Help for unusal behaviour whilst waiting for diagnosis'

[Niecie]

My ds who is just 4 has recently been for an assessment with a paediatrician after we became a little concerned about some of his behaviour -hand flapping whilst jumping up and down or pacing backwards and forwards across a room; poor concentration and inability to stick to any thing he considered difficult; poor social skills; clumsiness; poor fine motor skills - he can't hold a pencil properly, has shown no interest in writing or drawing and he can't use scissors or feed himself with utensils properly. None of these is really bad if looked at alone but taken together it just seemed that something was not right.

Anyway, we now have the report which has suggests a diagnosis of 'clumsiness' and 'social communication difficulties' and he has been referred to a clinical psychologist for which there is a year's waiting list. We discussed with the paediatrician at the time what might be his problem and it was suggested that he either had mild Aspergers or maybe dyspraxia. Having read about both on the Net I am not sure which is more likely and it could just be that he is a sensitive little chap who has had a bit of a tough 18 months with moving house, the arrival of a new brother and a father who was out of work for 3 months, not to mention starting playgroup, changing play group and the prospect of starting school in the next month.

Anyway, to get to the point (!) has anybody esle out there ever been through all this and could anybody tell me whether he might have any kind of therapy if any of the clinical diagnoses is given. Are there any exercises that I can do with him that might get a head start on any therapy that he might need (assuming of course that it won't do him any harm if he is deemed not to have any specific disorder). Is there anything I can do to help him when he starts school given that his 'problems' mean that he will probably struggle to make friends and to do some of the more academic things like learning to write. He doesn't respond very well to being told what to do by me which worries me because I wonder if he will 'fight' the teacher the same way that he fights against me so it would have to be fun for him to cooperate.

Sorry this is so long but I just feel like we need some guidance now and we won't be getting any professional help for a long while yet.

Thanks very much.

my ds is 5 and he displayed many of the same traits but not the social skills problem and could always use knife and fork. he still struggles with scissors but has started to want to draw and write by choice. he can spell many words on his own and can produce legible writing when he chooses but can't always be bothered. i think these problems are lessening as he grows up. many of my friends have children the in the same age range and most are still struggling with writing though girls do seem to be more able. we also moved house and he had to change school not sure if this affected him or not. i think they start school too young in a lot of countries school is for when they are around 6.not sure if i have helped or not as i can only tell you what progress my ds has made. i think that what i am trying to say is sometimes time resolves problems. sorry this is a bit of a ramble.

My ds2 who is just 3 has similiar sorts of problems and also no diagnosis at present although he has been seen by a paed a couple of times, also by SALT and OT&PT. He is an extremely messy eater, not great with a spoon but also really preferring to use his fingers. He runs in a clumsy way, can't jump yet, doesn't hold a pencil properly and doesn't really like drawing. He finds things like jigsaws and shapes sorters really hard and like you describe tries to avoid any activities he thinks he can't do. For example, he loves doing jigsaws but wants to do the ones he has learned to do over and over again rather than try a new one that he can't do. His speech is a bit delayed and also very unclear in terms of articulation. He does some imaginative play but I would describe it as a bit limited - he gets a bit stuck in the same type of games. For example, he plays that his baby elephant is looking for its mummy, then that his baby lion is looking for his mummy etc. This combined with his language difficulties makes it hard for him to play constructively with other children, also because he is quite clumsy he often knocks things down that they have set up etc.

I worry perioidically that he is autistic but he seems to have quite a good understanding of some social skills like taking turns, he likes peekaboo and hide-and-seek type games and he loves to play with his brother, share stories etc.

Anyway I think that my ds2 may well be dyspraxic (plus maybe something else???) so I have done a lot of research into this. I can recommend a good website with leaflets you can buy and information - The Dyscovery Centre - fms.antics.co.uk/dyscovery/index.pl. Also would suggest the following books on dyspraxia - "The Hidden Handicap" by Amanda Kirby and "Dypraxia - a manual for parents and professionals" by Madeleine Portwood. They both have suggestions for games you can play, exercises you can do etc for dyspraxia and motor skills. Even if the final diagnosis doesn't turn out to be dyspraxia the motor skills stuff would probably be helpful.

It is very frustrating having to wait and not knowing what's wrong. I hope you can get a clearer picture soon.

