asperger disorder.

[Tiff]

i have just joined mumsnet and read some of the discussions with interest. My son is now 8 years old and although we knew from birth things weren't right he has only just been diagnosed with ADHD, asperger and dyspraxia. It took years of seeing child psychiatrists (who blamed bad behaviour), psychologists(dsyfuntional family) before i finally had to go private. I took him to see a paediatrician who finally listened to all i said and made the diagnosis.
my son has been put on medication and although it is early days we are noticing a difference. i realise that not every child needs the medication and some parents are reluctant to try it, but my believe, when you have a child like that is to explore every option.
we have found that as far as diet is related he has to avoid 'E' numbers especially colours and we have started to look at organic foods very closely.
I would just like to tell parents going through hell with a challenging child, Don't GIVE UP, at the end of the day only you can fight for your child.
does anyone else have any experience of a child with multi- conditions or asperger and if so do they have any tips they would like to share, also if you just want a chat after a bad day, get in touch.

yes...i don't know where it begins or ends....and which routine is mine or theirs....or who am i what am i!!!!

however just surfing ....found this website- sells brilliant pencils with mecanno type tops- ie bolt with a spinning nut etc which EXACTLY fit my aspergers son's love of 'fiddling' with things ...which i think must be 'stimming'...shame the paediatrician didn't explain stimming to me when going through the diagnosis!

anyhow heres the address!

www.fidgets.net/

Thanks to everyone!! maryz,Jimjams,mrsforgetful, WOW you all sound like such wonderful helpful people. Is is ok to ask - do any of your children with AS, ASD take any medication???? You all sound like 'such in control' type of people, who have such a lot to deal with(gosh my issues with my darling seem like nothing!!!) - To me they are huge of course LOL. So as parents with children who can be challenging - does it seem to get easier - or is this not the case at all?????
maryz: how old did you say your child was again - my ds1 will be 4yrs old in 11 days!!! I guess what worries me the most with him - is the way he can harm other children - I never take him to music, or play groups now - incase of an outburst - How does it possibly get thru to them, that it isn't nice to push, hit kick etc.. and harm others. My DS1 has all the answers too - he appears to no he has done it, but to register between a nice gentle touch and a huge push and drag to the ground are all the same!!! It really concerns me - I guess, I want this psychologist to come up with answers and a plan of how to break this habit immediately - but I know deep down inside - this won't happen!!! Sorry, for rambling guys

Bagpipes, no-ones issues are "nothing", they're all different and yours are rightly huge to you. I've learned never to look at someone else's situation with a child with SEN, especially ASD/AS, and to assume that they have it easier than me. Not that I'm saying that's what YOU said, you actually said the opposite. You mustn't let others devalue your problems with "its worse for others". I know we all say "fine" when asked how things are by non-SEN parents but we all know the truth!
I don't suppose the psychologist will give you answers but its a good step on the path to finding your own answers for your own situation.
Its hard to know whether to say that things get easier as the kids get older. My son can certainly do far more things than when he was younger and we can go to many more places, activiites etc BUT he also has a bigger repertoire of things that upset him, things he doesn't like, stims etc, likeswise things he DOES like...... Its certainly got easier to deal with emotionally and we have developed a million strategies and gained massively in confidence.
One idea - how about taking your son to music, play etc activities that are for SEN children. I know its hard to accept that this is where you belong, and maybe you won't forever, but I found it a godsend when my son was younger. At the "normal" playgroups etc we were just the freaks and felt very out of place. There might be something local to you, look on the notice borad at your CDC or ask other local parents. Good luck, let us know how the psychologist goes.

