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Am I doing everything I can?

(30 Posts)
Buddy80 Sun 10-Jul-11 11:07:01

Hi all,

I would really appreciate some advice. Please be gentle :-)

Our son is currently undergoing paediatric assessment (we believe autism). He has just turned 3, non-verbal, stims, tantrums,etc. His behaviour was flagged by ourselves and GP so that’s what initially got the ball rolling.

In the last 4-months, we have had lots of assessments. 2 paediatric assessments, hearing tests, various SALT assessments.

Although we appreciate a formal diagnosis is a long-way off, I really would like advice if I can be doing anything else for my son:

So far, we have arranged:

Blood test for next week.

1 morning at a special needs nursery.

3 sessions from Sept at mainstream nursery (they have contacted a special needs co-ordinator but have not heard further. What should I expect in terms of getting him settled? He has extreme separation anxiety)

SALT assessments (but no speech therapy offered, just a signing course for me to learn how to sign to him (7 session) which we have to pay) Although there will be an in-house SALT as his special needs nursery.

Portage (arranged by myself, they will come to the house for 6-sessions over summer holidays)

As advised, applied for DLA

I have contacted council run helper groups and NAS

There is a team around the child meeting scheduled at the end of this month. Any tips? Was advised that they may open a CAF but no need for statement.

Thank you for any tips anyone can share, I just really don’t want to look back and wish that we had pushed for better

Starchart Sun 10-Jul-11 11:38:54

Research Applied Behavioural Analysis. (sometimes called EIBI)
At the end of each meeting/session write a summary of it's benefits or outcomes for your ds.

Keep a detailed log of all communication with professionals (they will be keeping a log of their version). Where something is not clear, promised or refused I.e. Statement not required. Write to the agency quoting the person who said it and ask that you have understood correctly.

Your LOG with dates, contacts, details and quotes will be the single most useful thing for your ds. You can ensure promises are kept, deadlines are kept to, misunderstandings do not occur and once professionals know you are keeping tabs they will be careful that you get accurate information.

Starchart Sun 10-Jul-11 11:41:14

Also put in you log links or support groups or books etc that you don't have time to research right now but will later

If you are certain your ds has autism get a private dx ASAP. In the current climate very few resources are available without a dx.

Starchart Sun 10-Jul-11 11:43:34

Where roughly in the country are you? Someone might know about thing local to you?

Also, why do you think you are a long way off dx?

zzzzz Sun 10-Jul-11 11:44:33

I always advise reading "Send in the Idiots", and "Emergence", which were both recommended by the Psych at our assessment, and I also like "Einstein Syndrome".

It sounds like you are very on the ball, though I think SALT at home at this stage would be helpful as they will train you on how to help, and since you are with him a lot, you can really do a lot more than the nursery. My son was very echolalic at this age and had colours letters and numbers but no names and few nouns [I can't actually remember any]. He is 6 now and we have come a long way, though we have no dx and I would say his problems are mainly language with some associated behavioural problems.

Things that helped him most at 3 were Music Therapy (he got to express himself for 30 mins a week where language was just not used at all grin), Swimming Lessons (he swam at the local leisure centre in a normal class and they just provided an extra helper! shock It was an enormous confidence booster and he loved itgrin ), Going on Holiday (I know it sounds weird but ds does a huge jump every time we go away, perhaps because we can just spend the time on him, perhaps because we are forced to change routines and all have to communicate more. Whatever the reason it is the single biggest jump starter....sadly we are broke so haven't been away for a while!).

Keep in mind that he is first and foremost a child and needs everything you would normally give a child, just sometimes modified. Expect to have nights when you cry about the future and expect things to get better. It's a crazy life but I love being ds's Mum.

Starchart Sun 10-Jul-11 11:44:46

Oh and welcome grin

Starchart Sun 10-Jul-11 11:47:43

You'll get loads of of here. The hanen books are a good place to start and enrole yourself on an official PECs course by Pyramid if you can possibly afford it.

Buddy80 Sun 10-Jul-11 12:07:44

Starchart! Thank you so much! Such lovely responses.

Our Paed told us that they have to rule everything else out and although it could be ASD it could be S&L delay. Although SALT have said otherwise and that it goes beyond S&L

Our Paed has also preseribed a months supply of melatonin due to his extreme sleep problems, but has said we need to try and get him into a routine (if only it were that easy!). I have said his sleep has always been terrible and we have done everythingwe can (inc consulting sleep specialists in the early days). Paed said never heard of sleep specialist. Melatonin working with mixed results, easier to get him to go to sleep, but he has been awake from 2am until now today, for example.

If I get a private DX is this taken into consideration by the NHS?

Thank you for the titles of the books will def have a look at those!

I totally agree that treating him "normally" is so key. He loves swimming, very recently tried music group but all he wanted to do was open the radiator cover, lol

We are in Wiltshire.

