My 5 Year Old Has Aspergers and ADHD

Discussion in 'General Parenting' started by BellyKate, Dec 6, 2007.

  1. BellyKate

    BellyKate New Member

    Hi there.

    My daughter was formally diagnosed with Aspergers and ADHD by a child psychiatric this week. She's 5 and a half. Both are mild. Thank god... I'd hate to see extreme hehe !

    I wasn't surprised but he has left me to research about it all myself and teach myself behavioural strategies. I can contact him if things don't seem to be working. I find this a little odd. I kind of feel like a boat without sails... or life jackets ! Researching and learning about it is no problem, I'm used to dealing with this stuff on my own. I was a nanny for a boy with ADHD for 4 years so that has helped a lot.

    Also, at the very end of our appointment he said "This diagnosis could change with time"... do you think that sounds right, or like him covering himself ?

    The more I have read the more I am sure she has ADHD. It describes her so well. I'm not convinced about Aspergers though.

    She is starting big school next year and I have all but decided not to notify her school about it yet. I know they will be discreet and be ready to help her if I tell them, but I kind of just want to see how she goes first. She has a high IQ and that real insatiable hunger to learn. I realise her other traits could get in the way of that but I just want to give her a go without the label. Her behaviour at pre-school has been the opposite to at home. I know often that changes when kids get to school. Anyone have any thoughts on not notifying the school yet ??

    Getting this diagnosis has been very liberating for me. I have always known there was something "different" about my girl, have struggled for years with people telling me it is my fault ~ including the child psychiatric when she was 3. I carried around this pain in my heart for the last 2 years thinking it was all my fault. And it is so liberating to have a direction to head in.

    So much in my head right now... will end this post here for now.

    Thanks.
     
  2. TerryJ2

    TerryJ2 Well-Known Member

    Yeah, it's a little like going to a surgeon. Once the surgery is over, you're on your own.
    Sigh.
    There are lots of good books out there on Asperger's. The behavior strategies work for lots of diff issues, as well, especially the impatience that comes with-ADHD.
    Also, The Out of Sync Child is good, as well as The Explosive Child.
    Good luck! Keep posting ... lots of people here have aspies and ADHD kids and we can all help one another.
     
  3. saman

    saman New Member

    Here's my opinion on not notifying the school...don't do that! If you can get the ball rolling for an IEP for her for behavior purposes, get on that right away. That's what we're dealing with right now and for the same reasons. We were honest with the school ONLY for teacher placement, but we didn't want anything 'special' or labeling going in...well, now we're middle of the year and JUST getting the IEP truly rolling. It's takes a LONG time.

    I always look at it this way...the label stinks, I agree. Not my kid, etc etc. BUT, if the child can benefit from the label and receive services from the get go...they have a better chance. Parker struggles daily with behavior, calls from the principal, emails from the teacher. And I truly believe that once we at least have some pieces of the IEP in place that things will get better. So I kick myself daily for not doing this sooner...we knew. But we wanted him to have a 'do over' so to speak...but it didn't work. We hoped for the best...but the reality is that these kids just have such a hard time focusing and keeping to themselves that if you wait, she could just end up struggling and not liking school because of all the challenges.

    I guess, I'm living the whole "We don't want him labeled, give him a fresh start" scenario..and it's just not working for us! It takes 6 weeks of interventions even before your first meeting! Then, 30 SCHOOL DAYS (not calendar) that they have to do the testing in...so with the holidays now, we're looking at like end of January before his testing is done...THEN they write and implement the IEP (with me, of course)...so he MIGHT have an IEP at the end of MARCH...2 months left of school. And we started this at the 6 week parent teacher conferences...so only a month and a half into school.

    Sorry so long...I guess, just think about it!

    And welcome! :smile:
     
  4. trinityroyal

    trinityroyal Well-Known Member

    I agree with Saman. If the labels will help you to get the right sorts of interventions for your child, then you're probably better off to let the school know even if you're uncomfortable with them.

    I would also recommend checking out the Special Education forum on this site. They have some wonderful resources and ideas about dealing with the school system, getting your IEP in place, etc.

    My difficult child has Asperger's and ADHD. When he first received a diagnosis of autism at 5, we were grateful to have a place to start. We were able to start getting interventions for him in school and in extracurricular programs.

    He's not perfect by any means, but the earlier you start with interventions, the better the outcome for kids with Aspergers and ADHD.

    With regard to the psychiatrist, yes that does sound a bit weird. Almost as though he's trying to cover his bases in case he's wrong, or that he feels out of his depth in treating Aspergers, and yet is afraid to say so.

    Best of luck
    Trinity
     
  5. whateveryousay2007

    whateveryousay2007 New Member

    I'm with everyone else....I'd notify the school. I'm in the process of getting my difficult child the Occupational Therapist (OT) he needs. He started having problems in kindergarten and he's in the 3rd grade now. Better to do it before it becomes a problem.

    Something about school triggers ADD/ADHD & Aspie kids. It could be the stress. Mine acts differently at home than school too. I've noticed that mine becomes more aggitated with the noise that is involved with school. His sensory issues are part of the Aspie situation. If they have a program or watch a loud movie at school he'll call me crying wanting to come home. They deal with stress differently than we do.
     
  6. Mrs Smith

    Mrs Smith New Member

    Unfortunately, she's going to get labeled whether you want her to or not - it's human nature... only the label will be bad or spoiled or worse. My experience is the more you educate them in advance, the better the chances your child will be understood and treated fairly.
     
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I notice the spelling (ie behaviour)--are you outside the US? In the US, it helps A LOT to get the label because Aspies need interventions. Aspergers is a form of autism (and ADHD is often diagnosed when it's Autism Spectrum Disorders (ASD)). If so, your child will need the interventions that the school has to offer to help her succeed later in life. As one with a fourteen year old mildly on the spectrum, I can tell you that the differences become more obvious as they get older. I don't know where my son would be if he hadn't had interventions. However, if you're not in the US, I don't know how that works.
    Welcome to the board :smile:
     
  8. Jere

    Jere New Member

    Once you do tell the school do it in writing. The schools (depending on where you live)have up to 45 days to get an IEP in place. Just an FYI...
     
