HELP/ADVISE please. ADHD possible ASD.

[mumpaige]

Hiya everyone, this is proberly going to be an extra long post as I feel im banging my head on a brick wall and am the only one who can see my son is 'different' to others. Im a single mum so really only talk to my dad about it but he completely refuses to believe my son may have ASD, therefore making me feel like im making it up!

Firsty my son is 6 (7 in 2 weeks) he is completely deaf in 1 ear and has recently been diagnosed with ADHD. A small insite of how life is at the mo... he is currently in a pupil referral unit after being temp excluded 4 times and then perm excluded frm school 13 months ago. after only being in mainstream for reception and half term of year 1. All of this is for violence and refusal to do work/play/ coming in from dinner/playtime. The school keep saying to me its 'choice' for his behaviour and hes 'choosing' to be like this, which makes me want to strangle them quite frankly as I just know that isn't the case!.
He is extremely aggressive and really hurts his sister on a daily basis (5 & 4 years old) he absolutely can not stand anybody being in his 'space' and if they are he will just hit them or 'charge' as he calls it. But he is more than happy to come into others personal space and touch them (he seems to like to touch when its on his terms eg he will sit with me and stroke my arm/leg/face). The school say there is 'no trigger' and often no reason as to why he can just explode and lash out and he is very up down with his moods. I often find myself telling him its okay to smile when your happy. When he is looking at somebody his eyes constanty shoot up into the air so he isn't keeping eye contact. He wets the bed every night and sometimes during the day, more so if hes on the computer or playing with something he really enjoys (transformers/lego) since being a baby he has had a fascination with wheels and would just sit for hours spinning them and can still do it now. He had speech therapy when he was around 4 but it only lasted 2 sessions as he wouldn't listen to the lady and was more interested in touching the toys in the room and climbing to reach them. He is extremely picky with foods and he would literally starve if I tried to make him try something new. He sometimes gets words mixed up too like in a sentence he will get agitated that it dosnt quite come out as he wanted It too. He is much more clumsy than his sisters and often knocks things over and will just sit looking at it and is so docile when asked to pick it up.

The main thing that's worrying me is the violence and the outburst and the way he cant stand to have his space intruded.

Do you think I have reason to be worried and have him looked at as at the minute I feel like I'm being a parent who 'claims there child's ill when there nothing wrong with them'

Any advice and help would be massively appreciative.

He is also statemented, has a 1:1 and is waiting a place in a special provision school, as the pupil referral unit wont recommend him to go back to a mainstream.

Hi Poltergoose, Thankyou for all the resources, I have never heard of any books or anything to help as its all pretty new to me as tbh I just thought he was naughty. I have recently read about PDA and absolutely everything it says just describes my DS for eg. I asked him earlier to take his shoes off, twice I asked and both times I was ignored, so instead I said 'son are you going to take your shoes off' and he instantly took them off, as it was his choice. I have just put my claim in for DLA and have been awarded HRC so this money will definitely help with costs of books ect. I feel as though im just 'labelling' him with all these issues but I really just want to understand why hes being the way he is because I know he isn't just 'naughty'. I often sit and think of the lovely smiley little baby I brought home from the hospital and wonder where that baby went I guess hes still in there just needing a little extra help.

that's all really helpful thankyou. Sounds like you are doing a great job and I hope one day me and my son will be the same. I just want us to have a good relationship and have fun times instead of me just shouting at him all the time.

Yea sometimes when I go into school and hes had a bad day, I just sit next to him and talk to him give him a cuddle and often give him the choice as to walk out holding my hand or weather I have to carry him out kicking and screaming (sometimes he just refuses to leave school when hes asked) and he will calmly take my hand and leave. Iv noticed the school look at me as if to say ' you aren't even going to shout at him or tell him off' but I know from experience if I dothat its just going to make things worse and upset him more.

Hi Paige

You are in safe hands with Polter, but just to ask, have you looked at any special schools?

I know it would be easier to decide about special schools if you had more information about what provision dc needs, and certainly a sensory OT assessment would be good as well as getting back to paed about possible ASD/C or PDA.

But the LA must by law, give your ds a full time education that meets his needs. The temptation for some LAs is to try children out in the cheapest option. So if you can mange to look round some before the end of term, it might help you get the feel of what they might be doing to help other children like ds. And with luck you will find one that feels right for ds.

Although it is easier to get a special school that is maintained by your LA than to get an independent special school, you can learn plenty by going round those schools. And if an independent special school or a special school maintained by a neighbouring LA seems like the best fit to you, then we will all be here to help you find the groups like IPSEA who can help you get what you want.

Special school could be a much more understanding place, both for ds and for you
Good Luck

Hi Senvet, yes the pupil referral ds is at currently want him to go to a 'out of borough' special school, I have been and viewed 1 but I just didn't get the 'this is the school for him' feeling, which I was hoping to get. All of this is new to me and no1 seems to want to do anything but me, the pupil referral unit just want him 'out there hair' in my opinion but im not willing to send him anywhere until I am certain he will be happy and its there right place for him. I have never even heard of a OT assessment, what is that? even with a diagnoses of ADHD and ds being on meds the teachers insist its 'choice' with him. Im defiantly going to write all this down and request something be done and quick and for him to be assessed for the conditions you have stated.
Thankyou

I have been helping parents in an ad hoc way for a long time and parents' gut feelings about a school tend to be very accurate. So keep looking - maybe some ASD specific schools, and compare with some EBD/EBSD (Emotional Behavioural Difficulties or EB-social-difficulties) It may give you ideas for things you do/do not want for your dc and help narrow the search. EBD is very much the sort of thing the PRU is doing by saying your ds is making choices, and rewarding good choices. Some ASD schools use that technique if they think it will help pupils, but the emphasis will be more on communication which is where the speech and language therapy (SALT) comes in as ASD/C is about communication (ie language) differences from the majority of the population.

