Need someone to talk to - sorry, this is long

[KarenThirl]

Hi, I?m Karen and I?m new to Mumsnet, although I have read several threads over the last few months looking for information. I apologise in advance for such a long introduction, hopefully you will understand the reason for it by the time you get to the end.

I have a six year old son with behavioural difficulties which have been apparent since the age of two (though he was ?lively? from birth). Since he was four I have held the belief that he suffers from ADHD and indeed he is now being assessed for the second time ? the first assessment was rather botched by an incompetent psychiatrist who missed several key signs, a Reception teacher who was absent so often that she barely knew him, and a Head Teacher whose objective seemed to be more one of promoting the school?s reputation than of any concern for my son and his difficulties. Not surprisingly the outcome was that he was a ?wilful? child but with no behavioural problems.

He is being assessed by a different psych this time and she is far more accepting of our concerns, going so far as to state at our initial meeting that she believes he has either ADHD or ASD. So far she has visited us at home and at school and on both occasions J?s behaviour was representative of the problem but far from his worst. This has left me with the concern that she may not have seen sufficient evidence of the problem to warrant further investigation, and the lack of response from the department (despite my phone calls requesting feedback) isn?t helping. It was promised at the initial meeting that following these observations J would be tested for ASD and I need reassurance that this will still go ahead. We?ve not even been given the usual forms to complete, which I believe are commonly used in the diagnosis of ADHD.

I?m now at the point where I?m tearing my hair out in frustration. Normally I am calm and patient but lately I?ve been snapping more easily and it?s not hard to see why. J?s behaviour is deteriorating rapidly, not only at home but in school as well. His concentration span is almost zero and I have to constantly remind him of what is required of him, even to the point of coaxing every mouthful of food into him. He is rapidly losing friends; most children merely tolerate him though many have snubbed him completely, including some long-term friends he?s known since playgroup. Several have said that they don?t want to come to tea any more, and party invitations are conspicuous by their absence. ?High maintenance? doesn?t begin to cover it, and it?s getting hard to take him out anywhere because of the potential for embarrassment.

We have noticed a marked deterioration in J?s behaviour since we took him off fish oils mid-December (on the advice of the health visitor who felt it would be beneficial for the psychiatrist assessing him to observe him in all his glory, as it were), and would dearly like to reintroduce it so that we can regain some control, but obviously can?t do that until the assessment process is complete. That?s another reason for the failed assessment last year ? by the time the psych got to see J he?d been taking the supplement for three months at full strength and it did have a noticeable effect. Now we feel so helpless, watching J?s life falling apart and knowing that we can?t do anything to help, and are stuck here waiting for the psych to get her finger out and continue with the assessment. Even J himself is beginning to notice the effects, and I?m powerless to reassure him without a diagnosis.

On the whole I have good support from family and friends, teachers etc, but tbh it?s all of the ?better days ahead? variety and I?m finding it hard being in the company of ?normal? people with their normal lives and normal children. I can?t talk freely about our problems because the usual response is ?Oh, I have days like that?. Well, sorry mate but I very much doubt that you do. And that?s why I?m writing such a lengthy post to Mumsnet, in the hope that I can find other mothers experiencing similar problems with their own ADHD/ASD children who are willing to share their shoulders in return for mine.

I?d be very grateful for any responses and/or advice you might be able to offer on how to cope.

Karen
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[Merlot]

Hi Karen

My little boy has special needs of a different nature so I'm afraid I cant offer any advice, but just wanted to say hi!. There are loads of mums on this board who have a wealth of experience in the field you are talking about, so I'm sure someone will be along shortly with some very useful advice.

Lovely to meet you!

[collision]

Welcome to MN. I have no experience of this but there are plenty who do so just wait a while for them to come on.

Just wanted to say hi.

[JaysMum]

Hello and Welcome to the world of MN.

Your post was almost word for word like the first one I ever posted here.

I too have a little J...maybe its the name?????

