?Aspergers: what next?

[SqueakyCat]

I'm sure this has been asked / discussed before, but it's about me and my little boy, and right now I don't feel like searching the archives. Sorry.

I also know I have life very easy, compared to many, and so this isn't a moan, and I'm only a little upset (mostly relieved to hear that what I've been struggling with over the last 18 mo isn't actually the norm).

My DS1 is 2yr10mo and hard work - mostly ongoing minor violence. Following concerns raised at pre-school, I've seen HV. Both pre-school and HV suggested Aspergers as most likely dx.
HV has said she'll refer to SALT (9mo waiting list at last count) and Child Development Clinic (6wks wait), and has arrange home and pre-school observations (in about 3 weeks time).
Pre-school SENCO has written an Early Years Action IEP, a behaviour action plan, and is trying to get 1-2-1 funding for after Christmas for him (when he's gvmt funded for his nursery place).

Firstly: is there anything else I should expect / ask for / push for that would help him / us? Is getting private SALT sooner a good idea? Would SALT really help someone so unco-operative?

Secondly: what is a realistic ambition for progress? what can I hope for for my lively, delightful, affectionate, intelligent little boy? is aiming for fitting in passably OK when he starts school too much to hope for?

Thirdly: it feels as if it's all my fault (mot bonding well as a baby, nursery when young and going back to work, keeping in nursery when not going well, having another baby blah, blah, blah ...) anyone want to tell me it's not?

have changed my mumsnet name, as don't want to be recognisable in RL. I've discussed his behaviour on parenting forum once before, and told Jimjams "I'm sure he's not autistic", so - sorry Jimjams.

thanks....

Goodness that was long.
wow to anyone with the time to read it.

squeakycat, others here have more experience of aspergers's than I do and can prob answer some of yr qus.
But this is what I know; a friend has a ds with AS, he is about 8 or so. I met him for the first time in years (she is long-distance pal) last summer at a big gathering where he knew nobody and apart from some unusal bahviour in terms of how he entertained himself (he used to write himself long lists of CD titles, nothign detructive) you would hardly have known.
He has 1-1 help but he is in mainstream school and doing very well. Also I think they used fish oils which they found very helpful.
hth and gives you a bit of confidence about the future.

Hi SqueakyCat.

My ds2 is only slightly younger than your ds (2yrs 7mths). He has a provisional dx of AS/ASD. The thing I've found most helpful is having a portage worker. She visits once every 2 weeks and helps with ideas and materials. You can self-refer as far as I know.

The progress your ds will make is impossible to predict tbh. My ds1 (5) has ASD and is completely different to how he was at 2yrs. He is in Yr1 at a mainstream school and settled in well. In Reception he had 1-1 help but didn't need a statement. In Yr1 the staff are now seeing how well he does with no 1-1 at all. So far he's doing very well. I think if you were to see him in class it would be difficult to spot his ASD unless you really knew what to look out for. I'm hoping that ds2 will make a similar amount of progress but obviously there are no guarantees.

The whole not bonding with baby/sending him to nursery etc really makes NO difference at all! I've been a SAHM since ds1 was born, bonded pretty well etc and still have 2 boys on the spectrum. It's a developmental disorder. Thankfully the days of autism being blamed on "refridgerator mothers" are long gone in this country. You are not to blame in any way, shape or form.

Hi SqueakyCat. My ds nearly seven is approaching the end of his assessment and is likely to be dx with AS. From what I can gather the assessment process seems to vary greatly from region to region, so I don't know what you can do to push forward for official help. I'd suggest finding out about a local support group - I go to one monthly run by Barnardo's and it's a great source of local support and resources. I've found out an awful lot of stuff by going there that I wouldn't have got to know by the normal channels.

Also, find out as much as you can about AS generally. You'll find lots of info here and on other boards, also NAS web site and AS specific boards. Don't put yourself under too much pressure to know it all overnight - it's a long process and you'll have to deal with it step by step. Try not to get ahead of yourself by wondering what the future will hold. Live in the here and now for a while, get access to support etc and see what happens. You'll need all your energy for dealing with day to day issues and probably won't have enough to spare for 'what if'.

Finally, it's not your fault. You've done nothing to make this happen to your boy, and you should try to remember that he's lucky to have a mum who cares so much about him and wants to make his life better for him.

My son is an aspie, he was officially diagnosed in June this year.

Keep pushing for his S&LT just keep phoining till you get a date, also might be worth asking for Occupational Therapy. and for someone from the local sense at the LEA to come in to Nursery, my son has an autism outreach worker who advises his school. I would also try to get him on to early years action plus, as he should get more help that way.

i am a mum of 2 asperger's boys...and i believe my 3rd is AS too....i WILL post later...but just want to say that I felt exactly as you describe a few years back.

Like you...i cannot say my life is that difficult...but it is certainly different to what i planned!!!

keep posting on here....autism is such a VAST spectrum...i often feel a fraud on this board too...cos my boys are 'so normal' in an Aspergers way!!!!

squeaky cat i feel for you.

My son has a verbal diagnosis of AS/ASD and we are awaiting the results of a full asessment which we are part through.

In my area of the uk-north west you really have to mither and push for things which is what i do!

I knew my ds had problems from being a toddler but i allowed the medical profession to fob me off thinking that they knew best.

Well they didnt.

You know your own child and know when to ask for help and you sound like you are doing everything you can for your little boy-and thats the best you can do at this time.

