Any advice please (LONG)

[MissWanksAlot]

Hi Everyone, Just after a bit of advice. We have put together bullet points of what concerns we have with our 3yo DS. The health visitor has been and agreed there are 'issues' But hasn't be a great help.

? Refuses/unable to use cutlery
? Unable to turn pages one by one
? Unable to peddle a bike/trike
? Flaps when running
? Spins
? Unable to catch
? Doesn?t play e.g Role play
? Either refuses to eat or will only eat certain things
? Can not count past 10
? Can not count objects
? Very OCD about things. How things ?should? be, E.g his blanket must be perfect
? Easily distracted
? Lack of eye contact
? Doesn?t always respond to name
? Unable to follow through on a task
? Very disturbed sleep( up 6-8 times a night, Always sleep talks alot
? Near or no letter or number recognition
? Lack of understanding danger
? If things are not in their right place he gets very stressed
? Likes to be by himself
? Hides away when stressed
? Unable to hop
? Can only squiggle when drawing
? Can?t blow his nose
? Can?t do buttons up
? Can?t put on shoes,Coat etc
? Doesn?t like loud noises
? Because very obsessive about certain things. eg Recently it has been pictures,

Also everything has to be a routine, If we say we are doing something we have to follow through or he will get highly stressed and hide away,He doesn't like people turning up unannounced.

He has started pre-school and has settled in brilliantly, They have a routine and he takes a packed lunch so at least I know he will eat. Any advice would be great on how to make life a bit easier, We took these points to our GP and he said that it is all normal behaviour for a 3 YO. We also have an 8 year old and never had these issues with her.

Er, most of that is not normal behaviour for a 3 year old.

Get a second opinion. Ask for a referal to a developmental paediatrician. Your HV can do it if your GP won't, but GP referrals are quicker.

what starlight said - get him referred to a developmental paediatrician.

what did the HV suggest?

The HV just said she was referring us to the early bird course and just see how he gets on. We are managing Ok but it's so exhausting trying to keep everything 'just right' I can't even begin to explain how tired we are!!

We were a bit miffed with the GP, I'm waiting on a call back from the HV now.

GP was not helpful at all (she writes being charitable here) and I feel you were fobbed off. Taking the whole list into consideration, it is not to my mind normal behaviour for a 3 year old.

HV can only do so much anyway. In your position I would see another GP in the practice and ask/insist that you are referred to a developmental paediatrician and let this person assess your son further. Do not take no for an answer!!.

What does your gut tell you?. When did you first start noticing or thinking that something was not quite right here developmentally with regards to DS?.

I would be concerned reading such a list; off the top of my head I thought he may well be somewhere on the autistic spectrum (he is also showing some sensory problems as well with regards to both food and noise). Have you read anything at all about ASD?. He is certainly having problems with co-ordination too and anxiety (that could also be ASD related) in response to any change outside the normal patterns. Would also suggest you film your DS playing at home or when he is with his sister.

I am glad to read that he has settled in well at preschool but you do write they have a routine and he will respond to that well. If the routine changes then he and thus you may well encounter difficulties. It may well come to pass as well that the preschool say something to you after he has been there a few weeks; they may well come to notice he is having real difficulties within this environment.

Write to the GP. List the thing again. Remind him/her that you came in for an appointment and that you were told these things are normal.

Ask him to refer you to a developmental paediatrician as a matter of urgency and reply to your letter with the name of the clinic he/she has referred you to. Explain that any delay to assessment and investigation will mean your child could lose out of vital early intervention.

I would second what Starlight has advised you here. You do not need a frankly to my mind useless GP messing you about. You need to see someone like a developmental paed who has experience in such a field and who hopefully knows what they're talking about. Hoever, such appts can and do take some time (some months infact) to set up. You may want to see a developmental paediatrician privately; its an option anyway.

does your surgery have another GP? I would go back (take your DP if possible) and put your foot down. GPs and HV can often sometimes be dismissive.we had a long struggle as well to get DD referred. or can you ask your HV to refer DS?

I am very sorry if this is the first time people have agreed with you and hope you don't find it upsetting. I know I did the first time someone said 'I think you are right about DS'. But that isn't 'normal' behaviour and I agree with the others that you need an urgent pead referral. Don't take no for an answer. And best of luck.

Wow you lot are fab! I thought that maybe it is normal and maybe it's just his 'ways'. I started to notice over the past 18 months his obsessions have got worse,

He's never slept alot and his eating just changed suddenly when he was about 2.

It's the obsessions that really get me, Even down to what duvet cover he has on his bed. I stupidly brought a different flavour toothpaste the other day and as soon as he put it in his mouth he knew and had a massive melt down.

His poor sister bears the brunt of alot of it, If she sits somewhere that isn't 'right' he goes in to hiding and scream at her and panics if she doesn't move. He will 'play' outside like jumping on the trampoline but he doesn't get the idea of roleplay, We brought him a toy kitchen and food etc but he didn't get how to do it and copied his siter by putting the food on the plate and bringing it to us but if she wasn't there he didn't get what he had to do.

He will sit next to her and do his own thing but won't join in with her.

I think the videoing is a really good idea, Think I'm going to do a diary with things that trigger him.

Thank you everyone :-)

Yes, sorry if this is the first time you've had people agree that something needs to be looked at.

We're a bit blunt and to the point here I'm afraid.

However, no-one is saying that their IS a problem, we just all agree that what you have written merits further investigation and your GP should not have dismissed your concerns.

I wonder if the GP dismissed a bullet point list because it might look like you have printed it off the internet. A few real life stories/examples about each of the points might help you to make your point.

