Newbie here, any advice really appreciated - constant crying & diagnosis process...

[blm]

Hi everyone, I'm completely new to this forum and this whole issue tbh. My son is nearly 6yrs and I think he's been showing signs of "something" from a very young age and have raised it with health visitors and family over the years but they all think I'm being paranoid. Lots of things he did/does and a gut feeling that 'something' isn't quite right - especially when I looked at other children (cousins/friends' children etc). I try my best not to compare him to his younger sister as they are different people/sex but it's becoming even more obvious to me and family now.

 

Initially it was him rocking all the time, then over time I realised this habit was replaced with blinking/sniffing/chewing clothes (all of which he still does at different times). I became really concerned when he started to scream hysterically at loud noises when he started nursery at our local school (i.e. drilling and motorbikes) - the drilling has always been an issue but not much DIY happens in our house so didn't pick up on it initially! However, the motorbike reaction was very obvious indeed. He absolutely loves cars/bikes but if a loud one came along the road, he would run away screaming and loud aeroplanes also affected him. He has learnt to deal with these much better now which is good and tends to put his hands over his ears.

 

He's always been forward with learning new things but was behind on his speech in terms of explaining things and is still very behind on this now - we've learnt to put the pieces of information together to make out what he's telling us and never really thought much of it. He finds school easy but he's very sensitive and will only play with certain people (those who like cars or football) and he has always been very anal with things (not sure if that's the right word) - lining cars up facing the right way and would cry hysterically if moved; grouped cars (or anything!) into colours; obsessed with diff things over the yrs (initially car makes/models and knew them all by 2yrs recognising the badges and then the shape of the car; then colours (using cars); then letters & numbers (using number plates) and then puzzles). He still shows signs of obsession now but at the moment it helps him a little (i.e. learning to read and add/multiply) - he often races ahead with these new subjects and once he's learnt them, he will go onto the next thing. I can deal with his weird ways and him not liking to play with anyone other than his close friends (who he's known since birth) and his lack of confidence but the thing which I am finding unbearable is the CONSTANT crying and more recently, his bad behaviour during school hols. He cries hysterically like someone has cut his leg off and it's because something hasn't gone his way or you tell him to stop playing the DS or something (he used to do it at school if he couldn't do his zip up). He acts like a 2 year old at the age of 6 with the crying and it's more obvious with things that just don't go the way he wants/expected!! If he tries to score a goal at football and it doesn't go in, he will cry in the middle of the pitch like he's hurt! He has said that he doesn't know why he does it and can't stop it or control the crying once it starts. It's ruining the hobbies which he REALLY enjoys and which are helping his confidence issues. And in the last year I have noticed that once school term is over, his behaviour is absolutely awful - like he's a completely different child. Hurting his younger sister or doing things which he knows aren't allowed in the house and WILL NOT listen to me, it gets to the point where he is sent to bed because I don't know how to deal with it - it's not like him at all. He has recently started laughing when he's being naughty too - I'm not sure if this is his way to stop the crying!

 

I know children have more energy if they're not at school but he can go from being really caring to his sister to hurting her and just doesn't understand/thinks it is okay (until it is done to him!). He has no imagination which doesn't help as my daughter is full of it so they do find it hard to play together. He is VERY competitive which doesn't help either! There are lots of other Autistic traits too. But one thing he NEVER EVER does is get angry.

 

To be honest, I'm hoping it isn't Aspergers/Autism (as every parent does) but I need help understanding the crying and bad behaviour so I can help him as I don't know how his brain is working at the moment. I have spoken with the school who said they have no probs with him in school (which they wouldn't because they have set routine which never changes) but they said they would do internal assessment ... but they haven't. Went to drs who said it was very unlikely that he has aspergers/autism because his communication skills aren't that bad and he has friends in school but she asked him a few questions anyway (and he started chewing his sleeve straight away) - one of the questions was "how many children are in your class at school" and his answer was "well one might be on holiday, one might be ill and one might be in" so she asked the question again and his reply was "well if one is away then there are 29" - she looked at me oddly at that point and gave me a CAST questionnaire to complete - he got 21 on that and my understanding is that above 15 means referral to psychologist so I'm waiting to hear back from Dr at moment.

 

Does anyone else have problems with their child crying all of the time and bad behaviour during school holidays - any advice would be really appreciated. His dad shouts at him when he cries and I don't think it helps at all but he just doesn't understand why he's the only child we know like it.

 

Also, if anyone can tell me the basic process which will happen, I would be really grateful.

 

Sorry to have rambled and thanks very much for reading.

[zeldasmum]

A big resounding YES. Ds is 7 he doesn't have a dx yet but I am convinced he has AS. He cries numerous times throughout the day and always has done. He never used to get angry once he turned three but over the last couple of months his emotional outbursts somethimes lead to anger.

