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Here are some suggested organisations that offer expert advice on special needs.

What age did you get an adhd diagnosis etc

9 replies

feynman · 03/02/2012 21:03

I just wondered if I could ask a few questions for anyone with children with adhd.

  1. At what age did you first think there was a problem,
  1. At what age did you get a diagnosis?
  1. Since then have you got any help?
  1. Has anyone got any strategies for stopping a child from moving constantly? He's getting worse. Bedtimes are a nightmare, and he cannot stop movving/talking. He tells me he needs to move or it hurts, he's 4 and I'm feeling helpless.

Anyone got any ideas, before I go and drown myself in a very large bottle of wine.

Thanks

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sheepgomeep · 03/02/2012 21:10

ds was 6 when we had a diagnosis and we noticed around the age of 1 that things werent right..

not much help since. camhs are next to useless. We have the tac team involved now as ds is now waiting for asd assessment. He's 12 now.

ds's adhd was more the concentration and impulsiveness rather than the high level energy although he is aggressive at times. At 6 he was kicking holes in my doors at home and disrupting the class

Has your ds got sensory issues as well? I know my ds gets very restless if in one spot for a long time, he says it 'hurts' and my ds hates labels on his clothes, they hurt him too

feynman · 04/02/2012 00:51

Hi, thanks, yes he has. He has some sort of sensory processing issues. Seems under responsive to things like pain/temp, needs to move constantly, he's started taking clothes off because they hurt. Thankfully this had so far been restricted to his pjs and his school jumper. Although its not good when the weather's like this, to find him with no clothes on, laid on top of his blankets!.

He is currently undergoing an assessment for asd, they are due to meet to decide in March. I think there is a reasonable chance they will diagnose him with asd, but I'm sure theres more to it. I expect that a adhd diagnosis will follow, but have been told it's unlikely before he's seven.

Who are cahms and what do they do? I've heard them mentioned on other threads, but haven't come accross them before. And what are the tac team?

Sorry for all the questions

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keepingupwiththejoneses · 04/02/2012 01:41

DS2 used to say things like your DS, when he was 4 he told the head teacher that his head itched so she told him to scratch it, he replied that he couldn't scratch the inside Shock.
DS2 was referred to a developmental paed at just before his 3rd birthday, at the time we had an amazing GP who suggested it to us. DS finally got his dx just after his 7 birthday, not because of paed but because his teacher. She had taught him in reception and was a bit of a non believer, she filled in his Connors report basing it on his progress between reception and year 2, paed was quite funny at the appointment after that, she looked at the form, looked at ds and just said 'this is wrong, it's going back!'. It was sent back and fortunately he had moved up a year and had a different teacher who filled it in properly.
CAMHS stands for child and adolescent mental health service, they are clinical psychologists who have the ability to diagnose, some areas use this service instead or as well as paeds. In my area they have several threads, diagnosis, therapy, severe learning difficulties support and family support. TAC is team around the child. This is where all the processionals who are involved with a child, get together with the aim of working together for the best of the child and support the family, or that is the theory. The name of this is different in different areas, multi agency, CAF and TAC.

feynman · 04/02/2012 01:55

Thank-you very much for that. How do you find out what is available in your area? We have seen a developmental paed, twice but they are so massivly understaffed, you have a brief appointment where they make loads of notes and say come back in 6 months, which ends up being 18months due to backlog, where they then say the same thing.
We see an OT privately as there is no nhs service for children with dyspraxia/sensory problems, in our area. They won't even see him for an assessment as they say they cannot offer any ongoing support therefore an assessment is a waste of resources!
We do see slt but only becasue I am a thorn in their side.
I just feel I need someone to look at my son as a whole, and not as a child with this that or the other. It was a portage worker who refered him to the the social and communications panel for assessment, but other then that we're floundering in the dark really.

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streakybacon · 04/02/2012 11:44

Ds (now 13) has AS/ADHD. First knew there was something not right around age 2, but got the usual 'wait and see' advice from professionals, nursery etc. He was a handful everywhere he went but nobody thought it necessary to investigate further.

He really started kicking off once he got to school, massive problems with impulsivity, not following instructions, aggression. Teachers were very worried about him and agreed when we self-referred to CAMHS, though they were worse than useless and dragged their feet for a very long time, despite strong suspicions of Asperger's. Inconclusive assessment age 6 but we kept pushing and had a second opinion referral to another hospital when he was nearly 8, and that's when he was dxd with Asperger's.

No support though, nothing in school - he was just expected to behave himself and constantly got into deeper and deeper trouble. Being clever was a double-edged sword as it gave the assumption that he was intelligent enough to know better Hmm. He had no friends and a reputation for being trouble. They wouldn't support statutory assessment, despite the head saying he was the most violent child with AS she'd ever come across. She even recommended special school (largely because she wanted rid of him).

All the support we've had has been what we've found for ourselves (and often paid for), eg NAS courses, other training, reading, charities. Even with a dx nobody ever mentioned Earlybird or similar training to us - we found out by word of mouth and mostly other parents.