yes ... my aspergers son was originally diagnosed with ADHD so we decided to have a try on methyphenidate (his was called equasym....but better known as ritalin)
over the 2 years he's been on it we've had many people who have disapproved- but THEY don't live here!!!
he actually asks for his medication as he says he prefers how he feels when he's took it-he's nearly 10 so is beginning to understand some of his 'odd' feelings
he also had severe sleep probs .... as alot of our 'special' kids do- so eventually we were prescribed a 'safe' medication which rather than 'tranquilizing' him simply triggers his 'body clock'...its called MELATONIN- since taking it he's yawned,got so tired he's asked to go to bed and stopped all the 'fidgeting in bed' that he used to do (some was dangerous- he'd chew through wires from his playstation,tie sheets around his neck,and even peel wallpaper off the wall,he even pulled threads in his clothes/sheets)
I also feel in awe ofthe parents of children who are more'severely special needs' than mine- yet lije you bagpipes also find my children 'hard' enogh- i guess we all have issues which are easier and some which are harder.for example....i deeply respect those who have children with limited speech- because 'fortunately' mine are very verbal (which does have its drawbacks !) but at least they can say as best they can what they want or need ...sometimes i have to work on what they actually mean. my boys also are fully mobile- but need 'guidance' so they don't steer everyone else on to the road!, so i also am mindful of all the other children who don't get around so easily,and finally mine have eating difficulties- but after persistance over along time i have got them eating well enough to be able to eat something off any menu....may not be a balanced diet- but hey! who cares!

I've just look down this thread...... and amazingly(!!!!) this is the first thread i ever posted to- so if you go right to the bottom....you'll be able to see bits i wrote about the diagnosis and the start of the melatonin- i also noted MARYZ's 1st posting who along with DAVROS,JIMJAMS,JMB1964 (plus many more who i cannot name!!!) have been fantastic over the months- what i suggest you do is use the 'search' facility and enter individual mumsnet nicknames- by doing this i found loads of messages which kind of helped me as you soon see that we may sound 'coping' but we all have posted messages which were to 'vent' our feelings of despair too!!!

try this out for a 'feel good 'feeling!!!!
it's a mothers account of what aspergers is like and a child's account of what it's like toi have "IT"

Irk! If you search on my nickname, you'll find out that I fancy John Major

I've dipped in and out of this thread for ages, Right at the beginning sometimes thinking my son could be like this, mildly ADHD, then as I've read more of your experiences realising he is not. For years, I was half expecting some label for my son. So far it hasn't happened and the longer we go on, the less I think it ever will. He was a very active toddler, prone to hitting out and with very poor concentration (only escaped the hperactive label by the HV and his nursery teachers becuse he slept well at night).

In year 1 at school he was put on the special needs list for behavior (level 1 - the lowest level of the 5) at school. At the end of year 2 a Special Needs teacher wanted to raise this to level 2.

We changed schools when he was 7 years, by which time I definitely noticed he was calming down and concentrating on his playing with his toys more easily. I felt he was not beyond the normal spectrum of behaviour in any way. His teachers at his new school believed his behavoiur was 'normal' too, and could be modified without resort to special measures. They took him off the special needs register. He took a while to settle into the new school regime (more strict on achievement and behavior than his last). This time last year, although he was not put back on the special needs register, we had a meeting with the school Special Needs teacher and he was given a behaviour book to be filled in by the teacher and us each day. By this time his behaviour was much calmer at home. He had the book all of last year. I have to say whatever happened, whether it was the book, his age, the fish oils I gave him, his concentration and calmness at school and at home has improved so much. Though still prone to fidgit, still needing to sit apart from groups sometimes so as not to distract them or be distrated, his behaviour at this very strict school no longer stands out. Put him now at a less strict school and he might even be classed as unusually cooperative and hard working A friend who knew him well at 5 years says he is a changed boy.

His year 4 teacher told us the behaviour book will not be continuing in year 5, or the special rewards he got for being good. The head told us how much better he has settled in at school. So to all intents and purposes he is now hitting the average for behaviour in every way. His new class teacher is also the school's SN specialist, so I am interested in seeing how things develop this term. I am not sure we have seen the last of everything. But as the months progress and I see how my son is changing as he grows up, I realise how 'normal' he is.

