My son - the puzzle

[Salbaggio]

Does anyone mind if I just write it all down here and get the things that are whirling around in my head out there?

 

(Sorry guys but that was a retorical question as I am clearly just going to do it anyway! )

 

My 6yr old son still has not had a dx but we suspect Aspergers. He is such a puzzle to everyone though as his behaviour is very typically ASD but the extent to which he displays these "typical behaviours" is not great and by using a variety of skills suggested it is very much possible to "move him on" from things.

 

We went to see a Paeditrician (apologies for spelling!) and she was great, listened to me for ages, asked very insightful questions but concluded at the end that we need to observe him for longer for the aforementioned reasons, he displays all of the traits but in other ways in so very NOT on the Autistic spectrum.

 

Next week I am taking him to a SALT and goodness knows what will come of that.

 

We had a very bad day at home yesterday, he is worn out and very anxious over everything. I told him off for ignoring my 3 warnings to not come to near the hot oven and he had a mini meltdown. A minute later he came back and informed me that sometimes he wishes he had a different family. I was tired and stressed and it really got to me, when his Dad made him apologise for hurting my feelings he then had another meltdown over his remorse!

 

He has been at home today and swinging wildly between almost a depressed like state and, when I got him out in the garden for some fresh air, he was a different child again elated and healthy looking.

 

Apologies for the incoherent nature of this but I really just needed to jot some things down.

 

I guess I just want to be given a definate dx one way or the other, to know why he is like he is and what he can and can not control about himself.

[frogslegs]

Don't worry about incoherence, we are all going through it! I think all children who have Aspergers are different and seem to show 'symptoms' in different ways. It took 10 years for my son to be diagnosed because he had signs, but not that strong, even though when you put the 'signs' together it is pretty obvious that he has aspergers. Touch wood these days he is pretty calm. This is thanks to two things. One : there is a wonderful woman attached to the school who is there to listen to the children who have problems and teach them to relax (breathing exercises, relaxation 'journeys') and to get rid of anxiety (he still listens to those CDs if things are bad) and because he swims four times a week and he puts all his anger into that. Before that we went through a very very bad period when he was in year 2 when he was ostracised by all the other boys for being 'funny'. He kept washing his hands, telling me he wanted to die, that he hated his life, having major meltdowns usually after school. He was extremely angry and frustrated with his situation and to me was showing signs of depression. He needed a lot of reassurance and love and to be made a 'winner' again.

I would not take what he says personnally. Maybe what your son is saying is his way to express this frustration because he can't vocalise what is really going on. Is there anything physical that he likes doing? Martial art, swimming.. to get his negative energy out?

Also in my experience this stress affects the whole family and there are times when we need to take time out. He is going to camp for a few days at Easter and really I need it to recharge my batteries and for the rest of the family to take a breather as the amount of attention he needs is incredible, so one piece of advice: don't forget to look after yourself and the rest of the family.

Take good care,

Mel <'> <'> <'>

 

[Salbaggio]

Thanks Mel

 

He is just so exhausting, mentally and emotionally, but then he can have a really smooth patch which might last for weeks. If you asked me how he was then I would tell you that he was no bother at all and not a challenging child!

 

It is as though his anxiety goes in massive peaks and troughs, do you find that? He will be fine and "normal" for weeks then stressed and agitated for weeks. I think we are hitting a peak at the moment.

 

When I went to post on here I realised that I hadn't posted at all THIS YEAR!!! I think that sums up how he is; when he is fine, the coping strategies work and we manage situations just fine. When he starts to get stressy though it seems to be for an equally long period of time and I need a little reassurance that it will all level out again at some point (or rather that I will be able to cope again!)

 

Actually having written that and bearing in mind the previous comment, I wonder if actually he is the same all of the time but that I just cope in peaks and troughs? Perhaps he feeds off my stress when I am not coping with him so well? Hmmmmm food for thought......

