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I'm a bit scared - can you say no to help???

(13 Posts)
beanpip Fri 02-Oct-09 17:26:19

Hi smile

I am thinking of having my DS(5) assessed but I am worried that if we get into this it will snowball out of control and we won't be able to stop it or say no to help if we feel DS won't benefit from it. This is just from previous experience when we lived in Australia for a year and at one stage DS was going to 4 appointments a week - physio, physio swimming, walking therapy and speech therapy - PLUS regular paed appts. They never did diagnose him with anything except a hole in the heart, low muscle tone and global development delays. However he was not formally assessed.

Since we came back to Scotland we avoided assessment because DS hated all these appts so much and he started to take off all of a sudden. However, I'm now thinking of applying for DLA as he has Encopresis and it's made me start to wonder if he should be assessed now. Even though he's doing great it's obvious he still has some issues.

Sorry I'm waffling! My question is basically - if they offer me appointments and a social worker and whatever else - can I say no? I'm not always keen on this interference (although obviously if I felt it would be beneficial for DS of course I would do it). Can we decide as a family how much, if any, help we want?

Thank you for reading and I look forward to hearing from you smile

linglette Fri 02-Oct-09 17:37:19

Hi beanpip,

I think you should ask the question directly of your paediatrician - it's a very fair one.

They should understand that a cascade of interventions can be damaging at home.

Marne Fri 02-Oct-09 17:53:10

You should be able to claim DLA without a diagnosis, you might be able to get away with a letter from your GP as proof of you ds's needs.

MoonlightMcKenzie Fri 02-Oct-09 17:58:30

You think too highly of the UK system. You don't get anything offered. You fight and fight to get basic provision. You attend for as long as it takes for you to realise that it was ineffective.

But I'm a miserable cow at the moment, so it is probably better to just pat me on the back and continue on the path you were.

PeachyTentativelyPosting Fri 02-Oct-09 18:00:51

I wouldn't worry about teh SW beanpip, those of us with dx's arefar from beathing them off with a stick- we have 2 dx'sin this house and nada a SW to be seen.

What difference would it make to you? If school is sorted and DLA can be gained without a dx (we got ours for ds3 pre-DX) then- what?

If the answer is not much there you go but what if something changes- if you became ill and needed respite, or when he is older you needd some kind of care for himn- would it be easier t get all the dx decisions made now, then sit on the file until it'sneeded, rather than be faced with it all at possibly quite a ahrd time?

cyberseraphim Fri 02-Oct-09 18:04:24

I think it will depend if he will need help in school. He would need to be assessed for those purposes. But otherwise, the services in Scotland are far below what you got in Australia (When's the next flight ?) so I would not worry about overload. You can say no to any thing you do not think is needed.

beanpip Fri 02-Oct-09 18:58:59

Thank you so much everyone you've put my mind at ease a lot! Gosh I had no idea you get DLA without a dx - I would have claimed years ago! (Don't suppose you can get back-payment lol)

Yeah - Australia (Sydney) is pretty amazing for early intervention it was quite overwhelming! I highly recommend it if that's what you're after.

DS is home educated - he would absolutely hate school as he gets very anxious in group settings.

I will start with my GP and see how I go.

I'm sure I'll be back here - you guys are awesome smile

Thank you!

PheasantPlucker Fri 02-Oct-09 18:59:09

MoonlightMackenzie - oh how you speak the truth! I spent a couple of hours today trying to track down our elusive SW (Is she just a figment of my imagination?!) to sort out the respite that 'disappeared'.

sickofsocalledexperts Fri 02-Oct-09 19:40:32

Hi, my DS is autistic, partially home educated but also has a hole in his heart, you're the first person I've "met" whose kid has a similar dual diagnosis (though I know you said GDD not ASD). I asked at the heart hospital if there was any link at all between the hole in the heart and the autism and they said no, and I think they'd rarely come across kids with both. The thing is I think he got the hole in the heart from me, as I found out it's inherited! And he got the autism too, poss from his Dad's side! How is your son's hole in heart going, does he need treatment?

beanpip Sat 03-Oct-09 16:03:10

Hi sickof... his VSD was actually diagnosed in utero as he had an ectopic heartbeat (a terrifying thing to hear when you're 6 months pregnant!) and they did scans before he was even born. Then he was off to the childrens hospital every 6 months, then every year, now its down to 2 years. They're happy with how its going - it doesn't seem to be getting bigger or causing him trouble. He's never had any treatment for it.

It's funny - I had wondered myself if there was a link. He also had a terrible time feeding as a baby and had to go on Infatrini - everyone was quick to dismiss my concerns but I wasn't so sure.

How is your DS's heart?

sarah293 Sat 03-Oct-09 16:23:42

Message withdrawn

sickofsocalledexperts Sat 03-Oct-09 17:20:30

My boy's VSD sounds similar, seen every 6 months as first as it "wasn't minor", but now every 2 years as it is not getting bigger and no treatment needed. He has had no other physical problems, there's just the autism and I think also ADHD. I have scoured the internet and found absolutely no link between VSD and autism so I think it's just luck of the draw that my DS got both. But he also got the most beautiful little face and the happiest nature (well, not today, as he's grizzly with a cold, but normally).

Piffle Sat 03-Oct-09 17:24:23

beanpip have you seen a geneticist?
My DD had such similar issues and was diagnosed with Noonan syndrome
The help we got as she was younger was AMAZING thru the NHS.
Not so great now we need the LEA (she is 7 and doing superwell despite having a 2 yr delay aged 3)
I'm not here much but will try and check back soon xxx

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