's group...not sure I can get to it on that afternoon, but I have a new friend that goes so maybe I'll ask for more info in case I can go sometimes. Sometimes plugging in to all the special needs stuff and adoption stuff adds to the feeling that Dash is the epicentre of our family, which is not healthy! And a problem for DD. This has been SO helpful, I can't tell you. Wibbley...Dash doesn't do the hands in mouth thing but other things which my DD cannot stand and sometimes takes her plate somewhere else. Except she says we should be doing something about it, not ignoring. I wish she could ignore (and DH, who is triggered more than me by the table stuff) Happy Days Love Larsti x |
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Post by sooz on Jun 3, 2014 13:21:38 GMT
Ooh see now I'm feeling bad. It wasn't a break I needed, I just can't walk that far, too painful....... Oh dear. I hope snooz wasn't a handful!
We do have success here with spelling out the rules before we do something, in a this is what you do way, not in a don't do way. He seems to manage, mostly, if he knows what is expected. The huge difference here is that it's just me and him, and that's manageable. Throw anyone else into the mix and it all goes to pot.
The other thing is, he can and will behave in front of me, but when he thinks I'm out of earshot or sight it can be a different matter!
Snooz can occupy himself, he will find any manner of things around the house to 'invent' stuff with. A ball of wool, Sellotape, the linen basket, sofa cushions, egg boxes, a rug..... He had a training session at the gym a couple of weeks ago and made a castle out of the gym equipment! In fact I may post the photo as it was fab! Fortunately the gym instructor loved it too!
With his behaviour though, I think I worry more about the future rather than the here and now, and where this is leading to....
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Post by donatella on Jun 3, 2014 13:38:58 GMT
Hi larsti, we have quite a range of different behaviours between dd and DS. Both asd, DS probably aspie. Plus ADHD. And I have to say I parent them quite differently. They both need totally different approaches. DS benefits best from a softly softly approach because underneath the asd and ADHD he's quite an insecurely attached child. He has a vulnerability that dd lacks - but also a certain charm which he's quite capable of using to his advantage!
Mornings are horrendous - transport picks him up at around 7.50 and until he's on that bus we never quite know how the morning will pan out. He takes priority every morning - everyone else's needs are secondary. I don't always like it, it's not always fair but it's what works. I no longer dress him - but he's 10 now and this is recent. I'm not allowed to see his privates any more (!) - I do, though, still have to put his socks on. Dd pretty much gets on with it with a bit of nagging.
I don't take him to the supermarket. He can now cope. I can't cope with him and end up tearing my hair out. She gets on my nerves but is manageable. Well, other than when she spots something that takes her fancy and wanders off.
I'm very firm with her. Short, sharp and very direct. She can be extremely inappropriate, say really silly things and, frankly, irritates people. I'm quite strict with that sort of behaviour and tell her it's not appropriate. She hates it and makes threatening gestures. But at least she's not physically violent.
They have both learned to self regulate to a degree. She goes to her room, throws some stuff around then gets into bed to watch cbeebies or a DVD. He'll go to his room and build something. I've learned to give them space - for them and for me.
I try to target one thing at a time and work on that - for DS, it's encouraging him to be more proactive in the morning. For her, it's to stop talking drivel to fill a space. She is a runner - she likes the sensory feedback - so we walk the dog along a safe path where dog and daughter can run safely and DS can scoot.
Other than that I let a lot of stuff go .... And if necessary use the 'oh they have autism' card ....... Tend to get sympathetic looks rather than disapproval.
Don't try to target all behaviours. Decide what's really annoying you / affecting Dash the most and focus on that.
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Post by mayan on Jun 3, 2014 13:59:41 GMT
Firstly hugs, hugs and yet more hugs for you Larsti!!
Now gosh where to start as your GP's response mystified me too - definitely not helpful ...goodness you are a well experienced parent parenting a complex child and the relentless intensity of it all is going to take a toll (self care for carers by cerebra is worth a look if only to underline the extent of the price folks like us can pay especially when we are not prioritising our self care so look hard at ways to achieve this - I know it is hard when your other half may have work pressures but look also to your support network or frankly any other resources that will give you some essential healing recharge time - you may have already built some in but sounds like you need some more or different somehow.
