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Anyone have autistic children - can you help this poor lady who is having some diffcult times

11 replies

BouncingTinsel · 23/12/2008 12:16

She started this thread here.

Her DP has just left her and she is struggling to get help with her ds.

TIA.

OP posts:
amber32002 · 23/12/2008 12:47

Done...hoping Jenny can make it over here.

BouncingTinsel · 23/12/2008 13:23

Much appreciated!

OP posts:
TinySocks · 23/12/2008 14:26

No experience with autism, but sending you a big hug.
My only advice would be to take all the help your family can offer and listen to their advice, even if you don't take it, open your mind to what they have to say, you never know, sometimes things are more clear from the outside. Don't do this on your own, that is what your family is there for.

amber32002 · 23/12/2008 14:45

I'd also say that if your local GP/team thinks there is any way on this earth that you're actually coping, they'll let you do it. Go to doc's surgery. Sit in chair. Tell doc that you are absolutely not coping with this situation at the moment and must have help right away. Stay in that chair until they agree to it. Do not move. Amazingly, you will probably find that someone will then do something.

HelensMelons · 23/12/2008 19:59

I'm sorry that things are so incredibly tough for you at the mo.

Definitely go and see your GP and explain to him that things are so overwhelming. Seek support from your family, don't isolate yourself but make it clear that you are trying to find your own way. Perhaps, they could offer some respite from your DS? Even if it's just for a couple of hours.

My DS is on the spectrum so I understand that things can be tricky. Sometimes I do a social story or even write up a daily planner if things are very stressful for him. Particularly as they have all just really broken up for the holidays.

I hope things sort themselves out for you, please don't blame yourself for your dp leaving - that's his stuff, not yours.

jennybensmummy · 24/12/2008 09:57

Just posted this on other post but im clueless on this whole linking thing so i have copied and pasted it for anyone who doesnt see it there!!

BIG thankyou so much to everyone for all your help, i have spoke to the other half and were going to try again and see if we can make things work. i think the main problem is that i have ben 24/7 and he is barely sleeping letely, behaviour and agression are getting much worse and i am taking this all out on him when he gets in from work. i am trying for some support etc but social services turned us down but i will definately try again after christmas as i know we should get it. im really new on here and youre all such lovely people i feel like i have made a whole bunch of new friends as all my old ones have disappeared since bens diagnosis i hae only a few left who avoid us like the plague. I hope you all and all your families have a wonderful christmas as youre all such lovely people and you will probably never know what you saved me from yesterday i couldnt have done this on my own, thanks so so so much xx

amber32002 · 24/12/2008 10:46

Jenny, we're always here. Plenty with children with autism, plenty who are tearing their proverbial hair out, a few of us who are on the autistic spectrum and can sometimes come out with good ideas for what might work. Just the right place to rant, collapse, sob or otherwise.

And autistic children are often worse at Christmas because of the change of routine, the rooms having strange decorations, flashing Christmas tree lights, the tv programmes changing - it's like waking up and finding ourselves on a different planet without warning. Plus parents are stressed out, people visit unexpectedly, etc etc.

Is your youngster able to communicate what he wants - either words, or pictures/signs?

stillenacht · 24/12/2008 11:08

Hello - am a friend of Jenny's and i have DS (5) with classic autism and DS (9) who is NT

amber32002 · 24/12/2008 11:18

Hi Stillenacht!

SixSpotBurNativity · 24/12/2008 11:30

I just posted on your other thread! Glad you found your way here.

I really hope that you can get the support you need and deserve early in the New Year, but please don't despair - as I said on the other thread my DS3 has made a lot of progress since this time last year - settled into school nursery, nearly potty-trained, much calmer and happier in himself.

MannyMoeAndJack · 24/12/2008 13:36

Will cut-and-paste my post from Chat:

Although I am not a single parent, I can empathise with your situation greatly. My ds is almost 6yrs old, non-verbal, has severe learning difficulties, challenging behaviours, poor comprehension, doubly incontinent, blah blah.

Because your ds is 3yrs old, your first priority should be to find him a pre-school placement. There will be one that will take him; Social Services Children with Disabilities department may be able to point you in the right direction, or your local council will know where the nearest Children's Centre is. Your ds is entitled to at least 12.5hrs per week and as others have said, he may also be entitled to additional funding to provide him with a 1-1. When you get your ds into pre-school, this will give you some valuable and much-needed day-time respite, where you can relax a little, catch up with your own life and sort things out at home. Of equal importance though, is that your ds will start to receive professional input for his social, communication and behavioural skills.

Your next priority should be to plague SS. You have already contacted them and they have told you, 'no'. This is their default position but it is your job to have them change this 'no' to a 'yes', preferably by constant letter-writing, followed up by complaint letters (to which they have got to respond). Remember: phones bad, letters good. Keep a paper-trail so they cannot renege on anything that has been agreed. Have them come round to assess your ds and if needs be, to assess you as a carer too. Be prepared for a long fight to secure the respite care that you so patently need - they will NOT hand anything to you on a plate. You may be given Direct Payments or they may provide a worker to come and take your ds out for short periods. FWIW, my ds has just started to access a council-run respite centre (where he can occasionally stay overnight) but this has taken TWO YEARS to come to fruition.

I would add that the Statementing process for my ds started when he was about 3.5yrs old - this is another reason why your ds should be accessing pre-school. My ds attended a Children's Centre where he was regularly assessed by an O.T. a SALT and an Educational Psychologist. All their reports fed into my ds's eventual Statement.

I hope your relationship with your partner gets back on track but I would recommend telling your parents that you need support; perhaps they would be able to care for your ds every once in a while to allow you some free time?

If your ds is too difficult to take onto public transport, then you could make inquiries about getting him a McLarens Major buggy. Again, a referral was made from my ds's Children's Centre to our local Wheelchair Services who then provided us with a Major - which we use even now he is almost 6yrs old.

Are there any parent support groups in your local area? It may be worth contacting your local Special School to see if run any groups.

I hope things improve for you soon. It is hard but it is not your fault and you do need support and so does your ds. Good luck and HTH.

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