  9. Marguerite

    Marguerite Active Member

    Welcome aboard, Kate. From one mother to another, with similar kids (check out my sig).

    If you're not comfortable with letting us know which side of the Atlantic or which hemisphere you're in, that's OK. From my own observations i think the answer to this is the same regardless.

    Tell the school.

    Do it formally, give them a copy of any documentation (letter from specialist?) and ask for a meeting ASAP to set up a meeting with the school, to put support in place.

    You mention "she is starting big school next year" which also tells me you could be from somewhere that the school year runs from January to December (so much more sensible!). If so, then get in touch with the intended school NOW, you only have two weeks left to put something in place. By now they may have an idea of who her teacher would be next year, you need to have a sit-down meeting with that teacher NOW. Not only to give the teacher a heads up of what to expect, but also to give YOU a 'feel' for what the teacher is like, if you think your daughter will have the right person for her.

    Josie also said it well - don't worry about labelling your child. If you sit on the info and keep it quiet, she will still get labelled. Kids and teachers hand out labels (in their own heads) based on their experiences of a person. "The blonde kid", "the brat", "the problem child," "the blue-eyed terror" and so on. Chances are that even without a formal diagnosis, your child is going to get a label along the lines of "the fidget", "the talker", or commonly, "the professor". difficult child 3 is "the weird kid" and currently, "Harry Pot-Smoker" because he looks a lot like Harry Potter, the local kids know he hates being called that, and to change the name around is fun for these kids especially if they think it will upset him.

    This is going to happen. If there is some mitigating circumstance that can hep to take the heat off your child, as well as help to give her some support in developing coping skills to handle this, then use it.

    You will also find, label or not - like attracts like. Weird kids befriend weird kids. And often they make very good friends. There is nobody quite so loyal or forgiving as an Aspie. They seem to recognise kindred spirits and gravitate together. I've learned to love the weirdos who visit our house, to value what they have done for difficult child 1 and to see how helping his friends has made him a better person. We're still on that journey with difficult child 3.

    Do get your hands on "The Explosive Child". Also, try to get the teacher next year onto it as well. Also, consider using a communications book (or some other form of daily communication) to remove the need for daily classroom step conferences. it's easier on the teacher and easier on you. But you will need that level of communication, even if she is only mild.

    As for "losing the diagnosis" when she's older - part of that may have been to comfort you and part of that is a distortion of the real truth - she is who and what she is. She always will be. HOWEVER - as she gets older, wiser and more informed, she will be constantly learning how best to 'blend in' - difficult child 3 calls it "pretending to be normal". He's getting very good at it. For now, a lot of his mannerisms and behaviours are modelled on adults around him and not children, because he knows in his own mind that adults are his benchmark for the majority of his life. As a result, the "little professor" and "little dictator" sides of him are to the fore. These behaviours would seem normal in an adult; very odd in a child. I'm increasingly certain he's modelling his father! But then, we think husband is Aspie as well.

    An Aspie who seems to blend in well - yes, they can lose the diagnosis but I feel this is being unfair to them. To maintain a semblance of normality is to devalue the constant effort they are putting in. Also it is a big strain on them and the sense of being apart from everyone else can make them feel very lonely and unhappy. You need to watch for this, regardless of the status of diagnosis (lost, or not).

    It's scary right now, but despite all the problems I am very glad of my Aspie kids. I sometimes wonder what normality would be like, and wonder if i would be bored.

    Marg
     
  10. BellyKate

    BellyKate New Member

    Hi again.

    Thank you all of for your input !

    I contacted the school today and will have an appointment with them next week.

    I'm in Australia... 4 or so hours north of Sydney.

    I have really gotten a lot from The Explosive Child. I borrowed it from the library and am going to get the local book shop to order it in for me.

    From what I have read about ADHD I have decided to go for the softer approach with her. For years I have tried so many things and really have ended up caught in that terrible "death roll" with her, both of us struggling to "win". It is such a trap, to want them to acknowledge that you are the boss ("You're not the boss, mum, I am !!" heard that a million times !) and so I have ended up pulling her up on every raspberry she blows, every time she sarcastically blurts out "blah blah blah" when I am talking to her, every time she ignores my request for her to do something. I realise it isn't getting anywhere, have tried to ignore, ended up getting tough again... mostly due to other's opinions. I've decided to ignore the majority of stuff, have one or 2 things I am willing to go through a meltdown over, and a few more things I will compromise over. The thing is, she is insatiable. She wants more and more of everything, flits from thing to thing, wants things at times when it is impossible for me to allow them or give them to her ie. at bedtime she wants to go play with 2 older girls who live in our street. She becomes one-eyed ! She must have these things or the world really feels like it will end.

    She is incredibly explosive. In the last 2 months she has made holes in the walls, and attacked me in a fit of temper which resulted in me losing half a toe nail (painful!). We have almost daily nuclear reactor meltdowns. She hates to be in the car to drive 20 minutes to her grandparents ~ that has really become a horrible thing for her. The list is long but I am sure you have all heard it before. I have been following the Explosive Child but quite often she will erupt with no warning. I will ask her how she is today or something harmless like that, and she will become a hurricane instantly.

    I have a lot to learn.

    A few questions about Aspergers for anyone who has read this far, please...

    She has no problem AT ALL with eye conduct but socially she shows lack of empathy (ie. has locked children in her room because she didn't want them to stop playing with her, even though the child at the time was hyterically crying and distraught), she has to be in total control of whatever is being played, even down to how the other people playing must say things and what they must say, she still misunderstands when people are joking or being playful with her but not always... it seems to be at unpredictable times. Have trained my father to wink at her when he is joking about with her and this helps a lot. She still puts absolutely everything into her mouth and has been to the emergency ward twice this year for swallowing things. Many, many times a day I have to tell her to take things out of her mouth. She should have outgrown this now. I believe this is called sensation seeking and the psychiatric thinks she does it because it's calming. She has a few main interests but she also shows fleeting interest in loads of things... she can't get enough info about everything ! But her main interests are Bindi Irwin and doing all of her dance routines and songs, even down to imitating her voice perfectly. We all have to play this Bindi "game" a lot. Anything Bindi says, my daughter becomes obsessed with. I always thought this was normal for a girl her age. Maybe it is. I just don't know. Her other interests mostly stem from what she has watched of Bindi. Saving Wales. Dolphins.

