Probable Asd - sorry long - i'm really pissed off - can anyone give me some hope?

[h20]

Hi I'm new to posting here but have spent the Christmas holidays with a black cloud over or around my head. Am usually at work but have been at home for 10 days. Am a lone parent, work full time, two sons - one of 5 going on 6 and one of nearly 4 ( in february). I knew the little one was different early on, and as soon as he was walking he was like a whirlwind, running off, unresponsive to me, would never sit quietly and look at books etc. He has had one to one support at nursery now for a year and the educational psychology Dept. here in Jersey where I live have now suggested that he starts a formal assessment process for ASD (Autism/Aspergers?). Sorry about this but I just feel incredibly angry about it all. I wish I had never had him and I resent the stress and chaos that he brings on me and my other son. When I thought it was just the terrible twos/threes I could cope, thinking it would pass - but now - I feel we have all been consigned to a crap and limited existance. I can't ever imagine enjoying going on trips with them both or doing normal family things as it is always on a knife edge as to whether he is going to have a melt down and he won't keep still apart from when he is watching bloody thomas the tank engine dvds. Total despair at times. Joy of parenting nil. When his brother and I get some time alone together I suddenly realsie how nice having children can be. Terrible self pity I know, but how to move forward...

Maybe it's just me but things became a lot easier when I knew what was wrong and why.. It didn't change ds's behaviour.. But what it did was allow me to understand him better and have access to parenting skills and strategies directly for asd children.. Which in turn made things better.
And also allowed me to really celebrate the great stuff that ds did/does and really enjoy lots of small ( but huge to ds) milestones! ... Who'd think you could actually dance about a kitchen because your son asked what he was feeling when he was embarrassed!.. But you can!

Sorry your finding it really hard at the moment, the not knowing what is going on bit is horrid and stressful.

But it does get better

Thanks ArsenicCupCake

How did you learn the skills and strategies? I know his one to one suppost worker uses picture cards and talks abou stories or something (to try and get his hair cut - he looks like he has been raised by wolves at the moment!! ) but I am clueless..

I just want him to be normal

Also, how to explain to his brother that we need to make allowances for his brother's behaviour??

Jellyhead - The meltdowns are soooo embarassing.

I sometimes wonder if it is some sort of cosmic bad joke as I am the kind of person that REALLY cares what other people think.

I try not to make eye contact woth people who are tutting and staring, but it is so humiliating and stressful, and quite oftem my normally well behaved and reasonable older son will start being all headless chicken-like during his brother's meltdowns as well - and then I don't know what the hell to do...

We have about 50 die cast thomas characters which we have to take with us in a bucket everywhere we go

Hard question!

Lots of it is trial and error.. Particularly if you are doing this without/before assessment as your probably not quite sure what is kicking things off to start with.
However it can be done and lots of strategies you can use for asd children will work happily with NT children too. And if something doesn't work after a decent bash at it, then you have a go at something else!

Boards like this are great as there are lots of ideas to try. ( will get to that bit in a minute).

With regard to your other dc .. In our case it was just a matter of saying ' well your good at x y z.. But find a, b, c not so easy and need some help with those things... So ds is the same but finds other things hard.. So we do it this way..'
it's not a brilliant answer but it's the best I could come up with for my dc's

Right to stratagies... We use loads.. But it depends what you'd like to improve. If you post a list of the worst bits I'm sure we can all see if we can throw ideas at you :)

OK thanks very much ArsenicCupCake, that does give me some hope - I will come back tomorrow with a list!!! Need to give it some thought.

Must go to bed now as it will all go pete tong tomorrow if I don't. By the way, i'm not sure what an NT child is??

Neurotypical .. Aka your average brain

H20 He sounds like my boy!

Dont despair all the pictures / stories is about really is no surprises. It's funny but you get very quick at saying what is going to happens, when and what it will be like when it does.