~Its a difficult and emotional time this that you are going through and there are plenty of us here that have been through or are going through the same so post as often as you like because no one minds and its the only thing thats kept me going.

Just to add i had PND when my ds was a baby and for a long time blamed myself but i have come to realise that it wasnt anything that i could have done to make him like he is - its a developmental/neurological disorder at the end of the day.

Sending you Hugs

Thanks for messages of support and encoragement.

How worthwhile will SALT be for him? His language is pretty good (long sentences, lots of words, etc) but largely incomprehensible to anyone but closest family - pre-school can't make head or tail of what he says. I'm pretty sure waiting list is 9 months here at the moment. Is it worth paying to go private?

Any advice on the SALT?

And any more lovely words? suddenly feeling very low.
Mon: injured myself
Tues: HV visit, said DS1 prob Aspergers, DS2 only small concern re feet
Wed: heavy day
Today: pre-school SENCO said prob Aspergers, plus 1st period in 18 months (I'm still bf DS2), plus boss rang to check when I was returning to work, plus DH away

This time last week we thought he was just a challenging toddler but would grow out of it .... now I'm wondering whether I'll ever get a goodnight kiss voluntarily.

I've an important phone call to make now - just hoping I get the right answer there, cos not up to more bad news.

SqueakyCat, So sorry you're having a truly crap time. I've no experience of AS (I have a little girl at the other end of the spectrum, another medley of delights!) but wanted to send hugs. Do you have Early Bird in your area? (run by the National Autistic Society) Do you use visual timetables? There are lots of mums on here who will be able to help.

SqueakyCat - Sorry you're having such an awful time of it.

It may well be worthwhile getting a private SALT assessment if you can. I have no personal experience of private SALTs but I'm sure that between us we could probably point you in the right direction.

How is your ds' language comprehension? Is it roughly the same as his spoken language or is there a gap? I only ask because ds2 now has pretty good spoken language but is good at hiding the fact that he doesn't understand very much. Instead he will latch on to key words in a sentence and ignore the rest.

I hope you get at least some good news this week. xx

He seems to understand pretty well - can follow instructions (if so inclined) eg could be told to "get x from the bookshelf and give it to baby brother", knows what's going on etc - though maybe I'm wrong there. Very few people can understand what he says (he's very unclear) which pre-school think adds to his frustration and he doesn't "make conversation" in a normal way - will not say hello / goodbye etc without LOTS of prompting, doesn't ask for assistance, doesn't start conversation.

Got the news I wanted from the phone call, thank goodness . Am busy doing TESCO order with LOTS of goodies for me . Shame I can't hit the wine as breastfeeding.

Hi again - feeling rather crummy. MrsF, if you get a chance to post again, would love to hear from you.

Jimjams - hope you noticed the apology...

My son went to a special assesment unit at a special school he was taken out of nursery to attend all the children were pre-school the unit was apart from the actual school but used the facilities. The Specialist teacher was able to erradicate a lot of possibilities at the time and he received support on any areas which needed work. I do not know whether this service is available all over the country.My son was statemented on the evidence provided by the unit.

squeakycat i have Aspergers, it was only diagnosed this year.

As a result my childhood and teenage years were a misery due to me knowing that i wasnt like everyone else and everyone else thinking a was a bit geeky.

Im not saying that your child is like this in any way but if theres anything that i can help you with that i remember from my childhood then please ask away i,d only be too glad to help, also my DS has autism/aspergers and was terrible as a toddler, eg violent screaming etc so i can also appreciate what you are going through.

You can CAT me if you would like to talk offline.

HTH

and how do i tell anyone else? i've not yet managed to tell anyone as not sure what to say... and i do need to tell someone.

suddenly the conversations about other people's kids with 'autistic tendancies' other people had with me are making sense - they were trying to tell me something. argh.

squeakycat, my DS1 is six and has a diagnosis of HFA. When he was younger, he was constantly in trouble at nursery for biting, hitting and kicking other children and at home, we did not dare leave him alone with our DS2 as he would knock him down, hit him and bite him (once he bit him on his side and made a wound that took weeks to heal).

I'm happy to say that things have improved immeasurably since then and, like Coppertop's DS1, he now manages well in mainstream without a statement. He does stil lash out all too quickly and he does still have meltdowns at home, but all in all things are far better than we dared expect they would be three years ago when he was diagnosed.

In answer to your questions - sounds like you're doing loads already - in particular 1-2-1 at nursery should help a lot - it was the salvation of my DS1, I'm convinced. If you can afford SALT privately, it can't do any harm anyway.

It's hard to say on teh second question as it is just not possible to predict what he'll be like when he starts school, but based on my experience, it's not too muych to hope for, no.

And it's not your fault. It's definitely not your fault!!!!

My DS (6) has mild Aspergers. I would certainly recommend private SALT if you can afford it. It made a huge difference to my DS when he was about 3. His speech became much clearer very quickly. In his first session he would not say a word for the first 20 mins just nodded or shook his head -- not very cooperative. But after that he began to really enjoy the sessions and now speaks beautifully. He still gets muddled with his language (gets some things the wrong way round, currently confused between conkers and coconuts, etc.) But he's in mainstream school and doing fine. If you need help finding a local private SALT, look at ASLTIP's website. Oh, and when you get to the top of the list for NHS SALT, take that too. Hope this helps.