Buddy80 Sun 10-Jul-11 12:08:40

I have also thought of getting him assessed at BIBIC

Mitmoo Sun 10-Jul-11 12:17:43

So far as settling him into nursery goes I'd talk to the special needs co-ordinator, one of things that we have used for an older child but can't see why it wouldn't help your child too, was to take photos of the nursery, the nursery workers, they play areas, outside of the nursery etc.

You then use that to familiarise your child with the nursery, talk him through walking up to the door, he'll get to know the nursery workers faces from the pictures.

Then when you take him for his first visit, he will have already seen it and it will be more familiar too him.

Good luck

cansu Sun 10-Jul-11 13:03:20

You sound like you have done loads. Be kind to youself too; I remember well what an awful time it was for me! A little later on you may want to question the idea that he doesn't need a statement. I was told this - I definitely did need one and it helped me to get dd2 the 1:1 help she needed when she started reception. I would also second reading up on ABA or Early Intensive behavioural intervention (EIBI). I have two dc with ASD. My second child really benefitted from this approach.

Buddy80 Sun 10-Jul-11 13:30:30

Mitmoo: thank you, I do need to chase the SENCO. I have not heard and was just told one was being appointed and that was it.

Cansu: Aww, thank you. I am one of those who am terrible at taking care of myself, I know what you mean though. I will look into the statement. If I get refused one at the team around the child meeting is it worth applying to the LEA?

Starchart Sun 10-Jul-11 15:55:12

Buddy,

Yes the LA's have to pay attention to a private diagnosis. The best 'trick' is to keep on the NHS waiting list and get both. You can tell the NHS that your private dx was your second opinion so you still want your first. It also helps if you get your dx from a predominantly NHS Paediatrician who happens to have an additional private clinic as their judgement is less able to be challendged

Some LA's pretend they don't pay attention to private dx, but it has to be recognised for the statement.

My ds had less difficulties than your ds and we got a statement on first application from a LA notorious for refusing. We were, however, encouraged not to apply and no-one would do it for us. We had to do it ourselves.

For optimal timeframe, aim to apply for a statutory assessment a couple of weeks before you have your dx appointment so that your report/document can be included in the six week timeframe. If you are refused or something happens, you are allowed to apply again the day after in light of new evidence so you have nothing to lose.

And I'd just like to say, that this part is the most horrendous. Things do get a lot better and a lot more hopeful than you're probably feeling right now.

I SO did not want to be one of these lot on here, but here I am, and they're lovely and I could not have adjusted as quickly if it wasn't for them.

Buddy80 Sun 10-Jul-11 16:37:13

Hi Starchart

Thank you for that great post. I thought he would be too young to need a statement and as he is not diagnosed?

Also, I was told that he should have a CAF (sp?) instead.

I know that I can apply myself to the LA for the statement, but not knowing what to request in terms of his needs is tricky.

Starchart Sun 10-Jul-11 16:56:13

It helps to have a dx, but having complex needs should be enough and anything ASDy is complex needs usually. I would personally, get a dx asap and get a SA request in.

I would download the SEN Code of Practice or ask for a copy to be sent to you. And also write to your Local Authority and ask for any criteria/policy that they use for agreeing a Statutory Assessment.

The whole process takes a minimum of 6 months so really the sooner the better that you apply. If it is considered that he might need a statement in the future then that is good enough reason to carry out a Statutory Assessment now.

In many ways it is easier to do it early because there is less evidence against you. I'm not trying to imply there is a conspiracy but teachers often get little training in SEN let alone ASD and it isn't helpful when they deny things that you say are problems for your child.

I'm a bit shocked at the SALT provision offered to you if I'm honest. In any case PECS is often better than signing (not always, it depends on the child) but you can direct the learning better with signs and pull out speech more easily. If you have to pay anyway, pay Pyramid and do a PECS course. You'll come away with hope and high expectations for your child.

To apply to the LA yourself you are asking for a Statutory Assessment, not a statement. The purpose of this is to find out what he needs. If you have to justify it to anyone, justify it by saying that the SALT people are making you pay but wouldn't if it was in a statement. Use the LA criteria, as well as the SEN Code of Practice criteria to make your application. Don't beat around the bush about it, copy and paste whole sentences if they apply. It also lets them know that you know about these documents.

Starchart Sun 10-Jul-11 17:01:29

And the CAF?

Well, the idea behind them is fantastic and they can be useful in some instances but I bet if you started a thread asking if they were helpful/useful on here, a lot of people would say no. Some might even say that they were an opportunity for the professionals to gang up on them a bit and back each other up.

Where they CAN be useful is that a variety of professionals are involved and you can get a feel for who might be helpful to you. You can also nominate someone who doesn't turn up for the highest workload/admin and that makes damn sure they come next time.

Be careful what you sign at them though. They might want you to sign something that agrees to them all sharing information with each other. Whilst that sounds great in principle, you could add a caveat that you would rather that all information sharing came via you, rather than behind your back.

