caf form and weekly visits

[bananananacoconuts]

have posted before regarding my gut feeling that ds has adhd/asd and have had some fantastic advice and support, just wanted to check that the latest development for us is going in the right direction.

Background, kept a diary of ds for over a month, went to gp and was totally dismissed, he didn't even look at the diary, wouldn't listen to my notes and just told me to contact school nurse as he couldn't do anything. Some great person on here told me to photocopy notes and diary and send them in to gp with a letter to explain what i wanted to happen as there is no other gp in my surgery. I have since had a letter back to say sorry i felt the gp hadn't listened but i was given the correct advice and the school nurse is the channel to go down.

so went to school nurse and filled in the caf. she did listen but said i think thats enough to be going on with when she had filled her boxes even though i hadn't finished! she said we'd have another meeting with profs and see where we go from there. left feeling like it was more about helping me as a parent rather than getting help for ds.

next development had a call from someone yesterday to say we would arrange a meeting for next week and that there will be someone coming round to our house once a week for 12 weeks to give us strategies to help him and me! i did say the reason that i started this whole thing off was because i'm concerened about ds having adhd/asd and felt this seemed to be more about behaviour than assesment and her reply was that this is the road we go down and that the lady who does the 12 weekly visits will then decide whether to or not to put him on some kind of pathway! think it was called behavioural pathway.

i'm all up for getting help, but i feel like their advice will not help my ds. i've already been told to ignore him when he has a tantrum which i've found makes it worse. so with his anxiety already through the roof i feel it's only going to get worse! feel like we're having supernanny round and it will be unassssseptical not to listen to jojo!

please tell me this is a way forward, not back

thanks all

Dx does seem to be a postcode lottery and what happens depends on the area you live. I do know other parents who have had to go down this path as a way of dx- frustrating I know as you feel they are more concerned about your parenting than helping you along the path of dx. You could go along with it and do the 12 weeks and then at the end of it they refer you - it seems a case that you have to get a tick in this box before you can move onto the next stage

How very frustrating. It must feel like they are trying to blame you for your DS's possible ASD/ADHD! I do know that it takes 'different' parenting skills to parent a DC with ASD (IME) so some of this 12 week waste of time course may be useful. Hopefully the behaviour specialist will see what you are seeing and be able to support your battle. Very useful to have an independent prof backing 'neurotic' mummy up.

It seems a very proscribed pathway you have to follow. I'm very glad that wasn't the route I had to negotiate, but at least things are moving. I was just fobbed off for months before anything was done, but once my HV had assessed my DS2 at 3, things did move to seeing a Paed quite quickly.

How old is your DS? What are school saying? Do they see any problems? Might be useful to have some other profs on side.

Hi banana, I think you might have to do it their way to show that they need to take you seriously. My guess is that once they see that you are a consistant parent and once the they have seen your Ds in his home environment a few times they will be more willing to move things forward for you.

Keep going with the diary and make sure you include any strategies you are using and how you deal with issues/difficulties that you think are outside the normal range.

Tbh, I would have welcomed that kind of intervention when I first tried to get Dd3 assessed. She was as mad as a box of frogs at home but whenever I took her to proffs she just sat on the chair like a statue it made it very difficult to get people to take me seriously.

Good luck

thanks for your replies. ds is 6 and in yr2 (august birthday). i am fully willing to go down this route as it doesn't seem like i have a choice but i just worry that it is all about his behaviour and my coping with that and their advice and strategies may not be valid for whatever ds will or wont be diagnosed with further down the line.

another problem is he doesn't like other people to know about his anxieties, so generally saves them for me. i feel that whoever comes round will still not see the real him iyswim! he does have a problem with his behaviour at school but is responding quite well to a behaviour chart. he loves the structure of knowing what happens at each and every time of day, so could have done with someone seeing him over half term when we can't map everything out!

i'd like to tell him that he can behave however he likes when this person arrives! just to see if he'll show his true colours but i'm sure he wont...tempting but i know it will do me no favours in the long run!

Read the book 123 Magic and basically learn the key points off by heart. It's what the best standard parenting courses are based on. Of course it doesn't help at all for ASD & sensory issues especially so let the patronising carrot see for themselves when they visit that:

a/ You already know what "gold standard" parenting looks like as well as your home visiting "expert" and how to implement it.
b/That it doesn't flipping work!

c/That you have a nice typed list of ASD/ADHD specific parenting questions to ask ready that you expect them to be able answer -

Some examples you could use might be

1/ Despite the fact I know my child's eyesight is 20/20 why does he/she never make eye contact
2/ How can I distract my child from his/her obsession with X
3/ How do I help my child accept change?
4/ Can you help me write a social story to prepare for Granny's visit next Tuesday.

Now I'm on a roll - here's my suggestion for week 2.

1/ Get your child's eyesight & hearing tested (this is something the school nurse CAN do!)
2/ Demand a formal peadiatricians referral to rule out any physical causes for the behaviors you are struggling with.
3/Floating around somewhere is a GP's checklist for ASD referrals find it, fill it in and demand that it is given to the pead.
4/ Ask that home/school or nursery do a formal Connors questionaire (ADHD assessment)- results to be shared with you in week 3's visit.

See where I'm going with all this? If they insist upon intruding into your homelife make it clear that you expect clear and definitive outcomes that directly benefit your child and that some actual work is involved for the person intruding. After a week or two, it'll be easier to give you the proper consultant led referral you need than to continue attempting to patronise you and wasting your time .

Sadly it's cheaper to blame Mum than it is to implement effective support for children with neurological disorders. You may want to consider changing GP's practice, I was shocked at how easy this is to do.

That's very good advice Bochead.
I agree. If people encroach on your life then it is only fair to expect clear measurable outcomes. Otherwise, what is the point-for anyone?

I agree with Bochead though I'm sorry that her strategies are a bit scary to implement.

But, yout get tough now, or you get tough later. One way or another her strategies will eventually seem like common sense and implementing them will become a normal way of life to some extent.

I would agree to this 12 week thing BUT, I would also write to the GP and ask them to explain what the various pathways are to a dx of ASD or ADHD, besides but including the school nurse route.

I would also ask who the 'someone' is that is coming round and what her profession is, and what her experience is of ADHD and ASD and other developmental disorders.

I had someone come round to play with ds for 12 weeks, but we had a dx by then. She was playworker with no qualifications in anything at all. Sensible enough not to offer me strategies though but ds liked it and it kept him engaged at a time when he might not have been so I allowed it. She was nice. It didn't have any effect on his dx and didn;t slow the process down, which is the key thing.

thank you all so much for all you advice. bochead could you please pretend to be me for 12 weeks.

i can only hope to one day be as knowledgable as you all!

The good news is you don't have to be. This board has a lot of expertise, and if you use it for a bit, you'll find yourself answering the questions of others soon enough.

Bochead that is some awesome advice!

I can not add anything more than I hope it goes well banana

Let us know how the sessions go!

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