ASD Review - why do I feel like they've hit me when I'm down?

[swanriver]

I've been attending a ASD parenting course for recently diagnosed Ds2 which covered all aspects of ASD and how to deal with it. He is 9. He is lovely. Sometimes he is easy, sometimes he is challenging. He has a close bond with my husband who has always adored him, and spending time with him.
The review was basically a way of winding up and closing the case.
The two clinicians had never met ds2 before, as he had been diagnosed by another OT/and pyschologist in July.

I said I felt there were a lot of family ishoos and my other two children were affected by his condition, and that we would benefit from a family therapist (which is offered by council team, although very slow to materialise as yet, after 6 months requested).

I said there were lots of tensions, and lots of screaming, and that my husband swore a lot and the three children were often fighting, mostly because of the difficulties that Ds2 presented to family life/outings/socialising. Also that I felt overwhelmed by the clutter in my house, despite constantly clearing it, and that my husband was very resistant to removing stuff (he is a bookseller and a natural hoarder) I felt my husband was better at dealing with the children than I, and I confessed he sometimes belittled me in front of them, although he was generally very helpful and loving to all of us. He is. He is never violent. The children are sometimes violent in their reactions to each other. The arguments were mostly about clutter and me wanting to remove it, and him resisting. All this was adding to the background stress. I emphasised how much he looked after children, chatted to them, played with them, gave them breakfast, put them to bed, took them for walks.

Now the professionals' reaction to this was not what I would have expected. Listening, supporting, encouraging me to think of best ways to bring out best in the family (there are loads of lovely things about our family if they'd bothered to ask about them)? NO.
Instead they were instantly proscriptive (prescriptive?). Zero tolerance on Dh being Abusive to me (sorry I didn't say that) Why is house so untidy? Tidy it. Throw away clutter (yes I've explained the difficulties) No we can't see you again. All problems are behaviour not mental health probs. We've given you instructions for dealing with that on the course. But ds is anxious. No that's your fault for screaming and shouting.
And, finally. Have you seen a GP for depression, and you are obviously not managing to control the children. Yes, I do feel stressed by my son's ASD and various aspects of our life, but presumably that's what you are meant to be helping me with rather than packing me off to GP.

I just feel that a) having asked for help with the family dynamic I need support not telling off.
b) telling someone they can't control their children when they haven't met the children (or assessed how uncontrollable they are or otherwise)is not very fair. I'm telling you how I FEEL not how it actually is. I'm telling you how it feels to be up and down with an ASD child in the family. You are the professionals and you should be encouraging me to see the ways in which I do manage rather than telling me I can't manage.

Anyway, this is all a bit garbled.

I'm sure they are right. I need to give zero tolerance to all anger and bad temper in the household, and be completely in charge. All the time.

Anyone been through this?

Oh dear poor you, sounds like maybe you 'shared ' too much with some utter twats that are your paeds. They're not trained to hug you and comfort you and say you're doing an AMAzing job with your children, your lovely home, adjusting to the enormous added pressures and emotionals strains that disbilities bring to family life, that there is bound to be some heated moments but it sounds like you are handling them fantastically well, that yes of course you're feeling the strain, and is there any way you can ease that eg some time out, or counselling?. I really hope you have some friends and family around you that can tell you these things and offer support. as for counselling, the chances are you will have to pay for it for it to be any good IME, but it could be well worth it. (((Big HUgs)))

yes, I think some "counselling", even if it is just talking with some other ASD parents might do the trick..
I think I'm not very good with professionals in general, perhaps I want too much from them and don't quite know where to draw the line. There is a knack and I don't have it. Perhaps I'll learn to keep nuance out of it.

Anyway the main thing is to take the information they have given me on the course and use it to best advantage with Ds2 and the family, rather than stressing about whether they've upset my feelings. Also Dh shouldn't swear, and I hate it when he does, so I suppose I need to have zero tolerance on that like they said. But, they also were critical of him for not attending the 6 week ASD course, (although he has come to other meetings) and I felt they knew little of the juggling he had had to do so far to bail me out on numerous occasions when children needed him to come home early etc, I was ill, son had accident with broken leg, arm, helping with Scouts. In the end he needs to keep his job.