[frogslegs]

It is well possible that as you say he feeds off your stress but I also find my son goes through phases although I wish they were annual! Often when he is tired or is growing then we are in trouble. First sign is his laughter which goes high pitched and really really silly and I think euh euh.. then he troubles his sister and you really need to keep an eye on him, then I usually get notified that there has been trouble at school during playtime, he goes restless and gets mega stressed. Then he calms down again for two three weeks and he will be super, lots of hobbies and interests so he will be busy doing that and he is content. I don't know what your boy is like but mine does not have a full display of expressions. Therefore people don't always know what's going on. The other day he took a music exam and he looked cool as a cucumber but I knew that in fact he was a ball of nerves and indeed he admitted afterwards that he had felt really stressed. All I am saying is that there might be a discrepancy between what he feels and what he is telling you, even when he appears calm.

I am not very good at keeping calm and at times I have felt real stress with my chest beeing tight, so I try to go swimming a couple of times a week, walking on my own and just keeping myself strong so that I can cope. I know that if I can't cope then he won't either. I have learnt over the years that I had to be kind to myself so that I could be kind to others... I know it sounds daft but important!

Off to have a cup of tea with a couple of bikkies. Aaaaah

Mel

 

[Dawn22]

Hi,just to say my 9 yr old has aspergers and adhd only diagnosed this last 2 wks.What you both describe is the same here..ups and downs..when it goes good,you do think..what on earth was i ever worried about..but the downs are incredible.

 

I notice that when i have pms we both clash,this is despite me being aware i have it and trying my hardest.My son can come home from school and in the flicker of an eye i can tell what sort of evening we are going to have.

 

I find that the summer mths are the best in terms of behaviour as we can get out more and release his frustrations,that is until he has a row with a friend etc.

 

It is very hard to manage when he is frustrated,as we only have a small place and he can affect the whole familys mood,especially as he has a younger brother.Since becoming aware of aspergers,i have really adapted how i have been with him,as i now realise the scale of his problems and the fact that he is the way he is because of his aspergers.His black and white thinking for example,now i see it clearly,but before i just thought he was being 'difficult'.

 

I just thought he had adhd,so am only just getting to grips with it all myself.

 

He is a lovely.bright boy and his humour is amazing,but i can now start to see our 'problem areas' and am going to focus on those bit by bit.

 

Anyway,sorry to chip in,it is just sooo reminiscent of my life!

 

Dawn.

[Salbaggio]

Wow Dawn, that is just like my life!

 

The ups and downs...feeling like I have made it all up when he is having a good patch......PMS (I currently have it!)........summer/fresh air=better times..........younger brother.....bright with sense of humour!!

 

I think that my problem is that because this is all quite new to me still and especially because we don't have a confirmed dx, I don't yet know for sure what I am dealing with. Because of this I look at other people's experiences with Aspergers and worst of all READ STUFF and get myself convinced that we are heading in the wrong direction because he gets most jokes or has days when routine is not SO important. I have a particular relative who's son has Aspergers and at the age of 21 is not able to be left entirely alone, when they go on holiday for example, because he will just forget to eat, and I think well Levi is not like that so maybe I am projecting this on him? My logical head absolutely knows that each human being is different to the next so of course each person with AS is going to be different too but I just get caught up in a worry that I am getting it all wrong and therefore not doing the best by Levi. It can be very hard to get the balance (in my head anyway!) between pursuing a dx because there is one to be had and pursuing something that isn't really there!!!

[frogslegs]

All different... My son has no need for routine which is just as well. He likes structure though. He is very independent, takes himself to school on his own, I occasionnaly leave him on his own at home for up to 30 minutes without a problem. He makes his own breakfast and is capable of cooking a bolognese by himself (I train him well don't I).He is doing well at school, is very inquisitive, loves new experiences, is looking forward to going to camp on his own for one week (second time he is doing it). So on the whole is doing fine. The problems were far worse when we did not know what was going on as I would run out of patience with his negativity, his tantrums, ups and downs, I could not understand why he had no friends, why he would have sudden bursts of anger, be at times totally negative about himself and at other times boasting....was so clumsy, could not run, cut, tie his shoe laces, a very messy eater, come home to tell me a whole list of the bad stuff that has happened to him. Like Dawn, one look at him and I know what sort of evening we'll have.