I do feel we came close to a label for him a few years ago, for better or worse. I am in awe when I read some of the accounts here about boys my son's age and how you all are learning to cope. I sort of feel with you, but not, if that makes sense.

If any of you ever want to know what behaviour characterises a 'normally' challenging 9 year old boy - well that's my area of expertise

Hi Bagipipes- I haven't used medication (I assume you mean ritalin or something similar) because ds1 doesn't need it. He's not remotely ADHD and in many situations he can be remarkably "good"(too good really) He's very obedient so if he understnads what is being said to him he'll tend to obey. Our problems are different- he has very little language so he doesn't understnad what is expected of him. Then we just get all the usual auti problems like queuing etc- but medication wouldn't really help that. I do know a couple of children where its worked wonders though- and i think it can make a real difference in some circumstances.

We have done a lot of the biological stuff- diet and fish oils etc- let me know if you want to know more about anything.

Often I don't feel very control. I think I hold it together (most of the time) as I have some very close friends with autistic children. We talk on the phone most days - and I can always ring them when its all too much. They understand in a way others can't- and they very definitely keep me sane. I would recommend finding others in the same siutation. They'll porbably be more tolerant of the pushing etc- and maybe have useful ideas.

OOPS!!!! I forgot to put the website address.....now U can see why i have this nickname!!!

-try this out for a 'feel good 'feeling!!!!
it's a mothers account of what aspergers is like and a child's account of what it's like toi have "IT"

www.adoptionwebs.com/~cathysandy/Aspergers.htm

also TIGERMOTH--- i love your offer to help us out ref 'normal' behaviour of a 9 yr old- I'm always 'worried' that i misread things my 9 yr old ADHD/ASPERGERS son does..ie don't want to let him 'get away' with something he knows is wrong....however don't want to 'upset' him if he 'really can't help it'. Sometimes i rely on my 4 year olds behaviour to guide me! He does appear to be ADHD sometimes but can be excellent at others ...my biggest 'plus' with him is that i can reason with him and he seems sensitive to peoples feelings...for example tonight i was getting cross as he was over tired and wouldn't stop crying- he said " you're making me sad because your cross- thats making me cry"- now my other 2 lads would not understand the connection

Pleeeeease can someone help me- just as i've come to terms with my son's aspergers/adhd diagnosis...and hopeless efforts to get any help with his handwriting at school- i came across by chance 'DYSPRAXIA'...and it appears to 'fit' him better. Now, i'd heard of it, and even had someone who's son has it say my son was more dyspraxic than aspergers.....but now i am utterly confused...is there anyone out there who can help me or recommend a good online checklist that i could print off to send to whoever i need to to take this further- despite everything his worst problem is 'just' his handwriting...which he gets no help- he also presents no 'aspergers' type behaviours at school so gets no help at all....i am soooooo fed up

mrsforgetful aspergers and dyspraxia overlap considerably. A lot of children with AS also have dyspraxia. My autistic son is very dyspraxic although it hasn't been officially diagnosed.

The best book on dyspraxia is Madelaine Portwood's developmental dyspraxia. She has a website (don;t have the address sorry). it;s in just about every library.

Another useful site is the "dyscovery centre" in cardiff (spelling is correct- again they have a website- I haven't got the address but you can find it through google). I think they accept NHS referrals and you can see them privately. For dyspraxia you really need to see an OT- but they are very thin on the ground. Most places you wait upt to 3 years for an OT appointment (we've got one after an 18 month wait, a friend who;s child has severe movement problems- she's in a wheelchair a lot of the time- has waited 5 years).

