Help from parents with children with ADHD, Aspergers, etc

lil_me

Just been gathering up a few bits of info for you Tashja. With regards to 'symptoms' no children are the same, but these are the 'criteria' considered during diagnosis assessment. These criteria are considered by the qualified psychiatrist or psychologist, of course taking into consideration what 'normal' children do and if the criteria are met just because they are a child or if the symptoms are more extreme. My son had many many hours of observations in settings including home (8 hours possibly more), hospital (over 10 hours), school (over 8 hours), play areas (3 hours +)etc then of course blood tests which made sure his diagnosis was correct, I do find it alarming how some diagnosis assessments are very short. He actually has several labels including Dyspraxia and ADHD aswell as Autism......great fun, it's like a conveyor belt where they stick labels on as they go along.

DSM IV Diagnosis for Autism

http://ani.autistics.org/dsm4-autism.html
http://web.syr.edu/~rjkopp/data/as_diag_list.html

DSM IV criteria for ADHD
http://add.about.com/od/evaluationanddiagnosis/a/dsmcriteria.htm

Nicki

We've had different experiences, clearly, Lil me, which colours how we see things. With luck, the OP can read both and decide for herself which way to go.

With me, once my child was diagnosed, she was automatically referred by the paediatrician to the SEN section to be assessed for a statement (even though she was pre-school age at the time), and referred to SLT. We were also advised that OT would be helpful, though as with you this wasn't available on the NHS in our area. This gave us the option of getting this privately though. We were given details of the Early Bird course, and referred to the local special school, which provided training courses on autism.

I wouldn't say it was all plain sailing, and I have had to fight for services too, but at least I knew what the problem was and what was needed, so knew what it was I needed to ask for.

As for what the head said, if I hadn't been told what it might be, I might not have taken vague concerns seriously enough to seek any medical support at that point, as, like OP, I hadn't spotted any problem myself at that point. It would be wrong if the head had said that a diagnosis would definitely lead to a statement, but from what OP has posted spot on if he said that as things currently stand the only way the child had a decent chance of getting a statement (given what the EP has already said) would be if he got a diagnosis (which would cause EP to think again about his level of need). It's all I suppose a matter of interpretation of what was actually said, and neither of us were there, and OP is still in a state of shock, so we may never know which of the two it was.

Anyway, as Savvy-Sue said its a personal decision to make as to whether to go for a diagnosis or not, but I'm not aware, once you start the ball rolling with a doctor, that you can stop them making a diagnosis (if you want them to assess the need) assuming of course that the doctor can actually decide on the correct one which isn't always possible at that age. I personally needed the steer that my child was on the spectrum to work out how to help her (and appreciated the head start that some of the referrals gave me). You didn't find that so helpful.

My experience of bad schools by the way is where they refuse to believe the child has ASD/ADHD (even in the face of a medical diagnosis) and therefore refuse to provide help and support and punish (even exclude the child) for their behaviours. This has happened to 3 friends of mine (one of whom had it happen twice at two separate schools!) To have a school suggesting that challenging behaviour might have a medical cause and being willing to support the child if this is the case is therefore hugely refreshing to me, which is why I feel quite kindly towards this head who sounded to me like he was genuinely trying to help.

Rose2White_2

Hi Tashja

You are at the start of a long journey which will be as individual as your son is, depending on where you live and how your local schools & CAHMS work will depend on what service/diagnosis you will get.

My son was seven when he was labelled a trouble maker and all he required apparently was some anger mangement classes by the time he was 10. The truth was that he was so frustrated that it came out as anger in school.

It was noticed by the school on a week away that chocolate made him worse, since then we have cut out all chocolate/cocoa products, high sugar items, caffine (sp) and artificial items. This means home cooked food, no crisps, a healthy diet, and nothing above 20g per 100g on anything if I can.

Five years down the line we still had no diagnoses and a HT who said he was 'nothing more than a naughty boy'. That did it for us & we paid £350 for a private report with a child psychologist which the school had to act on or disprove with their own tests.

My son is now 14 and next year is his last year at school, but because of his label he now uses a laptop in school, has extra time in exams & even has laptop use for exams (or he'd better). It is still hard work but worth the fight, not that son thinks so right now. Lack of intrest in anything doesn't help.