He is still like that and I have had to learn to look after him differently to the way I look after my daughter. He is incredibly disorganised and forgetful so you need to keep an eye on him all the time, check his school bag for notes... I need to keep instructions very simple because he cannot handle more than one at a time, we only live 10 mn from the school but if he has to give a cheque for example I need to give it to him just before he leaves otherwise he forgets. I sit with him during his homework otherwise it does not get done properly, he has timetables/reminders all over the place. It is time consuming, stressful as he is so needy which is why as a parent one has to look after oneself a bit to cope with all this.

As for worry, I do that all the time, and at times feel overwhelmed by what is going on and the list of 'to do' for him. I have stopped reading so much about Asperger now and just deal with the 'symptoms' step by step.

As for diagnosis, in my heart I knew something was not right from nearly the word go, and I spoke to the teachers, GP, health visitor..... and everyone was dismissing me as an overworrying parent, mainly because he is very bright. It is only last summer that I seriously put my foot down and demanded for him to be seen by a paediatrician after somebody whose child had autism saw all the signs. Now we know what we are dealing with, it is easier.... On the positive, the other day he said he likes himself the way he is and that it is actually okay to be different. I agree with him. It has certainly made us closer! We talk a lot and I told him that I am on his side, his buddy and that he could tell me anything as long as he listened to what I say, a sort of 'wise voice'. So if there is a problem, we try to look at it objectively and find solutions that work for him and often he works the solutions out for himself.

Keep calm and don't worry too much! <'> <'> <'>

[Dawn22]

Hi,again,so similar to both of you.My son,which obviously,since diagnosis has helped me see things for what they are sounds very similar to your children.I felt the same before diagnosis,as just wasn't sure what was going on or where we stood.My son can be very independant,though there are certain aspects of his life where he justs appears to meltdown and not understand the simplest of instructions,however,he can too,also cook a brilliant bolognese.When it came to him cooking something in the oven for 25 mins however..that was it,25 mins and it was turned off and taken out..despite it not being cooked enough!We also have major problems if we say someone is due round in 10 mins..if they are late//god help us..where are they?are they here?

 

It is these kinds of problems that we have,which to some people,don't sound major,but when you are living with it,it can be a nightmare some days.He can also go on bus to school by himself,though am getting the idea he is having a few problems.He has a great sense of humour,which helps him get through some of these issues,but some of the social problems he is having,i don't even think he realises yet..if that makes sense.

 

I have major problems disciplining him sometimes too,we was doing a reward marble jar,but he has lost interest completely as thinks it babyish.I used to feel that he must be miserable,as it felt like i was always 'on at him',but things,touch wood are a lot calmer now.

 

Elliott is not a 'classic' case of asperger's,for instance his obsession is football,which is quite a typical passion of young boys,but it was only when we started the diagnostic process,we realised just how much his life revolved around football..christmas day,playing footie on his own outside..despite not having a new ball or anything footie related!

 

I too got brushed off by 2 docs and my school concerns were not taken too seriously as he is a very bright and usually trouble free kid,bar dinners and breaks when he often has social/friendship issues.

Getting him ready for school and out the door can be a nightmare too,i have to constantly keep on at him..then he suddenly 'realises' what the time is and goes into panic mode.I used to think that it was just his way or that it was because i do everything for him..but this is one of our problem areas at the moment,i pretty much HAVE to do it,though i am going to be working on this area.

 

I think,when you have no confirmed diagnosis,or no one sees the problems you face,you definately tend to think it is your fault,since being on this forum,have not given myself such a hard time.Early days,but getting there!xx

[Sally44]

I think alot of professionals don't take enough consideration of a child's cognitive ability and how they do develop coping strategies as well. I even had my son assessed by an NHS Occupational Therapist who concluded that he has Sensory Integration Disorder, however he has such good coping strategies that he doesn't really need their input. Hmmnn. Anyway, mine is a long story, but suffice to say I did get a diagnosis, Statement and went to an Educational Tribunal and got everything we had asked for.

