I hope I'm just PFB but I'm worried- srry this will be long

[onenutshortofasnickers]

Hi I have my DS who is 21months, turns 2 in Feb; and I'm a bit worried about his development; social and understanding sort of things really but will give you a back story-

At around 9 months he still couldn't sit up and the HV was starting to get worried and schedule more visits then he suddenly learnt a little after that. (she is a lovely brilliant health visitor!)

He was also late with walking, can't remember exact age but we had the same sort of thing where we were starting to worry (myself, DH and HV;) but he suddenly 'got it' and all was okay, however the gap this time was a little bigger, iykwim?

Anyway he still isn't talking but constantly babbling his own language; he can say words like; mumum, dada, nononon, yeahyeahyeah but he never uses these in context and never calls us mumum or dadad and he apparently says car but he has never in front of me only MIL, I think he says them because they are a sound he can say and uses them but he doesn't seem to know how to use them etc.

He also headbuts; normal toddler behaviour I know, but it got so bad the other day nursery rang and asked me to collect him because they could calm him, he headbuts over everything when frustrated and keeps doing it even when it hurts him. e.g. I go to pour him a drink but he gets impatient and headbuts and screams. He can't understand that I am getting him his drink even though I explain it and if feels like he thinks I'm keeping it form him? I don't know, I can't explain well. It's just all the time.

He just doesn't seem to understand anything you say to him, questions or anything; we talk to him all the time and read to him constantly (he loves it when you read to him.)

He doesn't point to things and he loves his toys cars but if I was to ask him to pick up his car it wouldn't even register.

Feel free to ask questions, I know I have left loads out because I can't think what to write and what is relevant etc but I'm just worried.

I'm also pregnant and he doesn't understand that or even get babies, he has had lots of contact with babies but I think he thinks they are just a toy or a doll, he really doesn't get that at all.

I explain things to him in an age appropriate way when chatting and playing with friends but he doesn't get it or seem to listen.

the reason I am worried is because everyone is making comments now and always have tbf. But I mean everyone, he has friends older and younger than him and relatives, friends etc just everyone now.

He does understand no though - he doesn't like that word!

We are seeing the HV during the week and going into Nursery to have a chat about it all; he only goes one day a week, term time only (all we can afford, it was to try and get him a bit more there socially; he is always seeing friends though and other people, I just thought it might help, he seems to enjoy it, he just likes the toys!)

I'm not so worried about the speaking more the lack of understanding, he doesn't seem to understand at all.

He's not that bad, but I'm just at a loss; he really is a happy boy though and loving and affectionate, he sleeps through (I'm very lucky!) He eats pretty well, likes his fruit and veg, he likes people, he isn't a stop and listen or chat sort of boy though he is just happy for them to fuss him for a bit but go off and play in his own little world.

Sorry it's so long, if all I need is to be told to get a grip that's fine.

Thank you if you read it

oh god all those gramatical errors, typos and spelling, sorry still on phone and it makes it very hard to do posts

Hi sorry to keep posting I have started another thread here in Special Needs: Chat hoping to hopefully hear from people who have first hand who have been through the system, can't think of a better way of putting it.

I am still grateful for all the advice and if anyone wants to post please, please do, either in this thread or the other thread; I really do not mind, I'm just grateful that people have taken time to read and respond to me and am grateful for any advice!

So thank you

have not read all the replies but this is my advice:

• get hearing test sorted
• get referral to a developmental Paediatrician
• referral to SALT (I would not wirr about the lack words but about the lack in understanding and not communicating e.g. not pointing)

do the M-chat and if it flags up anything let GP or HV know.

Do not let them fob you off.

www.m-chat.org/mchat.php

www.m-chat.org/mchat.php

hi choc thank you for posting, all the things you have suggested have been done; hearing test a while ago and ds hearing was 'perfect' (testers words,) test has been done online and referal has been made by hv to play specislist and senco (i rang to confirm with her,) and depending on the outcome of them is whether there will be a referal to salt.

thank you for posting; i think that online test should be made known, it is very useful.

referral to senco? I just made an appointment with the senco, you don't get referred to the senco . who want to 'refer' you?

tbh, your post has a few red flags and if it was my DS, I would want a full developmental assessment and you need to see a paed for that.

likewise SALT for his speech and language difficulties.

waiting list are very long in some areas. I think.you are being a bit short changed with the referals made so far.

you

I dont know 100% how it works and I wasn't aware you could just make appointments, because you can't in our county and we are being referred to the SENCO and play specialist who is in our area and taking it from there.

We are not close to any hospitals we are rural which might be why and as county's here are so close alot of nhs services cover several areas/county boarders.

