OT and physio report received - inconclusive - what next?

[Ben10isthespawnofthedevil]

Very very long sorry.....

DS (aged 5.8) was referred to the CDC by school due to concerns with fine motor skills, poor balance and inability to sit on the carpet. we have had all sorts of issues as I have listed below against the Dyspraxia Foundation website - also provided to them during the assessment.

The report that I have received today doesn't really help as there is no diagnosis, no linking of behaviour and physical issues and they said that they will give him one OT session at school and then be discharged and leave the school and home to deal with his issues.

Where do I go next? I am already going to ask GP for referral to Behavioural Optometrist following recomendations on here. Should I also ask for a Paed referral as their recommendations don't feel that they are going to help me hugely esp with things like needing to go shopping, refusal to walk, tantrums etc

The report says:

1. He behaved himself during the assessment
2. Posture - He sits and slumps taking up all support offered to him - work on core stability
3. Visual motor integration - percentile score of 4 on Developmental Test - below average
4. Movement ABC - manual dexterity 37th, aimign and catching 50th and balance 27th = overall 37th percentile so average and no movement disorder is evident.
5. Sensory Processing - They have noticed that they did not observe him being very fidgety as it was 1:1 with regular change of activity
6. Daily living skills - difficulty with dressing, cutlery, wetting at night

Recommendations:

1. Fizzy
2. Caring Cutlery
3. Support feet during meal time - will buy Tripp Trapp or similar
4. Long loop scissors
5. Continue to use move and sit cushion that I have already bought
6. School to consider his position in class
7. Regular breaks at school
8. Use chunky pencils

My list of issues is
By 3 years old

Symptoms are evident from an early age. Babies are usually irritable from birth and may exhibit significant feeding problems.
Jacob was born three weeks premature. He had reflux from birth although he was breast fed. He was a difficult baby who required feeding very often and had to be propped up both in his cot and on the floor. He was not able to have tummy time as he would not tolerate it.

They are slow to achieve expected developmental milestones. For example, by the age of eight months they still may not sit independently.
Jacob sat independently at 8 months. Crawled at 12 months. Started to walk at 18 months. Started to speak at 24 months.

Referred to SENCO at nursery for behaviour issues including spitting

Pre-school children - 3 to 5 year olds

Very high levels of motor activity, including feet swinging and tapping when seated, hand-clapping or twisting. Unable to stay still
J cannot sit still on the carpet at school. He lies on the floor or rolls under the table. At home he finds it difficult to sit still at the table. He spins around or moves his legs around. He will often climb around on the settee at home.

High levels of excitability, with a loud/shrill voice
J often talks very loudly especially when tired and does get over-excited which often leads to being told off due to the volume or it getting out of control.
May be easily distressed and prone to temper tantrums
J has very bad temper tantrums which he finds it very difficult to get out of.

May constantly bump into objects and fall over
He knocks things over and stands on things that are on the floor. He trips over his own feet whilst out in the street quite often. He sometimes doesn't appear to know where his body is ? ie he will dig in with his elbows or knees when trying to cuddle us.
Hands flap when running
He tends to use just the right arm to run with and his gait when running is much more uneven than his friends.
Continued messy eating. May prefer to eat with their fingers, frequently spill drinks
He cannot use a knife and fork. He often eats with his fingers or just the fork in his right hand using his left hand to help the food onto his fork or spoon. He spills drinks which means that I normally give him a half cup. He will squeeze the carton of juice too tight sometimes so it spills everywhere.
Avoidance of constructional toys, such as jigsaws or building blocks
He is very good at puzzles but can't see the difference between the edge and middle pieces. He needs to find the pieces that look the same first.

Lego is very difficult for him to use the ?grown up? version as the pieces are very small but he enjoys it. Meccano is also very difficult ? even the junior version as there are too many pieces to hold and move and he has to have a lot of help.
Poor fine motor skills. Difficulty in holding a pencil or using scissors. Drawings may appear immature
J does not use the proper grip for a pencil. He cannot cut straight along a line with scissor and his drawings are very babyish and do not depict what he wants to draw.
Limited creative play
He has lots of action figures and toys but does not play with them very much at all ? despite wanting them at the time.
Isolation within the peer group. Rejected by peers, children may prefer adult company
J does not appear to have lots of friends but has a few that he appears to be closer to. He has one close friend (who has ASD).
Limited response to verbal instruction. May be slow to respond and have problems with comprehension
Jacob has to be reminded often what he needs to do. He initially understands the instruction but then due to lack of concentration he needs constant prompting. He talks over other people all the time.
Limited concentration. Tasks are often left unfinished
As above. Often forgets to wipe when going to the toilet.
Sensitive to sensory stimulation, including high levels of noise, tactile defensiveness, wearing new clothes
Hates having his hair or nails cut. Can't stand itching of the hair and says it hurts when he has his nails cut. At nursery, I sometimes took him to nursery with no clothes on as he refused to get dressed and had screaming tantrums. He hates shrill sounds such as a drill or loud hand-dryer. He often gets into a very over-excited/meltdown state in supermarkets (not sure what the stimulus is for this).