Hi everyone - Many thanks for all your help (once again !!!) I have just ordered the book 'The out of synch Child' - down at the local library, they said I should get it by the end of the week - can't wait to start reading it!!

dinosaur - wow my wee boy, sounds very similiar to yours!! Today, gosh I lost count of how many times, he deliberately in front of my slam dunked my DS2 (nine months old) Today, in Kindy he was on a huge mission - is was look out everyone, I am here to make trouble ( well thats what it looked like!!!) His support worker was with him there today, thank goodness - as he was in a very typical pushy, shovey mood !!!! I know my son is so much better when he has one on one in the kindy - but he will lose this support worker at the end of the year and only be entitled to one session per week out of five!!! Thanks again everyone for your help and listening skills!!!

Bagpipes, there are private OTs, I've got a couple of names and numbers. They were recommended by someone I trust but I have not used them as this area is not a great issue for my son. I suspect they are in London but I'm not sure. They may travel or be able to recommend someone nearer to you. I can post the details if you like.
Why is his 1:1 support being cut? That sounds very unreasonable. Start badgering that LEA!!

tahnks jimjams- have looked at the cardiff site and it looks great- decided that i am going to request in writing that the school make areferral to the ED PSYCH specifically to address my concerns that they are not meeting his needs in the areas that i believe dyspraxia affect- and i will ask them to reply in writing so if they refuse i will then make my request direct to the LEA- i had a look at the IPSEA site and they have some templates on there for letters to wend- so will start doing something instead of getting depressed again. I must admit at least by looking into the dyspraxia i have found some things which i believe the school should be able to do and therefore i can make some specific requests- whereas as his aspergers is fairly well manaaged- yet he is not reaching his targets (he is target very high because he is bright and believed to be 'capaable' of reaching these targets- as many aspie's are- however my understanding is thatthe school has a role to provide the 'support' to assist him achieve his potential.. and this is where even some '1 on 1 handwriting/art/PE help' would be of benefit- as these are the things that affect his self esteem and he cannot understand how he is age 6 with his writing and 8 with his comprehension/numeracy... yet spelling, reading, science and computers he's 13+ - which is great for a 9 year old...yet along with his brains comes the heightened insight that 'somethings not right' . Its almost like if he was struggling in everything he would probably accept it better- but when i try to praise him for what he is good at he just says 'but why do i write like a baby?'- if we get some specific help for the dyspraxia then he may well then be able to learn to ride his bike,go up a slide,use the apparatus at school more fully,tie laces,drink from an open beaker,cut up food effectively,get dressed without so much help,brush his teeth,and not react so baddly to having his hair and nails cut....these are all pretty minor things but to a lad who is 'aware' of all this it is very distresing when he has these issues

mrsforgetful- he should be able to access things like a laptop if necessary. An assessment is important (a private assessment may be better than one provided by the LEA- where the ed psychs seem to have one ye on the budget) why not ring the dyscovery centre for advice?

Thanks Davros - but as I am not the UK, Scotland Ireland etc.. I'm way over here in New Zealand - we do things so much differently. We were lucky to get 2 sessions a week as support for him, while in kindy - but I have fought hard to get the 2 sessions continued until the end of the year. I know next year, he'll only be entitled to one session ( 2.5hrs per week) School support from the age of 5+ is difficult - as children with high needs, are lucky at the maximum to get 15hours per week (leaving 15 hours with no support) I just hope we can get the maximum - of 15hours when he does start school!!! Thanks again PS: Just one other question - with sensory issues - does this also include having or suffering from Depth Perception???? My DS1 can't for the life of him go down steps, or step over certain things?? Thanks

bagpipes- my ds1 has no depth perception. This has been picked up by a number of people. One big clue was that he found it hard to move from different surfaces- eg vinyl to carpet, carpet to wood, path to grass. He also tried to throw himself off high places!

We are working on this in a number of ways

1. Using a balance beam
2. Using stepping stones- things like card, carpet tiles, telephone directories- he has to step from one to another 3)put him in a swivel chair- turn one direction for 30 seconds, stop for 10 then the opposite direction for 30 seconds.

This is part of his BIBIC programme so we do it once a day. He's pretty good on the balance beam now.

