Ok, head out of the sand, finally going to admit I need help re DS asperger's

[isolde76]

After posting on the behaviour board link{http://www.mumsnet.com/Talk?topicid=8&threadid=266624&stamp=070120180428}, dinosaur suggested I come here. So here I am!

It's been only a few months since DS's diagnosis of asperger's and it is all very new to me. He has major behavioural issues, is aggressive towards others and refuses to participate in anything in class. He is two years behind in his reading (he's in year 2) and i am paranoid that he will not be able to catch up with the others in his class. I don't know what to try to curb his behaviour and I feel like it is spilling out to my daughter with the fighting that occurs between them.

Hopefully start a star chart next week. Not sure how that will go down.

Oops \link{http://www.mumsnet.com/Talk?topicid=8&threadid=266624&stamp=070120180428}

Are you getting any support from, for instance, Clinical Psychologist? or even SLT or ASD outreach or Behavioural support team???? I assume not. I'm sure you will get some good answers from people here who have children with AS (my DS has ASD) but many of the behavioural approaches work for all kids!! Before using star chart, make sure he knows he will get something he really wants, don't make it too difficult to get the reward (to start with). Have you thought of using timers/countdowns, visual timetable, social stories?? HTH a bit.

Oh, and what about some support for YOU? Is there an NAS branch nearby you could join to meet other parents at your own pace? Other parents you could be introduced to by professionals? And talk about how it is hitting you on here if it helps.

I have not received much support from professionals at all actually. The psychiatrist who did the dx have only met with about three times, I have dealt with the school ed psych (veeery young and inexperienced), a behavioural support group which he is going to one morning a week, but I have to do the ferrying (half an hour in the car - one of the reasons I gave up my job). I have joined another ASD group, a charity based one, but tbh I don't think it will be very useful, as he is in a very small group with low functioning asd kids and he refuses to go anyway. Not sure what SLT is!

The one to one he has right now (through an emergency payment through the LEA), is there half a day, five days a week, but is not experienced with SN kids. He has decided that he does not like her though, so every morning we have a screaming battle to get him to stay in school, and I hear the rundown of what happens and who he has hit and who he has been mean to.

I have not used visual timetables, not sure what you mean by social stories or timers/countdowns. Argh!

I have no idea if there is an NAS branch near me - something I am going to look into this weekend. I have to do all sorts - apply for disability etc, and feel swamped! The form is a nightmare.

Funny you should mention support for me - what's that? Never heard of such a suggestion!

Oh dear, you really are swamped in every way. I would definitely try to get in touch with an NAS branch if there is one (they are listed on their website). As for the other issues, like deciding he doesn't like his 1:1 and not wanting to go to the group with more severe children is SOOOOOO typical of AS. Timers or countdowns just mean that when something is going to happen, or you are going somewhere etc you give a good and structured warning. Visual timetables can work very well for verbal children, although lots of people think visual strategies are only for non-verbal children. It gives them something tangible to refer to, you could just use a funky diary or whatever he might like. Social Stories are simple stories that talk about a specific situation and how to behave and why. If you do an archive search on here you should find info (but I pity you trying the archive search!!) or Google or look at Amazon. Is there any professional, regardless of their function, who you feel you could talk to? BTW, SLT means Speech and Language Therapy. Again, a verbal child has different language needs to a non-verbal child but a child with AS could benefit from SLT.

Hello Isolde6, my ds has Aspergers. He was dx at 8 years old. I know what you mean about school and behaviour. It was a nightmare. He is now in senior school and is doing so well there.

When I first got his dx, I had no one to turn to and no one offered to help so I googled Aspergers on the web and came across this site ASD Friendly .

thank you for that link RTB, looks great!

Isolde76 have a look at the NAS website and see if they run their "Help" programme anywhere near you.
It is aimed at parents who have had a DX within the last 18 months. I did it about 6 months after I had a DX for DS2. I had no idea that he had an ASD or what it meant, the course was very very useful.

We also had a very bad time at school, DS1 was really aggressive to other children, biting, scratching, he was all over the place really. We had two exclusions and I had to take him home for lunch for three months. This was all in year 1.
He is now in year 2, has a statement with full time 1.1 and all is going well, so far.

We also have had quite a few issues with his relationship with his brother, the NAS are now doing a Help 2 course and one of the sessions is on siblings, so I hope to get a few pointers from that.

I have had help from our local CAMHS service, do you have any access to this service in your area?

I really feel for you, must say I fell apart a bit after I got the DX, I used to cry at the most stupid things, but now 18 months down the line things are a lot better and I feel much more able to cope and find all of the support and help that you can get from other parents invaluable. I wish I had known about MN when I had my DX.

Good luck, I will be thinking of you

Hi isgrassgreener!

I shall do that - the Help program sounds interesting. The siblings one would be so useful, because the fights my two have sometimes are unbelievable and I am at a loss as to what to do.

How horrid for you to have had all those exclusions. It baffles me that kids that young can be excluded instead of working out the cause of the problems. I can never respect the headteacher any more for saying he may have to go down that route, when it was obvious from day one that he as 'different'.

Actually, the dx has given me nothing but relief. It was awful thinking that perhaps it was my fault, or the abuse that he witnessed from my ex towards me was the cause. One of the reasons I had my head in the sand for years about something being wrong, is because I was clouded by the relationship I had with my ex.

Erm, what is CAMHS?

i think its children & adolecent mental health, they help with behavior stuff.
welcome to mumsnet glad you found us.
sounds like you are having a difficult time in lots of different areas, the thing that has helped me most since my kids wer zdx was meeting other mums, now most of my mates have children with SN and it is so lovely to not have to stress so much around them.