It's bloody hard work x x x

We've just reached the age where it looks odd for DS to have a meltdown (he's now 4) and we're starting to get the looks. Really for each of these things you need a systematic program eg haircut etc where you desensitise to the situation over several days, weeks etc. We find when we take this approach - and plan it and work up to it, it does work and things do get better, the trouble is there are so many situations which DS finds hard it sometimes feels it will take years.

DS had my old ipod touch and his Gran recently bought him an ipad and that has been great, he loves it and we can take him out (he's still in a buggy) and he hides under a blanket and uses that.

Can you reduce your work hours to give you a few hours off to yourself? Are you claiming everything eg DLA etc which might make that feasible? I get some time now and ok I spend it doing the supermarket shop and having a coffee afterwards but it is a break of sorts.

We are very honest with our other children also - the 6 year old gives a great explanation to other children about what autism is. It helps they understand, sometimes it can be sad as DS1 will say 'I am going to have a better life than DS3 aren't I'. But it also shows that even at 8 he can appreciate how lucky he is. I think although it will be hard growing up DS1 and DS2 will be nicer kids as a result of DS3, and appreciate the small things more.

For a parent its a grief of kinds and the emotions that come with grief - denial, anger, depression etc also come with parenting our kids. But it does get easier over time - you have to fight like mad to get good support but if you succeed, life does get better. And they can make good progress!

Cerebra do a good guide on DLA and also have a free postal lending library with books on ASD. I read loads, went on workshops and we now do ABA (for a year we did the ABA ourselves but now have won at tribunal a program funded by the local authority). Having autism specialists working with us - actually demonstrating strategies - has been the best thing. Now we can say DS won't wear his coat this week, or brush his teeth and they set a program and several times a day we practise that skill with set rewards and within a week its mastered. Then next week a whole new issue pops up! Before we won a good package we got a untrained 1:1 and a half termly visit - we would never have got anywhere with that level of intervention. What children with ASD need is really underestimated in mainstream - I have yet to meet a child with ASD who would not benefit from daily specialist teaching in the early years.

We also get support from the parents of friends of our other children. They help out with the other kids - so they don't miss out as they get to go to clubs and the cinema even if its not with us. They also see DS3 day in and day out so really understand, whereas family who are distant don't always get it.

normal is overrated anyway :)
You need to take time and learn new skills to deal with him. If he has ASD he will see and thinki of things differently so by changes things can have a huge impact on him.
You need to work out his triggers, as no two children are ever the same. I kept a daily diary for a while which helped me sort out my head but also see links between things and dds reaction to it.
Use the 1-1 worker he has, ask for support from the preschool advisory services and get a few books and start from there.
None of us knew what we were doing at the start but you will always find great support and ideas to try on this board.

And I know its hard but try not to be angry with him, he wont understand it anymore than you do and you will find ways of managing him so that you can enjoy him and time with him.

Okay. You need to find your own path of acceptance and a way to handle things and improve outcomes for your ds and your family.

You are not without powers to change and improve things. It is a huge burden to know this but also give you hope.

One unpleasant thing you need to know is that in a survey conducted by Cambridge University and the NAS they found that nearly 15 percent of male adults with autism had attempted suicide with 50% thinking about it. The sample was fairly small but it is still a shocking statistic.

It is important that you realise asap that your ds cannot help these behaviours that wind you up and frustrate you. From what you know about the world and from how your brain works it is natural to interpret them as naughty or even deliberate, but they aren't.

Frustrations at being misunderstood and consequently punished for things without knowing why will make life worse for your ds and your family.

There is a LOT of information available so get started, but do it at a pace that you won't find overwhelming.

And, do allow yourself self-pity. That's okay and normal. The place you are at now is the WORST part. Things will get a bit easier as you adjust (yes I know you don't want to - course not - but you will).

hth

please also dont believe you are stuck with a limited and crap life living with a child with ASD. I have 2 beutiful girls, both with ASD and one is just 3 and causes me merry hell, but i only have to look at my eldest to know how well we can do as a family.