I hear your understandable anxiety for what lies ahead for Dash and for you all and as you say the irritability / frustration that can creep in perhaps because some of our partners can't fix the situation for anyone and desperately want to try and protect us but can't do that either or not to the extent they might want. Self care for you and your dh will help you both stay healthy, united and pay the benefit that your own levels of stress will be lowered which will impact on dash - he will be reading all the micro cues and sense if you are below par which can feed their anxiety levels - so ok you can't change everything for dash right now but you can focus on yourselves and how you feel and respond (something like mindfulness training or a bit of reframing or whatever might get you in the calm centred zone and feeling a bit more empowered as opposed to thinking you are somehow failing - you are absolutely NOT! You are just understandably frazzled and dash just needs more than maybe another child - ok maybe a lot more but some of our kids just do. It is really hard too when every little thing we do has to be micro analysed to see what might trigger an adverse response even the tousling of hair - such a tender natural thing to do and even this you both can be deprived of... And yes it is yet more frustrating when our children won't fit neatly into a dx box - have had so many for our ds and yes the traits overlapped so it seemed no one could offer solutions other than medicate him - a route we chose not to go down though I fully respect other parents who make a different decision - whatever works best for everyone etc.
For our ds the common thread has been anxiety/ fear response at the root of pretty much everything (labels never got him any constructive help and the next professional would just give us another dx anyway or eventually lay it at our door)). From functioning in school and coping with change or suffering sensory overload in situations (yep supermarkets were just off limits until he could manage pop ins and out - think small doses of everything as a sort of innoculation.
Sensory seeking on the one hand and perhaps projecting their fear (as hate/rejection) too as a way of telling you they can't cope right now and they actually hate the situation they are in and are bringing that all to you (gosh how privileged we are to be the recipients - my 25 year old dd can still do this at specific times and it is incredibly draining but understanding the where and what makes it easier to respond to) - spot the build up, distract or remove them from the situation positively so you are in control - change the dynamic as you have done successfully with removing yourself and offering alternative safe adults so he can build a little more resilience each time - it is a slow and painstaking process to help him adjust to a lower level of what I'd call functional anxiety for my children. Whatever experiences, genetic traits or dx or co morbid conditions are at work for them - making situations less likely to provoke a fear based response by planning things, spotting the potential spiral such as air biting (a fear based response unless episodic and repetitive??) before the biting if possible - wiring in the littlest of challenges successfully conquered to up that resilience and lower the fear based anxious response for maybe the next time round or maybe the time after that etc.
I guess when it comes down to it all I can think of is it is a bit like horse whispering - not quite the right analogy I want but so much of our experience with both our two has left us to try and figure out the best way of helping them reach functionality to allow them then to use whatever potential they have had - not least because we have been failed by all but one of the professionals whoever had anything to do with them and usually made things infinitely worse - all bar our dd's saint of an OT that is. Agree very much with the short sentence structure of instructions in the positive as they may not hear or process fully which can often land them in a pickle - things like the I went shopping game or trying to remember telephone numbers might indicate what the short term memory / processing gap if any might be too.
I know when my kids have ( and still do at times) just drain me so utterly I have to remind myself they are doing the best they can at that particular time and that is all I can do too - sometimes it might all come together and we will all make some progress - even if it is imperceptible - but it is more about reaching functionality than trying to match the attainments of others who have not walked in their shoes and remembering on even the cr&ppiest of days that they do bring many and various gifts to our lives that we would not be without.
Well there's my ramble Larsti for what it's worth - just don't let your chin go down girl - go and do something nice for yourself that will help you feel strong or empowered or just find a quiet spot and think yourself doing it (pretty much the same effect and considerably cheaper usually...) so that you can stay calm and centred but most of all - standing - as the constant whilst they test us beyond the beyond.
Much love strength and many cashmere wrapped hugs till you find your mojo again
Mxx
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Post by mayan on Jun 3, 2014 14:11:23 GMT
Ps whilst they are faffing about with dx what about music therapy or even a gamelan music group or some such - just a thought.
Mx
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Post by larsti on Jun 3, 2014 14:52:32 GMT
Just 'liked' your replies for now as no time for the replies your posts deserve Don and Mayan. Thank you!
'air biting' is that a thing? That is just what he does!
L x
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Post by nzhb on Jun 3, 2014 16:01:01 GMT
I have just started taking my AD to Bowen therapy ( & I am going to have some for myself!). Another adoptive mum is a Bowen Practitioner & although I had heard of Bowen, it wasn't something that I had considered. Throw in SATS & a lot of horrible events for all of us this year & I thought it would be worth a try.
It is lovely. My AD is so relaxed during 'treatment' & afterwards. I don't care what the evidence base for it is, if she likes it & she's calmer then it is worth it.
I also have a friend who does massage & we have been to see her too - my AD loves this as well.
She has lots sensory probs - fidgets/touches things etc mouthes & also has ADHD.
Larsti - would you consider anything of this ilk, for now?
Good luck.
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Post by larsti on Jun 3, 2014 17:37:13 GMT
Not sure nzhb. I am not very 'alternative'! But I will look it up as never heard of Bowen therapy. Sooz sorry I didn't see your post earlier. Snooz was perfectly behaved and anyway, on camp with other adults around who get it, I am perfectly relaxed In fact I can never tell from one day to the next how frazzled I am going to feel. It is very true what Mayan said about them picking up on our emotional state. That'd the trouble with some of these behaviours, they get on your nerves, literally. Back later.... |
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Post by lilyofthevalley on Jun 3, 2014 19:36:36 GMT
Your post reminded me a lot of my two when they were young. After a great fight on my side they were both eventually diagnosed with ADHD and put on Ritalin medication. What a difference it made!