    I am really confused... does this sound like Aspergers ?? I realise you guys aren't really qualified to diagnose (or maybe some of you are :)) but it seems you have a lot more experience and knowledge in these things than I do. Everything I have read of ADHD describes her almost perfectly. Could the above things I've mentioned be ADHD and not Aspergers ? I'm really just after some opinions, please. Just being able to communicate with you all like this is a little piece of sanity ! Thank you !
     
  11. Marguerite

    Marguerite Active Member

    Hi again, Kate -

    You said, "She has no problem AT ALL with eye conduct but socially she shows lack of empathy..." this sounds a lot like difficult child 3. Despite a diagnosis of autism (he scores moderate, too, further down from mild) he actually makes good eye contact even with strangers. Not always, but often enough to be confusing to people. Plus, he's always been very outgoing, will divulge intimate family secrets to total strangers. Has no concept of stranger danger, because once someone knows his name (and all they have to do is ask him) then they are no longer strangers!

    The lack of empathy - it takes time. And it is stemming from her lack of theory of mind. difficult child 3 is acquiring theory of mind, he passes the tests now mostly. They DO get there. But for her still (she IS only 5!) she can't understand that her own thoughts aren't an open book for everyone, and can't see that anybody else feels any different to her. A strong suggestion - do not leave her alone in play, and try to organise play so with friends, it is structured. Unstructured, unsupervised play is where problems arise. Maybe next time have a cooking session with all the girls in the kitchen? Then sit down together to watch a movie, eating what they cooked.

    To learn empathy (and other social skills) - everybody has to learn this but most kids pick it up by osmosis. Just being around others, it rubs off. But not with Aspies and Autism Spectrum Disorders (ASD) kids, they need to be taught social skills in the same way you would teach geography. Social stories are a good way at this age. I used photo albums, or you can get from the supermarket those presentation folders, then put something together on the computer with text and photos, then print it off. As the stories change, you change the pages in the folder.

    Getting her to see some sort of facial expression as a cue to "That's a joke, Joyce" is very good technique (knowing you're an Aussie means I can use that reference and know you understand!).

    You have a lot of work ahead of you but you're off to a good start.

    Basket A - keep it VERY limited, the book makes it clear that Basket A should only contain immediate safety (such as grabbing her if she's about to run onto the road in front of a truck) and school attendance.

    You also said, in reference to her oral fixation, that "she should have grown out of that by now."
    You need to learn to not use that phrase. "By now" is not applicable with autism and Asperger's. They will adapt when they're darn well good and ready, you can't force it at all.

    The mimicry - yep, a big part of it. A great talent to be able to use, and one she is using more than perhaps you realise.

    If you want to have a look for yourself at aspects of Pervasive Developmental Disorder (PDD) (Pervasive Developmental Disorder; an umbrella label which includes Asperger's and autism) then visit http://www.childbrain.com and look for their Pervasive Developmental Disorder (PDD) questionnaire. It's not official, you can use it to give you a 'feel' for how she really is. But from what you describe - sounds like my kids, well and truly. difficult child 1 is obsessed with birds of prey, he was working as a zoo volunteer. The only reason he's backed off from that at the moment is he's caught up in a church which has convinced him that evolution theory is in conflict with Christianity (not how we raised him) and so has had to 'bury' this part of his interest, for fear of having to THINK about the conflict between his beliefs and his obsessions.

    I think "Explosive Child" works as well as it does with a lot of Aspies, because it allows them control and this seems to be something they crave. The world is a confusing, scary place and the more control they can have, the more they can predict what is happening (they need to know) and the calmer they feel. Also, it lets them explore their favourite things, their pet topics.

    Let her flit from idea to idea; she is finding her own way of learning. Every kid is different; ours more so. You know how they advise you to break tasks up into manageable pieces? It doesn't work that way for difficult child 3, he needs to see the whole topic spread out before him, like the view of a landscape from the top of a mountain. Until he sees it that way, he can't recognise the smaller pieces. For him, it's like trying to do a jigsaw puzzle without having access to the picture on the box. It's just how HE learns.

    You said 4 hours north of Sydney - if it's anywhere on the coast, I know it well. I have family from Sydney to Brisbane, spent a lot of time over the years with family in Port, Coffs & Woolgoolga. Heading south for Christmas this year for a few days, need to head back north some time, probably will after easy child moves from Canberra to Newcastle for a few months. Will happily chat if you want to - PM me for phone number. We try to keep identity details as confidential as possible here, because that way if we need to whinge about the school, or about anybody who is likely to be lurking for our posts, we can do it in total confidence that it can't be used against us. I needed to have a big whine about our local Regional Office and because I can't be Googled here (name changes, etc) I felt totally free to let 'er rip!

    Keep reading, by Monday you should be even further through the book.

    Re ordering a copy - I had trouble, the publisher is one who apparently isn't all that reliable in linking in with a lot of Aussie book firms. Or it might have been that I was trying to order the book just as the 2nd edition came out. It's up to a third edition now, apparently. husband was recommending it to a forum of dads of autistic/Aspie kids the other night, he did some advance research.

    Marg
     
  12. BellyKate

    BellyKate New Member

    Thanks Marguerite.

    "Plus, he's always been very outgoing, will divulge intimate family secrets to total strangers. Has no concept of stranger danger, because once someone knows his name (and all they have to do is ask him) then they are no longer strangers!"

    ~ My daughter also has no concept of stranger danger, she is extremely outgoing, and craves social interaction. If a car pulls up outside of our house, she is out the front door calling "hellooooo". It worries me constantly. People are always impressed by her friendliness.