The eating changing suddenly thing is common with a lot of our kids. Serves me right for being such a PFB weaner. I even used to bake my own beans! Now I fall on a tin of Heinz like I used to fall on a glass of champagne

My Nan surprising brought alot of it to my attention (we spend alot of time with her) She is BRILLIANT with both the kids (don't know what I'd do without her support!) My mother on the other hand says he needs a good smack...But that's a whole other thread!

People just don't understand and say we pander to him when we help him get things how he wants them but if we don't he gets so distressed and then hides away.

It's so bloody hard some days, We have great days and we have really shitty days, But we just try to make things easier for everyone.

He has been referred to speech threapy which he starts Monday and has got the hang of signing which helps when he goes in to hiding or is highly stressed or we don't understand what he wants.

I like people to be honest and to the point

Starlight that's a good idea about examples etc, That's what I was thinking with the diary, Triggers etc?

Yes apologies if we sound a bit scary but he sounds an awful lot like my DS at that age and I wish I'd had advice sooner. He may be typical for a three year old but it's always safe to get a paeditritian to check him out, he does sound as if he could be on the spectrum. This is not a bad thing though, a lot of children are on the spectrum, not like 30 years ago when ASD was basically split into 'rain man' and 'normal' catagories. Health visitors are trained now to spot little quirks to help the children as they develop.

Funny about the eating changing at age two. I have a photo of DS1 tucking into a bowl of pasta puttanesca with tomato sauce all over his face at about 20 months and I marvel that it's the same child!

at lostinwales - I have that same picture!

The eating side of it is so hard, Even the smell of some foods make him gag or just the look of it. He likes all his food separate and not to be touching at all. He uses his hands for eating, Doesn't really get how to use a knife and fork.

He is a lovely little boy and is so funny, His obsession the past few days is Just Dance on the Wii, Just one song that he will repeat and repeat for hours, He is quite partial to spinning and being upside down.

What a sweetheart! Have you read any books about ASD? I would tend to stay off the internet until you have a diagnosis (or not) as it can become a bit bleak, but there are some great books like 'The out of sync child' which are illuminating and help explain some of the reasonings behind the behaviours.

I'm sure others can recommend further reading, I did a lot at the beginning of our journey but don't do so much now.

The earlybird course is for parents of newly diagnosed children with ASD. It seems a little premature for the HV to refer you to that course prior to actually referring you to anyone who can actually diagnose or offer advice on your DS.

Agree, that you need to get referred to a paed.

Are you keeping in close contact with the pre-school? Have you raised your suspicions / concerns about your DS with them. They will be a valuable ally moving forward and in getting help for your DS.

I would be reading about ASD and re websites I'd be reading these pages and the National Autistic Society's website.

Do speak to the GP again and insist that your DS is referred onto a developmental paed. Would also look into private based referral to such a person as well.

Keep a close eye on how things are at preschool - as mentioned before they could well start mentioning things to you re DS when he is there. If there is a Special Needs Coordinator there I would be wanting to speak to this person now.

You are his best - and only - advocate here. You are truly in the best place to fight his corner for him. This is also because no-one else will.

I've not looked up on much, Because I've never thought he has ASD and just assumed he was a wee bit behind and maybe highly strung.

I am fiercely protective of both my kids, They were both born very early and alot of the doctors have always said he may struggle because he was early. Hmmm it's amazing how different you feel when you write things down.

The past few days are the only real time we've got everything down and really looked at how he is.

I keep waffling I know, I'm really sorry! I'm going to go back to the GP.

I spoke to his Key worker when he started and this morning again and she said there have been no issues as yet and he's really taken to it, However I have noticed that when he comes home he gets really aggitated and we have a worse nights sleep after he has been... Do you think the 2 can be connected? The GP said that if he is doing fine at school there is nothing to worry about..

I am so confused :-(

"I spoke to his Key worker when he started and this morning again and she said there have been no issues as yet and he's really taken to it, However I have noticed that when he comes home he gets really aggitated and we have a worse nights sleep after he has been... Do you think the 2 can be connected? The GP said that if he is doing fine at school there is nothing to worry about.."

Some GPs can be all too dismissive with ultimately disasterous results. You need to be persistant with this GP or preferably another one within the practice and seek answers for your sake as well as your son's. Your son really needs a specialist referral.

Some children can bottle up all their frustrations within a school type environment only to lash out when they get home because it is safe to do so.
This can happen also because their additional support needs at preschool or school are not being met.

I never thought of that, Thank you all so much for your advice and for listening to me go on!!! I am going to go back and see someone else. And be persistent!

Good luck with it all, and welcome to MN SN.

Hopefully it is just a fleeting visit but if not there are some fab people here that can help, if bluntly

Look at MCHAT and score it to see if signs ASD
Totally inappropriate to be referring you for earlybird without actually establishing if poss ASD! Doubt you would get a place anyway without serious support from professional it is ASD. Also be unfair to throw a parent into the deep end of ASD without actually telling you your child might have it.

Hiya MissWA

Do bring the list when you go back to the GP, as said above some examples of what you mean will help show that you're not being paranoid. If you leave a copy s/he can enclose it with the referral letter and it'll save them some typing . EVEN MORE IMPORTANT (sorry to shout)to bring your nan. Much harder to fob off the older generation as just an overanxious mum!

Tantrums, not blowing nose, liking his routines... these things can all be normal at 3 years old, but when they are different in intensity and severity it merits checking out. In most areas you can self-refer to a speech therapist via the childrens centres, and I'd recommend you try to do this as well, they do social communication problems in general and not just 'speech'.

Hope you get the referral and the problems either start to get sorted or resolve themselves.