Ideas:
Ask your GP for counselling or find a yoga class or similar

Consider asking social services to do an assessment of your disabled child and you as a carer - they should look at the whole family - you may want to ask locally about the disabled childrens team and check they are supportive as the last thing you need is an unhelpful social worker - but ours is lovely and we get 2-3 hours per week direct payments when we pay someone to look after DS3 (ASD) and get to go out with the other boys alone; a free sitter once a month and a sibling group where the non SN boys go on outings etc.Ok its not a wonderful package but we started with 2 hours DP and then the other things have come along - once DS is 5 there are holiday clubs etc
You could be entitled to much more help than this but a good tactic is to ask for a little - get on the books and then gradually ask for a bit more.

Relate are doing free counselling for families with a disabled child -again you could ask social services to provide a sitter or direct payments for a sitter so you can go

It sounds as though you need a break and some space each week which is yours.

If you get DP you could even employ a cleaner

Are you getting DLA etc

I have met very few professionals who have added anything positive to our lives. There seem to be vast swathes of people employed simply to find ways of making sure they don't help us.

Its true that 'dealing with professionals' is a skill that you learn along the way, mostly from learning never to do certain things agian! perhaps they should run a workshop on that In general SMART targets are a good way to aproach them, make sure you're asking for things that are specific, measurable (accountable), acheivable, realistic and within timeframes. Your husband sounds just fine to me, many are in complete denial about dx, many more just walk away and blame someone else.. my kids dad is long gone, and in heaps and heaps of denial.. Yes he does need to keep his job, and you both need to look after yourselves and keep SANE!! good luck x

Thanks Agnes, wise words, I have recently started employing a cleaner and it does help a bit.
I think I do need to put my [mental] "house" in order. Ds2 is at school, in the absence of playdates where ds2 gets invited out, he needs other (he is 9) so of course I get free time then as I'm only helping as a volunteer rather than working atm.
I can also afford a babysitter, it is more that I'm not very good at leaving the children with anyone, especially ds2, (after a bad experience when he was 6 and he was incredibly upset at babysitter trying to make him eat cottage pie although I have been known to leave him occasionally and he's fine (loves it if they are teenagers!) So I really should be more proactive in taking other children out without him. I suppose if your child has an "invisible" disability which is not crippling, just disruptive and prevents them socialising much, you tend to think you should manage everything as a family, but you are right he could probably do with interactions other than just his parents and school. And maybe a lovely babysitter occasionally is the answer.

swanriver

your story demonstrates the amateurism that exists in the UK support services. There seems to be a complete lack of understanding of the types of communication disabilities that may exist in any family, let alone a family that has a diagnosed communication disability.
Unfortunately the behaviorist theories of how we are all expected to live, which dominated until the advent of Neuroimaging, still predominate. Neuroimaging has helped to identify and define the many cognitive issues / problems that can exist in any human, and more specifically those who have some form of information processing or communication deficit. So they are about 20 years out of date, or demonstrating their professional ignorance. Also to provide the understanding and support you may require will cost them money, which their employers are unwilling to provide (Local Government, and Central Government, would mean a tax increases to cover the costs for all who require these types of services).

Families are the best source of mutual understanding, so may be your DH has some understanding of your DCs support needs based on his own experiences, and / or deficit support needs, which may very different to your own. This is often the case due to the genetic nature of these types of differences, at least one parent or member of the extended family will have similar issues. And some like me can be hoarders and do not like change, as our coping strategies are based on routines to work around the things we are least able, or not able to do, so that we can survive.

So outsiders usually have no idea how to help, and most of the so called professionals can only rely on what they have read in books, which is second hand information at the very least, based on a researchers investigation to others who may have similar issues.

Justabout I completely agree. It is unacceptable for him to belittle me, even if it is due to provocation (feeling fed up with screaming children, state of the house, disorganisation) just as it is unacceptable for me to scream and shout at the children, or for them to kick people when they are feeling fed up. I think it does help to KNOW these things are not negotiable. Just because something is uncomfortable doesn't mean it is not true. Thank you.
Still families are slippery aren't they and it is difficult to know where feelings start and end. I suppose giving lots of love is the only negotiating tool which truly works from both perspective of parent and child. And love is about listening not screaming...so onwards and upwards.
Dolfrog very interesting...in way we are inevitably cast back on our own resources at some point, and I suppose what professionals need to do, is tap into our ability to make use of our own skills, however latent they are. Thank you too.

Its worth asking any local carers charity or social services about sitters ours is a trained nurse and has a child with asd, so pretty perfect, but before her I would leave DS with anyone