As for the school psychologist you have the right to ask for a second opinion, look up you local parent support group, your doctor or CAHMS can give you some info on them.

Good luck & don't give in your son is still the angel you love, he just needs a little support like any missunderstood child.

Hugs to you both

shazrobo

hi, just wanted to say, i have twin boys, from starting school they were always labelled as double trouble, as their behaviour was so bad, they couldn't focus on what was being taught, and used to hide under the desk and screem, or run off and disrupt lessons. at age six, one of my sons, through school was referred to cahms, eventually he was diagnosed as severe ADHD, in time he was statemented, got lot of support, and generally did wellin junior school, by having one to one support. the other son, was still labelled a trouble maker.
fast forward to starting high school, the school was too big, they couldn't find there way around, couldn't focus etc, lad who was statemented, was transferred to a special school, small classes max 6 kids per class, and is doing well there.
other lad stayed in the high school several more months, usually in the isolation unit, alone no friends etc, as every time he was retured to class he couldnt cope. luckily the headmaster eventually reffered him to cahms(i didnt realise i could have done it myself then, no internet at that time, and nobody told me)
at 11 years of age he finally got diagnosis, treatment, a statement, and a place at a special school.
he has improved so much, but still not like the first son, but catching up.
what i'm trying to say is the sooner the diagnosis is made sooner you have access to support and services.
and to the poster who said with a diagnosis they couldn't use sitters babysitting service, i disagree, i use them a lot, nobody else would babysit for me because of the kids behaviour, but the sitters agency have been great, and i still use them now, as i cant leave them in the house alone to go out

Tashja

Dear all

I just don't know how to start thanking you all - I don't know if you will ever know how much you information hand support has helped. I can see both sides of the argument for getting or not getting a diagnosis. In our case I feel we do need to know what we are dealing with - for nearly 5 years now we have had it drummed in to us that N is a naughty, nasty boy and we need him to know that the way he acts isn't his fault.

No matter what he will always be my baby and my precious angel, as will my other 2 children - no diagnosis, illness or disability will ever change that. I hose to have my children and I will sort out any problems they have - I will go to the ends of the Earth to make sure they have everything and anything they ever need.

We have just got back from the doctors and as soon as he heard DS's symptoms he has referred him to a Pediatric Doctor at the hospital and in turn they will refer him to cahms (called cahmt here with the T standing for team as opposed to Service) If the GP was to send him straight to cahms it ould take 6 months, if the school referred him to cahms he will be lucky to be seen by the time he is 9 but by sending him via a pediatric doctor he can get seen in about 12 weeks.

I was happy that I didn't have to beg or fight to get N refered - as soon as I saiod "the school think . . " the doctor became more open to the idea that there might be a problem. It has also helped that the school have agreed to do a letter to the hospital stating the problems N is having and they have also said they will provide evidence of his problems.

Lil-me : Thank you so much for your help and for the links to the support group and the diagnosis tools. I will be having a look into the support group as I am finding this hard to get my head around at the moment - I have quite severe Post Natal Depression and that is having an effect on how I am coping but I know I will get there.

Nicki - Thank you too hun. The school do seem to want to help for which I am thankful. They are one of the best schools in this area so I am hopeful that we will have them behind us.

Rose2white - Thank you for the info on diet. I am a SAHM so do a lot of the cooking from scratch but guess I could do better. I am going to look through the cupboards today and get rid of any sweets, juice, etc and see if I can get to a level of 20g per 100g like you have done. It can't harm the other kids or me and DH to cut down a bit either 2 weeks Friday N is seeing a Kinseologist who is going to check him for any allergies so that might also shed some light somewhere along the line.

Shaz - How wonderful having twins !! I am so glad you are seeing improvements in your boys even if it did take a while to get there ((hugs))

Again thank you all. I cannot remember everyone to do a personal message too but I am thankful for all advise I have been offered.

I am just going to read the posts again because it is helping.

