Help filling in DLA form - sure I saw a link on here but can't find it...

[pukkapine]

Finally biting the bullet and applying for DLA for DS... I'm sure a while back there was a thread on here where someone posted a really good guide, published by a charity, about filling in the form... I could do with it now, and I can't find it...

DS is diagnosed with Autism and Auditory Processing Disorder, also likely that he will receive further processing diagnoses in the next few months, if that makes any difference to what advice would be helpful :)

[Jasonandyawegunorts]

Was it this guide by CEREBRA?

w3.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/

[pukkapine]

yes, that's it - thank you so much! :)

[Jasonandyawegunorts]

you're welcome
Good Luck.

[hello573]

How did you get on with filling out the form? Took me weeks to recover after filling mine out... Didn't realise just how special he was until I finished it and cried for ages ....

Not same condition, hypermobility and probably dyspraxia...

[pukkapine]

Hello again - just seen this, hence the delay... yeah it kind of knocks you for six doesn't it? I didn't anticipate that. Throughout it I found myself going "yeah yeah, but he can also do mental arithmetic faster than a lightening bolt" or "yeah, but he can create amazing worlds in Minecraft" or "yeah but he can name every species of shark and tell you where they live, what they eat and how big they are"... for every negative thing I wrote I felt like I was being utterly disloyal to him, and seeing all the negatives in one hit like that was seriously not nice and I did have a bit of a "how do we cope with this?" moment. I cried too. I also had a big chat with DH about whether we really wanted to send something so negative off, was it worth it? but we've done it now. And now we await some minion's judgement on our lives, our son. :( But if he gets the DLA he can continue his weekly one-on-one with the most fantastic lady who helps him with his anxieties, and who, frankly, is my rock too. The council have said he's had his 'allotment' and she's been seeing him 'on the sly' when things get desperate, but really I'd like to be able to pay and for it to be regular once more as it made such a difference to him and us. So I've got everything crossed. Thanks for 'checking in'.

[RoaringFirePlease]

Hi Pukkapine, may I ask what sort of person your son sees and how it was initially arranged? My son sees someone like that through our local ASD outreach service (overseas), but we are moving back to the UK in a few weeks so need to try and organise something else. Many thanks.

PS When I had to recently write out my son's difficulties and what support he receives, I also wondered how we cope with so much sometimes and felt bad that I had listed out all his needs in what sounded a negative way. I just wanted to say 'But he's a lovely little boy despite eveything'!

[pukkapine]

Hi Roaring...

We struck gold with this lady... basically school referred us to 'Early Help' through our local council at our request as a way of getting some 'counselling' for DS for his anxieties, it was actually before he had a full formal diagnosis. Then I think we just got lucky. The support worker who was assigned to us happened to be their worker who specialises in ASD and runs their Early Bird & Cygnet courses for parents of ASD children. At that time we didn't know if DS was ASD, or what (turns out he's got ASD, and Auditory Processing Disorder, and possibly Sensory Processing Disorder). What was apparent was his anxieties were off the scale, so that was our focus at that point. Within a week of two of meeting DS she very tactfully asked us if we'd considered he might have ASD (later found out she was 100% sure from her first meeting of him). She then helped us enormously in terms of getting the actual diagnosis, in fact she came with us to the assessment, wrote letters to them to speed it along etc. She was amazing and my rock at that time as school weren't overly supportive, just thought he was quirky, but because he's bright and 'no trouble' they didn't see what we saw at all. Having someone impartial who saw what we did - including turning up one day when DS was in the middle of an ASD meltdown which no one at that school ever acknowledged happening. If she turned up and I was struggling with him or the others she'd sit and have a cuppa and basically get me believing in myself as a mum again, she was ace. We also had a malicious referral to Social Services in that time (school mum who decided I was making it up about DS despite not really knowing him) and our support worker was again amazing, there with us, shouting our praises. Fortunately DS had a very typical ASD reaction to meeting the SW and she saw the claim was malicious by calling school, but it was incredibly stressful and I was so glad we had her on side. However, after about 20 sessions with DS, which have helped with his anxieties enormously, her bosses have said 'enough' and pulled the plug. We are now 'coping' so therefore aren't eligible for help. She does some work privately and I'd love to keep her regular for DS by using that option. At the moment, bless her, if DS isn't coping she just squeezes him in off her own back for nothing - she really is fab - apparently DS really reminds her of her own now grown up DS so she's got quite a soft spot for him. So if we get DLA for DS that's what we'd use it for. Sorry long answer! But I guess your first port of call is seeing who runs the Early Bird Courses in your area and seeing if they are linked to anyone?

[RoaringFirePlease]

Hi Pukkapine

Thanks so much for your response. Sorry I have taken so long to read it. We are moving house and its all hectic. I hope you manage to get your DLA. Your lady sounds like a gem!