As diagnosis What next? Need to vent frustration a bit too

[alison222]

Hello,

We had our follow up meeting with hospital after assesment to discuss report.

I came out very frustrated as there seems to be little concrete help on offer directly.

We were offered a place on a parents support group Weds Am for 6 weeks in Sept when they will discuss our needs if any - they seem to hope not - further.

Neither DH nor I can make this time - we both work. they said What about if we give you more notice - er no still not 6 consecutive Wed mornings . Oh well we might consider other days? Do they not expect us to work??????

I kept going back to - sdo where can I access information and help about xxxxx, and they agreed to refer us to soemthing called "Early Bird Plus" where they come and observe you and give you pointers to help handle situations better. Has anyone had any experience of this? What happens if DS is having a "good" period when they come to observe and there is nothing much to say?

School were waiting for this report so how do I get them to act on the social aspect of it all? They were expecting more direct poiters I think not just a long winded report confirming the DX, which we had already had verbally.

I am so frustrated at not being able to do anything practical.

Is it normal to feel like this?

Sorry about awful typos I hit the post button instead of preview

Very normal.
It is overwhelming.

Early Bird is an early intervention programme run to involve parents with children with communication difficulties.

I am a speech and language therapist although not involved with Early Bird. I think anything that gets you out and meeting up with other parents and related professionals is a good thing. You can start networking and assessing your options.

Do you post on this section a lot? If yuo don't would really encourage you to stick around.Tonnes of practical advice and support from some very switched on people.

And don't worry re your ds having a 'good period' when assessors (or whoever they are drop by).I have been doing home visits with the families of children with comm. difficulties for over 12 years now and even if the children are not even there, we never run out of things to say.

Thanks for posting Moondog.
I haven't posted here much at all except to try to get a bit of advice as to where to start with social stories.

I guess my main concern are how to teach myself strategies and how to ensure that the school are doing as much as they can that fits with my expectations too. They seem very clued up on things to help acedemically - but that isn't Ds's problem, and much less so on the social and emotional side of things

Alison,yes, that is common.

Have you seen a salt? The right one can be really helpful with this stuff (we call this area 'Pragmatics')

Have you looked at ICAN and AFASIC websites??

I'll link...

ICAN

AFASIC

Hi Alison,

This was what I was asking today at the same type of meeting. It seems strange that there is very little if any help/guidance available.

At least we are in the same boat.

Hi Jeanie, Nice to say hello - sorry you are having the same problems as me though.

Moondog, thanks for the links I will look properly tomorrow. I am off to bed now,

DS doesn't have a problem with speech per se - more in sustaining a reciprical conversation, and with reading non verbal signs. His language is very good and he does understand and use it appropriately but only if he is interested in the subject matter.

Goodnight

Has your DS been assessed by a SALT alison? Children with AS can appear to be using langauge appropriately without actually understanding IYSWIM. I was very surprised at the difficulties picked up by the SALT when my DS, who has AS, was assessed last year.

Alison-just read your post. Our DS's sound very similar.

Hi Alison, just wanted to add my support. My DS was diagnosed with as and add last October. I also know a couple of mums locally with AS kids. The school should be offering social skills sessions each week - my ds has two 20 mins sessions a week. He also does a 15 minute football sessions with a LSA as well. He is also receiving support from a LSA in the classroom (not one on one) for 10 hours a week and the school have said they are devising a programme for next term to help him with his fine motor skills. The social skills sessions are following programmes which have been specifically devised for AS kids and I have noticed a real difference with DS after a couple of terms.

I only got this by being quite aggressive with the SENCo, initially she assured me ds was getting help but the sessions were not actually taking place. He has been assessed by an ed psych and she is coming in again next term to do another report.

I am not doing Early birds but others are and they appear to offer a good service and opportunity to meet other mums in the same position. You can then find out what sort of programme their kids are on at neighbouring schools and insist that this starts at your school. Obviously what you do at home is important but I think that the school has a vital role to play, your ds is spending a lot of time there afterall. I would also recommend you buy a couple of books about AS so you can begin to understand where your ds is coming from (if you have not done this already). There are lots of us in the same boat here so keep posting for moral support.

Hello Tiggiwinkle and Caroline,
Thanks for posting.
there was a SALT at the assessment but she didn't do the main one with DS she stayed with us anddid the parental part of it- but had been in on the 20 mis or so that we were all togehter when they were explainingwhat was going to happen and had a quick chat with DS - probably not enough for a full assessment though.

