Can't cope no more.... sorry this could be long

[jambuttie]

Hi

I am a regular poster and needed to just type away my stress and worries- well if only it would make it all better.

I am mum to 3 boys 1 @ 4.5 and 2.5yr old twins.

Twin 2 was seen at CDC in February and placed on special needs register, we are still awaiting diagnosis but it looks like it could be CP or dyspraxia. I have researched both conditions and feel relativly calm about him now. yes I still have days where I feel sad for him but overall I do good.

Twin 1 however was a demanding baby, needed constant attention but we got there with him and felt about a year ago that "h my god we are about to hit the terrible 2's".

I have raised concerns to the doctors and health visitor about twin 2 as I was finding it extremly difficultto cope with him. He is a danger to himself, has no sense of danger, has no concentration span, does not cope with routine change along with many other issues.

Twin 1 has now been reffered to CDC for assesment by the Autism specialist which I have found heart breaking. Where do I go from here? How can I make things better?

I am so down and teary. It was hard at the beggining to come to terms with the fact I have 1 SN child but 2 was a double blow. Where do I find out more on Autism, how can I help him?

I have so many questions my head is spinning. Twin 1 is very physical towards myself and has been with DS1 lately too. He bites very badly breaking the skin almost every time on myself and Ds1. My friend who also has an autistic son has been a tower of strength to myself and my hubby. We have been restarining twin1 to stop him harming himself and others- by restarining I mean holding him to our bodies etc till the rage breaks. he is currently on melatonin too which does help a great deal as he was up anything up to a dozen times a night.

I'm sorry I have ranted and this probably all looks jumbled up but hopefully soon I will be a cheery woman again

Thanks for liostening to my rant
Jambuttie
x

HI Jamb
So sorry you are feeling so low, can't offer any wise advise I'm afraid. But you are human & having so much on your plate sometimes can feel overwhelming.
We are waiting for an autism assessment for ds2 3.4yr he also has cp we had an awful spell with him up to a few weeks ago but he seems much more settled now, so things can get better!
Hopefully you will get the dx & support for your little boys & you will be that cheery woman again

jambuttie
We are in the same situation as you.

DS has Asperger Syndrome, he is 9, and DD has CP,development delay etc and she has been referred to the CDC because we and her paed suspect Autism as well.

It breaks your heart at first when you realise that your child is SN, i know i spent days,weeks crying for both DS and DD but now i have come to the realisation that yes they are SN but i love them to bits and that their SN is part of them.

It doesnt stop the hurt though.

You talk away on here, theres a few of us with more than one child with SN and totally understand your pain.

Thanks stap

Twin2 is going in for an endoscopy and having biopsy's done tomorrow to see why he chokes on his food, whether it is his muscle tone problem or another problem

so we are up in the air as you can imagine

Hope your DS is doing well

Hi Jambuttie

So sorry you are going through such a rough time. It must be hard enough being a mum to 3 little ones under 5, let alone to have to deal with the SN issues you have had raised. You are amazing! Hopefully you will get a dx and the help you need for both your twins soon. In the meantime, rant and rave as much as you want. You have every reason to feel stressed but I'm sure you will get lots of expert advice on here.

Pages xx

PS my DS1 has developmental delay and had really low muscle tone at age 2. All his food had to be whizzed up. But he is doing really well now, aged 3.9, and can eat anything.

just couldn't not post. rant away we are here to listen.
sorry you are having such a rough time. my dd has cp and had trouble eating when small(fine now at home about to write a thread about that)
just wanted to send you a big hug it is such a hard place to be

So sorry hun, just had to add my good wishes

Hi.

My youngest is Autistic, he'll be 4 this july. Its only natural to feel sad, for me dx was confirmation of what I already knew, and still it broke my heart for him.

The NAS [can't do links, bt I think its www.nas.org.uk - but if in doubt ask uncle google] isa good source of information.

Theres a book by lorna wing called the autistic spectrum which i find an excellent and invaluble reference.

My son is on melatonin, but right now he's bad at night, he's waking 3+ times again and is impossible to settle, we trialled the slow release and it made matters worse.

You have to watch everything, to learn the triggers and hte cues so you can manage their behaviour, its exhausting... and as for cliaming the help their entitled to , be it finacial [dla] or for a statutory assessment well that nears grinds you down to nothing because its an insanely negative amount of information all at once...

my sons been diagnosed almost a year, he's made greta progress in many ways since then, because intervention could be definatley geared towards ASD, he's always goign to need a lot of support, we try our hardest but its such an unpredicatble disability even with the best help in teh world your still walking in the dark

If theres anything you want ot ask feel free!

Just wanted to send you my sympathies and love jambuttie. Can't help but didn't want to ignore your post. So sorry, you must be shattered and drained.

Thanks everyone for your kind replies.

Sorry I wasn't around earlier to say thanks we were at the sick kids with twin2 for his endoscopy and biopsies.

