DLA without a diagnosis for my Son will it help...

teddysmum

kingfisherblue wrote: »

Incidentally, the music idea is a result of a voluntary placement in a school when I did my degree. Every class played Supercalafragilisticexpyallydocious (excuse the spelling!) when it was tidy up time. Everything had to be put away before the end of the song.

The idea has reminded me of when I was a 5 year-old, back in the days when children lived in walking distance of school and went home for lunch.



My tune was the 'Listen with Mother' radio programme's signature tune and I knew that if I didn't leave home by the end of the piece, I would be late.


It was so much more effective than being nagged to hurry up.

iammumtoone

Bit of an update and more helped needed (sorry to post this here but people have been very kind and it can be brutal on the family board! - don't think I could take it at present)

As said I had been to the doctors about the issues and they asked me to get some more information I supplied some which I had but am waiting for a letter I requested from the school to send in as well. As far as I am aware/been told this is on hold until I speak to the doctors again and get all the information I can.

After the above appointment, I had reason to take my son to the doctors again (problems with foot twitching) they put this down to iron deficiency and prescribed iron liquid. I had to return as due to this issue he wasn't sleeping until past 3 or 4 in the morning, as explained to the doctor he is never asleep before 12 when he is well so the knock on effect of him being ill meant he was only getting 3 or 4 hours a night, as I had to wake him so i could get to work (hence the reason for the original thread) That doctor said she would make an urgent referral to a pediatrician

I forgot to ask the doctor what the referral was for so phoned the next day and was told it was for rheumatism. I assumed they are investigating the foot twitching beyond iron deficiency, just in case it isn't that.

Therefore as far as I was aware the doctors are awaiting for info from me for appointment 1 and have referred for rheumatism from appointment 2 (unrelated to appointment 1)

Tonight a get home and a letter is from CAMHS??? taking about a referral and saying they have passed it to the Community Pediatric team. Aren't CAMHS to do with mental health? now if they feel my son needs this support fine but shouldn't they have at least told me about it and told me why they think this is the case (sleep issues maybe?) it was a complete shock and a bit upsetting as I have not idea why this is can anyone shred some light why this has happened is it normal for a referral for rheumatism? It could be related to appointment 1 but they said they wouldn't do anything until I had 'evidence' from the school.

The Community Pediatric team are an hours drive away, where there is a hospital 10 minutes down the road. Will I have to travel to the city? this will mean a days holiday at short notice from work I am already only just hanging onto my job as it is. Same question really if I was ill I would be entitled to take time off for medical appointments but I suspect people are going to tell me I don't have this right for dependents.

Poppie68

Are you sure he hasn't been referred for Autism ' and you either misheard or the person giving you you the information mis-read.It seems very unlikely from anything you say that the doctor would suspect rheumatism.

iammumtoone

Poppie68 wrote: »

Are you sure he hasn't been referred for Autism ' and you either misheard or the person giving you you the information mis-read.It seems very unlikely from anything you say that the doctor would suspect rheumatism.

I can't be 100% sure I will be ringing them again tomorrow to ask about it. I may have miss heard but autism doesn't sound anything like rheumatism! I assume rheumatism to do with his foot as it was the doctor that we saw the foot about that mentioned the referral. The doctor we saw about the other issues didn't mention any referral just asked for more information/records.

If he has been referred for autism would that automatically mean a referral to CAMHS? It is the referral to CAMHS that I am most confused about. I want him to get the right help he needs but also want to understand why the referral was made.

Poppie68

Sorry meant to say, you don't have an automatic right to take time off for dependants but some employers are more sympathetic than others, most would allow the odd day here and there but expect arrangements for childcare to be made. In this instance it would only be one day for the appointment so it's worth forwarning them, you may find it helpful to sit down with your line manager and have a chat about your sons problem but make sure they understand you are doing everything possible to get it sorted so it will have less impact on your job.

iammumtoone

Poppie68 wrote: »

Sorry meant to say, you don't have an automatic right to take time off for dependants but some employers are more sympathetic than others, most would allow the odd day here and there but expect arrangements for childcare to be made. In this instance it would only be one day for the appointment so it's worth forwarning them, you may find it helpful to sit down with your line manager and have a chat about your sons problem but make sure they understand you are doing everything possible to get it sorted so it will have less impact on your job.

Thanks I will do that, at least I now have a letter to show them so they can see I am seeking help. I think they would be more sympathetic if I hadn't caused them other issues, I seem to be a problem employee for them at the moment

[Deleted User]

This reminds me of the time before I had a diagnosis for my older son. I lost so many jobs, quickly used up holiday and sick time and was always tired because my son barely slept.

He was initially diagnosed with dyspraxia, then with ASD (Aspergers). I couldn't possibly say your son has a condition like this, but it might be worth looking at a few sites (like the National Autistic Society's site) to see if anything described is similiar.

We can't comment on the CAHMs appointment until you know what its for. As you say, I doubt its for rheumatism. Autism does end the same.., but usually it takes some time to be assessed. I had to really fight to get an assessment for my younger son, and then waited for two years (GP was a bit resistant in spite of his older brother having it).

I'm afraid you are probably not in an easy situation.., I was always blamed for my son not sleeping (like you, tried routines etc to help, nothing worked at all). Of course, it doesn't help if no one else see's what I call 'the meltdowns'. I realised that it was only with me he felt secure enough to show the stress but it did make me look like I was making it up to professionals lol. However, when I moved and changed his school and got him into a much more sympathetic school, his sleep problems disappeared. They do reappear when he gets stressed though.

I have a younger son who's also been diagnosed as having ASD. At least this time I can say quite firmly its not me causing the sleeping problems lol. It does help. It's quite hard being uncertain on solutions when you are in these situations, and so very tired. I don't think the professionals realise how hard and how it affects your thinking.

I don't know if it helps, and I explain to my son why, but I take something he really likes away if he gets into a habit of not sleeping. He loves his pc, and the internet so threatening to take that away (and doing it if it does continue) really does help stop the not sleeping. Does massage help with the foot problem? I've used that quite a lot with a nice smelling cream that my son loves (lavendar is a good one that supposed to help sleep too). I think it helps him emotionally too.., he relaxes and feels more secure and loved. There's a lot he doesn't get about the world, anything that helps him feel more secure is good.

Both my sons have ASD.., but oh dear, their intelligence and sense of humour is amazing too. They are such wonderful boys. We've been through hell and back at times, with no easy map to follow but we've all come through the rough times better off.

To answer your original question, I'd advise waiting until you know what this CAHMs appointment is for. If it is for some kind of assessment, having that will help, although as you say, its not necessary. If you do apply for DLA.., get some help. Without help it took me 9 months and an appeal to get it, for my younger son it took 2 weeks (had help) - the CAB can help.

Sending hugs.