My j has dx of a whole host of conitions....ADHD ?asd too....so I totally understand what you are saying about birthday party invites being thin o the ground....my J wouldnt go to a party anyway...but the fact that he has never been invited to one only highlights just how much he is tollerated by other children....everyone gives him a wide berth because he is sop unpredictable.

Keep posting here....in such a short time you will be wondering how you ever coped without the support and advice you will receive here from Mum's who really understand. It has become my lifeline.....

[KarenThirl]

Blimey, you lot are quick! Less than quarter of an hour since I posted and replies already! Thank you for the warm welcome - I'm already looking forward to getting to know you all better.

Karen
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[beccaboo]

Hi Karen

Welcome to mumsnet. I have a 3 year old DS who has recently been diagnosed with ASD, but the diagnosis process is a long one, it took us a year from our first referral. I totally understand your frustration, I felt like I wanted answers NOW and couldn't understand what the hell was taking so long.

All I can say is, don't be scared to make a nuisance of yourself. I rang the CDC quite often and generally became a pest until we were seen. Apparently where we live it generally takes two years to get a dx, so it DID speed things up - even though it didn't feel like it at the time!

The other thing we did was to see a paediatrician privately - the fact that she was concerned seemed to make the NHS paed take us more seriously. It could well turn out that your ds is simply a 'wilful' child as you say, but you need to know one way or the other.

[KarenThirl]

Thanks for your reply, Beccaboo. TBH I wouldn't be concerned about the time it's taking for the psych to get back to me if I hadn't already been through the process once before and had a reply back within a few days of J being seen that time. I'm more cross that the department is ignoring my phone calls - I'm now going to contact my health visitor and get her to ring instead - maybe they'll respond better to a fellow 'professional'.

The psych did say at our first meeting that we'd be at Ed Psych stage within two months - that would take us to Easter.

I know for sure that J is more than wilful. His behaviour at times is frightening to witness and he literally cannot read people's expressions to understand what they're feeling. Only yesterday, when I was crying after (I'm ashamed to say) slapping him in a fit of frustration, he turned and laughed at me because it was "So funny". There's no way that's normal, or wilful. He really has no control in these situations, and I'm scared of losing my own.

What's CDC? You'll have to bear with me, all these abbreviations are so new to me!

Karen
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[Jimjams]

re coping (will write more later- bu need to go and pick up ds2)

First STAY AWAY from normal people and normal kids if you can't handle it at the moment. It took me a long time before I could. Go to some local groups and find friends in the same siutation.

Secondly- I'd seriously consider giving fish oils again if you;re going to have to wait any length of time. odff fish oils ds1 is simply dreadful and I couldn't cope with him like that for any length of time.

and thirdly- welcome

[MrsFROSTgetful]

www.behavenet.com/capsules/disorders/adhd.htm
Hi!

I have 2 son's diagnosed with Aspergers (ASD) and one also has ADHD aswell! (the other is currently being assessed for ADHD)
I also have a third son who like you i belive "has something like ADHD/ASD"...but as yet he's viewed as 'Bright and attention seeking'

Use thes websites to complete ADHD screening tests.... they are very similar to the 'CONNERS RATING SCALE' that our paed uses for parents and teachers to complete as part of the assesment process.


elcaminopediatrics.com/forms_medrecords_adhdhome_pf.htm elcaminopediatrics.com/forms_medrecords_adhdschool_pf.htm elcaminopediatrics.com/forms_medrecords_childattentionprofile_pf.htm


Blossomhill,chocol8,Jaysum and myself have knowlede ofADHD + Aspergers

Coppertop has 2 boys with ASD (aspergers)

DAVROS/Jimjams are great as they know alot about 'how the system works'....and Jaysmum has had many battles with school etc so should be better at advising procedures than me!

i can help with coping strategies....sleep problems.....medication (ds1 takes a ritalin type drug for his ADHD)

All of us on this SN part of MN will be helpful....even if we have no personal knowledge we all get involved !!!!

welcomeXXX

[MrsFROSTgetful]

ooops! that 'behavenet' stuff should be further down the post!!!

