Advice pls: coping with aspergers in large family, homework, anger etc

[LongStory]

Well we've read the books and know the theory on how to do this, but are still struggling in our family context. DS1 is 10yo and we (and the school) think he may have aspergers, although the PCT have f*ed up and although we sought a diagnosis last November, the initial appt is end July. But he scores highly on every checklist I've seen. Aside from the standard aspergers stuff, the main things we're struggling with are:

• he is the oldest of 5 which means (a) we have limited energy and time to pay to his special needs, and (b) he is setting a precedent to his younger siblings on violence, anger, etc.

• he has two younger brothers, 5 and 18 months, and I'm terrified they will have similar issues. 5yo already v obsessive with computer-type things.

• homework - so much stress when we try to get him to do anything - he just doesn't engage without intense 1-1 input, even that seems to trigger all his anger and frustration, so I often have to choose between putting pointless effort in with him or letting him be and working with his 8yo sister. DH and I have 5 degrees between us and it's pretty difficult to 'give up' on education at this early stage, but the trade offs are brutal.

• worry about high school and how he'll cope with the transition. And the teenage years don't bear thinking about.

• the impact of his anger and frustration is so negative in our family that my husband has even suggested sending him away to boarding school (there's a subsidised one which could be available through DH's work, although DS1 would be bullied mercilessly and I can't bear to contemplate it. Most days.)

• What's the best thing to do? Should I give him a laptop, get off his case wrt school, homework, activities etc and leave him to work life out for himself, and focus on the rest of the family?

Apologies if this is all a bit jumbled up. Would really welcome some thoughts.

A referral to CAMHS might help if they will offer you some kind of family therapy.

Hatred of homework is common amongst Aspies (home is home and school is school). Explain to the school and ask if he can be allowed to stop doing it. It is one less battle for you to fight. You are not giving up on Education by stopping homework. My two elder children never had homework in Primary and both went to University so it didn't do them any harm.

I know what you mean about the worry of High School. Is he receiving any help at school or is he one who "copes" at school and lets it all out at home?

You don't say who your appointment is with, but if it is a Community Paed why don't you ring their secretary and ask if the appointment can be brought forward. Our Paed's secretary keeps a few appointments for emergencies and if you explain the situation she might be sympathetic.

Although your son is not yet diagnosed you could try reading "People with Autism behaving badly" by John Clements. I found it really useful. (available on Amazon).

Thank you happycamper, we have tried the school over homework (he needs to do it) and also the community Paed's secretary without success - but it's good to know my instincts are right on this. I'll look out for the book.

Has anyone actually found family therapy useful? How does it work? The thought of getting all 7 of us out on the same day/time regardless of childrens' routines and work commitments for some kind of expert 'intervention' makes me shudder.

I think it's more of a zen mind thing that we need to do to prioritise calm in the home and avoid detriment to my 8yo daughter's enthusiasm for learning. [i.e. by the time of day when we've all eaten I've got the babies to bed I want to be able to focus on her rather than a screaming wreck / trying to avoid battle with / motivate my 10yo son].

I think prioritzing calm is the key. The school will have a blanket policy on homework, that doesn't mean you have to be ruining your relationship with your child. I think the school should be the ones to get him to do his homework not you, after all they set it!
I have lots of homework issues with my kids, I am beginning to realise it is because I'm feeling "judged" "responsible". And that's making me tremendously anxious, which in turn is making child tremendously anxious.

School needs to reinforce that child should do homework, with child directly, you should not have to be supervising it/intervening to the extent that you are. Have they got sanctions for not handing in that they can relate to child directly? I found that helped with my 10 year old a lot (in yr 5). I do not even look at his homework now (he does it (badly) but it is between him and his teacher. I found it better that he did it badly and took complete responsibility, than me always getting in a state about untidyness, spelling, slipshodness and him then working himself up in a complete and utter rage.

I'm still struggling with the year three homework though Must learn from my mistakes.

LongStory,

Other posters have given you good counsel so will give you some more stuff to think about.

Certainly not boarding school, that's the last place I would be sending him to!. It will make a poor situation worse, far worse and your son may not cope at all. Also such a place may not want to take your son anyway because of his additional needs.

Has the SENCO ever talked to you re your son?. What has this person said?.

I would personally write to the LEA and ask them for a Statement of special needs (you don't need a diagnosis nor permission from school to apply for one). They'll likely say no to you re that to begin with but persevere. This is a legally binding document outlining his additional needs and support to deal with those. I think its particularly important that he has a Statement in place particularly before he gets to secondary otherwise he could well sink there. Secondary school particularly without a Statement in place and AS are uneasy bedfellows.

