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my DD's whole life is up-side-down and i can't seems to place any order in it !!!!!!!!!! my life is up-side-down too and i will soon go nuts !!!!!

(23 Posts)
joburg Sun 11-Oct-09 11:41:50

DD, 6 1/5 cannot seem to organize herself in anyway, not even a minute after receiving instructions. It has been like this for ages but it doesn't seem to improve. I'm not talking about organizing her whole day at once, just 1-2 things at one time, like me telling her that first we go to the shop then we take a nap. The minute it would take me to close my pc, put some clothes on and get ready to go shopping, I would find DD fast asleep then waking up and asking to go to the shop as planned! I know it doesn't sound like a big deal, but this goes on and on with every little thing i require her to do. I just don't have any control over what we need to do next, I can't plan anything in advance, my day after day after day are all a big mess, i feel like i can't communicate with her, she just hears every second sentence, or what is convenient to her. I need to keep checking on her every single minute, tell her what to do, check on what she's doing, talk again, check again, and on and on. She registers things but in the wrong order (and when she's washing hands first and then go to the toilet .... i just want to go away and have a holiday somewhere far ) ..... i use the simplest words for her to understand (dd has ADHD), repeat the instructions, talk softly and emphasize every word .... this only is enough to kill my brain since i sometimes have to do it 3-4 times in a raw for the same little thing .... i can't take it anymore!!!!! PLEASE HELPPPP!!!!

improvingslowly Sun 11-Oct-09 12:06:27

am sure someone else will have a better idea,tried it, but in the meantime would writing it down in a list help?

is this a bit like auditory processing disorder?- which i think is where you can hear fine, but cant process the words.

Goblinchild Sun 11-Oct-09 12:08:46

Have you used a visual timetable with her?
Pictures in sequence on a velcro board. so she can see what's going to happen in what order, then remove a picture once it's happened.

Marne Sun 11-Oct-09 13:43:22

As Goblinchild sugested, i would try using a visual time table, dd1 is also very un-organized, she even struggles with getting dressed, she now has a picture chart for what order to get dressed in, each picture is stuck on the chart with velcro so she can remove them when she has put the item on.

troutpout Sun 11-Oct-09 18:57:43

Yes...i would also recommend a visual timetable.

janmumto5 Sun 11-Oct-09 19:22:15

Hi my ds1 has adhd and we have very similar problems he forgets intrusctions within seconds of being told them.. He is 10 and it has been a big problem all his life we are about to start using visual prompt cards ie go brush your teeth adam please and hand him card of toothbrush and toothpaste so by time he gets upstairs he still has card to remind him what to do.

We have also found only telling him one thing at a time can help ie tell your dd we are going shops NOW. Dont mention sleep or anything just the shops. Then on way home say it is sleep time when we get home etc hth x

Littlefish Sun 11-Oct-09 19:26:31

Does she have the same problems at school?

Has the posibility of dyspraxia been investigated alongside the ADHD?

If she is struggling to remember a basic sequence of events e.g toilet and then wash hands, you could draw her a social story/poster and stick it beside the loo so that she has something visual to refer to.

Goblinchild Sun 11-Oct-09 19:32:19

The point of having a visual timetable that you can remove things from is that the individual can keep track of where they are.
I used to do them with my son, now for certain things he makes detailed checklists instead, but he's 14 not 6.
One thing at a time to focus on is a good strategy as well.

joburg Mon 12-Oct-09 10:01:26

Thank you moms for the replies. DD has had visual timetables but she never remebers to folow them, or even checking them from time to time. In our case it's like me telling her it's time for us to go check them and by the time we are in her room she has completely forgot about why we are there. Then we start explaining about it again, and while i do it, she looses her interest in what i am saying. She would be singigng, or telling a story. We talk AGAIN about the timetable. Then she says, 'yes, mami', goes on doing her task and on the way forgets about it. I ask her to take her dirty napkin to the bin, from the dinning table, and on the way she forgets where she is supposed to go. In the case of taking a nap/shopping i can of course take it one thing at a time, but my worry is, if she can't even follow 2 instructions at one time, how is she gonna make it in school? HOW CAN I TALK TO HER SO SHE CAN STILL HEAR IT??????????????? Visual cards? She would most probably loose them on the way, drop them in the toilet while on the way to kitchen, forget why she even holds them ..... And, how can i keep sane?