Have a look at the DSM IV diagnostic criteria for both an autistic spectrum disorder and Aspergers. If you can see that your child has difficulties in those areas (and write down examples of them) then they should get a diagnosis regardless of good or bad days. Infact the point that you do have good and bad days points to aspergers/autism because 'typical' children learn things and generalise them into different environments and their emotional and behavioural response is relatively even. Autistic children don't. That is why they may cope with having to turn the computer off to come and have dinner on one day and then have a meltdown two days later when asked to turn the TV off to come and have dinner. It is the inconsistencies, the peaks and troughs, the good abilities in some areas and total inability in others.

Also get in touch with the National Autistic Society about how about getting a diagnosis.

Your explanation of how your son responds to his own behaviour is just like my son who is diagnosed with high functioning autism (not aspergers because he did not develop language typically and even now he is 8 his language is approx half made up of phrases from other people, TV and films and half his own construction). So my son would get very upset about something and say "I need a different family/mum" etc. He would be unconsolable, and it was even worse if you tried to talk to him or touch him. When he had recovered he would be upset again at how he had behaved and would ask "what is wrong with my brain, why can't I control it". He frequently tells me he loves me. He has lots of abilities that those on the spectrum are supposed to struggle with or not have. For example, he was watching something on TV last night and it told about how a man had been locked inside a toilet for 3 hours. My son roared with laughter at this, but then said "it's a very funny story, but not funny for the man". Now that is amazing for a child with autism to see that from a different persons perspective. However, he cannot use that insight in all situations at all times.

You said the Speech Therapist is going to see him. They need to assess all aspects of his speech/communication and social interaction skills. His expressive speech maybe much better than his receptive speech. He might have auditory processing disorder or delays, or problems with auditory memory or working memory, or Semantic Pragmatic Speech Disorder, of difficulties with comprehension and inference. He may not know how to initiate play or sustain play. He may play rigidly and not be flexible enough to sustain play with other children etc. The SALT is responsible for speech and social interaction and should make recommendations on programmes in both these areas, not just speech. Playtime and dinnertimes are much more stressful for those on the spectrum because it is unstructured. Without support my son can walk up and down the fence line. But if he does that for more than a couple of minutes I have asked school to support him by asking him 'who' he wants to play with and then to prompt him to initiate and ask to join in. These are skills the SALT has taught him and he uses them and when given the choice (and support) of walking up and down or joining in, he chooses to join in.

[frogslegs]

Hi,again,so similar to both of you.My son,which obviously,since diagnosis has helped me see things for what they are sounds very similar to your children.I felt the same before diagnosis,as just wasn't sure what was going on or where we stood.My son can be very independant,though there are certain aspects of his life where he justs appears to meltdown and not understand the simplest of instructions,however,he can too,also cook a brilliant bolognese.When it came to him cooking something in the oven for 25 mins however..that was it,25 mins and it was turned off and taken out..despite it not being cooked enough!We also have major problems if we say someone is due round in 10 mins..if they are late//god help us..where are they?are they here?

 

It is these kinds of problems that we have,which to some people,don't sound major,but when you are living with it,it can be a nightmare some days.He can also go on bus to school by himself,though am getting the idea he is having a few problems.He has a great sense of humour,which helps him get through some of these issues,but some of the social problems he is having,i don't even think he realises yet..if that makes sense.

 

I have major problems disciplining him sometimes too,we was doing a reward marble jar,but he has lost interest completely as thinks it babyish.I used to feel that he must be miserable,as it felt like i was always 'on at him',but things,touch wood are a lot calmer now.

 

Elliott is not a 'classic' case of asperger's,for instance his obsession is football,which is quite a typical passion of young boys,but it was only when we started the diagnostic process,we realised just how much his life revolved around football..christmas day,playing footie on his own outside..despite not having a new ball or anything footie related!