Blossomhill....please do me some links ...i am so clumsy at this!!!

[3mum]

Hi Karen, like you I lurk far more than I post! Can I just say though that the best help and information I have found about children with ASD/ADHD has been on the various mumsnet threads. If you haven't already I suggest you do a archive search for ADHD and ASD and read through the old threads. There is a huge amount of information there.

What really strikes me though is that mumsnet is the only forum for mothers of children like ours (my son has a formal diagnosis of ADHD/AS and a statement) to come together and realise we are not alone. Until I discovered mumsnet I thought I was the only mum with a "naughty boy" and that it must be my rotten parenting which had caused it. The sense of isolation is incredible.

Via mumsnet I have discovered that there are lots of us in the same boat and boy, how common is it. I reckon there are two other boys in my son's class with the same thing but undiagnosed. I am starting to wonder whether our children are really an aberration or are they a naturally occurring group which has always been there but which is highlighted now because of the way schools operate? Doesn't really affect the day to day need to cope with very challenging behaviour and make sure they get an education and eventually a job, but its food for thought.

There is a lot of practical information on here but FWIW here are my views of what has helped.

1. Get a statement as fast as you can. We kick started the process with a private Ed Psch report. The NHS Ed Psych then largely seems to follow the same route because they don't want to contradict each other.
   
   The statement brings understanding from all parties from schools to doctors (the first question is always "has he got a statement" if the answer is no you don't really get off first base IME.)
   
   My son has full time one to one and that is the only thing which makes it possible for him to stay in the class and learn.
   
   
2. Ritalin - an emotive subject. It helps my son especially when out of his routine so we think its worth it.
   
   
3. Play dough - really helps the need to fiddle and move all the time. We take it everywhere including into school.
   
   
4. A time out desk in the classroom. Part of the problem is just too much is going on. My son has his own table facing the wall behind a barrier with his playdough on it. When it becomes too much for him in the classroom he retreates to his time out desk for a chill out. Once he has had a few minutes there he is expcted to go back to his main desk. This helps him immensely just knowing that there is somewhere he can go to escape before he overloads. He chooses when he needs to go there. His inital IEP was to spend five minutes at a desk with the other children.
   
   
5. move n sit cushions (blow up wedge shaped cushions) give sensory stimulation and allow for wriggly bums without appearing to be too wriggly.
   
   
6. a visual timetable in class so the day is always predictable.
   
   
7. a helpful school and especially SENCO (we are on our third school but the moves were really worth it).
   
   
8. a bedtime set in rock so that you know you will have some free time in the evening (my son hates being locked in so a threat to close his bedroom door does the trick).
   
   
9. Continuous hard work by you to create some semblance of a social life for him (IME no little boy will turn down an invitation to come to tea to play the Simpsons video game).
   
   I'll let you know if I think of anything else.

[coppertop]

Hi Karen. Welcome to mumsnet and to the SN board.

As MrsF mentioned, I have 2 boys. My 4yr-old has a diagnosis of ASD and goes to our local primary school. Our 2yr-old has a preliminary diagnosis of ASD and will be re-assessed when he is 3 next year.

I agree with Jimjams and would try to get him back on the fish oils ASAP. Do you have access to a camcorder? I was worried that the team assessing my 2yr-old wouldn't get to see how he really was and so filmed some of his quirks and meltdowns etc. They found the tape really useful and were interested in using it for training courses. It's easier to hide the camera in a strategic place and do the filming without J seeing it.

Visual timetables really helped us with our 4yr-old. He needed to know exactly what was going to be happening next during the day.

Does J have any sensory problems? If so there are different things that you can try to help reduce his stress. Both of my boys have very sensitive hearing and I've found that letting them wear a hat/hood to muffle the noise can really help.