I am hoping that he will settle into school and all the 'strangeness' is a result of the upheaval that will lessen with time when things have settled down, although as you say they start school too early here. My sister-in-laws mother is a special needs teacher and she said in passing that a lot of the children she sees are summer born children (like ds) and they are just not developmentally ready for school. I think if they were left until they were 6 then a lot of the problems would have ironed themselves out but there is not choice in the matter. Even though he does not legally have to go to school until next year if I hold him back he won't get a place so what can you do.

My HV says that everybody has a degree of autism - she puts herself as a 2 because she is a bit of a compulsive tidier and doesn't like things out of place. I am wondering if DS is a 3 or 4 and his behaviour is currently worrying us only it has been made worse by stress. Maybe he needs the routine of school even if he is not ready in other ways. It is the not knowing that it so difficult. I find myself telling him off for being messy or not trying to do something (because sometimes we just think he is a bit lazy) and then I worry that maybe it isn't his fault and I should go easy on him. But then they can't get away with things all the time can they!?

Can anybody's ds pedal? We thought that he had finally cracked it before going on holiday as we got him a bike for his birthday (a bit foolish as he never laened to pedal is tricycle bu t we thought he ought to have the opportunity) and after much time and effort he finally seems to have got it. However, we were on holiday last week and he was playing with a toy tractor on a children's farm and he just could not pedal that at all. We seemed to be back to square 1. I will definitely look out for those books on dyspraxia. As you say, even if he doesn't have the condition he is still not the most physically coordinated child and is lagging behind his peers on many things so anything we can do to help has got to be positive.

Goodness I am rambling on again. Sorry!

My ds2 cannot pedal at all - he can't even keep his feet resting on the pedals when you push him along. However my ds1 (who is not dyspraxic) also found it hard to learn to pedal and was at least 3.5y before he could pedal a trike or tractor. He learned really from sitting on proper bike with stabilisers. They suggest in the dyspraxia books that a trike is a lot harder to pedal than a proper bike and say it is better to go straight to a proper bike so I think you did the right thing.

I agree so much about the starting school thing. My ds2 is an August birthday but there is no way he will be ready for school. I am going to fight to keep him back a year - this is still legally possible because his birthday is August but apparently the LEA don't like it and may try and put him straight in year 1 instead of reception if I do.

I also find it hard with my ds2 to judge what I should and shouldn't make him do as you describe. He would always rather ride in the pushchair than walk, but if he doesn't walk plenty he will never get stronger. However I don't want to force him to walk if he finds it genuinely hard work and tiring. Likewise things like using a spoon. And it is so hard not to say "what a mess!" etc when you are cleaning him up after meals.

Can your son jump, how is he with things like stairs? Can he dress himself / undress? As yet my ds2 can only just take off his socks, but can't manage shoes, clothes or turn lids or anything like that.

I suspect my son may well be dyspraxic. No, he can't undress or dress himself and he can't pedal, has problems with stairs and running etc. I too am extremly uncoordinated and run slowly and cannot catch a ball. I do think that telling someone off for things they genuinely cannot help will only damage them. I can't hit a ball or catch a ball not because I don't try, but because I can't. It was no good my PE teachers having a go and it didn't help. Encouragement is the only way to go IMO.
BTW I do think my son (nearly three) is clever - he can read numbers up to 100, do some simple sums, knows about the planets, is beginning to pick up words in French, knows his alphabet and can recognise words, has known all his colours for at least a year and lots of other things, so the things he can't do are IMO not at all his 'fault'. They are just part of him.

aloha, I am not suggesting for a minute anyone should tell their child off for not being able to do these things. Just that sometimes it's hard to know what's best for them in the long run. For example, when other children come round, they are already laughing at how messy my ds2 is eating. Therefore should I keep saying to him "Try and use your spoon" because he will only get better if he practises or will that just discourage him more?

Your ds sounds bright and although he sounds like my ds2 physically, he sounds quite ahead of him "mentally". Ds2 still struggles with colours and can't recognise numbers although he seems to understand a bit about counting. The paed has suggested he might have a global developmental delay and so he may not be dyspraxic at all. Certainly there's some things about his speech that I feel aren't quite right. But he loves stories and listens to storytapes well ahead of his age group so it's very hard to tell.