Moved schools to one with AS unit for KS1 (ds now Y4 so not eligible), on the strength of word-of-mouth recommendations from other parents. It was awful, more of the same - ds just expected to behave well without any meaningful support. A couple of exclusions and some very serious violent outbursts - he was starting to crumble and we were seriously concerned for his mental health. Head teacher wanted him referred back to CAMHS for ADHD assessment and medication (we'd been adamant that he had ADHD for years but concerns not taken seriously). School did Connors forms but weren't honest about the extent of problems he was presenting during the day, consequently he didn't get his dx and no medication.

At that point we took him out of school to home educate, and found a good private child psychiatrist who diagnosed ADHD at first glance and recommended a trial of methylphenidate. It was exactly what ds needed and he began calming straight away. Tbh this was the catalyst that enabled him to engage with the world, and HE and medication combined have been the solution that's worked for him. He was never going to get far when he was under constant stress at school and no support given.

There's very little provision in this area and even less help for us now as most of it (when available) is provided via schools and as ds isn't on the roll of any school he doesn't count. Every Child Matters, my arse.

As for constant movement, have you tried relaxation cds? It's not a quick fix - it took two years before I could get ds to lie still and listen to the sounds for more than ten minutes - but if you're prepared to stick at it it might help.

streakybacon · 04/02/2012 11:44

God that was long, sorry Grin.

Triggles · 04/02/2012 17:15

  1. At what age did you first think there was a problem,.........around 2yo..........
  1. At what age did you get a diagnosis?....................4yo (almost 5yo), although we couldn't get anyone to listen to us prior to age 4 when he started reception and the school immediately stated something was up.
  1. Since then have you got any help?.............tons of help from school, OT, and paed..............
  1. Has anyone got any strategies for stopping a child from moving constantly?..............Hmm..... handcuffs, straight jacket, cable ties..... Grin No seriously, not a clue. Honestly, DS2 is a blur some days. Today is what is known (in terror) as "haircut day" at our house. We struggle through a haircut (always with same hairdresser as he is somewhat comfortable around her), and then he spends the rest of the day falling apart and acting up. It's so very stressful (for him and us both!!) that we always schedule it for a Saturday and leave Sunday clear (as we're usually still exhausted on Sunday!). But then, DS2 has sensory problems - the trimmer, the scissors (noise, movement, etc), the water sprayed, the hair (he cannot cope with the hair coming down on his clothing or face or neck or hands but refuses to have the cape on) - it all sends him over the edge. He was making so much noise that the lady that came in for the next appointment did the cat bum's face and tutted and such. We didn't say anything to her (although sorely tempted) as we didn't want to upset the hairdresser who is lovely, but neither did we explain or apologise either.

We try to get small increments of calm built in to the day, if nothing else simply to preserve our own sanity! DS2 has other things going on as well - ADHD, AS, DCD, hypermobility, sensory problems - so we're never quite certain which aspect is causing which meltdown. Hmm

HolyCalamityJane · 05/02/2012 09:18

Hi Feyn.

My DD is 5 she was officially dx with ADHD just before her 5th birthday we had already been seen by a private educational pyschologist who unofficially had DX ADHD and dyspraxia we got this done as we had applied for a statutory assessment prior to DD starting p1 and needed additional evidence.

We were already being seen by OT and I went back with the results and asked her to assess DD for Dyspraxia DD was off the scale severly dyspraxic and so was DX with that. To be honest there really isn't much the OT will do on the NHS ours could only offer a 6 week block of therapy and she got DD to thread beads draw pictures etc stuff you can do at home.

We got our statement for school and we also got 1.1 assistance for 25 hours per week. Even with this the first school we went to were awful they just traeted DD like the naughty wierd kid and told us "She had better improve her behaviour" DD's behaviour was really awful hitting the teacher, running away in playground, complaining of the noise, overly sensitive to touch etc etc. She also started having night terrors (the first time ever) she was summoned to the HT's office several times a day. We were at our wits end the school would not listen to our advice we do not have these issues at home and the last straw came when the teacher told me DD would not be allowed to be in the nativity play as she would "only embaress herself" Shock and Angry

We went to a private consultant at this point who immediately DX ADHD the NHS will not do this in our area until a child is 7!!!!!! So we had no choice but to go private. She prescribed medication off license as again a DC cannot have this until 7 years old. I gave this to her only for 2 days at her crap school they said they noticed she was much calmer.

We then started a new school which has a smaller class size DD no longer complains of the noise there are some other children with Dyspraxia in the class and one with ASD so the teacher is very accepting and understanding of special needs. I did not give her the meds instead I with some brilliant advice from Indigo Bell changed DD's diet and introduced Omega 3 and 6, zinc, magnesium vitamin B and a multivitamin. She has this daily and no sweets (well almost none Blush) and a healthy diet lots of protein, fish etc. And Epsom salts in the bath. The difference in her has been absolutely amazing she still has the occasional flare up in school but they are occassional.

Sorry that was long!!!! Have you nodded off yet???? Grin

feynman · 07/02/2012 01:36

Wow, thanks folks, theres some really helpful advice here. Will be back tomorrow to read properly, when not nodding off, just wanted to say thanks. Will no doubt have more questions tomorrow!

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