You need to help him, as trust me no one else will can do as much good or damage as you can as his mother.
Find his good points, even tell us a few, he is only 3 years old, so way to young to write him off, and some of the behaviours you see will be his age and others you will find ways of managing.

Hope tomorrow brings you a better day.

Your post just about made me cry (and I'm at work ) - because you put in words what I sometimes think....

I can tell you it will get better. Because now you've joined up with us fab lot, and now you know what you're facing, you will be able to find heaps and heaps of things to improve your little chap.

The meltdown's do get better, and ASD is a developmental delay - so even if you do nothing he will improve, albeit slowly, by himself.

But there's no reason to do nothing. There's heaps and heaps of things you can do.

However, having said all that, and having made huge improvements to my children's lives, there are still many many days when I regret / resent them all :(

Big hugs.

What you need to do now, is work out what is his / your biggest problem, and then work out what you are going to do to help it....

Even bigger hugs.

He doesn't have meltdowns for no reasons - it just feels like that.

You have to work out what is triggering his meltdown. Is it sensory overload?

H20, as others here have wisely said, understanding what causes us to behave that way will make a huge difference.

I'm on the autism spectrum. I started out fairly unresponsive to people, limited repetitive speech, lots of repetitive movements e.g. rocking, total obsessions, couldn't go to social events etc etc. I'm now a mum and a co-owner of a lovely business. Life isn't easy for me, but it's worthwhile.

It may look 'orrible right now for you as a mum, but things can and do change for most of us. Especially now there's more understanding and help and support out there (never enough as yet, but there's some...).

You can probably imagine what it's like to be blind, or deaf? Imagine the exact opposite of that...a world where you can see so much detail and hear so much detail and feel and smell and taste so much detail that it's like living in an avalanche of the stuff with no way to switch it off - a bit like having every TV, radio, computer and speak turned onto full volume, all day, every day.

A shop might be interesting for most children. For many of us, it's sensory hell that hurts our brains so much as it overheats the brain wiring until we melt-down or shut down. Same principle if we don't know what's going to happen when.

And we can't see body language, hear tone of voice or see facial expressions/eye contact properly, so have no clue what you're trying to say to us or get us to do. It's just lots of movement and noise.

There's ways round nearly everything once you know what's what. Will it be easy? Nope, that's for sure. You need the right help and support, for you, for him, for his brother so you get some quality time with him too.

Have you contacted Autism Jersey?

www.autismjersey.org/ they run training/information courses for parents as well as offering support and opportunities to meet other parents. It may well be helpful to give them a ring 0800 735 1070 or if you dont want to ring them, pop into their shop in St Helier - there is bound to be someone who would be more than willing to let you offload.

The whole organisation there is only 6 years old and set up by parents so everyone has been there, done that so to speak and all of us have had feelings like you describe. It is a natural part of the process of coming to terms with it all.

Hang on in there, it really does get easier, the more you learn about it all and how it affects your ds in particular the more you become acclimatised to it all and I promise you will be able to do things altogether, but just a bit differently to how you might have done things otherwise

hope op is ok

Hi everyone, just returned to mumsnet after a busy week and so touched by everyone else that has responded.

Thanks DayShiftDoris, Agnesdipesto, lisad123isasnuttyasaboxoffrogs, startingafresh, indigobell, amberlight and eat your veg! Your comments have given me a lot to think about and made me realise I really do know very little about asd at the moment, and I will definately pursue the autism jersey link so that I can find out more about it. Also, Agnes, I need to find out what the local situation here is in respect of DLA (a benefit?) as we have our own set up (or not, as the case may be!!)and government etc here in Jersey.

What a lovely bunch of people that you are! I will re-read this thread as everyone has been so helpful with suggestions!

I am not sure about triggers and even what to describe as the worst behaviours - the meltdowns can start for what seems to be a variety of reasons. Maybe a diary is the way forward.

It is really interesting to hear from you Amberlight, who can describe from 'the inside' what it is like. If you don't mind me asking, presumably you had to learn to internalise the coping strategies?