My 4-year old son has high-functioning autism. He finds it difficult to do things like dressing himself, holding a pencil properly etc but this is because his hands are hypersensitive rather than because of dyspraxia. He didn't need any 1:1 help while at pre-school but we've had lots of meetings with the school to discuss the problems he may have there when he starts next month.

My advice would beto talk to your son's school/teacher as soon as possible so that they know what is happening. It seems like an odd decision for the Paed to make, referring him to a clinical Psych - especially one with a waiting list of a year. You may find that the school will refer your son to the Educational Psychologist, who may be able to give you an answer much sooner.

My ds2 is waiting to see the clinical pyschologist also - I think this is mainly to do with getting a clearer picture of where his problems lie and maybe a diagnosis, and this may be why the paed has referred you here Niecie. However I would imagine an occupational therapist might be more useful in practical terms and it would probably be worth getting put on their waiting lists straightaway as these can be very long as discussed in another thread! You don't want to wait a year for the appt with the educational pyschologist just to get referred to OT with another year's wait after that.

Saker, My ds also loves books and has a great vocabulary but the way he speaks is a bit odd so, as part of his referral to the hospital, we have an appointment with a speech therapist next week to see if she thinks it is odd too. He isn't very clear which could hold him back at school. The problem is as he is the eldest I don't really know what is normal. My health visitor asked if he still dribbled which he did until quite recently as apparently his is a sign of underdeveloped mouth muscles which presumably is linked to dyspraxia again.

You are right it is difficult to know when to say please use your spoon and when to keep quiet. On one hand it is not nice if they can't do it to keep on at them but on the other hand, if he doesn't try he will never succeed. I suppose it is a case of encouraging him in the right way so that he wants to do it but it is hard when his tea keeps ending up on the floor and you have used the best part of a packet of wipes sorting out his hands! The paediatrican said that it is normal for a child who is only just 4 not to be able to use a knife and fork (or even a spoon properly in our case) but on the other hand all I have read about starting school puts using eating utensils on the list of things a child should be able to do before starting school and I have seen children his age manage perfectly well with their meals.

As for dressing himself he still has a great deal of trouble. He doesn't usually get it right unless everything is laid out for him just to slip on and even then he quite often manages to twist it so that things end up back to front. But then he just isn't interested and won't concentrate so it is hard work. I am dreading school mornings!

I still can't get over the possibility that his problem is Aspergers either. Just got a book out of the library that says clumsiness is a sympton of that too. Also his social skills are not what they should be. He is not aggressive or anything but he can't share and if other children approach him to try and play he just looks at them like they are mad! Having said he can pick up non-verbal signals if he wants to. His father says that he was like that when he was younger - a bit of a 'Billy no-mates' but I have to say that he now works well with people and is successful in what he does so I am hoping that ds will learn some social skills at school, enough to make friends if he wants to. Just so long as he is happy.

The paediatrican has referred him to an OT as well. He is seeing everybody although, as I say, the one person who can give a definitive diagnosis is the clinical psychologist and he can't see her for another year. He is also waiting to see an audiologist as his pre-school were concerned that he ignored them when they asked him to do things. They thought he couldn't hear but I think he just prefers not to hear sometimes!

Niecie, your son sounds so like my ds2! I think dyspraxics can have problems with social skills and imaginative play and this may explain some of these things, but like you I often worry that my ds2 is on the autistic spectrum also. This is even though the paed told me he didn't think he was and he does clearly want to interact the whole time within the family. But with other children he tends to steer clear. My ds1 was quite advanced with speech and imaginative play so I felt things weren't quite right about ds2 much earlier than I think I would have been if he had been my first.

We have seen the speech therapists a couple of times but can't get much sense out of them - they just say he is a "puzzle". I have the appt with the clinical pyschologist in the middle of September, and I am hoping to get more idea then.

Does your son take fish oils regularly? There is quite good evidence that this helps in conditions like dyspraxia and again they don't do any harm if he doesn't have this.

My eldest boy has dyspraxia. He was diagnosed at 5 but got no help until he was 7. We have been taking him for cranial osteopathy (plenty of threads on this!) since he was 7 & I feel it has done him the world of good. (He will be 17 next month!)

