oh my, What a mess. Any advice much appreciated

[rachaeljoules]

Hi,
Im Rachael mum to 3 beautifull children,
I have Jayden 6, Jessica 5, and James who is 3 in april.

James has a multitude of special needs and some severe communication delays (he is at this time completly nonverbal)
Its taken me a huge amount of time and energy to get them to listen and do anything to help him, and after fighing for an assesment he finally has had one, Having the multidisciplinary assesment meeting next thursdaay where i will officially be told what they have found, but after a lengthy discussion today with various professionals I have been left very confused, upset and angry and them as they have said they would diagnose with severe autistic disorder (low functioning) except he is very young and they dont like to make a diagnosis so early, which after all this effort feels like a kick in the teeth, Has anyone else had any experiance like this, This is what they say about James.
James is 34 months old, James has a sever developmental delay, and a severe communication delay, James is completly nonverbal advised to start PECS training with mum. James overall development is at the 8-12 month mark, with mobility at 18 months, James shows a lot of autistic characteristics, HE has been observed hand flapping and spinning wheels on cars, James does not follow pointing. he shows little awareness and is happy to play alone, no words were heard from james but repetitive sounds were. referall to PORTAGE service and assesment nursery, SALT will teach PECS with mum and James

This report just goes on and on makes a very depressing read and i have no idea how any of this is going to work,
Any of you have nonverbal child? how do you cope? how did u find pecs? (if used)
Thank you so much if u can reply to me im desperate and seem so alone,
RAchael

sorry if this is not the most appropriate place to post

hi, Huge thanks for your reply and your advice, The main reasons i am so keen on a dignosis for James is
1 i have been told dla will be hard to get otherwise and i really need the cash for the PECS stuff and getting him to all his appointments,. (money is not the only reason but it would really help improve his life if i have)

1. it seems impossible to access support services and im getting so down and angry with it all.,

and i kind of really want to know what is wrong with him, i dont know why and i suppose it wont make much difference to me but i feel having a "name" for it may help.

I get my say at this meeting so ill have to try to get my say in without breaking down I seem to be doing a lot of that lately, i think thats partly due to the lack of sleep.

This is affecting our whole family we have a ssmal home so he has to share his bedroom with his 6yr old brother who is in school so being woken 3+ times per night by his brother is affecting his performance at school.

James is such a lovely little boy and is happy (most of the time) so as long as he stays that way as long as he is having the best life he can im happy,

Huge thanks for your message of advice and support, been feeling so desperate and alone recently, i dont have any family so no one to talk to really

Rachael

We havent had to use PECS with DD but we do use them alot at work, and they are great if used rightly. There is loads you can choose froma nd tailor to yours and his needs. Its great you have SALT on board but please ask them to agree a set amount of time and how often to start with because so many see them once and then just sent home with stuff to do at home for 6 months
If you can get a dx it is helpful, and I know a friend with a little girl age 2years who was given a dx of autism recently. Unless they can offer anyother possible reason for his behaviour, then i think you should pretty much insist, but i know thats hard.
Do you have someone going with you?
Is there any kind of specialist preschools nearby that may be able to provide him with some extra input? or even one that will give him one to one the whole time?

And yes you are posting in the right place

oh and if your log on name is your real name, you might want to change it, only because MN chats come up on google easily and you might not want everyone knowing your bussiness. Hope you dont mind me saying that

yeah i realised that... cant figure out how to change it, nt that ive got anything to hide... but u never know

go inot my mumsnet at the top, then sign in and click on your details, then just change chat name and save

Hi Rachael

I have a 10 year old (very affectionate and loving) non verbal severely autistic son.

When he was diagnosed (aged 3) they said he had an 'ASD' but they couldn't pinpoint where on the spectrum as it's hard to tell when a child is young. I think this is a good approach.

However, having said all that they are offering you good things. PECS -taught by someone who knows what they are doing- can be literally life changing so that is definitely something worth persuing.

At your stage I think you need to 1) concentrate on Pecs (it won't hold speech back, if anything it will help it come). 2) remember they do not have a crystal ball. They have no idea whether your son will talk, so just ignore that. and 3) don't think about the future but know that if your son does remain non-verbal it will be fine and not such a problem when he is 10. Not trying to downplay it, but just saying it isn't worth worrying about now.

Thank you, and thank you for your reply, ill find out next thursday how much and what he is going to get, they say they have a special assesment nursery here for children with additional needs, and class groups of 7 with 4 staff, they are trained in using PECS and are very experianced, she is gettin a refferal to that and its up to the education authority if he actually gets it,

They said i need to get right in front of him when communicating with him, which seems imopossible as he wont gain eye contact and if he does it for a fleeting moment only.