Thank you onlyjoking. I have lurked on here for a very long time, with a couple of posts under a different name in the past pertaining to my relationship with my ex! Things have moved on a bit since then though.

Oh yes, I guess that's the same as Child and Family? That's where I got my dx, but they have not offered any other help. It would be good to meet other mums with similar children. For years I have been mortified taking him to playgroups etc as a toddler, because of his behaviour towards others and i constantly felt like I had to apologise for everything. I even fell out with a friend over it as she said 'I can't cope with your son any more', so that's one of the reasons why it is such a relief to know what it is finally. Because he is so borderline, people think he is just being a naughty kid, and it's great to actually be able to say to people if they make some comment, that the reason he is like he is is because he is autistic.

its not very often you get offered help, i thought we might qualify for a bit of help given that we have 3 with autism,local NAS have yet to give us even 1 place on a playscheme, or the befriender that we asked for many years ago, we get 8 hours a month direct payments and last weekend we got 4 hour emergercy respite due to hubby being in and out of hospital, but i had to ask, there may well be a mumsnetter local to you, i am in notts if thats any help.

yes always a problem when they are borderline, just a few minutes observing my three and people kinda just know something is different, i think it's the window licking that gives it away

You have 3 with ASD? Gosh, that must be very hard for you. And 8 hours sounds like nothing.

I am in south west london actually, not sure if there are any mumsnetters near me with ASD kids!

hiya isolde 76, sorry i am nowhere nr you. its so hard when our kids just look like any other kid isnt it. my ds3 is 5 and as yet is undiagnosed a.s but school agree with me that it is, however he is actually a very placid little boy, but he can get aggressive in meltdown. however i also have ds4 who is 4 next month, he has no dx but he is my aggressive 1, and it is extremely hard as he purposely winds ds3 up, knowing causing a meltdown will result in a good fight. sorry rambling lol, the visual timetable definately helped my ds3 at school, and the timer although they say that hasnt worked since they broke up for xmas for some reason, its all trial and error. as for the dla form hun, get yourself a notepad and write things down as they happen, so that you dont forget anything, and do the form a little at a time, it really is headbattering, you could also ask your psychologist friend to help with that as he may know their wording pretty well, if not any other specialist that you can get to help you, and dont forget to keep a copy, i didnt keep one and am gonna have 2 dla forms to do this yr with no notes, what joy. also, have you a parent partnership locally, i havent got round to them myself but i believe they are pretty good. onlyjoking how the hell do you cope, i have 1 asd and 1 with behavioural probs and am only just coping, it is disgusting the lack of help out there, hopefully we will get more help if this new law for rights of disabled and their parents goes through, we should just palm our kids on these mp's for a wk, it would soon get brought in then lol. isolde good luck with yout dla and getting school sorted etc, although if school is putting you through that much stress it may be an idea to look at an sn school, my ds3 is coping ok at the mo in mainstream but i honestly dont think that will continue, and i dont think ds4 has a chance, might just take a bit of the stress off hun, and also give you chance to find more support there, i wish you the best of luck

Isolde76 re the siblings seminar, I am going to one next week, but I know it is fully booked.
The NAS are giving another seminar re siblings on Sat 3 March 10am- 4pm University of Westminister in Regent St.
You could find out more about it on their website, I thought it may be of use as you said you were in London.

Hi mum24boyz. Meltdowns are no fun, are they. Sometimes I feel like I can second guess one a mile off and automatically get paranoid! It must be very difficult having another two thrown into the equation - hats off to you. I am very skeptical about looking into special needs schools, as he is so borderline, and I would like to think that he can be integrated more into his existing school where he has made some friends who understand him. I do get the feeling that the kids know how to deal with him more than the teachers sometimes though!

I put myself forward for one of the Help seminars, so hopefully I shall get a place. I will double check with them tomorrow - thanks for the tip! Again, it is so very difficult to go to these things with no help. I will have to get childcare for both for an entire day, and I don't know whether or not that will be possible. Grr, feel like I have to jump through far too many hoops.

If I dind out any good tips on siblings on Thursday I will let you know.

nooo isolde 76, i havent got the 3 of them, well i have but not asd, its onlyjoking that has the 3asd and my hats off to her aswell, good luck with the help seminars, is there no way you could get any help with financing the childcare, you would think these things would have a creche or something wouldnt you, hope you make it, and hope it helps.

Hi Isolde76, sorry to hear about the problems yr DS is having. I ordered two books from the NAS which I found helpful: 1. 100 tips for dealing with an AS kid - full of practical advice which really helpful and 2. When my worries get too much, a book which aims to teach some simple cognitive behavioural strategies to help your child avoid and deal with melt downs.

Agree with the relief a diagnosis brings. I tell as many people as possible so they can understand that ds is not just "being naughty"

Thank you IGG, I'd really appreciate that!

I will have to play it by ear re the childcare for the meetings. :S

I like the sound of those books, they sounds very useful. CBT would be a very useful skill to use. And I do the same - tell everyone the diagnosis.

He is at home today BTW. He had an Opthamologist appointment and the poor thing has drops in his eyes. It was impossible to make him co-operate! But got there in the end, and found that his eyesight is perfect. Phew.

At least you don't have to worry about getting ur ds to school today then, glad his eyes are O.K.

I have found the football cards quite helpful this this year. Loads of kids are collecting them and if ds has been gd for a day or two I will buy some (35p a packet). Cheap treat but ds loves them. Also gives him something to chat to the other boys about.

Re the LSA has she had any training regarding AS? Whilst some can be really good, others are just unprofessional "mums army" types who are useless at dealing with special needs but should confine their efforts to hearing kids read and helpoing out with displays etc. There are no shortage of applicants for this type of position so it might be worth having a word with the SENCO if there is a personality conflict.