I don't think I'm beimg short changed at all, I'm happy referals have been made and my hv rang yesterday evening and said hopefully I will see the SENCO person before christmas (play specialist rang and am seeing them end of next week,) then depending on what they think there will be a SALT referal, around here I am of the understnding you can't just walk in and book appointments; you have to at least be sign posted to them, also I'm not sure what this stuff is about seeing a peadatrician(sp?) because are they not at hospitals? Surely if it got to that point it would be a specislist consultant? I honestly have no clue, I do know you can't just ring up and access certian health/nhs services you have to be refered at least by a dr.

It's reassuring to hear about your son and that the dr thinks there is nothing wrong, I hope there isn't anything wrong and he catches up soon enough. Hopefully the referals will be fast and you recieve appoinments quickly, I too wish I had pushed sooner as now we are getting to the holiday period there will be a large break over christmas adding to the in limbo wait!

and choco the hv said she was refering us to senco (obviously a person to assess.) I don't really understand the face? sorry

lady came to see ds and suggested a load of activities that he will just not do because I try crafts alot and he hates it and gets upset- he doesnt like colouring - a load of them will end up being me doing it.

Everything else we already do, she was speaking to us as if we didnt know how to talk and play with our own child- she mentioned she is used to going to peoples homes where the telly is always blaring jeremy kyle and how refreshing it was to see the telly not on...

i feel like she is yet another person who judges us on being young parents and spoke to us as such- it was a waste of time she will come back mid dec to see if there are improvents which I dont see how since we have always been doing what was said!

the irony is she isn't a play specislist like I thought just a nursery nurse....like me- so that was pointless!

When she left I just felt like I had been patronised the whole time and not listened to about the activities not even being doable with him; she just brushed it off and said to try; I am! I have been doing all the things you have been saying since from the begining and nothing, this is why I'm worried.

So it was pointless and I feel worse and she will come back and probably just suggest I do more and I'm not happy as looking at his learning journey it looks as if they don't even know him; it looks like they saw he cpuld do one thing in an area of development and the presumed he could do the rest.

and the ils have started on the 'he is fine, he understands, nothing is wrong, there is too much fuss, these people dont know what they are on about...'

great!

so where do i go from here?

ok - first the senco referral. the senco is basically just a (nursery) teacher with some extra training re SN.

a senco cannot diagnose anything at all. he/she is not meducally trained. such a pointless and meaningless referral. seems your HV is rubbish (mine was as well).

what you will do:

• call your surgery to find out the phone number out the number for the Salt department and self refer.
• make a list of all your concerns about your DS and make a GP appointment. you need a referral to a developmental paed. take your DH with your (GP will take you more serious that way).

-sideline the HV if she is useless

and pop over to the Special Needs Children board :)

Hi OP, the main thing that struck me about your post is that your son is really young - it sounds like some of the things you are trying to do with him might just be too advanced - for example nursery for social skills - there is no evidence at all that nursery helps social skills in the under-3s and he might well learn more with you talking to him and listening to him one on one than in a group. My dd is 2.6 and hardly talks - I have been worried - so we are focusing on lots of singing and chatting at home, we play on the iPad together as there are lots of great apps for this age group. She is not interested in crafts and certainly won't colour in - that is a weird thing for them to suggest IMO.
Someone suggested to me looking on the 'I Can' website for ideas - have you found that? You are the best placed person to help your son - you are with him much more than any therapist will be and your time with him is much more significant than anything else. It sounds like you are doing the right things so I would keep going - fwiw my son is only just starting to 'get' socialising aged 5.5.

Don't dismiss the value of the help from the play worker. You probably know more than her but you can use her as a sounding board for discussing approaches and dedicated time for you to think how you can play with your son and enjoy it. It all seems very early to be worrying. I would definitely push for as much help as possible for him. It can't do any harm but also enjoy your son without spending too much precious time worrying. It will become apparent over time if there really are problems. But all children have so many idiosyncrasies when young it's difficult to tell.

Hello

I would go straight to GP with your MCHAT score and ask to be referred to a Developmental Paed.

The people you need to listen to are those like chocnomore who have been through this. Other people tend to focus on the not talking etc. part rather than the not understanding/gesturing part and give (well meaning but meaningless) platitudes.

We had similar worries when our DS was 16 months old, mainly that he wasn't pointing/gesturing and we just couldn't tell if he understood much. Our HV immediately agreed to refer to SALT as a first step because of the understanding concern and MCHAT score. It seems that although your HV may be nice, she perhaps doesn't have much experience with development delays and what the red flags your DS is displaying mean. Did she go through the age appropriate Ages and Stages questionnaire (google it)?

The SALT was happy to simply monitor (because eye contact wasn't too bad...) but was equally happy to immediately refer onto CDC (child Dev Centre) because we had obviously done our research and knew exactly what diagnosis we were potentially looking at (ASD).

Understanding and communication suddenly took off for our DS at 18 months so although our worries have slightly lessened we still see worrying traits and are pretty sure we will be looking at a HFA diagnosis at least at some point.