Tallulah
can I ask what your son was like when he was little especially in terms of language? I feel that my ds2 has a lot of dyspraxic "symptons" but I'm wondering if he has something else going on as well as his language is a bit odd sometimes. He can be quite repetitive - he seems to talk for the sake of it almost like a verbal fidget. Also he finds it quite hard to answer simple questions sometimes and other times he is okay. Sometimes he seems to "echo" but not meaninglessly - it's always in context and quite often makes sense, yet it isn't quite right either. His behaviour can be quite immature but doesn't really seem to be "difficult" in the same way as other people on here have described with autistic children.

I hope I'm not hijacking your thread too much Niecie.

Saker - Did I give you the link to the language disorder page I go on? My dd has a mild language disorder that has improved really well with age and the input she gets at school. It's just that some of your ds's symptoms remind me of my dd a few years back. Although my dd doesn't have the dyspraxic signs at all. My dd is 5 now

BlossomHill, Is that the spd site? I think I may have come across it on my travels but not properly looked at it. I will look further, thanks

Hi Saker

Here's the link for you:-

spdlanguage disorder

It's worth a look. I am not suggesting that your ds does have a language disorder but it is a very informative site. I regularly chat on the forum board and have met some really nice people.

Saker, I hope your appointment with the clinical psych.goes well in September and you get some answers. I have heard about fish oils and have considered it. It seems to be a bit of a 'miracle' cure for some of the stories I have read but I don't know anything about doses or which type is particularly recommended so I haven't actually waged the battle to get him to take any yet! Can anybody recommend a particular brand which is suitable for children?

Coppertop, I will be meeting my ds's teacher next week so I might well mention his problems then. The only thing that bothers me is that he hasn't had a definite diagnosis that there is anything wrong with him and I don't really want him to be labelled without there being a real clinical problem to deal with. Can the school refer him to an educational psychologist when he is being referred to a clinical psychologist already? Would the waiting list be any shorter?

Thanks a lot BlossomHill for the link - I will have a proper look at it, there seems to be loads of info on there so that should give me something to worry about for a bit .

Niecie, in terms of fish oils, a lot of people use EyeQ and this was what they used in the Durham studies. You can buy a liquid form of this in Tesco's and Boots. I use Eskimo Oil which I buy on line from www.nutriworld.co.uk. This is more concentrated so you only have to get one spoonful down not three! But I think it probably tastes worse. Amazingly my ds2 always takes it without complaint although we have to play that a different animal is coming out of the bottle each day and he is eating it up. In the past I have mixed it with jam. I do think it's worth a try - it's difficult to say whether he had any effect on my ds2 because he was at an age when he would have moved forward anyway. Although incidentally, a few weeks after he had started on it, his two side incisors at the top which had never come down suddenly appeared (at the age of 2.5!) - I don't know if that is related but I though it was very interesting

Just a quickie, I think Niecie you said that the Ed Psych is the only one who can diagnose? That is wrong, in the UK anyway. An Ed Psych would not diagnose, they may contribute their opinion but it would usually be a Developmental Paediatrician. Sounds like they are already giving you the run around.

Sorry, just found your comment and you said Clinical Psychologist. Still think my info holds though.

yep kind of correct davros. The clinical psych provisionally diagnosed ds1 a week before we saw the paed, and the paed got in a right strop about it. He told us that the clinical psych "wasn't allowed" to dx, only he was. It was the same dx anyway so all a bit of a storm in a teacup imo.

My DS5 (aged 5) does the same hand-flapping/jumping up and down and room pacing that you describe niecie. I was concerned because my DS3 (aged 15) has dyspraxia and also did the "hand flapping". DS5 was referred for assessment by the paediatrician when I mentioned my concerns at his 3 year check to the health visitor. The paediatrician was not actually too concerned when he did the assessment as DS performed well in all his tests but referred him to be assessed by the OTs as he said they did a "more detailed assessment."
We waited a year for this apppointment. I was not too worried as DS5 did not have any of the more obvious problems that DS3 had (problems with spatial awareness, unable to do jigsaws or use knife and fork, unable to ride a bike etc)
However the OT assessment showed that DS5 does have some problems with fine motor skills which are affecting his hand-writing, plus some other dyspraxic-type difficulties. She hes visited him at school sveral times and liaised with his teachers.She is also referring him back to the paediatrician as she feels that a diagnosis of dyspraxia should be considered.
By the way, my DS also hates me telling him what to do, but responds very well when the OT or his teacher help him, so try not to worry on that account-your DS may also co-operate better with his teachers.