[JakB]

Heh Karen, welcome to mumsnet . I have a dd who is severely autistic and none-verbal so very different from your ds. However I know the 'Oh yes, I've had one of those days' feeling when mums with kids without any difficulties try and empathise! On here, you will find mums who REALLY have had ONE OF THOSE DAYS! (goes into weeks or months sometimes).
You will get lots of support here honey

[bambi06]

im here to support you too..iknow where youre coming from.trust me . my son has asd (5) and somedays he bounces off the walls more than others and in jan i really couldnt cope anymore and actually started having therapy ( through my childs psychologist who was extremely sympathetic) which has helped enormously and now its ok. but every day after school i dread his behaviour as he releases everything that he`s held in from school but i agree about turning your back on those that dont understand how a bad day your having EVERY DAY. but its tempting to tell them excactly what you think and to explain your situation but unless you are in the thick of it they have no idea.. hugs to you

[JaysMum]

karen....everything that 3mum has written i agree with are interventiona nd strategies that you must put into place to give your son a sense of direction and control.

Is your sons behavior difficulties affecting his school work?.....has he been seen by a EP at all?.....I would strongly suggest a private EP assessment....it would speed up the statementing process.

You just fire away with any questions....someone will come along and give you the answers....in the meantime you'll get ooddles of support here.

[KarenThirl]

Jimjams - Hi, and thanks for your advice about 'normal' parents. Yes, I do need to keep away from them - not that they're being rude or anything, they just can't possibly understand what's going on outside of their normality. Hope to start on fish oils again once I've spoken to the psych - just want to make sure she's got enough evidence to go on first.

Mrs F - thanks for the links. I've read most of those charts and scales before and that's what I base my belief on - J ticks almost all the boxes and scores highly (IMO). Just concerned that he didn't act 'to type' when the psych saw him, but ain't it just the way?! Don't know how you cope with three - you must be made of strong stuff.

3mum - We're very lucky to have incredibly supportive teachers who are doing much of what you've suggested for J in class. He has a separate table to work on when he needs to concentrate at times when they anticipate that he won't be able to cope. They're also giving him additional work beyond the level of his peers (he is very bright, as I realise is common). ATM J doesn't get distressed about his problems and in some ways seems oblivious to them - he thinks everything he does is funny and cannot tell when other children/adults don't find him amusing, so I guess he's indifferent to other aspects of it too.

Home discipline has always been consistent and firm, ever since he was born because we both believed that that was the way to train children into behaving appropriately - clear messages etc. J doesn't have much problem with change to routine but does perform better with structure, so we have lots of that.

Perhaps I should add that I have ME to cope with as well as J's problems, which does restrict my opportunities to take a break from things. J goes to bed at 8pm, I go at 8.30 because I can't last any longer than that. Ho hum.

As for Ritalin etc - in the past I've been dead against it but since I've read more and J's situation has worsened, I'm more inclined to give it a go. Someone said to me recently "If your child had a heart condition, would you withhold medication?", and that convinced me that I should at least consider it to improve J's quality of life. I realise that potentially there are side effects but then that's true of most drugs.

Coppertop - Timetabling does help, to a degree. J will accept that now is the time to do X when he knows it's coming, but the hard part is getting him to actually do it - his focus and concentration are appalling. Don't have a camcorder but I'd considered it before the assessment began. Instead I typed up a whole raft of day-to-day incidents and a couple of sample days to illustrate my point. Not sure if it helped though. J doesn't have any sensory problems as far as I can tell.

JakB - thanks for your welcome, and to all of you.

Really appreciate your feedback, thanks.

Karen
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[Dingle]

Just a welcome to MN, and most of all the SN section!
I have no advice for you I am afraid, I have a ds of 5 and a dd who is 3 (she has DS.)
You will find a wealth of info on here Karen, but mostly you will never have to feel alone in it all again.
Whatever you need to share, good, bad, life changing or the silliest little achievement...it will all be understood and appreciated.

Welcome aboard, love Dingle.xx

[JaysMum]

Karen....do you use Visual Timetables? They make a big difference because the child can see what they have to do each day. Also we used a small timetable of pictures....eg. I home ed J so in the morning I give him a list og pictures (4) writing, reading, spelling, math. He gets to choose in whjat order he can do the things but in between each task he gets a prize....sticker....biscuit....the last is to watch Mr Bean DVD for 30 mins. It works better for us this way than saying right now its school time!!!!!