By 7 years old

Difficulties in adapting to a structured school routine
It appears so
Difficulties in Physical Education lessons
Having observed a PE lesson in the playground, he was unable to follow the instructions of the teacher including standing on the line or throwing the beanbag as he was meant to be.
Slow at dressing. Unable to tie shoe laces
Very slow at dressing. Clothes are often put on the wrong way round.
Barely legible handwriting
Yes
Immature drawing and copying skills
Yes
Limited concentration and poor listening skills
J gets in trouble for not concentrating on his school work which leads to him missing his golden time. Apparently he is now disturbing the rest of the class as the teacher has to spend so much time with him.
Inability to remember more than two or three instructions at once
Yes. Leads to activity not being completed without prompting or lists. J often writes lists at home (on his own doing) of what we need to complete that evening/day.
Slow completion of class work
Yes
Continued high levels of motor activity
Yes
Hand flapping or clapping when excited
Tendency to become easily distressed and emotional
Problems with co-ordinating a knife and fork
Yes ? he cannot do this at all. He eats with just an implement in his right hand and uses his left fingers to assist.
Sleeping difficulties, including wakefulness at night and nightmares
Waking at night to urinate despite reducing drinks in the evening. Often wets himself. He needs to have a set routine at night otherwise he is not able to settle ? rhis makes it diffiult to take him out in the evening. Has to have a potty in his room as often wets himself on the way to the downstairs toilet. Too big for potty so then wets floor.

Walking ? J finds it difficult to walk any longer distances and often refuses to walk meaning that he has to be carried as we no longer have a pushchair. He says that walking hurts his legs and feet and also makes him very tired.

Bathroom ? J frequently makes a huge mess in the bathroom, pouring whole bottles of shampoo etc into the bath and pouring water all over the floor

Lights ? J constantly turns lights off in the house despite being told not to.

Bike ? He is terrified of the balance sensation without the stabilizers or even if the stabilizers are raised a bit

Tantrums - He often gets out of tantrums or apologises by writing me a letter.

Sorry. That really was long.

oh yes a paed ref deffinately and sooner the better to get yr official dx so as to get more specific help it was long but thats a good thing if you take all that to gp they can hardly NOT refer you can they my sons ASD and says same thing btw he say my legs and feet hurt we had his pushchair for up the city shopping and days out till he was 6 but after that my DH said no more pushchair so i got rid oof it and yes for a while he wanted us to pick him up in stead but goodness DS is 10 now hes far to big lol hes same height as me im 4ft10 haha and weighs a ton but hes always squishing me at night to watch tv and have a cuddle on my lap bless

It's interesting to see what they've said to you as ds1 is due to be assessed and sounds quite similar in level of difficulty to your ds.

I hope one of the very wise ladies here can give you some advice on how to proceed... i'll be lurking with interest.

Thanks ladies. I have to say that I have had a little tear - mixture between frustration and wanting everything to be OK.

I just don't feel it is right that I have just had to buy a high chair for a 5 year old and cutlery that looks like baby cutlery. I know that we are very lucky that he does ONLY have these issues and I know that Tripp Trapp chairs are often used by bigger children but to me it is a highchair and we stopped using one at least 2 years ago.

On one hand it feels like them saying - yes you need go and buy all these things as your son needs them but he is pretty much average. I have seen average and a lot of the stuff that we have is not average.......

It sounds like you are describing my son, every single one of the things you list in the preschool part, he does! He is 3.9 and has a sensory processing disorder. We see an OT weekly but it is privately as the ot's in this area don't see anyone with this issue. If you can possibly afford it I would definitly look into getting an independant ot report with an OT who specailises in (or who is qualified in ) sensory integration therapy. (Most dont!)
Our initally assessment was about £550 I think.
Also I think places like bibic may do some sort of assessment regarding this but others here will hopefully post if they know if this is the case.
The first step is to get his problems recognised, then you can more easily deal with what he needs etc.