ChopsTheDuck Mon 12-Oct-09 10:30:06

My ds has dyspraxia and asd issues. I find I have to make eye contact, and be very clear in my directions, wave my arms around a bit and emphasize the key words! Rather like directing a toddler. If he isn't looking at me, I know he isn't going to take it in.

I think it does improve too, as they get older. My ds still struggles with more than one instruction at a time though. You might be better breaking it down so she doesn't get confused.

ds still can't remember to wash his hands after the loo, or after he has eaten. He can't always remember the right order for clothes. I jsut automatically remind him.

joburg Mon 12-Oct-09 10:33:10

By the way, we went through 4 different psychological tests in different clnics in one year and a half (we don't live in europe, so all took a long time, cost a lot of money, i'm so tired of it all) but with little results. The first lady told us it's too early to diagnose her while DD was only 4.5 but she suspect her of an autistic spectrum disorder - after 7 sessions! Then we got a sensory integration test, they said it's no ADHD. Then we took a speech and language assesment and they said we need language therapy. then we took another test, they said it's adhd but no sensory integration issues. Now i hear of dyspraxia (thank you littlefish), read plenty about it on the net and it looks like we are somewhere there .... We spent months and months taking those tests, damn it (don't even ask me about the costs)!!!! And we still have no clue what is wrong with DD, and how can we help her.

ChopsTheDuck Mon 12-Oct-09 10:34:42

As for worrying about school, you jsut have to find ways of managing it. Ds needs his bag checking before and after school, he has checklists at school, etc. Prob doesn't wash his hands all day though! hmm

Actually I remember the teacher giving me some exercises to do, to help build on memory and organising skills. Things like when go to the supermarket, give her three things to remember, and see if she can fetch them. Walking to school, do a chart of things they see on the way to school, then see if they can remember what comes next walking to school.

ChopsTheDuck Mon 12-Oct-09 10:41:04

The thing is though, there is a lot of overlap between all the conditions you mention. It is possible to have symptoms of each, or even more than one condition.

ds is currently dx with dyspraxia, but the school say he is hyperactive, and he is now undergoing assessment for autism. I wouldn't worry too much about the labels, especially if it is costing you a lot of money. I'd focus on what needs she has and meeting those.

There are some good games for dyspraxia too, which might help her build on her problems. Look at games by thinkfun, which require forward planning and help build on organisational skills.

joburg Mon 12-Oct-09 10:43:01

ChopsTheDuck, does your DS still make it in school? i'm just so terrified that even if i had the patience to do all theese with DD at home, this will not happen in school. After all they have 20+ kids to handdle .... What shall i do from this point of view? I can't expect the teacher to spend 5 min just to get DD's attention and have her look into the eyes, when she has 25 other kids to teach.

magso Mon 12-Oct-09 10:45:05

Hi Joburg! My son is very distactable too (and doesn't seem to switch on properly in the mornings or off at night) and sometimes I dispair too. Sometimes it feels like 1 step forwards 1 step backwards all the time. I think it helps to not expect much - aim for one small task at a time. Once that is reliable move onto another but be prepared to go back to reinforce the first task later. It keeps me sane to notice what has been achieved!! ( ds did not spill his juice today hurrah!!).
Is there anything that could concentrate her mind like a small reward? Like getting pudding only after she puts her plate in the kitchen properly. We have check list charts all over the house ( dressing chart in bedroon, washing/ teeth chart in bathroom, getting ready for school check list by front door) Have you discussed your worries about school with her paediatrician?

ChopsTheDuck Mon 12-Oct-09 11:13:07

In the infants he had extra support from the TAs and was on an IEP. The TA would sit on his table and make sure he was focused and knew what he was doing.

Its a little harder now he is in junior school and we are looking to get him statemented (but he does have quite a few issues). Having said that, the teachers do tend to pick up on the children that do switch off, or need extra instruction. My nt dd is very scatty and not exactly academically minded and the teacher always double checks with her after group instruction. Even where there is 20 kids, the teacher does have to make sure every child is with the rest of the class.