    I have noticed prior to all of this that she mimics people very well. Also animals hehe. In particular she mimics older girls (especially one of the girls who lives in our street)and I recognise who she is imitating straight away. Also, another girl at her pre-school. In fact, it seems most of the time she is using the voice of the girl from pre-school.

    I did the Pervasive Developmental Disorder (PDD) questionnaire and she got a score of 60, with no speech or language delay. So, it is mild. I wonder if there are any sites that offer info on kids with ADHD and Aspergers combined.

    Thanks for taking the time to help me !
     
  13. Marguerite

    Marguerite Active Member

    Kate, make contact with ASPECT. They have an outreach program which helps schools, although I'm not sure how much help they can give outside Sydney metropolitan. If you're near a major country centre there should be some sort of help available.

    I'll ask around, as I said I have family up and down the coast. There should be help available in Newcastle, Port, Coffs, Armidale, maybe Grafton, possibly Lismore. Certainly Brisbane, but that's probably too far for you. I know my sister in Port has links with various support networks. Her granddaughter is currently being checked out for AS with possible ADHD.

    Something for you to also check out - Australia's own gift to the world of Asperger's & autism, Dr Tony Attwood. Reading his stuff will give you hope.

    If you're far enough out of town to be living with space around you (as in farming) or in a small community, this could be an advantage for you. A lot of Aspies can slip under the radar outback. I suspect father in law was Aspie, he grew up on a sheep station. Always fixing things.

    Back to your daughter - things that may help: explain to her about Asperger's and ADHD. We were advised to do this for difficult child 3 as soon as he was able to understand. He was 8 before he could grasp it. As a computer nerd, we explained autism as follows: if you type a word processing document up, format it and print it out, what comes off the printer can look identical to a similar document typed up on a Mac, or a easy child. The output at the printer is the same. But the software needed, to tell the computer exactly how to interpret the operator's instructions and interact with the peripherals has to be written very differently, in order to properly program the Mac, or the easy child.
    Some people have mac brains, others have easy child brains. They are capable of the same quality of output but in order to do this, need different programming. We learn in different ways.

    The emphasis is on "different", not good or bad. Not flawed, damaged, faulty or unacceptable - just different. We each have to find what works for us.

    And one last thought to hold on to - when people try to cram a different child into the same box as other people (based on "you should have grown out of that by now" or "I've told you several times, you should be able to remember it now" or "Katie can do it properly, so should you be able to" or similar), that is when we are trying to have our computer produce quality output with the wrong software package.

    To punish such a child for failing to give us what we want under these circumstances is like punishing a blind child for failing to copy accurately from the blackboard. Unthinkable - and yet people do it, because Asperger's and ADHD are invisible disorders, they also can be disbelieved by some old hands. "Oh, it's just a handy diagnosis for kids with rich parents who are trying to buy their way out of responsibility."

    If the school you're sending her to next year is a small one, you could be lucky or you could be unlucky.

    Something to watch for - Family Advocacy. They will help with advice and go to bat for you, but their main aim is for inclusion at all costs - they feel that all disabled people have a right to be included when they choose to be (fair enough) but they then campaign against anything which is setting apart kids with disabilities; for example, a campaign I had recently, for a high school Special Needs class (Special Education - it's NOT just for kids who aren't bright) set in a mainstream high school, specifically for kid with Asperger's & high-functioning autism. Family Advocacy saw this as a retrograde step, I argued it was actually proactive, because the classroom environment is NOT a natural social environment for kids with autism (I include Asperger's here too). Kids with autism cannot pick up social skills simply be being around other kids. If anything, they will pick up the anarchy and bad habits, often causing more problems.
    Use Family Advocacy if what you need is in their agenda - they are good that way - but if you're asking for anything resembling different and separate treatment, they may be sticky on it.

    difficult child 3 has a good friend with autism who is still in mainstream and seems to be doing OK. We are glad he is doing OK, while this continues then mainstream is an appropriate placement. But it generally doesn't continue, for kids with autism. They get to a certain point and stop being able to learn the same things at the same rate. They will need help at some stage, in order to continue to fit in. They need to find their own learning strategy.

    Too often, the attitude is, "Oh, she is bright so we don't need to worry about giving her remedial help in English; she understands, she will catch up, she's probably just being lazy." Or, "He's doing OK overall; his brilliant maths mark balances out the poor marks in geography." Or you get teachers who will find any way at all to get your child thrown out of THEIR school so they can become Someone Else's Problem - "Did you know David has Asperger's? I've heard they can be dangerous - and you notice how he won't look you in the eye? He's clearly hiding something." Of what we got - "difficult child 1 didn't mean any harm this time, but who knows about next time? He might go totally strange." Of when we were trying to get easy child 2/difficult child 2 into school - "What about the history of mental instability in the family?" (they were apparently referring to difficult child 1's diagnosis of ADHD - the Asperger's was at that time undiagnosed). difficult child 1's best friend, another Aspie, was told, "We don't want you back next year." At the end of Year 11 - no reason given to him. We finally worked out the reason and it was a grave injustice, it was a combination of a misunderstanding which was used to justify the teacher's fear of him due to his lack of emotion in his face, lack of eye contact and at times odd, obsessive behaviour.

    These things happen, over and over. They should not happen, there is legislation. So often though, the child and the family are so overstretched and mentally exhausted that there is no fight in them. Or they follow the principle of,"The teacher is trained to know these things; I'm only a housewife/farmer/secretary. I have to defer to greater knowledge."

    I hope things go smoothly for you. I have found that younger teachers in our system do seem to have more understanding and more willingness to work with you to help your child. Not all the older ones are waiting for retirement, either. You can find gems of any age. You can also find ratbags of any age. I found the golden rules were "communication and cooperation". You and the child are important parts of the Learning Team. When the school says they are having a Learning Team meeting, be there. And not just as an observer. In fact, a lot of the paperwork (such as the funding) YOU must sign off on, to indicate that you are happy with what has been decided.