((hugs))

T xx

shelby161

Hi there everyone.A little background on my son:he is 13 now and in yr 8.He has had problems with school which started showing when he was about 8.Mainly teachers said that he wasnt concentrating,was disruptive in class and was excluded a few times in year 6.Also in year 6 he was diagnosed with epilepsy.We did think at the time that things would then get easier!They didnt!! In year 7 he was truanting regularly,more disruptive in class [resulting in him hardly ever being in certain lessons],excluded more,hard to handle at home,being involved in anti social behaviour need i go on.During all this time i had stayed in contact with the school,talked to him,punished him and on a night time cried a lot!!Year 8 has been marginally better.Some of his friends have been permanantly excluded and he found a good friend.We had a few talks with school and within the last 3 months he has seen the Ed Psych.BSTand had a first meeting with CAMHS.On Tuesday i picked him up from school [at lunchtime as he has attended school on a part time basis for 3 months] .The lady from BST asked him whether he thought he might have adhd and discussed getting him tested.He hasnt been able to tell me every thing that she said [as he says he stopped listening!!] but i am surprised that she made this revelation after spending 20 mins talking to him.I am more upset that she felt it was ok to tell him these things without at least speaking to me first.We have another meeting with CAMHS next week,i am confused as i thought that if anyone made this sort of diagnosis it would be them is that right? If not who would do an adhd diagnosis? Any advice welcome,and thanks to anyone that has managed to read my ramblings.......

moneysaving_pharmacist

My younger brother (2 1/2 yrs younger than me) has ADHD so I can understand to some extent the difficulties that people go through and I always try and have a chat with parents when they are picking up their prescriptions from ritalin or concerta. My brother was an absolute nightmare at times before he was diagnosed and started taking ritalin and he could be a nightmare afterwards as well.

My brother and my parents were lucky in one way though. All through infant school my mum had been told he was a naughty child and so on (the head even tried sellotaping him to a chair until he finished his lunch - he didn't and was still there a few hours later when mum turned up to pick him up), but when he moved to junior school he was lucky enough to have a teacher who had also taught me, knew my mum and was SENCO at the school. Within a week or so she realised that my brother was not just naughty, it wasn't due to bad parenting or middle child syndrome and had set the wheels in motion to see CAMHS - and this was back in 1990, so there wasn't the awareness there is now.

Rose2White_2

Anyone with the right qualifications can diagnose ADHD, ours was done by a child psychologist as CAMHS had dismissed him as having a low IQ due to a bad report from the school psychologist, when we had the private tests done his IQ ranged from average to above average in the different areas across the board, but in a seperate test it showed that he couldn't hold his concentration at all. It was like a switch being turned off and on over which he had no control.

The one good thing that did come out of the CAMHS meetings was how we punished him. We took each day at a time and if he was naughty one day he lost privalliges (TV, PC, etc) but if he was good he got to keep them.

We were in a cycle where he was bad so he lost stuff for a day, then he was bad again and lost for a week, then it got silly so he would give up being good as he had no privallages to be good for.

So find something good they do and praise it, no matter how small it is or silly it feels, and try to ignore as much bad stuff as possible, make the praise worth having, and the child will want more.

Bad behaviour at home may not be a problem now, but this can happen quickly so watch for it & start the good praise ASAP, if your not already doing so.

Good luck with your little ones and hug them every night so they know they are loved.

Tashja

hank you for the advise on praise. e have had a rough day at shool - DS stabbed another pupil with a pen - and we just do't know how to get it through to him that he has hurt the little boy. He doesn't have the understanding that he has hurt someone and he has no idea why he even did what he did.

Today though the school have completed the paperwork to get another apointment with the school pshyc. He is seeing her a week on Monday.

We are going to get there but it is a slow and complicated journey.

T xx

crockpot

My DS is 6 1/2 and has always been a handfull, not helpped by having an older DS who is 9 and has been an `easy quiet child`

Spoke to school nurse, who does not think he has a problem as he is able to control himself in school. He is having problems with reading and writting in school and has juct started speach threapy, he can speak but has a lisp and problems with a few sounds, it is reversable.

We have trouble with sleeping and he can be a nightmare at home.

We have tried star charts,bribs and everything we can think of. Omega 3 and cutting out sugar and E No`s which do make a differance, but I am still tearing my hair out!

Should I take him to see the GP?