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What can I do now?

(16 Posts)
nerdinator Sun 22-Jan-17 20:15:20

My son has some problems. We have been aware for the last 2 years that something wasn't quite right with him. So that this post doesn't turn into an essay, he has red flags for autism, he has symptoms of ADHD and nursery think he may have dyspraxia. He also has some major sleeping, eating and sensory issues. All these started displaying just after he turned 1 but we brushed it off as we thought maybe he was a little spirited.
He is now 4 and far from easy. I don't manage very well alone with him and I also have a 7-year-old daughter too.
I have been to the GP around 3-4 times now in the past 2 years and asked for a referral to see a paediatrician. Every time we see the GP, we are turned down and sent back to the health visitor who refers us to sure start or to do a course or something else. Last year we were sent on a course that the health visitor recommended through SureStart called 123 magic. We attended all meetings and then the lady who was doing the course with us just stopped turning up. We didn't know her name, her number or which SureStart she worked at.
Basically, I cannot get a referral until I have done this course, which I have already done but I am expected to do all over again. The next course date is in February but it's at a totally different centre as before with no public transport too. The course runs till the time I need to pick my daughter up from school and Is 2 towns over (we don't own a car)
It's just all very inconvenient for us and it may sound like I just can't be bothered but I have been trying to get a referral for 2 years now and I am being fobbed off.
I have spoken to other parents who just see the GP and then they are referred but it doesn't work like that in my area.
We have already done speech and language at age 2, 2 courses, one of which we need to do again because we never completed it due to the lady not turning up. The lady won't give me any evidence I did the course to allow me a referral because I didn't fully complete it.
Is there any other way to get a paediatrician referral? I can't self-refer in this area either.
I am getting very frustrated with the lack of help I am getting. Nursery knows he has some problems and we discussed this at the latest parents evening but they haven't really mentioned helping in anyway.
What can I do now?

zzzzz Sun 22-Jan-17 20:18:37

Ask nursery to write down any concerns they have and go to the GP with the letter.

nerdinator Sun 22-Jan-17 20:21:44

Thanks but I have actually already done this. They still will not refer me. The Health visitor sent me a letter for myself and the nursery staff to fill out in October. She said this was the final thing I needed to do and I can have a referral. The Doctor will not accept it without completing and having evidence for a million and one different courses and classes.

zzzzz Sun 22-Jan-17 20:27:47

How odd. What part of the country are you in?

nerdinator Sun 22-Jan-17 20:30:25

I am in the east midlands. I have been backwards and forwards with the HV and the GP and none of them are of any help. 3 nurseries my son has attended and everyone has said there's something going on. We've had speech therapy, courses and even a family support worker.

PolterGoose Sun 22-Jan-17 20:35:02

Message withdrawn at poster's request.

nerdinator Sun 22-Jan-17 20:42:45

I have actually already have the 123 magic book which I was given when I first started the course last year. I have been following the course at home for the past year. It seems to work at the time in terms of punishments but it hasn't stopped the behaviours my son is displaying.
I have never heard of triple P is it a free online course?

PolterGoose Sun 22-Jan-17 20:48:13

Message withdrawn at poster's request.

nerdinator Sun 22-Jan-17 20:59:22

Could only find one for £70 something quid and that's money I just don't have spare right now.

PolterGoose Sun 22-Jan-17 21:03:08

Message withdrawn at poster's request.

Ineedmorepatience Sun 22-Jan-17 21:24:50

I read something recently about how few children had been diagnosed in Lincolnshire in the last few yrs! No wonder they are not diagnosing if you cant get a referal! Personally I would write to the CCG and ask how to access the autism diagnostic pathway in your area!

Sounds like a nightmare!

Ineedmorepatience Sun 22-Jan-17 21:27:34

m.grimsbytelegraph.co.uk/autism-petition-receives-backing-of-council/story-29755482-detail/story.html

nerdinator Sun 22-Jan-17 21:48:08

I am actually in Nottingham but not far away.
Sorry, what does CCG stand for?
Funny thing is, my sister in law was pulled aside daily when my nephew started nursery at age 2 and they started everything for her there and then. This is how it started with me and I am just getting nowhere.
Turns out now at age 7, my nephew has autism, sensory processing disorder and an extra chromosome which can be genetic (my brother thinks he has it and is being tested) he also has a tic disorder. My sister in law has said everything I've told her about my son is identical to my nephew. She lives up north though and we don't see each other all that often.

Ineedmorepatience Sun 22-Jan-17 22:38:00

Clinical commisioning group.

How about a different GP as well?

knittingwithnettles Sun 22-Jan-17 23:08:30

The thing is, even if you do get referred and do get an autism diagnosis, there may not be any practical intervention beyond a bit of paper at this stage. You will probably just be given the details of NAS etc, books to read, generic strategies which could probably be found online, or from your SIL even.

Nursery should be providing him with support whether he has a diagnosis or not, or pressing for an EHCP if they think he is in serious need of assessment by a professional. And YOU may be brilliant at intervening if you use autism-friendly strategies, most of those strategies would work for neurotypical and children with other needs, so you have nothing to lose.

Explaining things before you do them. Allowing for sensory needs. Investigating sleep problems via GP, possibility of melatonin, whether he has autism or not. Sensory "diet" (google, it is not about food) Another parent on this forum just ordered PECs cards for a four year old and that helped her with her son. Pushchair even if he is 4, rather than expecting him to walk. Allowing for possible hypermobility and pain in joints, might make him refuse to sleep, or play up when out and about. Later development re: toileting might mean you have to make allowances for accidents/soiling, he will get there though, don't despair.

Lots of books might help you more than a generic parenting course, try Out of Synch Child, How To Talk So kids Will Listen by Faber and Mazlish, Explosive child by Ross Greene, Guide to Asperger's Ron Attwood.

My son was not diagnosed until he was 8. I had no NHS help up till then and I think all our interventions (which were good ones mostly) were home grown and just happened because they worked. Sometimes we got it wrong, and I wish we had known now what the problem was and maybe it would have been a bit easier, but I'm just saying this to reassure you that ifyou think there is a problem, you personally will probably be the one finding solutions rather than the NHS and their impaired referral system!!! (got turned down twice, before diagnosis, letter from school helped massively to get final referral, and even then not diagnosed for a year after that)

thanks

and the other thing...find a support group for parents with special needs children it is really a life saver to talk to other parents and the information sharing too as well as the emotional support.

knittingwithnettles Sun 22-Jan-17 23:17:56

Getting the environment right for a child with autism or dyspraxia was for us about routines, low demands, not doing too much or expecting too much, lots of outside green experiences, very simple diet but still had all food groups, not expecting good table manners or sitting still or behaving well in queues or on buses, limiting danger "zones". Essentially accepting that there were some areas that both my sons were going to have difficulty in (colouring in the lines, writing, playing in groups, change, new foods, motor skills, self care, dressing, organising, tidying up after themselves, listening to instructions and taking them in (ie get ready put your coat on and your shoes, went in one ear and out the other - ten years later still playign with train on the floor...aargh) All this is very stressful when you are busy parent and there are other siblings even to consider, but once you know this is the difficulty and it is not to do with bad behaviour but a different form of wiring (I am not even going to say deficit) you can adapt, and you can enjoy their company much much more. Ds2 was really an enchanting little boy, and I miss him!!! (he is now 14 and still lovely but I miss that little boy that never put his shoes on...and ate only pasta and red pepper and cucumber and large pieces of cheese and sausage, and woke up at 6.30am on the dot)

thanks again

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