    Have confidence in yourself in your role as Learning Team member. You have a right to this, you are the parent with intimate knowledge of the child's behaviour, needs, triggers and talents. And in doing this, you will be working hand in hand with the school - if you can work as a team, you ALL will win because THEY will gain knowledge and skills they may not have had before. Your child will win because her education will be more individualised and carefully supervised. And you will win because your child will be happier, will learn better and make life easier at home.

    We've had a lot of successes, we've had some failures and a great many battles. I live in a small village with teachers of my children living nearby. We meet when they walk the dog, when they do their shopping, when we go to the park. We chat. We are friendly. Even if I think they are negligent idiots as teachers and they probably label me as "pushy know-it-all", we have been able to work together. And those that I label "salt of the earth" will stop me and ask how difficult child 3 is getting on. And the other kids.

    I haven't held back from saying what I think at times but I always tried to stay polite. Therefore despite my standing my ground for my child, I am still friends with staff at the school.

    It can be done.

    I've also been led to believe that our local school here is one of the worst, when it comes to the problems we have had. I wish for you the best, the absolute best. If you are near any of the main regional centres up the coat that I have named, you should be OK. Armidale, too. In a lot of areas the country is better than some of the older, backwater metropolitan schools. And even a difficult school will come round to your way of thinking if the law says so and you give theme no choice. And if it is right, they will embrace it.

    There are so many options around now - we need more, but things are so much better.

    Your daughter sounds lovely. She also sounds like my difficult child 3. We had to put up a fence to stop him wandering, he didn't respond to hearing his name because he didn't know about names back then! A lot better by 5 and you really wouldn't know, now, that there was ever any language delay. Now, he won't shut up! And he's learning to tell jokes!

    Marg
     
  14. BellyKate

    BellyKate New Member

    Thanks, Marguerite, for all of your advice and info !!

    We've had yet another bad day. Tonight, I felt I can't take this anymore, but I have to.

    She had her worst meltdown yet. Another dent in a wall, threatening to kill me, screaming ~ like she is possessed ~ that she wants me to die. Throwing things at me. Smashing things. It went on for over an hour altogether. I don't know how to keep coping. I'm very emotional right now. I'm sure tomorrow I will feel stronger, but right now I feel like collapsing into a heap. But I can't. And I don't have anyone to talk to or any support.

    I don't know what to do or how to keep doing this. I'm sorry for being so dramatic. I feel like a mess.
     
  15. Marguerite

    Marguerite Active Member

    The extend of the raging, the severity of it all, is an indication of how desperately frustrated and distraught she is feeling. Not that this excuses the behaviour, but if you understand the depths of her despair, it makes it easier for you to help her.

    When they're raging, it's too late. You can't do a thing then except wait it out. What you need (where possible, and it takes a little time and a lot of patience) is to help her head off the rages.

    What triggered tonight's meltdown? You've not said what, but I'm going to guess - you stopped her having or doing something she had her heart set on, something she had told herself she was going to get. It might have been a takeaway meal, it might have been a game she was playing, a TV show she was either watching or wanting to watch - you came along and changed the expectations. (I'm not saying you did the wrong thing, only that for her, you were the reason she didn't get what she was expecting).
    As a result, she gets angry with you, because you are the cause (in her eyes).

    I'm going to have another guess here - I'm going to guess that you wanted compliance NOW. This is another major and common trigger. And they are worse, much worse, at the end of a day and when they are extra tired.

    But what can you do? You have to teach them compliance, you have to teach them to follow rules, or you will become slave to the child.

    It can be done. At first it does seem like you are spoiling the child, but it's not (if you do it right). You need to keep the thought in your mind, she needs extra help transitioning from one task to another, and in changing her expectations.

    I'll give you some examples - today we were out nearly all day. Unless you live in a regional centre or major city, you will be like us - you have a long drive to go to the regional centre and you make sure, when you DO go, that you get everything else done too while you can.
    So it was a long day today. difficult child 3 had to come along too.
    By the end of the day he was getting tired. He had his drama class performance, then he wanted a reward - a slurpee (like a snow cone in a big cup). I was too busy with a last minute errand to take time out to go get a slurpee so I had to say no.
    He is used to being permitted to have a slurpee most weeks after drama class, so his expectations were, "I will have a slurpee." Then here was I, suddenly changing things and destroying his expectations.

    He argued. "I'm thirsty, it's a hot day, I always have one, the place isn't far away..." you get the drift. Every time I drove further in the opposite direction there was an exasperated whine from his seat.
    But I'm lucky - he's now old enough to listen to a bit of reason. "I'm sorry, I just can't do it today, we have had unexpected changes to our plans and I have to hurry across the next few suburbs to go fetch two people and bring them home. Tonight just isn't working out for you," I told him. "But we have to come back here tomorrow afternoon to see the pediatrician, we should have more time then to get a slurpee."

    This changed his distress at "no slurpee" to "maybe slurpee tomorrow" which lowers the anxiety metre enough for him to maintain control. By tomorrow he may have forgotten about it and not even ask for one. If he asks, and we have time and opportunity, I will happily buy him one.

    And because he knows I will buy him one if it is reasonable to do so, again his anxiety on the topic is reduced, and he becomes less frantic in his insistence.

    A lot of this boils down to anxiety. They get anxious that we will stymie all their fun, that WE are totally controlling every little thing in their life and they therefore can't prepare themselves mentally for what to expect. The reason our kids like to have control, is because this helps them not be taken by surprise.
    Example 2 - we are going to the town to the shopping complex. difficult child 3 is DESPERATE to come too. He doesn't say why (I can guess!) but simply says, "Oh, good."
    We arrive, but I drive right past the shopping centre and park at the medical centre. he begins to get frantic. "You drove the wrong way. This isn't the shopping complex - why are we here? Take me to the complex NOW!"
    "Why do you have to go to the shopping complex?" I ask him.
    "Because I need to see if they have [mentions some obscure computer game]."
    The entire time we are at the medical centre, he is frantic that I might decide to just go straight home afterwards and not go shopping after all. Of course, the more frantic he gets, the worse his behaviour, which would tempt any sane parent to change their minds and not go shopping - but this is the worst thing you could do, because you have just proved his fears to have merit; he was RIGHT to be anxious!
    What we do now - I assure him that we WILL go to the shopping complex and I WILL allow him to look for the game. If he feels safe in my assertion (ie if he trusts me) then he will calm down. Not completely maybe, but enough to not go into meltdown.

