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Will we be thought of as bad parents for turning down nhs 'help'?

(17 Posts)
Laurajay84 Mon 05-Sep-16 20:27:46

My DS was diagnosed with autism in May. Recently we have been offered various appointments to discuss our feelings, 4-week SALT course and a couple of other autism courses.

At the moment our life is hectic. DS is about to start nursery for five mornings a week and I do ABA in the afternoons. The appointments offered are all during nursery time, one is on his second day at nursery and I just don't know what to do.

It's not like we are doing nothing - we have been doing ABA for a few months now and we really try and do as much as possible to improve his skills in all areas. I'm just worried that if we turn down these appointments and courses then it will be recorded and we will look like bad parents who don't want to help their child. confused

What do you think?

Melawati Mon 05-Sep-16 22:12:59

I don't think you will necessarily be marked down as 'bad parents' but you may find it harder to access NHS services later on if you need them, as you'll be starting from scratch.
Could you call the clinic to try to rearrange some of the appointments? Delay the SALT course until the next one is running? I'm a belt and braces kind of person so I'd be looking for a way to make it work to keep my DC on their radar.

LonnyVonnyWilsonFrickett Mon 05-Sep-16 22:19:08

I take everything we're offered, even though I could have written the content for the last course the LA offered me. I don't think that's through fear of being a 'bad parent' it's more because I've had to fight so hard for the real support that I feel I can't cherry pick.

PolterGoose Tue 06-Sep-16 09:19:39

Message withdrawn at poster's request.

gigglingHyena Tue 06-Sep-16 09:26:16

On the one hand it's great to hear that support is being offered after diagnosis, around here it's pretty minimal Anything I've been offered Iv;e tried to take up, even if it doesn't seem that relevant it's usually nice to get together with other parents who "get it".

I'd defiantly second the suggestion to ask when the course is likely to run next, and ask to do that one instead. I've done that with a few things which were either not going to be convenient to get too, or in one case DS was at the upper end of the suggested age and I thought it would be better to wait a couple of months and doe the course aimed at parents with slightly older children.

Ineedmorepatience Tue 06-Sep-16 09:45:16

I was going to say can you postpone any of the appointments? People do usually understand if you explain.

If you cant then I would do them, staggering his start at nursery will do him less harm than missing out on important support!

Also in the case of the SALT course it will give the therapists an opportunity to really get to know him!

Good luck whatever you decide.

AntiquityAgain Tue 06-Sep-16 10:58:07

I didn't do autism courses as I felt I could educate myself better online which I did.

I let him be discharged twice from SALT due to them being useless for him (nursery agreed the inappropriateness of their help the second time).

Portage were awesome.

I've never considered whether they thought I'd be a good parent or not! I think services are there for us to use as we see fit.

PeachyTheSanctiMoanyArse Tue 06-Sep-16 11:15:48

We have three with autism: I also have a post grad in autism, and a diagnosis myself (very recent, obv very HF).

I have no choice but to turn down help, there's literally only so much we can do with three kids (and an NT one who needs parenting too). Also, and apologies if it sounds bad but quite often I am far more qualified than the person taking the course etc, and whilst it's often great to discuss things with someone else, there's a limit as to how often and how much stress to donate to that cause.

I do however try and keep in a bit with services: something I learned the importance of when completing DS1's PIP claim and needing evidence and names. Also, they do judge if you refuse all services, my background was the charity family support sector, I know they do.

Moderation in all things is my advice: take a few things offered but don't cause yourself too much stress, and stick at what's working.

Earlybird was the best thing we did, but even, then only once.

Shesinfashion Tue 06-Sep-16 19:20:11

What are all the clinic appointments for? We haven't seen a paed or been offered any follow-up care since DD2 was diagnosed with asd aged 5. She recently turned 8.

Tortoisecharlie Tue 06-Sep-16 21:45:03

I'd really try to make some of these, the SALT and a couple of sessions of the courses if I were you. But do try and change the times. I wouldn't have thought missing the second day of nursery would be too bad in the long run.

I'm in a similar situation. My child, 4, is only just being formally assessed. But I'm really busy with a kind of 'ABA/SALT/OT' set up I've tailored, part time work from home etc. It's working well and I've practically taught myself so much in the last year that I have ASD coming out of my ears.

I paid for OT, and SLT last year, but even then I was shocked at how much more I knew than they did. I hope that's not arrogant, as it made me feel really worried. How on earth did I knew I more when they were fully qualified? It was all generic one size fits all advice so I didn't pay for anymore and just got on with it myself.

And yet I did get to learn a little each time. Either confirming, after trying what SLT had said, that I was doing something a bit more tuned in, or by asking good questions, getting a little more insight or the odd practical tool that was useful.

Now I'm about to get, eventually, a little NHS treatment. And despite everything, I still think it's good to keep trying to ask any experts for advice, to get their perspectives. Even if it's not very effective, we have to try. And also, no matter how 'good' we are, if we are doing ABA ourselves as parents or such like, I do think it is healthy to check in with other professionals as otherwise we may be missing stuff, or being too intense. Too easy to go into our own isolated silo's.

Oblomov16 Wed 07-Sep-16 16:07:02

I got very little out of any of the courses I have done. Not even Early Bird. They didn't teach me anything I didn't already know.
But if you don't go, they will probably mark you down as 'non-compliant'.

coffeemaker5 Wed 07-Sep-16 17:50:01

I would take if offered if it is feasable to attend. Its part of this shitty NHS games. In my area, it tends to be held against one if you don't take up the offer. Having said that, we were only offered a parenting course and a tiny bit if Salt stuff.

Laurajay84 Wed 07-Sep-16 20:53:29

Thanks everyone. I was keen on attending a couple of things, it was just the fact that everything seemed to come at once.

We will be attending the SALT course from week 2 onwards. It's not that I had a problem with taking DS out of nursery on his second day, it's just that his twin brother might be upset and wonder why he is being left there on his own. Don't want to start nursery off on a bad experience for either of them.

There is another earlybird type course that we would like to go on but have missed the deadline for accepting the place. I will phone and see if we can be placed on the next one.

I'm not sure whether the courses themselves will offer us anything we don't know but they may be helpful. Ever since we found out about autism we have done so much research, etc that we practically have a PHD in it grin.

MeirAya Wed 07-Sep-16 23:48:59

As above- post phone stuff rather than cancelling it. Unless it's obvious overload and duplication-

in which case ask a professional to advise you which of the two things is more important and then cancel in writing - maybe even quoting the advice. wink

enterthedragon Thu 08-Sep-16 10:27:40

Our ds was diagnosed through CAMHS, they continued to see us after the dx, to teach us some strategies for 3or 4 months, SaLT, OT and physio was done through school, we weren't offered anything else even with extreme challenging behaviour.

enterthedragon Thu 08-Sep-16 10:35:22

Posted too soon, I was going to say accept what you think may be useful, decline or postpone the rest, it might not be relevant now but may be in the future.

We had a second round of camhs when ds got to yr5 at school.

Melawati Fri 09-Sep-16 09:10:54

It's unlikely that the people scheduling the various courses and appointments will realise that they've all come up close together. At least that's true in our area.
On the last course I went on the professionals were quite open about it being a learning experience on all sides. if they don't hear from parents about what's working/not working they can't change what they do.
For this course in particular, how the new Cop was playing out with schools and the LA, and experiences applying for and getting EHCPs - because a lot of the advice they had was out of date and applied to the old system.

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