We're also getting tinted glasses for him- I hope that will help!

hope you all don't mind me posting this here...but i'm having probs starting my own thread!

i was sent this by my australian penpal (for 23yrs) and she sent it for me bBEFORE my son was diagnosed- some of it's a bit naff- but if ever i feel irritated by my boys or i feel its all too much i read this- i've " " the bits which i feel apply to our 'special' children (WITH ALL THEIR FUNNY WAYS!).

TO MY SPECIAL CHILD:

Just for this morning, I am going to smile when I see your face and laugh when I feel like crying.

Just for this morning, I will let you choose what you want to wear, and smile and say how perfect it is.

Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.

Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.

Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.

Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.

Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.

Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.

Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys.

Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.

Just for this evening, I will let you splash in the tub and not get angry..

Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.

Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows..

Just for this evening when I run my finger through your hair as you sleep, I will simply be grateful that God has given me the greatest gift ever given.

I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.

And when I kiss you good night I will hold you a little tighter, a little longer. It is then, that I will thank God for you, and ask him for nothing, except one more day.............

Thanks - I've had an AWFUL meeting at the school today - needed a trigger to get me crying, and this has done the trick. I've been on the verge of it all evening, so it's quite a relief really..
I'll do as many of these things as I can tomorrow, and go and run my fingers through his hair a bit now..

Thanks Jimjams - yes, we do the balance beams and telephone books, and lots of little steps too. Also, we have to use a balloon - or soft blow up ball to get him to learn to reach to his left or right to catch the ball. But must admit, if he catches it directly infront of him - thats a huge milestone LOL. We are trying to get him to ride a trike - taking a long time, for sure - and he only tries and uses the pedals when he feels like it - NOT very often at the moment. I guess steering the trike will be another issue though!!!
I know I have raved on and on lately here - but I guess I am just wondering - does anyone know how much more difficult it is to help a Down syndrome child with "ISSUES!!" compared to other children. By that I mean - at the end of the day, all the specialists etc.. still say he is mentally retarded ( I think he is quicker and brighter than my 9yr DD!!) I am thinking about what my psychologist said last week -(it was what all about the The Time Out) I felt she spoke of DS1 as if he was a so-called-normal kid!!!Heck I am making any sense here tonight!!! I think I am wanting to know - should my DS1 situations, be treated, handled differently etc... compared to say for EG: Normal 4yr old???? or other children who have other disabilities???? My Support worker - made the comment - Gosh, he wouldn't or couldn't answer you re:the time out thingee!!! So, to sound so..so... so... boring!!!
PS: mrsforgetful - loved that insert tonight - boy just what I needed, rough day here too - lovely "bowel motion problems" smeared everywhere today

my ds1 has driven me mad today- and i almost forced him to shut himself in his room and demand he play the playstation!this is a reversal in the way things normaly are as i usually have to 'extract' him from his room!he seemed very hyper straight away and decided to play with his two younger brothers- this ended up with him 'ramping' hot wheels cars the wrong way up the toy garage slope so they were hitting the ceiling- meanwhile my ds2 was 'reacting' badly to the fact that ds1 was using his cars and not playing 'properly' with them, and ds3 was trying to use the garage in the way it was designed....well.....i weathered it- i wanted to see how things panned out- the first to withdraw was ds1 (thank god- he got hurt and said it was too dangerous) then ds2 and 3 carried on till 3 got bored - ds2 then went back to bionacle lego which i reckon he's played with for 7 or 8 hours today- he's only been up 10 hours- does that class as obssessive play!

just thought i would let you know how much these threads help - in real life for people who have no contact with autism or aspergers.

someone put in a housing application and i ovrheard a housing officer saying to her assistant" whats aspergers" as someone had put on their application that their child has aspergers... and i could give a bit of a brief. thanks to you lot!

and CUSTARDO= thankyou for being interested enough to care- most of us have family and friends who wouldn't dream of reading these threads!!! Thanks!