Have a look at IPSEA's website re statementing www.ipsea.org.uk. There are model letters on there you can use.

Hi - thank you so much for comments. I think we and the school have been kidding ourselves for a while about the scale of the problem and are now realising what we need to do - for a few months he seems to cope and then it goes majorly wobbly for a while and we realise how much we're all 'compensating' for his inability to make friendships, organise himself and structure his thoughts. Until now he has had an IEP and a pastoral care plan plus some visits from the Ed Psych. But then he he attacked a year 2 pupil at school and compeletely forget about his punishment so they are stepping up a gear. [message: violence helps !?] I have an appt with the SENCO next week to fill in a CAF which might take us on to a statement.

It doesn't help that DH has a prominent community position and is deputy chair of governors at the school so we're supposed to be the perfect family.

Thanks also for backing my instincts about boarding school and calm, and the need to get things in place properly for high school.

If I'm not helping him structure his time e.g. homework or activities he will mostly disappear into gamecube/ds/tv land. I don't know if I should / have the energy to worry about this - tempting to let him be as the precedent he sets with this is probably better than fighting and anger. hmmmmm.

Hi longstory,

re your comment:-
"I have an appt with the SENCO next week to fill in a CAF which might take us on to a statement".

No,no,no. Meet the SENCO by all means but the CAF may well turn out to be a lot of hot air which will achieve little.

You can and should apply for the Statement NOW; you don't need the SENCO or any of that lot to do it. These things can take a minimum of 6 months to set up as it is so time is really of the essense.

If you make the request yourself you know its been done then, besides which you can appeal in the even the LEA say no whereas this other shower cannot.
IPSEA's website is helpful in this whole regard.

You are your son's best - AND ONLY - advocates.

I agree with Attila that you need to apply for a statement as soon as possible, especially if your son is in Year 5. Secondary school is likely to increase his difficulties, with the various changes in timetables and more complex social situations. You want to put as much support in place as you can before he starts. You will also get more choice over which secondary school he goes to.

It takes at least six months to get a statement in place, often much longer (ours took nine months).

gulp. Thank you.

Seven months to be seen by a community paed is hardly a promising start to this journey. That's assuming it does happen in July.

I completed a CAF as I was told that it had to be completed before we could get any further help! I have now requested a SA and am waiting to hear if it will be agreed. My ds is also in Yr5 and ytime is of the essence. You really need to start on this now.
"It doesn't help that DH has a prominent community position and is deputy chair of governors at the school so we're supposed to be the perfect family."
I am a governor too but I still want whats best for my ds and will do whatever it takes to get that. Don't worry about what other people think - It's not their child!

I was a Governor at my DS' Junior school and taught at the feeder school. I know how much pressure that puts you under. My solution was to resign three years into the four year term. Family first. People are unreasonable if they expect your family to be perfect, whatever your husband's role in the community is. (Some people will be relieved to know his family isn't perfect). The Head showed me a letter from a parent (names carefully removed) which complained about my DS with the words "And I understand the parent is a teacher..." as if that made it impossible for me to have a child with problems.

Hope all the replies you've received have at least made you feel you are not alone.

'The Head showed me a letter from a parent (names carefully removed) which complained about my DS with the words "And I understand the parent is a teacher..." as if that made it impossible for me to have a child with problems.'

Oh yes, I've had that on a couple of occasions.
We do calm at home, he gets down time and after food is when he has to do homework.
I do know what the work is, set him up ready to learn and monitor what he's doing. I also problem solve whilst he's working, otherwise he gets to a point he can't think round and just stops.
It's worked so far, we're doing GCSEs at the moment.
Does violence get a better, instant response from school?
Yes in our case, backed by a very proactive parent who seized the moment and nailed the school's feet to the floor with specifics, ideas and written notes and agreements. I took their panic and used it to access stuff.
Do I give a flying fuck what others think of my family?
No.

Peaceful and quiet when he comes in.
No questions or interactions unless he initiates them. If he's in trouble for something, or needs to do something, he still gets an hour before the heavy stuff begins.
Safe place to go where he won't get hassled for about an hour.
Same tea ready to be scoffed, he has fruit, bread and butter and a glass of milk.
Dinner at 7ish, homework from 8-9.45, bed by 10.30pm. I do realise that this timetable won't work for a 10 year old, we've adapted it as the years roll by. And he's not one of 5.
If you leave him to sort himself, the impact on the rest of the family might well be worse than if you dealt with him now and worked out some strategies to help all of you manage. he's unlikely to change or adapt without positive support and guidance that is consistent.

Thank you, Goblinchild, this is good practical stuff.