 

I too got brushed off by 2 docs and my school concerns were not taken too seriously as he is a very bright and usually trouble free kid,bar dinners and breaks when he often has social/friendship issues.

Getting him ready for school and out the door can be a nightmare too,i have to constantly keep on at him..then he suddenly 'realises' what the time is and goes into panic mode.I used to think that it was just his way or that it was because i do everything for him..but this is one of our problem areas at the moment,i pretty much HAVE to do it,though i am going to be working on this area.

 

I think,when you have no confirmed diagnosis,or no one sees the problems you face,you definately tend to think it is your fault,since being on this forum,have not given myself such a hard time.Early days,but getting there!xx

Dawn, our boys sound so similar!!!!! How old is Elliott? About time matters, my son sometimes chats with a boy across the road. At about 6pm the boy goes in for his tea and if he tells my son 'I'll be back in a minute' then trouble! I found my boy waiting and shouting after a minute that the time had ellapsed, why was his friend not back out again? Then we sit down and explain and we think that it has gone in but no, it happens again. My son is not into football but into trains! An anorak!

We also have discipline issues, in the sense that finding a punishment that works is increasingly difficult as he does not seem to care very much about anything, so to say no TV for the week seems absolutely of no consequence to him. He likes money though, so I don't give him pocket money on a regular basis but when he has done something good, he values that!

To cope with hellish mornings we try to be organised in the evening, so we have P.A.T. time (put away time) when he prepares his school bag, his P.E. kit and has a look at his timetable to make sure that all homework is ready....We prepare the uniform in advance. I have given up packed lunches because they were too much stress (I thought he was getting dressed while I was preparing sandwiches but he would be sitting in his room reading in pants), so we try to keep routine simple and in the morning all he has to do is have his breakfast, wash dress, pick his bag and go.

I do not think it is my fault and over the years, I have concluded that we were ok together as a family (super time on holiday, week-ends...) and that it is other people who give us problems. People who refuse to invite my son because he is different (he is not agressive!) or who organise stuff during school holidays and never invite him. The fact that 'intelligent' adults could be so cruel used to throw me completely and that has also been something that we have had to learn. Believe me, I have had to walk around the block many times at full speed to cool down! Finding this forum has been a breath of fresh air as I have become so isolated (if your children are not ASD you can't understand what we are going through).

Take care

 

[Dawn22]

Hi,my son is 9,ten in August!Don't know if it is just a parent thing,but the first 5 yrs of his life seemed to last forever!Maybe it is something to do with being diagnosed 2 wks ago with as and adhd!However,now time seems to be flying by.My other son,Ellijah is now 3,and time seems to be speeding by unbelievably!

 

El is never really bothered about having things taken away from him,unless he is really frustrated..then everything bothers him..but usually pocket money works,he really likes saving up.

 

His outburst type spells seem to come in waves,and there is usually a school/friend issue that goes along with it.When we have organised birthday parties for him,very few kids have turned up,one tim,just 3,and we had borrowed one child as well.Luckily,he didn't notice..or even question it,but times like that as a parent make your heart break.So i can completely empathise with the parent issues you come up against.

 

My partner has explained to our neighbours too,which has been a godsend.Up until a couple of mths ago,we had seven kids and 2 adults in the flat next door to us,that particular arrangement lasted a yr,and El's behaviour in that time was the worst it had ever been.Because of the lack of friends in the area,he looked on their behaviour as 'normal',and unfortunately,with that many kids out on the street all day every day,the parents either ignored or simply couldn't juggle the overseeing of their behaviour.I found that i was out sorting out all the arguments and rows..and my stress levels went through the roof.

 

The diagnosis could not have come at a better time,as El can now re learn the whole friendship thing,with children who are monitored a little more closely themselves,if that makes sense.I like going out on long walks with the kids and relaxing in their company,i find it hard going to my friends house with them as El gets very hyper and can act quite immature,he also does this at family members houses too and when we have people round.