Thanks again for your support and advice

oh a class full of people trained in PECS is perfect. Seriously.
I wouldn't bother with eye contact personally (I am currently looking at interactions involving children with severe autism for work). What I have found is that with lots of pressure eye contact goes, with a more relaxed environment you get it. For PECS, his eyes needs to be towards the symbols and the sentence strip (eventually) - don't worry about eye contact. Not yet.

ive been searching the internet for pecs aids, the communication books and boards but have only found a site in usa and im in uk, are there good aids here in uk

Wow a much greater response than i expected so thank you, its nice to know im not alone

www.sparklebox.co.uk

trainland.tripod.com/pecs.htm

www.dotolearn.com

Hi rachaeljoules, welcome to MN. Apply for DLA today. Phone 08457 123456 to ask for a pack. You will have 6 weeks to complete it, but then they will backdate any award to today. You do not need a dx. All you need to demonstrate is that your DS needs significantly more care than a typical child of his age.

DD1 was awarded high rate care in December 2008, and we didn't get a diagnosis until May 2009.

Hi Rachael. I am also a Mum of three (7,5 and 3) and DS3 was diagnosed with autism in July 2009. It sounds as though you were not expecting the diagnosis so take some time just to get your head around it. Agree ring DLA we also got higher rate care without dx. The letter you have detailing the suspected diagnosis will be enough to get DLA. the best guide to DLA is on Cerebra website so use that to fill it in. If you have Carers Resource locally they will also come out and help you fill in the forms. If you get high rate care you can get Carers Allowance but they will tell you how to apply once the DLA comes through. Cerebra has a free library of books they will post you about ASD.

You can also ask to be referred to the Disabled Childrens Service at Social Services and be considered for support. We get 4 hours a week direct payments to pay for some help at home so we can spend some time at weekends with our other children.

You will be worrying about your older two. Mine have coped really well, the benefit of having three is that the older two have each other and don't look for as much from you or DS3 as they would if there was just one sibling so thats makes life a lot easier. We gets lots of support from parents of our older two children's friends eg picking up from school when we have appointments, having them for sleepovers, and some Mums even come and babysit for us so we can go out. So talk to the Mums you know and tell them what is happening so they can help you out.

Don't get too hung up on the lower / higher functioning label. We were just given a general ASD label - we looked up the criteria ourselves and put him moderately severe; but children with autism have 4 areas of difficulty: language / communication; social; rigidity / lack of imagination; and sensory. Children can be mild, moderate and severe under each heading and often a mixture. High / low functioning is generally used to mean verbal or non verbal or high / low IQ but there are non verbal adults out there writing novels so this perception is shifting ie being non verbal doesn't mean low IQ necessarily. I have read threads on here of children with a HFA dx or mild autism diagnosis whose sensory and behaviour problems are far more severe than my DS, but because his social / communication skills are behind he has the severe label and they the mild one. There isn't alot of consistency in how these labels are applied and much can change from 3 to 10. So where your son is now is not a fixed point. There is much that can be done to help him along. Specialist input is key - in USA the best programmes now succeed in 90%+ children becoming verbal. So take any help offered and push for it to start now.

It sounds as though they are setting up some good support for you. We are still fighting to access any specialist support where we are all ASD children have to go to mainstream with untrained staff and an Autism Advisory service who flit in from time to time. If you can access a good SN nursery this will be a good start.

Often after diagnosis they build into the plan a period for you to accept the diagnosis (sometimes months!). You need to go to this meeting and say I don't want to wait lets get on with it. When is the PECS training, when can he see physio / OT for his mobility problems; when can he go to assessment nursery? etc, if they assess him as needing specialist nursery can he start right away? Early intervention is really important but resources are invariably not enough to go round.

Your boy sounds like mine, quite happy and content with himself. This hasn't changed. My DS is still a very easy going and loving child. You sound surprised by the dx; accept the help it brings but if you are genuinely not sure then trust your instincts you know your child best. Getting him into a nursery where they can observe him over a long period will give you more insight and it may be the full picture won't emerge until he is older. Often a lack of language hides the true picture eg of their IQ etc. Once my DS got some words it was clear he was quite bright and he became more social. He is still obviously autistic and has major challenges but already he has moved from severe towards moderate on the spectrum.

Contact A Family is a good website with leaflets on support available eg DLA etc

Keep posting, I have learned so much from this forum whatever problem you have there is always someone on here who has come across it before.