OT = Occupational Therapist - they can do things like how to help kids who have trouble gripping pens (exercises and pencil grips would be typical recommendations) or trouble sitting up to write - again exercises and maybe a cushion or a special chair or a writing slope. This is the stuff I need for dyspraxic ds and hypermobile dd

But the stuff that helps loads of kids with ASD/ADHD and sensory issues are their sensory assessments and recommendations. So any child may have a response to certain sensory stimulation which is quite different to the others in their class, and causes them either to respond as if they had been over-stimulated, or not react to the same amount of stimulation as the rest of the class. Polter pointed me to Jane Ayres en.wikipedia.org/wiki/Anna_Jean_Ayres

My ASD/C relatives have, between them, the following:
noise sensitivity - one covers ears when two people talk in a car, the other can be woken by one bee in the room
touch sensitivity - one wears T shirts inside out because the seams hurt
taste sensitivity - anything vaguely spicy is a disaster.

The trick with these is to put in therapy that makes life easier, so brushing the skin with a soft brush can make seams in clothes tolerable after a while.

And my younger relative who got this type of support at school can now self regulate so that rather than overloading and lashing out (when little) or running away (when older) he can now tolerate a house full of guests and take part in a 80th birthday party, which seemed unthinkable 10 or so years ago.

GP should be able to ask for SALT and OT for you, but with OT try to get one who has done extra courses in sensory OT as that is likely to be useful for helping ds.

You are definitely onto something, so keep up the good work

Senvet Thankyou for all your help and advice I will certainly be onto his paed on Monday and I am going to suggest to the PRI that they try some PDA tactics with him as I am going to do at home as things like ' doing work' is a nightmare! Again Thankyou for all your adive, its so much to take it but im determined to get to the bottom of this and not wait 18 months like I did for his ADHD diagnoses.

DS has a great mum, and with determination like yours you have a very good chance of much better outcomes for ds

The (mainstream) school he was in seem to have a pretty poor understanding of your son and of additional needs generally. I find it very poor that they're saying he has been "choosing" to behave in these challenging ways, and that there are "no triggers" He's only 6! And he has an ADHD diagnosis. No 6 year old just chooses to show challenging behaviour so consistently. If there weren't neurological reasons then there would be environmental ones, such as family dynamics etc. Am just saying the school are idiots if they think it just happens for no reason, or basically just blame the child. I hope you can get the support, advice, and help you need for you and your DS. Perhaps support and understanding will be better if he can get a place in a more specialist school. Sadly, though there are some great individual teachers and TA's of course, generally understanding of additional needs in mainstream is often less good than it should be

Thankyou to everybody for your kind words and advice! I don't feel so alone now and feel much more knowledgeable to approach the PRI and pead to get extra help.

Glad you've had some great advice - not much more I can add tbh.

However I will add another voice to the you'll find your own way and things that work camp. We have a thread in chat call goose and carrot. It's very helpful! We often find that although all our dcs are so very different there are many similarities and can share ideas and try them out.

Argghh I went into PRI this morning with some sheets on asd/pda and tried to speak to the headteacher and she wouldn't even consider looking at the information I had printed out!! Still insisting its 'choice' and he's 'choosing' to behave like this!? Her argument is because he sometimes has 'ok' days! So I said well yea it's all about brain chemistry an sometimes us as adults with no neurological issues can have good and bad days but she completely dismissed me and so I just left very angry and upset! Really thinking about homeschooling now as the PRI obviously don't understand him or his needs.

Well give yourself a massive pat on the back for trying.

The term is nearly over, so I suggest moving focus to viewing schools.

My DH says 'to a hammer, every problem looks like a nail" so to the head of the PRI, who is trained in behaviour issues, everything will look like a behaviour issue.

Frankly a good head would spot the non-behaviour stuff, but it is what it is.

Hope this helps

I have rang LA attendance team and they had SENCO call me back asking to not make any quick decisions but I told them quite frankly that the PRI are a waste of time and are just making things harder, how am I suppose to convince the pead that DS has all these issues of the school are refusing to acknowledge it. Head said to me 'well if ur labelling him with ASD that means he will never be aloud out on his own or to the cinema or to cross the road' does she really not know that ASD is a spectrum disorder and affects everybody differently in some ways.

Blimey mumpaige you would think that a head of a PRI would have a better understanding of the full variety and spectrum of additional needs than that, if only to rule them out when considering responses to challenging behaviour in children. Or not rule them out and find/offer appropriate support to each child

no matter what I say she dismisses it, even with his ADHD I'm sure she still thinks I'm making it up!

'well if ur labelling him with ASD that means he will never be aloud out on his own or to the cinema or to cross the road'
That is outrageous
It would be outrageous from a mainstream head but doubly so from your cockwomble-special-school-head

fyi, cockwomble-head, my relative who couldn't even walk into his ms school aged 8 has left special school, got a job, pays taxes, and got married, SO THERE

That's good to hear senvet!