 

His crying follows the same pattern, he is struggling to do something, things don't go the way he has planned or he doesn't win. He then cries (without any tears) and will say "I am a loser, I am an idiot, you hate me don't you? you don't love me, I have no friends" This can be repeated twenty plus times in a day. TBH I find it emotionally draining and quite embarrasing if we are out and he is saying "you hate me". He needs constant encouragement, reassurance and praise and even with that groundhog day never changes. i have asked for advice from the Ed Pysch but was told to try social stories which I had already done.

 

Regarding the process, it varies from area to area so I can only share my experiance.

 

He was referred by school to BEST in Apr 2010 they came into school weekly to work on social skills. During a home visit aspergers/Autism was first mentioned to me. I googles it and suddenly everything made sense.

 

Referred to SALT by school.

 

SALT referred to Comm Paed who he has now seen twice.

 

Paed referred to Physio and OT- who have assessed him as having immature gross motor skills, OT as having sensory problems.

 

School referred him to the Ed Pysch.

 

We are now waiting to go on the waiting list for CAMHS who will do the ADOS.

 

DS doesn't behave any different in the school hols if anything he is more relaxed. DS doesn't have any friends in school although when he was your DS's age the other children would play with him until they got fed up with playing Mario Bros. he rarely plays football but when he does he will cry if they tackle him, if they don't pass the ball to him.

[sesley]

be persistant with the professionals,you want answers. do not accept health visitors unqualified advise alone get to see a child phsycologist go thorugh your GP and make them listen,go through educationalists do not just go away get your answers,it will take time and a lot of effort from you to make them listen.Go to NAS for help if necessary http://www.autism.org.uk/

[andysn]

Hi my son is 16 and he gets unsettled for between 3hours and 2 days during holidays, he has pdd nos and attends a local special school. I eventually sussed that he is seeking assurance that he is returning to school, he says school i say yes after holidays then we talk about what we are doing during hols. Your daily life is probably more structured than you think; same route to school shops, bins collected same day, mealtimes the same etc. Crying can be very draining esp. if you do most of your sons care plus trying to find answers, keep badgering people like school dr,also ask school if there is a local support network.

[blm]

Thanks very much for your replies and help everyone, really appreciated. I will keep pestering as this has gone on for too long now. I keep flitting between thinking he deffo has it and he hasn't! Depends what I'm reading and as we all know, the internet is full of useless information (aswell as some useful) and it's just working out which one I'm reading! I've just read about reflux and digestive probs and that's something my son has had - he had bad reflux from birth and was on meds and he has always got loose bowells/large tummy and often complains of pains in his tummy but has no need to use the toilet. Maybe this is another indication, maybe not! Thanks again everyone.

[JsMum]

Hi Bim, my son has a range of developmental disorders including Autistic spectrum and there was a few schools who also said no problems at school but there indeed was, he is severely dyslexic which was picked up at 6 but not diagnosed until 11yrs old, so just because school say no problems doesnt mean there isnt and many teachers lack the expertise and training in even recognising the symptoms and signs anyway, what stands out is how highly inteligent your boys sounds and wonder what his IQ could be, this could be interesting to compair to his verbal and non verbal IQ and maybe a full assessment of his Language development too, as the crying could be well down to language impairments, the crying could be because he gets frustrated, hasnt got the ability to verbalise his feelings, thoughts, he may not be able identify the right emotions with the right vocabary, he may gets so stressed and anxious that he cant process the words and so just crys, so do look into a Language assessment also.

 

Your son seems to be a quick learner and Im suspecting a Visual learner, pictures, symbols, numbers, order ect,,, if this is true then multi sensory learning is going to really benefit your son, so look into visual aids, pecs, widgets, symbols which then can be made in Visual daily timetables even in the Holidays I do visual time tables, I use callenders, date and time clocks to help him understand the time concept and awareness, you said your Ds get upset when he has to come off the DS, do you warn him before him before hand, my son needs a five min warning before anything is about to finish, even if he doesnt like the fact that task is about to finish the five mins warning just prepares him and gives him time to process the information, use sand timers, visual timers if he has time concept difficulties, you could look into finding visual aids to support his emotions and feelings, look into Anger management stratagey for children.

 

The description you gave about the noises and the sensory discomfort he gets is called sensory there is a condition called Sensory Processing Disorder there is loads of information on the internet so do take a look, a great book I recommend like all the time is The Out of Syncs Child.

 

http://www.sensory-processing-disorder.com/

 

Understanding Sensory Processing Disorder can give parents understanding how it effects a child with SPD and there is lots of ways to help reduce the discomfort.