Don't be scared to outline to GP etc. exactly what your concerns are, we found it helped to present our research and bullet point exactly what our worries were and why. Also what does your DH think? Fortunately mine is on the same wavelength and we've presented a pretty united front which has helped (so not just the neurotic mother).

Hope that has helped, if only to let you know you're not alone.

thank you for all the responses

will read them all and try to answer tomorrow but have a very busy week so must make sure I remember!

thank you, you are all really helping and it is appreciated

Hi there, I'm a GP and from what I've read I wouldn't say there is necessarily any cause for alarm. It's difficult without having seen him to comment, and of course you'd want to keep an eye on his understanding, developing language, co-ordination etc, but from the age of 2 to 3 years is when most children (particularly boys, who are often later) come on leaps and bounds with those things. Your ds did sit and walk, albeit on the later side. But there is big variation with children and 'on the later side' can be just as 'normal' as an early walker. I think it is reassuring that you said he is affectionate and loving. My ds1 was a late talker and barely said a few words at the age of 2yo. I seem to remember wondering a little before this how much he actually understood. But then he suddenly started talking in sentences sometime after he turned two and appeared to know all his colours! It's very hard to know at that age what is going on inside their little heads - how much they understand, and how much they would rather choose not to listen to! I certainly don't want to provide false reassurance, given that I haven't seen your ds and don't have a crystal ball to know how his development will progress from this point. But I personally would try not to worry excessively (easier said than done, of course), enjoy your time with him, and see how things continue to progress. All the best.

OP I think you are doing the right thing getting things checked out, there are a few things here that would worry me too.

I wouldn't be unduly worried about the walking though - if he's walking at 21 months then it's not really that late.

Glad to hear your HV is being so helpful.

Quick question about the hearing test: when was it done? If it was in the summer months it might be worth pushing for a further test. Glue ear in children comes and goes and the onset of winter colds can result in a fairly noticeable decline in hearing. When ds' hearing was bad he exhibited a lot of worrying behaviour and frustration as well as the obvious lack of speech that improved massively just by knowing about it (and then again when his hearing improved with grommets) He was like a different child.

It seems like your gut feeling is telling you that there is something not quite right. Listen to it and get your DS check out by a developmental paediatrician.

SENCos and play specialists are employed to provide support to children with disabilities and advise their carers about how to help them. They are absolutely not qualified to assess children's development and diagnose them.

ASD can present in lots of different ways and there could be all sorts of other reasons for the developmental delays you've described. For example, I have two DDs with High Functioning Autism and they are both very affectionate and loving and give good eye contact. Luckily their diagnostic teams knew enough not to discount Autism for those superficial reasons.

If you raise concerns now and your DS has a condition which affects his development, intervention can start early and his outcomes will be better. If it turns out that he is naturally a slower developer but will catch up in the end you will feel reassured and will have lost nothing.

If your DS gets a diagnosis he may well benefit from the intervention of a SENCo and a play specialist who can tailor their approach to the problems that have been identified by a medical professional.

Hi,

Just saw this, haven't read all the posts, but your son sounds a lot like my two. With both of them, when they started nursery the staff asked if their hearing was ok because they didn't always respond when spoken to. Both were slow to hit developmental milestones, but did get there in the end. Turns out my oldest definitely has dyspraxia, youngest looks like he's heading that way. Watch out, because dyspraxia and ASD are both co-morbid with Sensory Processing Disorder, so misdiagnosis is common.

Google Sensory Processing Disorder, and if you haven't already, have a look at the Dyspraxia Foundation website too.

The route to diagnosis for dyspraxia for my oldest was to see my GP, and ask for a referral to a paediatrician. For my youngest, the school is referring him to our local childrens centre. Lots of people are really, really dismissive of dyspraxia. Even our GP claimed it didn't exist! Just keep insisting politely and firmly that you'd like him seen by an expert.

Hi there. I'm not an expert and obv can't diagnose anything but I'm thinking there are a lot of things that you have described that COULD flag up an ASD. I went on some training recently and was told that all kids with a diagnosis of autism will have experienced developmental delays. His lack of understanding and interest in communicating sounds ASD-ish, as does the preference for one type of toy - his cars- as does the head banging and liking things in his mouth - called something like propreceptive sensory needs. These types of things on their own may well be meaningless, but together would suggest to me that ASD may be a route worth investigating.
Also if it does turn out to be this there are loads of things that can be done to help. Two friends of mine have seen their children make amazing progress with the sunflower programme - might be worth checking out?

Hi thank you for all your replies, I have taken everything on board; I think I will see how it goes at his next few appointments and up until Christmas and if i am worried I will get some balls rolling after Christmas.

Sorry for the late reply, I have had some health problems of my own come up and been a bit distracted with appointments for them.

I may come update or start a new thread depending on what happens when the lady comes back.

i really have appreciated all this and will probably end up going to the drs in early jan to ask for referrals.