I suspect the situation with the experts will not have changed much over the years. There is much ignorance and misunderstanding about ADHD. Unfortunately you may not be able to rely on their knowledge and expertise to diagnose and treat ADHD. So I'm afraid you have to become a bit of an expert yourself to argue your case. I would recommend that you read up on ADHD. If you are convinced that the symptoms fit then you will have to fight your corner. It is a common misapprehension that if they can concentrate on something then they cannot have ADHD. This is not true. The psychiatrists would not diagnose my son for this reason as he would concentrate on computer games.
If you come up against a brick wall you will have to seek out a specialist ADHD child psychiatrist and ask for a referral. In my case I had to give up on the CAMHS services in Edinburgh and take the children to Newcastle to be diagnosed and treated. They were both suffering from severe ADHD and my daughter from ODD too.
The whole awful process took me four long years. I would not have been able to cope for much longer. I was worn out.
Lily x
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Post by doubletrouble on Jun 3, 2014 20:12:07 GMT
Lily, you have said just what I was going too about the concentration bit. Both ours can concentrate but have ADHD, sensory processing disorder and DD is now being assessed for ASD. The new Consultant at CAMHs said today she couldn't understand why no one had thought of ASD years ago for DD!!
I told her I had brought it up years ago but that her problems had always been put down to attachment disorder.
This is what so many of us have to put up with. We are now 8 years in and only this year do I really feel we are getting somewhere.
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Post by milly on Jun 3, 2014 20:51:48 GMT
Was also going to say it's a misconception kids with ADHD can't concentrate on anything. My ADHD dd could concentrate for hours on the computer or a DVD at an early age. (Partly because she could control / vary things to suit her). What she can't concentrate on is challenging tasks or those she finds uninteresting. And because ADHD also means poor executive functioning and poor fine motor skills generally, then that means a lot of things have been challenging for her. Eg she never liked colouring as a small child as it was too fiddly (likes it now as a teen)
Also when she started taking the meds at 7 it became a lot clearer to me that most of her behaviour was down to lack of impulse control rather than being wilful. Her behaviour improved a lot as she got older though it's not perfect - but mostly it's about issues getting on with others rather than defiance etc. Or feeling under stress so kicking off in some way.
There's a great quote I have always liked from Christopher Green (ADHD expert) about if you ever wonder why everyone else's child behaves better than yours at the supermarket, it's because those whose kids can't behave don't take them shopping! Made me think that it is easier to let go of some things. For years I have done my shopping online or when they are at school. (Actually dd is OK to take shopping now, but if both mine come they bicker endlessly over who has the trolley etc (older dd still obsessed with pushing them) and if I only take one the other is jealous.) Can just about manage shoe shopping with both as long as they both get a new pair - buying shoes has always been the easiest shopping option with older dd as she is very keen on shoes so focuses well!?!
Anyway of course Dash may not have ADHD but it could be worth looking into. Like Lily says we only got the diagnosis by doing our own research and more or less demanding it. The meds don't work a miracle but every morning dd is antzy and awkward, picking fights with her sister, and 20 minutes after taking her tablet becomes little miss reasonable! We wouldn't be without them.
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Post by larsti on Jun 3, 2014 21:39:07 GMT
Thank you L of V, double trouble and Milly about the concentration thing. Also someone recently said that ADHD mimics attachment problems..........it all seems to overlap doesn't it? And then Bruce Perry says ADHD is not real...that is what he said isn't it? Its funny but one of the reason that we decided to home educate was because we felt he would fail at school and be in trouble for behaviours he couldn't help. He seems constantly in trouble at home  Well not constantly, but it feels like it. Not sure about meds, but Dash knows there is something wrong with his brain so if it comes to it, the pills will help his brain won't they? I am going to print of this thread and write down salient points and action that needs to be taken. I am not good at planning....or rather not good at sticking to a plan but I will give you all feedback on how its going as I think I need to keep focussed! Love Larsti x |
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Post by donatella on Jun 3, 2014 21:47:54 GMT
I've read that if ADHD meds don't work then it's not ADHD. They work here! Ds has very recently had his dosage upped, it was noticeable that the meds were taking longer to kick in and weren't as effective. New dosage, back to normal. Makes a real difference.
And he's always been able to concentrate - on computers, Lego, knex. For hours.
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Post by larsti on Jun 3, 2014 22:07:26 GMT
Well then, that would save a lot of time and trouble. GPs could prescribe meds and see if they work!