    When he was younger he would get frantic that the game would be in the shop, maybe at a big discount, and if we didn't buy it then it mightn't be there next time. So we instituted "family shop". This is where I buy it, but he can't have it until he has paid me for it (pocket money, or by doing extra chores, or both). Only one item at a time can be in the family shop except for exceptional circumstances (shop closing down sale, for example) and the item must be redeemed before he goes and buys anything else.
    This way he relaxes a bit, knowing that the game is safe from being purchased by someone else, but he is still motivated to earn the game.

    As a result, he's learned to shop around for the best price and to be careful about his choices (when younger, he would want everything he saw, he was a sucker for advertising).

    Example 3 - it's evening and time for difficult child 3's bath. I USED to say, "difficult child 3, turn off that computer game NOW and go have your bath."
    Failure to do what he was told would result in the game being turned off, which would often trigger a meltdown. The meltdown would then be punished with difficult child 3 being sent to his room, the tantrums would continue even louder and it would escalate until the bath went cold, dinner wasn't cooked and he fell asleep in total exhaustion. Next day he would be resentful, angry, sullen and uncooperative. And still not bathed.

    So we analysed what was happening - when playing a computer game (or drawing a picture, or doing homework, or reading a book) he needed time to prepare to change what he was doing. Even if he was doing something he didn't especially enjoy, he still needed time to change. With a computer game, for example, he needed to g et to a point where he could save the game. With reading a book, he wanted to get to the end of a chapter, or maybe the end of a paragraph. This is actually very logical.

    Here is how we solved the problem - "difficult child 3, your bath is ready. How long before you can stop what you are doing and go have your bath?"
    (by giving him some say, he has control - which he needs, to keep anxiety in check).
    difficult child 3 would reply, "I will be ready in five minutes, maybe a little less."
    So I would write the time on a post-it note with the word "bath", and stick it to the computer screen or his book (whatever was in his eye). Five minutes later if he was still not complying (and it's generally not naughtiness, regardless of what grandparents will tell you) then I would again draw his attention to it.
    "difficult child 3, I told you to have your bath, you said you would be ready by now. Stop what you are doing and go have your bath."
    Often, especially when we were getting started, he would get angry, indignant and insist I hadn't told him - this is where I could point to the post-it note.
    But I still gave a little leeway - we would sort out the best course of action as a team.
    "You have to have your bath or it will go cold. Can you pause your game? Or do you need just one more minute? If you say that one minute is enough, then you must let me shut it off if you are wrong and I know you don't want me to do that. So how about you save the game now, and shut if off yourself, or pause it and finish it when you have done what you were asked to do. You choose - but you must be in that bath as soon as possible."
    I delayed another five minutes, maybe ten, but after that difficult child 3 was in the bath in good humour, motivated to wash thoroughly but quickly (so he could finish his game properly). Far better than the long tantrum with poor outcome. And also much quicker. A small, considered delay is a lot faster often than insisting on immediate compliance.

    I have worded this at difficult child 3's current level, but if you can narrow down the options to two simple choices spelt out simply, then your child will feel more in control of the situation (this is NOT spoiling) and better able to comply, since you have shown her the way. You have narrowed down the choices to both comply with your requirements and to also meet her needs as well.

    The aim here is for her to learn, with repeated experience, that you are NOT there to make her life miserable, but she has certain responsibilities which, for the sake of the family and harmony, she must also do. She will learn that you are there to assist and not merely to be a nuisance and torment to her.

    They do learn these things fast. They learn bad behaviour fast; they learn ways out of it just as fast.

    When they are tired or hungry, compliance is reduced and anxiety is up. You will have more problems. This is why I keep food at the ready - good food, not snacky rubbish. Kids coming home from school and wanting to eat NOW - I had cooked sausages and fruit ready to serve in the fridge. The kids learned to raid this food and eat their fill. If it spoiled their appetites - so what? They had just snacked on what WAS to be their dinner. If they ate it at 5 pm instead of 8 pm, I was still happy. Too often, especially when they were younger, they would be too tired to eat if I made them wait until 8 pm. Then they would go to bed hungry and wake cranky far too early, dragging me out of bed to get their breakfast. Then I would be tired and cranky!

    I mentioned "The Explosive Child" - this is a fragment of what the book taught us. Not in specific detail, the book just laid the groundwork and made it possible for us to get this working, fast. There are specifics in the book but it is all able to be adapted to your family's routine.

    We're at the end of the year, we're all tired, it reduced the coping skills for ALL of us. That's when the wheels fall off. And the fall off for us too, we're by no means perfect. But the more times that it works positively for you, the more successes, the more it will continue to work well for you. It's a positive feedback loop all on its own. That's the really wonderful thing for us. And for you too.

    Sorry this is so long, but I hope it helped.

    Marg
     
  16. BellyKate

    BellyKate New Member

    Thank you, thank you ! And I'm grateful your reply is so long !

    The scenario: The 2 older girls from down the street were here playing this afternoon. These are the girls she worships and adores. They had asked yesterday if they could borrow Chitty Chitty Bang Bang from us. My daughter said yes but they forgot to take it. Today when they asked again she said NO ! I gently talked her into letting them take it for the night (ohhhh how I regret that!), and she reluctantly handed it to them. They left. Almost instantly she was in tears. She wanted Chitty Chitty back. I didn't realise it was going to get so out of control, so I calmly tried to distract and praise and remind her they would bring it back in the morning. Within seconds she was hysterical, hitting me, name calling "you stupid woman" etc etc. I had 2 voices in my head ... 1. Don't reward the bad behaviour by going and getting the dvd back and 2. Go get that dvd back now and this madness will instantly end. To complicate things, I was in the middle of cooking, and I also didn't want to ruin the older girl's fun by getting the dvd back. I felt embarrassed to go and ask for it back.