I got a book from the autism library yesterday to try and understand twin 1's feelings. The book is based on america though and i just feel their medical knowledge etc is different from ours so couldn't really relate to it if that makes sense. it reffered alot to american support networks etc, will go to autism library tomorrow and see if i can get another book that may help me understand a bit more.

I feel so damn helpless

jambuttie, just wanted to add i got in touch with my local branch of NAS and they sent me absolutely loads of info, all about how to deal with tantrums,fussy eating etc, its been a godsend and DS is a lot better since we put into practice the ideas the NAS gave us.

HTH

It's like finding a needle in a haystack.

I ain't got a clue where to begin, what to research or anything. When I think I have found a book that might help it doesn't.

Any info you can give me would be much appreciated

Sorry you're having such a tough time, Jambuttie.

I agree with you about the American books. Somehow I find it harder to relate to them than the UK books.

If/when you get a dx it may be worth thinking about doing the NAS Earlybird course. It's for parents of pre-schoolers with a recent dx of autism.

Do you have a portage worker? If not it may be worth referring yourself to the portage service. They will also be able to give you lots of practical ideas and techniques to try.

It might be worth keeping a diary of your Twin1 to see if there are any hidden triggers for his behaviour. It's not always easy though. My ds2 (3.5yrs and autistic) can suddenly fly into a rage for no obvious reason. Often his meltdowns are caused by a sensory overload - too much noise, people getting too close to him, room too bright etc.

If holding him firmly seems to help then it may be that your Twin1 likes the feel of firm pressure. My ds1 (now 6yrs and also autistic) used to love having cushions pressed down on his body. Wrapping him up firmly in a heavy duvet was also a particular favourite.

Keep posting if it helps. xx

Thanks coppertop for the message.

I just feel it's really hard just now. I mean I am scared and confused and don't understand twin1 and can only imagine how he feels

Can anyone suggest any good reading material to us that may help us understand?

I have a 3 year old with a recent ASD diagnosis ( I have 2 other children aged 7 and 1 but they are ok). Once you have this the support is fantastic - in my area - I have him now at a playgroup 5 mornings a week and he has gone from zero communication to understanding at a two word level in a few months. The Social Worker and Health visitor are frequent visitors - I am currently doing the Hanen course which is helpful. I sincerely hope once you have been to CDU and have that ASD dx your support will be as good.

is there a local autistic trust in your area as they`ve been a great help to me and will com eout to the home and offer practical strategies as well as just an ear to rant to!!

A lot of people seem to like the Lorna Wing book. There are usually a few copies in the library so you wouldn't need to buy it.

Tony Attwood writes about AS. Parts of the book may not be relevant so just skim over those. Again it tends to be in libraries.

For more anecdotal explanations of things like routine, sensory stuff, social skills (or lack thereof) I liked Luke Jackson's "Freaks, Geeks and Aspergers Syndrome". Don't be put off too much by it saying that it's for teenagers. It's also written in a way that's useful for parents and teachers. It deals a lot with the high-functioning end of the spectrum but IMO there were some really helpful chapters. It's also not as heavygoing as some of the more technical books.

You could also try googling for things like "sensory integration disorder".

When your ds is assessed it should give you a clearer idea of which areas to concentrate on, eg with my ds1 I was looking more at fine-motor skills, language and sensory problems. With ds2 I concentrated more on social skills and sensory problems as they were his main areas of difficulty.

sounds like a stressful time for you all, we have twin girls with autism and DS with with autism, i guess it would feel odd to have a child without autism now as we are so used to all three kids different ways and different levels of autism/understanding, i hope thing become easier for you soon.

must try and get these books to help me "try" and understand

By anychance do ant of you know where I can get a "meltdown" proof personal cd player thingy? Twin 1(2.5) loves music and I thougt if he gets mega stressed etc I can put this on him to calm him down

my girls have an mp3 player as they kept breaking the cds.

maybe should judt get him an mp3 player. he always tries to get his brothers too

Hubby and i are at crisis point right now HELPPPPPPPPPPPPP!!!!!

Nursery nurse is due in an hour to spend an hour with twin1, this also gives twin2 and ds1 a rest too.

I so can't cope right now.

Doctor gave me anti depressants to take although i am taking them i don't think this is the answer. Twin2 was put on SN register in February then we find out about twin1. Still awaitng diagnosis on twin 2 too.

All this bloody uncertainty is driving me insane, I wish they would just tell us whats wrong with my sons so \I can deal with it.

I am taking all this out on hubby too and our relationship was struggling big time until he said last week, sort it together or its over. He didn't mean to be nasty but had to to bring me round a bit.

At least he is a tower of strength but he is struggling too to deal with all thios

I'm a few hours too late but wanted to check in to see how you're doing, JB. It sounds like you're going through hell at the moment.

F

Thanks hun

I am just finding it so hard as is hubby. We should find out this week hopefully if the twins have got into the SN nursery. The HV meets the panel on Thursday so fingers crossed

Good luck.