School have promised to include DS in theor social sessions, but I didn't necessarily get the impression that they were specific for AS just for children with difficulties in things like taking turns etc, DS has more problems with reciprocity and in looking at people when they are talking and picking up non verbal cues.

The report is supposed to be circulated to the school, the SENSE team and GP, but how do I get them involved or is that down to the school?
Can I request the Ed Psyc to see DS?

So many questions.....

Oh and there is a very local Special school for Autistic spectrum children. How do I find out abut any possibility of outreach from there? Can I request it?

School have said they don't think I wuld get a statement. Do I need to give them a chance to put things in place and see how it goes?

Hi Alison,

My ds does not have a statement, he is on school action + Some AS kids do have statements however, a lot will depend on how he manages in the classroom. It is not up to the school whether or not your ds gets a statement: if you feel he needs one to one support then you are going to having to push hard for one. IPSEA are a useful charity in this regard and also NAS. I am sorry I am not being more specific here but I don't know how severe your ds's problems are: it is untrue that AS kids can't get statement. I am sorry to say this, but you really can't believe a lot of what the school/Council tell you on this subject.

You def need an ed psch report whether or not you decide to go for a statement. Remember however that they work for the council so tend to minimise problems. I suggest that you ask for an ed psych report as a matter of urgency as soon as you get back to school.

Regarding the social skills sessions, obviously any help in this area should be welcomed. However your ds will probably need constant, regular help throughout his school career. The help needs to be tailored to his AS. I suggest you ask the SENCO to organise this immediately. Also ask about what the local special school can offer in terms of outreach etc. Again, sorry to go on about this but you are going to have to be very very persistant and assertive now. The school will very likely to fob you off with "including ds in social skills sessions every now and again." This is not good enough - you need to know how often these sessions are happening and what specific help your ds is getting. I found that initially I had to be asking each and every week about things, it was not until the school got sick of sight of me that things started happening.

Hi Alison,

Re your comment:-
"School have said they don't think I would get a statement.

Bollocks to that excuse my French!!!. Bloody short sighted and hopeless this attitude of school is, serves no-one least of all your son. As Caroline correct surmises as well its not up to them so how would they be so sure anyway?.

There is nothing (repeat Nothing!) to stop you as a parent applying to the LEA on your child's behalf asking for your DS to be assessed. Infact its better coming from you than the school anyway; you have far more power than they do in this regard.

IPSEA are very good at all this and have a website which has letters on it that you can use for the LEA - its www.ipsea.org.uk.
BTW you will need to be both persistant and bloody minded - they will likely not agree to assess initially. You as the parents can appeal this crass decision - the school cannot. Therefore any request for a statement needs to come from you.

"Do I need to give them a chance to put things in place and see how it goes?".
In a word NO. Apply yourself for the statement asap. That will be the only way the school will act on the social side of things.

Chances are school won't put anything specific in place unless you kick up a fuss and even then you'll be lucky to see much from school. It depends very much on the school.

(SA plus in my son's junior school anyway is not worth the paper its written on).

Attila I had a feeling that it might be a bit like this - having to fight for stuff.

I don't personally think DS is bad - one or two people I have told have said - Oh I just thought he was just a bit high spirited, so that reassures me somewhat. He is 6.5 BTW.

He mainly has problems with talking about subjects he isn't interested in, eye contact, reading non verbal signals concentrating on tasks that involve extended writing @ school, handwriting is hard work for him as his fine motor skills are not great.

Je does have some close friends though as he is madly interested in doctor who, scooby doo and computers so they are not unusual interests.

Its the social skills help he really needs and I really feel in the dark about what I can get the school to provide.

I don't mean "bad" - hard to know how to express it really Mildly AS if that makes wuld make better sense compared to some children I have seen.
I don't have any real experience with AS except I work as an accountant for a charity that provides After school clubs and playschemes for disabled chidlren and there are a lot of severly affected children there, so I know what DS has is mild compared to this

Hi Alison,

Will you apply for a statement regardless of what the school say?.

I would seriously consider it now; the longer you leave it the harder it will be to get him such a document. His current difficulties may magnify as he progresses through the years at school (also I have seen AS children without a statement at Juniors struggling to cope). Unlike other things like School Action and School Action plus a statement is legally binding.

I am beginning to think I should try.

Should I get the Ed Psyc reprot first as ammo?

I will try contacting IPSEA for advice.

Any other advice before I start gratefully welcomed