 

You say that your son is competetive, my son is too, we had to work on games that gave a fair win and loose result so he could get use to the feelings and cope with them, we did work on disapoitment and the need to be perfect which a lot of it is then too much presure and when they loose they turn the anger on themselves, calling themselves names and putting themselves down, so look into confidence building programmes for children, self esteem programmes, have positive words around the house on the wall with things on it that describe there positive personality traits, so Funny, Chatty, Active, ect....

 

To increase sibling relationships look at social skills programmes Specifically for children with Autism/special needs, there is some great social stories that can help aid a childs understanding especially as they use visual descriptions.

 

Follow up the internal assessments at school, put it in writing, and ensure that it is done soon.

 

Chewing clothes/sleeves could also be a sign of Anxiety/stress, look at stratagies that help your son relax, so relaxation CDs, yoga, and to help with his bordem in the school holidays look at Gymnastics, judo, football classes.

 

Help Dad to look at better ways to respond to your DS crying, could Dad go for a walk or get some fresh air, go in another room, a crying child can be very distressing but if he cant cope he needs to find ways to deal with the crying so maybe Dad needs support too with managing your son, a great place for that is the National Autistic Society HELP courses, they are a day cours that helps parents use stratagies to help a child with ASD needs.

 

Keep a Daily diary of his behaviours and any concerns, this will become evidence in the future.

 

Look at using a ABC chart for a couple of weeks these help identify any weeknesses such as what are the causes and what are the consequences.

 

http://www.specialconnections.ku.edu/cgi-bin/cgiwrap/specconn/main.php?cat=behavior&section=main&subsection=fba/abc

 

A great place for support is CONTACT A FAMILY.

 

National Autistic Society and Cebera.

 

http://www.cafamily.org.uk/families/index.html

http://www.autism.org.uk/living-with-autism/understanding-behaviour.aspx

http://www.cerebra.org.uk/English/Pages/home.aspx

 

Dont give up, keep fighting.

 

JsMumx

[Sally44]

There are lots in your post that I can identify with. My son is diagnosed ASD - sorry it's not what you really want to hear. But be prepared that that is what you may be told. I was fobbed off since my son was 3 by various professionals and the GP who said that school would pick up any difficulties. Well they did and referred him 4-6 months after starting school. My son should have been picked up much earlier and his experience of school was horrendous because he could not cope with it.

 

As already mentioned, Sensory Integration Disorder sounds like something you need to read up on. And ask for a referal to Occupational Therapy. NHS OT Department do not fund sensory integration programmes, but you need to start the process to get the diagnosis, to get it in the Statement, to get the provision provided for OT input and a sensory programme.

 

What I also noticed about my son from when he was a baby was what I would describe as a total over reaction to things compared to the event or what triggered them. He would scream, cry, tantrum, fall on the floor, vomit, and be absolutely distraught which could last minutes or hours or all day and it might be because I gave him the wrong coloured cup, or he lost at something, or I told him to turn off the TV etc etc. My son is now older and he has described it in various ways such as "I can't stop the feelings" "I can't control it" "my brain is melting". It has also affected his self esteem and confidence because he recognises that his responses and reactions are different to his peers, yet he cannot stop it or get it under control. The best advice we received was from Clinical Psychology who said to treat it as a "panic attack" rather than naughty behaviour. Although the behaviour is not acceptable or appropriate it may take many years of input from you and professionals for him to respond differently, and he will probably have these types of emotional overreaction difficulties all his life.

 

You need an emotional literacy programme for him to recognise his own emotions and the emotions in others. He will not necessarily get that. If he has sensory issues he may not even register emotions and connect them to events.

 

Deal with outbursts by labelling his emotions eg. "I can see that you are very upset/angry/mad" etc "you need some quiet time to calm down", and then use his bedroom or another quiet area for him to go and take some time out. Keep language very simple. Don't try to resolve upsets when they are happening. He probably won't cope with that extra information processing and it could make him worse. But talk about it afterwards and use cartoon pictures etc to go over what happened, what he said, what he thought, what you thought etc. You will probably find that you assume he knows/understands alot of things, but he may not.

 

As well as a lack of imagination, you may find he takes language very literally. We've known this with my son for years, and we still keep falling into the same traps because you forget what you are saying to your child. For example yesterday I told my son "you have watched too much TV today, I think we should go jogging together later to get some exercise." I said it as a joke. I don't jog. He has dyspraxia and low muscle tone - he cannot jog. Later that evening we could not find him. After a long search we found him hiding in the wardrobe because he was scared I was going to make him go jogging!! He had not understood my voice tone, or facial expression or gestures. He took what I said as fact rather than teasing or a joke. I told him it was a joke and he said "really? I thought it was for real!"

Edited June 16, 2011 by Sally44