Feynman, that is really interesting. I thought that would be the DX too having been reading constantly since October when the school initially raised their concerns. I did think that the OT might pick up on some of the symptoms from the list but just mentioned that he doesn't like his hair cut and doesn't mind labels etc.

I have researched the costs locally and our most local clinic would undertake a morning's assessment at this clinic which would include clinical observations, motor, sensory, visual motor and visual perception evaluation and can confirm a diagnosis or otherwise from that assessment. The assessment would start around 10.00am and then a report would be provided with attendant strategies and recommendations 2-3 weeks later.

The cost is £430 for the full assessment and report.

Therefore the cost seems reasonable compared to yours. Is it worth getting the Paed appointment and waiting for that or just getting my parents to fork out for the assessment? Is the Paed actually going to be able to say anything??

Thanks again

Ben10 - i would go down the paediatrician route. Take all the evidence you have, but also take video footage of when he is not behaving. It really winds me up that they 'perform' on the day. In fairness though, my DS also performs at school as well. They obviously get the issues with writing, organisational skills,messy eating, sensitivity, getting dressed/undressed for p.e. and his general speed, but they have some strategies for most of this. They don't get the meltdowns, the rages, the thrashing out, the non-compliance, lethargy - particularly if asked to walk anywhere, the fact that i still have to part dress him for school, remind him to do all the basic self help jobs that my 3 year old can do. The paediatrician will want to see evidence of this if your DS has not shown it in his assessments. Your DS might perform on that day as well.
My DS got a dyspraxia dx pre going to school. tbh, the first school he went to it made hardly any difference. The school i moved him to are much more pro-active in finding strategies for him to keep him in line with his peer group.
I'm not saying that a dx won't help, but it's the help you receive in finding ways to improve your DS's ability that makes the difference.

Thank you Auntevil. I didn't think about video evidence - I am sure that it will enrage him even more but at least then a professional will see him. He does "perform" at school but the school see a lot of his behaviour as just naughty..... I am loathe to have to spend out hundreds of pounds when a private OT might just say exactly the same as the NHS one. At this rate, there is no hope of me ever claiming any DLA towards the extra washing, driving, equipment (which I niavely thought would be provided) etc etc

Last week I was counting how many times I had to remind him to get ready for school. At 15 times, he then brought me a list of numbers 16-22 for me to check off in case he forgot to get dressed again!

This is classic DS "They obviously get the issues with writing, organisational skills,messy eating, sensitivity, getting dressed/undressed for p.e. and his general speed, but they have some strategies for most of this. They don't get the meltdowns, the rages, the thrashing out, the non-compliance, lethargy - particularly if asked to walk anywhere, the fact that i still have to part dress him for school, remind him to do all the basic self help jobs that my 3 year old can do"

I'm not sure what I would do if I didn't have Mumsnet at the moment. The only person that I know who has gone through the whole SEN shebang has a DS with ASD where he is violent and disruptive so has had help all the way through from nursery and school as they couldn't manage him. There also seem to be many support groups if you get an ASD DX compared to any SpLD....

BTW not putting down the difficulty of an ASD DX, more pointing out why I am struggling.... I have seen and experienced enough with friend's DS to see how difficult children with ASD can be to manage.

Hiya-I would say he sounds very very similar to my DS who is 5 with motor dyspraxia,verbal dyspraxia and finally with ASD traits. It is really really worth pushing for a diagnosis...dont be fobbed off-initially we were. However ironically the fact DS has moderate verbal dyspraxia was actually his saving grace as it got us in the system with intensive speech therapy. I pushed to see a developmental paed who diagnosed hypermobility and mild hypotonia (wonder if your DS has this as he is complaining when he walks a long way-maybe joints are hurting??). We then had to really push to see an OT where his scores were worse than your DS tbh. He then saw a sensory trained OT (and we also pay for retained reflex therapy). We also got him statemented at school after a LONG fight-but the 1:1 it supplies is invaluable.
HTH

Thanks Oddgirl. DS doesn't have any verbal dyspraxia and I did ask the physio to check as I am hypermobile (hence my current longterm absence from work with neck pain) and apparently he doesn't have this problem. I will be asking for a paed appointment with the paed that my friend whose son has ASD as I know that he has been very supportive. I am very scared of the cost of private sensory OT. We have very little spare money at the moment.

oddgirl... funny you should say that as my ds2 has oral dyspraxia and is already undergoing the assessment of need process at not quite 2 and has had massive amounts of intervention whereas ds1 is 'only' motor dyspraxic and it seems to be more of an uphill slog to get people to respnd to us.