    My daughter has had 2 very late nights in a row, and a string of generally late nights for weeks due to her not being able to settle and sleep. I knew she was terribly tired, and I know tiredness makes atomic meltdowns more likely. As things progressed and walls were kicked, I really had an internal battle going on. I dug my heels in. She was hitting me and abusing me almost as soon as they were out the door with the dvd. I was completely confused about the right thing to do, and at the same time knowing that I need to make exceptions to the "normal" rules.

    In the end I went and got the dvd back and wished I had just done it instantly. I know I need to not worry about what other people think (I was worried what the girls and her parents would think) and I know I need to compromise more. If I look at it that way then that is something positive to come out of the whole thing ~ a huge reminder to compromise and let more things go, and that it is ok to unlearn a lot of the strategies I have tried over the years.

    It's just that she is so abusive and aggressive. I don't know how to handle that. But I guess it is about not letting it get to that point. It needs to be that I am on her side and not that we are in battle against each other. If I think of it in those terms then the moment she got upset about the dvd going I should have said "It's ok darling, we'll go ask for it back". But that is so hard when you feel abused and battered. I am like a broken record daily saying "if you say it nicely then you are more likely to get what you are asking for" and "I can't give you what you want when you speak to me like that". I then give her an example of the voice to use and a nicer way of saying it. From time to time she gets that. Mostly, she doesn't back down.

    There are other things going on within our family (the grandparents) which have been pretty disturbing for us all.

    You said: "This changed his distress at "no slurpee" to "maybe slurpee tomorrow". I am a big fan of "maybe" and "I'll think about it". This melts away her distress almost completely.

    Thank you so much for your reply. I need to try to get a hold of The Explosive Child again. I keep forgetting to use the strategies ~ stress levels here have been pretty high due to one thing or another, my patience is suffering as a result. I feel like an L-Plater, and sometimes I still feel pretty miserable that I have to deal with this stuff at all. But I have been dealing with it on my own for years. No matter how much we accept something we can still have moments where it all seems too much !
     
  17. Marguerite

    Marguerite Active Member

    It takes time and practice to get into the swing of it. Try doing what I did - write yourself a summary, as if you are writing it for her teacher next year. But choose a time when you're not quite so hassled - maybe between Christmas & New Year - when you can take the time to observe her, observe how she is with other people, take your own time to think and relax and then see how you go.

    baby steps. A little at a time. And remember, we have our hassles too, finding a better way doesn't magically make everything better. But when you finally have something in place that is working better, you do feel better and more confident. And this snowballs in a good way.

    You did what you felt was the right thing, getting the DVD back. And it probably WAS the right thing. But when you feel she CAN handle it, letting the girls borrow the DVD all night and having it returned safely in the morning is also a very positive lesson. "See? You did a kind thing by lending the DVD and the girls have brought it back safely."

    Another option for her, as a positive learning experience from this - see if you can find another copy of the DVD for her to buy the girls for Christmas (maybe next year, or birthday, or something). The essence of this lesson is, "This DVD makes you so happy, let's see if their own copy can make the girls happy too. Then there will be a lot more happiness around."

    Sharing doesn't always have to mean giving up something yourself. Especially if it's difficult (and this seems to be) another way to share something like a DVD or a CD is to buy a second copy to give away, or to sit with someone and play it for them. We sometimes have a movie session, where I make popcorn (I love those popcorn machines, they're great for this sort of thing) and we all sit and watch something together while sharing a big bowl of popcorn. Sharing popcorn too - easy, because it's so easy to make more.

    As for the abuse and aggression, it's not great. But if you can not react too much to it (not easy) WHILE SHE'S RAGING, you can get your lesson across at a time when she's more likely to be receptive.

    If you consider the raging, the hitting, the shouting to be her anxiety talking and don't take it to heart, then you're also not letting it distract you from the real issue, which is her fear and anxiety being the biggest problem here.
    Think of a person struggling to survive in the river, the water flowing fast and they've only just managed to catch hold of a branch. Someone swims out to the person with a rope but they are in such panic that they are too afraid to let go the branch to grab the rope. Some drowning people can struggle so much that they put the life of their rescuer in danger, as well as their own. They are not deliberately trying to drown themselves and their rescuer, they are just in such a panic that they are reacting out of blind terror, unable to reason or be reasoned with. This is very common with very young children, under the age of two. And with our kids - that immaturity in some areas continues fort a few more years. It depends on what areas of their functioning are affected, as well as how severely.

    Hang in there, don't take the raging personally but see it for what it is. You will be able to help her, when she is ready to learn and when she is not in such acute distress.

    Marg
     
  18. Mrs Smith

    Mrs Smith New Member

    Marg - you really should write a book - you totally get the autistic thought process and you articulate it so well! I had to laugh at the scenarios you presented. We've experienced every one of them over the years.

    I have to say, the hardest thing I've ever done was to change those ingrained parenting tactics that just don't work at all with someone on the spectrum. And isn't it ironic how the very skill we're trying to teach our aspies - flexibility - is the one thing parents don't model when they demand instant action. Nothing is more frustrating to an aspie than hypocracy.

    BellyKate - you really sound like you've got a handle on your daughter and I think you'll see a turnaround soon. Long term goals would be to teach her how to communicate her needs to others. Overall, society is pretty inflexible.
     
  19. Marguerite

    Marguerite Active Member

    Also, she's still only five. In autistic terms, this is still the two-year-old tantrum stage and it continues for a few more years but eases the more you can be flexible.