I think you should talk to the teacher about your concerns. Make sure they are aware, and are taking action in the classroom.

joburg Mon 12-Oct-09 11:14:17

Magso, are you really using the small reward sistem all the time? Like in evey times your DS is doing a good move? I'm asking that because i'm soon hopping to get a job ..... no babysitter will be able to do all these, not to mention all the other tips and tricks. How do you working moms deal with it? .... and what shall i do?

magso Mon 12-Oct-09 12:40:36

Ds is now almost 10 (he has LD ASD ADHD) and we are still working at a very basic level! We have been seeing a behavioural physch who recomends a max of 4 targets (one to be a easy give away) and sometimes I want to shout but I've been working on these for years!! The targets have to be very small and specific like one is to get dressed when reminded(he still needs promting). I tried to make a target 'doing as mummy asks' but that is not specific enough - so it is only getting dressed when asked. Personally I get bored with reward systems but ds likes them and the pudding one works for him so yes we do use motivational rewards a lot of the time particularly to get sequences learnt. On a bad day I feel like am ds full time minder and slave. I do try to conciously notice any desirable behaviour like remembering to do things himself - it helps me to stay positive as well as motivating ds to repeat the desired. I would say ds has changed a lot in the last 3 years - he has just taken longer to get started! As far as work is concerned - I only work part time as it has got harder to work as ds has got older precisly because child care has to be suitable for my child.

joburg Mon 12-Oct-09 13:20:39

i'm just so tired of googling around, since the tests we already took didn't give us much information.... soooo frustrating!!! what more to say. Dyspraxia, sensory integration issues, communication disorder, semantic pragmatic disorder, need of a language pathologist, adhd medication, or just make it without it, use fish oil instead, after a year and a half of tests and money spent nothing is clear, nobody can really tell me what the hell shall we do .... i'll just have to go for a walk in the park before i loose my mind

joburg Sun 18-Oct-09 12:08:29

bump! i was so hoping to be able to get a job soon, but reading all your posts gives me the idea i'll be stuck home for years and years .... it sounds like a nightmare, no nanny would take all the trouble with cards and timetables ... any working moms out there who could share with me their experience???? i just feel so down right now, desperate, exhuasted, tired, hopeless ... is there any hope for me?

Goblinchild Sun 18-Oct-09 12:59:44

This is not in any way a criticism of you, and your experiences with your child will always be unique to you, so if I talk about how I manage, it's very subjective.
I work full time as a primary teacher, and my son is 14 with AS and no LDs.
I manage by being very organised, systematic, calm and patient. H
e knows what is going to happen and when and how, and what to do next.
I don't yell, flap, change things suddenly or swear because it either confuses or enrages him when people do that and so they are ineffective strategies.
I prioritise clearly what matters and what doesn't, for example I do proper housework in the holidays.
I have been studying him for years and so I know his triggers, what works, what I can change and what is un-negotiable.
In school we use visual timetables, laptops, time out, quiet corners, adapted materials and lessons and a dozen other approaches to meet the needs of the children we have on the spectrum.
And yes, sometimes I feel like doing a runner to a quiet mountain top or a desert island!
Then I eat ice-cream.

improvingslowly Sun 18-Oct-09 17:20:18

No idea if this will help you, but friends son has aspergers. amongst other things, he got very frustrated and cross about little things.

We found a sensory trained OT who said he had retained primitive reflexes (google this), and also talked about inability to cross the midline, (eyes cant follow from left to right without moving his head). they started doing various exercises at home (strange crawling and other things) for about 5 months (15 mins a day), and we feel we have seen an improvement. he seems happier and more connected in.

magso Mon 19-Oct-09 10:14:21

Actually my sons afterschool club do do these things (charts etc) with him. They help other children with their homework and ds with calm behavioural stratagies! The very routine of the club helps. ( arrive, drink/snack, play whilst others do homework,have tea, free play, get collected!)Before I found this club (Ok I know how lucky I am)ds was cared for by a cm with sn and nursing experience. I had to pay more (because the cm could not care for other children too) but it was possible. Ds also has a lovely carer who is doing sn child care training - but can help me out in the holidays. ( the local childcare training college may have suitable people - unfortunatly they tend to move away after a few years)
So it is possible to find suitable childcare (just tricky). The trick is to match the care to your child - someone who will look after your child at their level. Actually an open minded nanny used to meeting the needs of young children may work fine.
There are ways of working even with a child with additional caring needs! I think work ( and the contact with adults) keeps me sane! I hope you find both work and childcare to suit you. Good luck!

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