SALT have been ds2's saving grace too, they've monitored him closely, referred us to better paeds consultants, referred us for sign language training and started us on the assessment of need process.

Your OT report sounds simlar to Dd3's, it stated that Dd3 is hypermobile in some joints, has some motor difficulties[16th percentile] and visual perception difficulties[23rd percentile] and then they discharged her because she could write their sentence ok and school said they could see no problems..

I went to the GP to try to get some more advice but all he could suggest was that I phone them and ask for a follow up appointment.

Dd3 is being assessed by CAMHS but they don't really look at the physical stuff either.

If you have any community paeds in your area [we don't] ask to be referred to one they seem to look at the child as more of a package.

I know what you mean about paying for private, their is no way we can find the money, it makes me sad though because I think there are so many things Dd3 would benifit from.

Don't give up, I am sure you will find someone to help your Ds it just takes time.

Summerrain-sadly I think it tends to be because s and l issues are seen as an educational need and motor skills as a health need so it is extremely difficult to get OT written into a statement particularly within the mandatory bit. This is so so misguided because good, regular OT can make the world of difference, particularly with some of the sensory stuff. Its a frustrating and deeply unfair system which means if the private route is an option to you, you will get seen, if its not, your on your own after a couple of OT sessions.
But if you get Madeleine Portwoods book or Hazel Carrs book about dyspraxia, they give some really excellent advice about appropriate exercises and intervention which can really help.
HTH

I have the Madeline Portwood book from the library but I do have a sense that I am fighting this by myself at the moment. It feels like the school think that I am always trying to excuse his behaviour.

Ineedalife - I really feel for you . My parents would pay for private assessment but it just feels so wrong that for our children who are differently wired than others, we have to pay and prove their difficulties.

There is no way that I want my child to either become disaffected with school or to underachieve due to his inability to concentrate or sit and listen. I want him to be able to walk down the stairs at school like everyone else - not like a baby one foot at a time. I want him to be able to go on a swing without freaking out. I want him to be able to eat his school dinner with a knife and fork without using his fingers and pouring it all down his top.

My friend whose son has ASD has emailed me to tell me that there was no diagnosis of her son's sensory issues in the report from the same CDC so maybe there is hope yet. Will do the behavioural optometrist (NHS) and try to get a paed appointment - it does appear that we have community ones and see how it goes.

Thank you ladies, I am much calmer than I was yesterday thanks to you . This whole thing isn't helped by me being on long term sick leave from work due to my neck pain so I have lots of time to dwell.......

ben10 It's frustrating watching your child struggle with the simple things isn't it Community paeds sounds like a good move though, a good paediatrician will look at the child as a whole wheras SALT, OT, etc can be very blinkered in their analysis (not all of them I hasten to add, ds2's SALT team are brilliant and actually gave me some fantastic advice on ds1 as well).

dp has to constantly remind me not to obsess and worry about the boys, as he says; 'All we can do is support them, guide them and wait it out to see what the future brings. Worrying won't change the end result'

Thanks for the book recomendations oddgirl, will check them out. Ironically ds1's issues only became a problem when he started school, up til that although we knew something was amiss it didn't affect him enough to seek referals and dx. But within 2 weeks of him starting school the teacher had raised concerns.

Hi again, I would definitly go for a referal to a paed, however we have seen two now and both acknowledge some issues but do nothing beyond say 'may be x y or z' we'll wait a bit longer and see.
TBH the private OT who specisalises in sensory issues has been worth her wait in gold. It is expensive, but if your parents are willing/able to pay I would definitly saw it would be worth it.
At the very least if they say they see no problems then although you've spent the money you will not keep looking down that road.
That said given what you have said I very very much doubt that that is what they would say.
If they do confirm your suspicions then at least you have a report which you can share with school which will hopefully go so way to explaining his problems and will hopefully suggest strategies for helping.
Finally it may well be that the NHS OT will not comment on sensory issues either becasue they are not trained in it (most aren't) or becasue they cannot offer any therapy for it.
Ours won't even see my son as 'they don't deal with sensory issues' only children who are seriously physically disabled.
Obviously only you can make the choice but it was the best move we made.
We have also just recieved a statement for my son. Im pretty sure that without the ot's report this would have been really difficult as preschool do just see him as naughty, non-compliant and a bit quirky.