My dd2,2.10,has yet to get a dx,she doesn't speak(only dada & that is few & far between),she does not walk either,she has been dx'd for that as very hypermobile(poss hypermobility syndrome),she shows no autistic traits,but is baffling all the professionals,the only thing they can come up with is that the hypermobility is in her jaw,thus making it difficult for her to speak.
We are still in the dark as to whether she has limited understanding.
We have used makaton for the past year & she has yet to pick up a sign
She attends a CDC unit,1 morning a week,so we are hoping for some progress from that,but it is very frustrating & upsetting just 'not knowing'.
We applied for DLA in Nov last year,it took a while but finally came through a couple of weeks ago,middle rate of care & higher rate of mobility.Apply you do not need a dx!!

I agree -apply for DLA now and carers allowance if you have middle or high rate care.
Keep posting on here. Its a great support network and you will find people on here who have been through what you are experiencing right now. Dont worry about being upset in meetings either. I have lost count of the number of times I have cried in meetings with the professionals. They are used to it!

Give yourself a few days to absorb allthis,plan something to do that isn't related. It takes time toadjust and giving yourselfa break will only help James.

We found PECs to be very good, ds3 is now verbal (with asevere delays but I know how lucky we are) at 6.5 but wasn't at 3, hI think PECS was the key, e has HFA but problems with absences cause him to seem LF IYKWIM at times.

Agree to call for DLA pack today and get the laim tiggered,get someone to helpyou with it if you can- ask at CAB or post on here. My own tip is totake a pieve of paper and forevery detail you write on the form that is negative,write something positive on the paper and you might not feelso bad. Pin it up on the fridge and read it from time to timeasI find I can get bogged down by the nags (have 4 boys, 2 ASD at very different levels).

It can sem very urgent to get everything sorted at this stage and yes its important but remember yourself and your DP if you hva eone, time for yourselves as best you can makes it easier for everyone anyway. We rarey get out but if not we have a mealtogether and try to watch a film(temporarily absorbing stray DS's in a videoelsewhere)- that dos get easier as they age though

DLA is also one of the hardest things ive had to apply for it needs to be written so negatively for them to understand the difference form your 3 yr old to a "normal" 3 yr old i would say tackle a page a night as it can be quite upsetting seeing it written on paper so negatively

my ds was dx with HFA at 3 but over the last 1.9 yrs huge difference in him they may be dragging heels as my ds speech came at 3.6 but if you can ask them to give you a dx of ASD for now to help you access more for his needs at pre school etc DLA can be given without dx

make sure you refer his actions to another 3 yr old and why his needs are higher such as lack of communication another 3 yr old would be able to use speech to communicate this makes it a lot harder on day to day basis as he cannot express his needs and can get frustrated melt downs can go on to up to 30 mins another child can be calmed with words we cannot do this as it makes it worse [using words from my ds there]

good luck and welcome to mn

also on DLA form i know im throwing this all in but i rarely get on here at ,moment as have problems with comp they ask for time frame on things i wrote as and when needed on all of them apart from melt downs and night wakings which i knew could be hour plus 3 times a night daily i wrote as and when needed or ongoing

and well done on all your hard work to access help for your ds i had huge fight also to get somewhere id alike to say it gets easier but sadly i still ahve to fight for everything

WRT to HFA / LFA the difference isn'tlangauge, ifaelay ahs been established that just rules autism over Aspergers. LFA means a lower IQ / learning difficulties. Only you will know rachael if that applies to your perceptions of your child, if you are not convinced (because children canmake massive leaps) do consider asking for the dx to read ASD (general spectrum disorder). It'sahrd to advisepeopleasmuch of it is regional,but somesupport services do like to a LFA diagnosis to give help so if you do have any contacts within the SN community it might be a question worth asking.

Hi.Just wanted to say, as far as DLA goes, you do NOT need a dx to apply. It is not the condition,(dx), but how it affects your daily functioning-you should always fill in the form, as if it was your worst day. You should apply now-send a copy of that report-it is obvious your ds has severe difficulties. When I first applied for DLA-many years ago, my ds was only just starting the process of being seen by proffessionals, and he was awarded it.
I know what you mean about "having a name" for your ds difficulties. I was relieved when my ds was finally dx-I could understand why he did what he did, and try and help him.
Keep your chin up, and stand firm with the proffesinals-you are the expert in your ds.
The SN road is looong and much of it is a fight, but you are not alone. Good Luck.

Hi, Before you complete the DLA form google "Contact a Family DLA" they have a good leaflet that advises you how to complete a DLA form for a child.

thank you, thank you and again thank you!
All of u for sharing your stories with me and all the advice you have given,
I have requested a dla claim form and will get help filling it,

Ive been so lonely its nice to see im not alone,

Hugs to you and all your wonderfull children
Rachael