    A couple of kids at difficult child 3's drama class - they look like sisters but as one girl described it, "we are the bestest friends in the whole world." Read that as "only". Whatever their diagnosis, they SEEM to be Aspie.
    One girl hurt herself badly a few weeks ago, cutting her leg to the bone and needing an ambulance. Her friend was hysterical. No way would she leave her friend's side, but her distress was making her friend anxious and her mother didn't know what to do (eldest child; had never had to do this before). I got the anxious friend away by suggesting we make a cold compress for her with paper towel in the girl's toilet area. While I had her on my own I asked her why she was afraid. She said she was scared her friend would bleed to death. I then asked her, "Do you know how much blood is in your body?"
    She answered promptly with the correct answer - 5 Litres. I pointed out that for a child her size it would be closer to 3 Litres and then said, "I estimate she has lost maybe 30 ml at the most. And her mother is holding a t-shirt over the leg as a pressure bandage. This will stop the bleeding until the ambulance blokes get here and they will look after her from there. So the most she's lost is one hundredth of her blood, that's nothing to worry about at all. Her next drink of water will replace that volume. She will be fine."
    The whole conversation took the minute or so we took to wet down some folded paper towel and she dashed out to put that on her friend's forehead.

    Meanwhile her mother (friend's mother) couldn't stand the sight of blood, so when the ambulance fellas got there, she insisted her daughter leave her injured friend and come inside. The most amazing tantrum ensued, hysterics began in earnest which meant we HAD to get her away now, when frankly I felt she should have been permitted to stay. In the poor kid's mind, she must have been imagining all the horrifying arcane mysteries the ambulance men would do to her friend; she was scared she would never see her friend again. I was able to understand quickly that friend's mother was reacting from her own fear of fainting in front of her daughter, so I managed to get her to let her daughter watch from inside the glass doors, to see her injured friend joking with the ambulance blokes as they put a better compression bandage on the leg. The friend was permitted (by her mother - the ambos were OK with it) to come out to wave goodbye to her friend. By then the ambos had personally assured friend that everything was going to be OK, her friend would probably miss a few days of school but would probably be home later that night after her leg got stitched.
    Dragging the friend away at that point - the mother (who doesn't know about Ross Greene, despite my efforts!) would have put it as Basket A, where I felt Basket B was the place. And then Basket C. The friend might have screamed a bit when the ambos took off the t-shirt quickly to replace it with their own compression pad (the leg spurted a fair bit, the girl had hit an artery) but it was so quick that I suspect had the friend been watching, they would have shielded her with their own bodies or told her to change the compress or something.

    This is an example of how we each would do things differently. The mother was allowing her own fear and phobia to influence her even though she knew her insistence would provoke a meltdown. She was even critical of her daughter for the hysterics, although she clearly did understand a great deal. She seemed to be trying to use "You really shouldn't behave this way," as a shock tactic to get her behaviour under control. This was an extraordinary situation, and the mother was out of her depth on many levels. I think we all were, really.

    20:20 hindsight is a wonderful thing. We all learned some interesting lessons, and this mother most of all - her daughter, despite the hysterics, will put up with a great deal when it comes to helping a friend. The girl is strong. So is the girl who was injured, who was also concerned for her distressed friend. And they both came through the incidence positively, at the end. The injured girl will probably have a scar for life but it WILL fade. She was back at drama class two weeks later and was there last night with no ill effects participating at the final performance.

    Both lovely girls. The friend was too distressed to attend drama class that week, when her friend left in the ambulance she begged her mother to take her home because she was too upset. By that stage she was beginning to withdraw and hide behind her mother's skirts; the shock was setting in. I believe they talked on the phone later that night, which helped things calm down more.

    The other point from this - we sometimes have to make fast decisions and for a while, the decisions we make are the ones based on how we THINK we should be parenting, all based on how WE were raised. It takes time and practice to be able to make the changes to our methods. I think next time friend witnesses blood, she will be better equipped to cope (as long as her mother isn't around to try to drag her away and project her own phobias onto her daughter). And her mother I think now knows this and feels more confident in her own daughter's ability to handle things.

    It's not easy, when you see your child not able to do some things that other kids can. When I sit with a friend's child and hold a detailed conversation with her on politics, her favourite TV show, the latest book she has read - I feel sad, because difficult child 3 simply can't do this anywhere as well and for years could not at all. When this girl (same age as difficult child 3) first told me in detail about her favourite scene in the TV show she liked, difficult child 3 was still non-verbal. He would have watched the same TV show and not understood the action or the message, even though it was non-verbal. He could barely recognise that a TV show had people on it depicting what people do, he simply saw movement and focussed on what he could recognise on TV - letters and numbers. People were entirely incidental and didn't seem representative of anything in real life. A man or a dog - he wouldn't have recognised the difference, on TV.

    They take a lot more time, but they do make progress, long after people would think they could not.

    Marg
     
  20. Janna

    Janna New Member

    Wow, I love Marg, and there isn't anything I can add on the Autism topic LOL! LOL!

    Marg, I need to PM you, speaking of Autism....

    anyway - I wanted to touch on your original question of "can the diagnosis change?", because well, I think my son Dylan is the expert on changing diagnosis LOL!

    He started out at 3 years old with ADHD. Then ADHD, ODD. Then many different mood problem diagnosis (see profile), then in 2005 he was diagnosed with Bipolar Disorder. After 6 years I thought we finally had the answer. He was put on Lithium and Abilify, and did very well on that combo for some time.

    Then, the medications died. He crashed, again. My son has ALOT of the same traits as you mention of your daughter, and displays ALOT of eye contact, always.

    I put him into a residential treatment facility (he lives and goes to school there, it's a 10 month program) and they changed his diagnosis yet again. Pervasive Developmental Disorder (PDD)-not otherwise specified, a form of Autism, no longer Bipolar.

    As time has gone on I could have seen all the diagnosis he's been given. I thought I saw mania with the Bipolar. I believed "Intermittent Explosive Disorder" because he was explosive. I believed ADHD, and I believed ODD and I really thought, at one point or another, he was this or that, or whatever. And maybe he's a mix of all of them. Who knows?

    The Autism diagnosis for your daughter, if she is a true Aspie, will help her tremendously over time. Marg gave you all that. But I wanted you to know that yes, things can change. She is only 5. She is going to grow and mature and things that look one way now may not look that way when she's 11. There is no guarantee that because now she's diagnosed Asbergers that she will carry that diagnosis forever (but definately use the diagnosis now for interventions early!).
     
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