Thanks ladies yet again. Fenyman, it is interesting to see that you managed to get a statement for your son. I didn't think that would be possible given the resistance that I have had so far. The private OT is looking cheap at the price at this rate

Ben10 - we don't have a statement, just a dx. I totally get Summerrains point about SALT intervention being a good route - if you can get it. My DS was with a really good SALT to start - but as he is 'fine' now, he has been discharged.
My saving grace was moving school. MS with a disability base that has OT and SALT within to call on for strategies. Within the first couple of weeks he had assessments by OT, Physio, SALT and EP. Plans in place, equipment given (slopes, cushions, stress toys etc). Within a term and a half he was a different child. I have only seen improvement on his educational abilities - which in fairness is what i want from a school.
As he is relatively angelic at school - they have not looked to any strategies for behaviour that they do not see. Which again is understandable. So i have asked for a re-assessment to 'fine tune' the OT programme and Physio that he has - and hope to raise the social aspects too.
We had a bad weekend with him re trainers. He is now size 3.5 and every single trainer he liked was lace-ups. I've found some on-line that he likes - but there was nothing in the many shops we went to (and the ones that did - didn't have his size!) As he said - it's not fair!

auntevil.... sketchers do 'bungee' trainers that just slip on, no laces or straps. The sports shops usually have them but there are loads of online places selling them. The fit is usually perfect so if you've had his feet measured recently ordering online should be ok.

The last pair of runners i bought ds1 has straps and he won't even do those so we've gone a step backward in the putting on of shoes department... he has hysterics because they're not tight enough and won't even try to put them on himself anymore.... I paid too much for the damn things to get him a new pair yet though, he grows out of shoes so fast anyway he'll need a new air soon either way. >

have to go collect him form school now and bring him to the dentist about the tooth grinding... fingers crossed they can seal the teeth where he's exposed the quick [ouch]

Summerrain - ooooooooh - that's made my teeth go on edge. I can cope with pretty much anything except teeth stories - i'm such a wuss!
We have to be careful with anything that is a slip on as DS has very narrow foot and high instep. I have to hold my hand up to this genetic detail! His saving grace is that he is a DS and not a DD. Just imagine all the shoe types that a DD wouldn't be able to wear!
We also had to buy the 3rd pair of school shoes since September. He kicks the living daylights out of every pair.
Good luck at the dentist - let us know how you get on.

thanks, i'm not holding my breathe though.... bet the free dentist won't do anything, i'll probably have to bring him to our dentist and pay money we don't have to get it sorted.

skechers do a few straped shoes too, I'm pretty sure they go up to larger sized although ds1 is a 10/11 so i could be wrong. All mine have my wide flat clodhoppers so slip ons are our saving grace! Funnily enough ds1 is good with shoes, it's my supposedly NT dd who kicks the hell out of her shoes within hours each time

AuntEvil - have you thought of elastic laces. Like these or similar. They are what triathletes use so maybe they could be a selling point as they are not disabled specific.

He has no SALT issues apart from very loud speech and find it difficult to whisper and talking over others - no idea if they are SALT related.

The school is 3 doors away and is a primary school. We moved here specifically due to location and ease of breakfast/afterschool club. If possible, I want to keep him here. Your school sounds great. I am jealous!

I have found at the Essex county hospital they have a Vision and Multi-Sensory Therapy clinic which we can attend at no cost. The only cost would be coloured lenses if required. I am so excited! Have also applied for a Bankers Benevolent Fund grant towards private OT. Is there a grant that you may be able to apply for based on your/DH's occupation.

Am wincing at the teeth grinding Summerrain. Hope you get it sorted.

ben10... turn taking is definitely something SALT try and build on as are inappropriate speech habits such as talking too loudly. It wouldn't hurt to have them take a look, worst case scenario they assess him and tell you they don't need to work with him.

dentist was a bit of a bust.... ds1 spent more time getting to ride up and down in the chair and play with the light than being examined. Dentist has told us to dab sensodyne on them and hope that he stops grinding them as if they get too bad the only course of action is extraction. He said 'I don't know why they do it and I haven't a clue how to make them stop'.... great