[JaysMum]

I really must read my posts before I post them to check my mistakes!!!!

[KarenThirl]

Jaysmum - No, I don't use visual timetables but I get J to update his own in a Word table every week (as part of his 'homework') - like I said, he's very bright and doesn't have a problem with reading. I've done all the sticker/reward methods for years and although they can encourage him to do a task at the time, he rarely learns from the experience. It's 'once more from the top' every time, so wearing. Our usual homework time is after tea, while we're still at the table. As you suggest he gets a sticker on his chart for each task accomplished (maximum of three to keep his attention focused - novelty soon wears off). After that he can play on the computer or whatever he likes till bath/bedtime.

Our main academic problem is creative writing. He has a real thing about it, preferring to write lists, bullet points etc. Intellectually the ability is all there (and way beyond his age level too), but he can't get it on to paper, which is frustrating for him when all his peers are writing stories by now in literacy lessons. I asked him once what the problem was with writing some sentences and he said that the first sentence comes into his head, then the second one comes in before he's got it written down, then he gets confused and can't think what to write at all. That sounds pretty typical ADHD to me. Felt so sorry for him. I've even asked him to do work on exciting topics that he's really interested in, but no joy.

Karen
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[tallulah]

No practical advise but just to say I've been where you are & I sympathise. My 3rd (another J..!!) has ADHD which was diagnosed when he was 7. We jumped through hoops to get a dx, having been told at the first clinic that we were bad parents, & his problems were caused by having a father who worked nights

We are some way down the line & he is now 15. Most days he is OK (on Concerta) but don't we know it when he hasn't taken his meds! Getting a lot of the stroppy opposition now, & can't work out how much is ADHD & how much is hormones.

hugs to you

[JaysMum]

Story writing tips given to us by our independent SALT........

Get your son to talk about the story he wants to write before hand. As he talks about the characters ...what they look like etc....get him to draw them.As his story unfolds he can draw a picture of where the characters are etc....keep going with the pictures and him talking about the story. He then has a clearer picture in his mind about what he wants to write and visual cues to help remind him.

Another one you can try is a spiders web. Basically in the centre you write the main word about the story so say for example BOY...then you draw a spiders web around the word BOY. In each segment of the web your son adds descriptive words that will remind him of what he wants to write about. He may end up with a page which says BOY,JEANS,HAIR,BIKE PARK,FRIENDS,TREES,FOOTBALL etc....but the key words are all he needs and then he can fill in the blanks.

Children with ADHD are Visual Learners and need lots of visual cues to help keep them on track.

Does that make sense????? We use this strategy with both our boys and it certainly seems to help.

[KarenThirl]

Jaysmum - thanks for the tips on story writing. Some very practical advice there, and I'll give it a go over the weekend.

Thanks for your welcome, Tallulah. Must be something about Js!

Karen
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[lars]

Hi Karen, I do feel for you as my ds has o.d.d.not entirely ruled out ADHD but not all doctors like to diagnose this anyway. DS tested high for connnor score now on the medication.
Although there is no mention of this in assessment.
BTW Where do you live, only I've been waiting along time for ds to be assessed for a statement.
I know on another child different area but was diagnosed sooner rather than letter and with statement. larsxx

[lars]

sorry should be later - too early in the morning larsxx

[KarenThirl]

Hi Lars

We're in Gateshead. Don't worry about typos - you should see some of the doozies they come up with on the ME discussion groups, we're not exactly on top of things cognitively!

Update - just rang the psych's office and demanded a call back on Monday, not necessarily from the psych herself but anyone who has access to J's case notes. Explained how much things were deteriorating and how I'd like to get him back on fish oils but not at the expense of fouling up the assessment. Secretary said she'd find out and someone would get back to me. Fingers are crossed.

Karen
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