 

Once El gets like that,it can be very hard to get on top of the noise,and his little brother then acts in a similar way..so then i have 2 of them bouncing around,this is particularly a problem when they both get up and again when el returns from school,it does calm down,but they can wind each other up very quickly.I obviously have a lot of areas to focus on!

 

Funnily enough,with regard to what i said earlier about him cooking food,i cooked the same food for tea tonight,and when el saw it,he said 'did you leave it in for 25 mins?..thats a joke mum!' He does make me laugh.

 

Sorry for the ramble again,but am finding the more i write things down,the more i can see our problem areas,whereas pre knowledge of aspergers,everything seemed so manic and hectic so much of the time that EVERYTHING seemed to be NOT going right,now i can see a little light.

 

Dawn.xx.

[frogslegs]

Hi Dawn,

Like you I have had lots of problems with children in our street. We live in a modern estate with children in each house who play in the street for hours on end without supervision. My son used to go and play and every time he would come home in tears because 'so and so had said or done things to him' (he also did stuff to other people but he could not see that), and this was incredibly stressful for me as he expected me to sort everything. He cannot share his toys and expects others to accommodate him, goes too close to other children's faces, shouts at them.... disaster. We have a small garden but unfortunately that is not where he wants to be. He can hear the other children in the street and longs to be playing. He is sort of defiant, and wants to go on his bike even though he knows that trouble is round the corner. I have now been very firm with him. 'If you go out you know what to expect and I do not want any trouble, you need to know when to back off, if any trouble you are grounded'. Funnily enough now that I keep away from it and not on hand all the time to fight his battles he is gradually learning to walk away and there has been less trouble. He is usually out for very short spells (30 min. max). We have told a few of our neighbours. Some are understanding and some less so.

As for birthday parties, they used to be an issue (similar to yours) but nowadays I let him invite one or two children and we go out to the cinema and then eat a pizza. There is a couple of children in the class who are similar to my son and they have sort of found each other now (it has taken time!). Behaviour outside familiar environment used to be problematic but things have gradually calmed down. When we go out, we need to manage things carefully, especially if it is non structured (play in a park, soft play area...) explain before going what behaviour is expected, keep playtime short and say if behaviour is bad, we go home and stick to that (I have had to go home a few times but now he knows). I had far more problems when I did not know what was going on but now on the whole it is okay.There is a very good behaviour method which I have recommended in this blog before called Webster-Stratton which they use for children with behaviour pbs which is fantastic. I went on a 12 wk course provided by local surgery. Very helpful. (if you want details I'll pass them onto you)

My daughter is 7 and is calm but at times she gets fed up because they can't play without things going sour quickly. He wants his own way, gets rough, breaks toys... He is very tall (shoe size 9) and so clumsy....

Don't worry about ramble, I ramble too....

[Sally44]

A couple of you have raised issues your children have with time. Ie. 'in a minute' means exactly that. That is literal interpretation of lanuage consistent with an ASD. Also google Semantic Pragmatic Speech Disorder to see if that is relevant.

Children that have no understanding of time have difficulties with executive functions. Google Executive Function Disorder. I found a good website called schoolbehaviour.com, which gives info on a number of disorders including Executive function. Diffiuclties with this area can include, understanding time, planning, sequencing, making goals, etc - ie. every skill needed in the classroom and work environment.

[frogslegs]

A couple of you have raised issues your children have with time. Ie. 'in a minute' means exactly that. That is literal interpretation of lanuage consistent with an ASD. Also google Semantic Pragmatic Speech Disorder to see if that is relevant.

Children that have no understanding of time have difficulties with executive functions. Google Executive Function Disorder. I found a good website called schoolbehaviour.com, which gives info on a number of disorders including Executive function. Diffiuclties with this area can include, understanding time, planning, sequencing, making goals, etc - ie. every skill needed in the classroom and work environment.

Thank you Sally I will look this up.