Hope that helps.

Buddy80 Sun 10-Jul-11 17:07:37

wow - this is fantastic! Thank you so much. There is a lot I need to go away and do. You have been such a big help to me and my son - thank you.

Starchart Sun 10-Jul-11 17:13:05

I just bring together what I learned from other people on here. I couldn't have done what I have done myself without the huge support and hand holding I had on this board.

The same rules apply at the TAC meeting as the CAF wrt to signing things btw.

You asked in your OP for us to be gentle. We ARE gentle, but we're also a bit blunt and straight and probably also a little bitter. Things don't just come to children with Special Needs. You may as well know this at the beginning.

signandsmile Sun 10-Jul-11 19:04:18

hiya, you've been getting good ideas from everyone... (my ds is one of the kids who signing has worked for by the way. up till 4 had 7 spoken words, but 150+ signs, so could communicate, but speech is now coming really well, as well, if you see what I mean wink)

If you are in wilts are you any where near swindon, do you know music alive?
based at Bentham House near purton (nr swindon.) they have been amazing for my ds, he has music sessions on his own. (They are only £9 for an hour session and debbie there is fantastic, has both musical knowledge and bags of experience especially with ASD. ) she plans sessions for invidividual needs and takes into account both sensory issues and any skills or issues you are working on...

Mitmoo Sun 10-Jul-11 19:06:41

Isnt this just the best site? I only found it today though I had heard about it. Watching the news and a reporter creditted Mum's net with getting NOTW closed down. Then I thought I must go and see this site. I am so glad I did. It's brill. Great support, great people, fabulous.

zzzzz Sun 10-Jul-11 19:12:47

We had an assessment at BIBIC and on balance I don't think it was very useful [bearing in mind that it cost several hundred pounds when we did it]. The NHS process was more comprehensive and more helpful [we saw Clinical Psychologist, speech therapist, sen nursery, music therapist over 2 days very tiring. Then after they had reviewed saw consultant pead for conclusions].

I think Wiltshire has a private asd school (as far as I remember 2 to 16), not sure as heard about it some time ago, I will see if I can find details.
Are you planning state or private school? Because if possible I would want my child in a nursery attached to the school so transition is easier. Though I know a family who went with a Montessori Nursery and had a positive feeling about it.

I find this board very helpful, but not always gentle! Feelings run a little high sometimes and we are of course all over tired and over stretched. It is useful to have people to tell you they have been there. Who get how hard it is. Who have genuine pit face experience and tips. It is also great that you don't have to take the advice, so you can really pick and choose in a way you can't with friends etc. Also there are some really clever Mums on here some professional and some not. It works!

Starchart Sun 10-Jul-11 19:21:45

I agree with zzzz about BIBIC.

It can be helpful but you won't get much that will get you leverage with professionals or support. The assessment is done by lovely caring people and you get a pretty comprehensive list of your ds' strengths and weaknesses with some ideas of things you can do to help, but you won't be able to convince school or LA to do them.

ICAN might be worth looking into though, although I have never been myself.

Or simply an independent Educational Psychologist assessment. These are what I spend most of ds' DLA on as I want to get a regular feel for where he is in relation to his peers and the direction he is going.

Starchart Sun 10-Jul-11 19:22:42

Brilliant about the speech sign grin

TotalChaos Sun 10-Jul-11 20:07:35

Ask if SALT department run Hanen courses or (?sp) Elklan courses - they are free and are geared at helping you help your child to talk. There is a Hanen ASd specific one called More than Words.

Re:Bibic - haven't used them myself as wrong end of country but I know plenty who have - they don't diagnose, and from what I can gather the people who work there are v knowledgable but aren't medically qualified so recommendations don't always get taken seriously by LEA etc.

absolutely agree with Star about logging and keeping on top of everything the professionals promise. and if you are referred to any service, call after a fortnight to check they have received referral letter if they don't contact you.

JoMaman Mon 11-Jul-11 11:35:15

hi buddy, I just wanted to say welcome and echo what everyone has said, particularly about ABA. Ds1 is 3.5 and got dx a year ago. I'm still learning a lot but MN is definitely the best place to find info.

The only suggestion I wanted to add (sorry if i'm repeating what has already been put) was have you thought/read about sensory integration? You mentioned stims and for my ds we reduced them by trying to address his sensory deficits. My ds used to always tap radiators, metal bars etc and it distracted him from learning. Bibic wrote us a sensory diet but I now realise you can devise your own or see an Occupational therapist specialising in sensory integration. We do things like roll him up in a blanket and squeeze him for example. I'm not explaning it very well but 'the out of sync child' is a book that is often recommended on here about it.

things do get easier, and you don't need to wait to apply for SA, we applied after dx, were refused, appealed and they backed down just before tribunal. Now he's being assessed despite not having been to nursery yet, we are doing ABA at home and he starts part time mainstream nursery in Sept.

Sorry for the ramble, hth

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