I will mention this phenomenon to our older DD who has just finished 3rd year of pharmacy. She is now a mine of information about medications. They spent some time at the Maudsley as part of her course, but I think that was just adult mental health they learnt about.
Donatella, I PMed you and also PMed you Mayan.
Larsti x
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Post by doubletrouble on Jun 3, 2014 22:31:35 GMT
Don's right, If it don't work it an't ADHD simples!! But unfortunately G.P. can't prescribe ADHD meds. have to be prescribed in first instance by a Consultant peads or CAMHs. Have to do Connors tests etc.
ADHD is a condition where certain receptors in the brain don't connect and when given the meds. they do! They stimulate that part of the brain. If someone who doesn't have ADHD takes them it will make them lethargic and zombie like.
Thought Bruce Perry was supposed to be good. But he sure don't know what he's talking about on this one if that is the case.
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Post by wibbley on Jun 3, 2014 22:52:31 GMT
We took DS for a private ADHD diagnosis as there was no way we could wait until he was 7 as we were told by the local nhs service. We simply wouldn't have survived. Our GP prescribes under the guidance of the Cons. So private appointments, nhs prescription.
ADHD meds taken in small doses can increase concentration in us all - hence all the recent media fuss over university students taking them to help with exams. However, what it won't do is tackle the core bits of ADHD - the impulsivity, activity levels etc. I was told that it sometimes didn't work for those with say FAS as the issues are caused by brain damage rAther than dopamine receptors/chemical unbalance.
I am of the opinion though, that if they work - whether it be ADHD/ADD, attachment, sensory or FAS then what's the issue? Nothing need be forever & most of us have tried pretty well all over routes first. I did find that a calmer DS meant we could get real behaviour strategies in place & some lovely bonding.
Life is not perfect, but my DS has a lot more than ADhD going on
Oh & my DS has no issues concentrating on the TV or computer games either.
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Post by milly on Jun 4, 2014 5:41:09 GMT
OK I will admit I once took one of dd's meds by accident - felt such an idiot. They look similar to paracetamol caplets and I was talking, not thinking. I realised what I had done but was stuck with a 12 hour dose. To me it didn't feel that nice - I felt spaced out (same effect I get from decongestants) but my mind was racing. I felt I was jumping from one idea to another but also not sure if what I was doing/saying made sense. So definitely felt OVER stimulated not zombie-like. DH said he couldn't really tell though.
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Post by moo on Jun 4, 2014 6:03:53 GMT
Great thread larsti.... So glad to read such brilliant informative posts ( helps me feel less guilty for not being able to add much!! ) want to offer you loads of hugs & support you are an amazing mum stop with the self doubt xxxxx ( I get it too tho at least monthly when baa is on whirlwind attack duties!!)
Loving the thought of milly on drugs feeling hyper & talkative & dh oblivious   Men 'eh ..... ( gift & ornament spring to mind  )
hugs to all xxxxx
xx. moo. Xx
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Post by littlemisscheerful on Jun 4, 2014 6:33:13 GMT
I met someone once who had a AS and he was keen to ensure it was ADHD. There is apparently a scan that will show it. I have a memeory of Sweden in my mind? Ring any bells for anyone?
I found that it was at that age that I started not doing things that I knew would be difficult - no shopping, no visits with lots of people (unless very special occasion - and so I'd take a calculated risk).
FWIW, he sounds like ADHD to me. Both my girls have FAS dx, - some impulsitivity, and some not thinking things through - but not how you describe at all. They are much more passive than that.
Mine definitely need to know what is happening - and are very fixed in their thinking (that's the ASD I think). So planning is important.
Lots of prompts of what to do next (I popped out at dinner time last night - they always have abath after tea, - because I wasn't there they both forgot (as did DH!!)
Visual timetable would've been helpful when they were younger, (but I didn't use one).
I think it sounds like you have a lot of support around you - sounds lovely and will continue to be a massive benefit as Dash grows older (I say sitting here feeling a teeny bit jealous - we don't have anything like that - although my mum and dad are great).
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If I say 'hold onto the trolley', he can still push it/pull it, stick his foot under the wheel so that the trolley stops suddenly, which can be quite painful on the stomach 
Anyway, he lets go of the trolley and I have to keep reminding him. It is very wearing.
I never do a big shop with or without Dash. Its always a small trolley.
I almost never volunteer for anything these days in case on the day I am too stressed. What you say is the thesis for my favourite depression book 'Depressive Illness: The Curse of the Strong' by Dr Tim Cantopher. When there is meal at church, I let the other ladies do everything (too many cooks and all that!!) and my DD makes a pudding so that's our family's contribution. I did make a shepherd's pie once, but I don't bust a gut. That does cause a bit of an identity crisis but needs must! I take Dash to playground while they are getting everything ready and DH calls me when its time to come back!
Well not constantly, but it feels like it. 
)