Whats wrong with DS? Speech/Language

[tootymaloo]

I am hoping that someone will have experience on here of language issues.

DS is 4 and starts school in Sept. He can speak very clearly but we still cant have a 2 way chat with him. We are very much stuck in the here and now and him saying what he is doing. Action words are easy for him.

I cant ask him what he has done or what we are going to do. He doesnt understand 'next to', behind, or in front. Him and her get confused. He wouldn't use he/she. He could never lie as everything is what it is. He would never use words like 'because'. There are so many differences with his language.

If you ask him about a book you have just read he is blank and picks lovely familiar phrases that he has learnt but totally irrelevant to what we have seen and he has just heard. He definitely wants to talk. What/Why and where are also a jumble. We have tried story boards but he can only label what we see.

He is having assessments done independently soon which we are paying for as NHS salt says its just delay and don't worry about it.

I am very worried about him starting school. He has had ASD ruled out but does have mild CP. He seems to function very well with his limited language which is our biggest concern with school. Does it matter if he hasn't got a clue, will it all fall into place?

What assessments should be done if anyone knows?

One of the NHS speech language therapists we have seen said she wouldn't expect a 2 way chat with a child until they are 5

I have other DC and can quite honestly say they were all very chatting away endlessly by this age and it all just fell into place without any help. They are just average children, not exceptional like Salt made them out to be!

Hi tootymaloo.

I'm afraid I don't have any answers for you but had to reply because it was like you were describing my ds who is also 4. We are having him assessed also at the moment and I am very worried about him starting school in September. I am sick of being told it's because he's boy (I have two girls as well) and also that there's a wide range of normal.

DS also has many other issues that make me suspect ASD which is interesting that that has been ruled out for you.

When I said to the salt about his lack of understanding they said they don't test for that until age 9!!! He subsequently did a NEPSY assessment where he scored very low on narrative memory. He also scored low on theory of mind. Although he scored average on face recognition he was in the 2-5 percentile on "negative" or neutral faces - he just described them all as sad. His cognitive assessments was fine. Verbal was average but visual was superior.

I hope you get some answers soon - sorry I can't be of any help.

Your post has made me feel so much better, just for the fact that we are not entirely alone with this!

The silly thing is, DS can fit anywhere with the most limited language skills because everyones expectations seem so low

Ds was far too cuddly for ASD, he didnt fit all of the boxes. He has sensory issues and traits but a lot can be put down to his lack of language skills. Transitions are all done using PECS and timelines.

The silly thing is that he can talk. Its just he cant describe anything he sees or hears. Its all labelled correctly so thats great! If the image he sees has someone with a skipping rope skipping he would just say girl/boy if asked what the picture is about Ask him what the girl or boy is holding whilst pointing at it and he will say rope! Of course when thats written down by SALT, its written as 'little Tooty stated that he was seeing a little boy/girl skipping' as though it is one long flowing conversation

Ds was assessed when he was just 2 with his visual skills being at a 48 month old. He could barely talk at all at that age!

Hopefully the assessments will throw some light on it all.

Other than ASD are they assessing your DS for anything else?

My older DC are also DDs so i am used to being told Ds is just lazy compared to DDs

DS is really cuddly as well - although very much on his terms.

Like your DS it's all about the here and now. He might mention something like a new toy at preschool but it will literally be a one liner. His vocab is fine - he can name anything! But when he's talking about things alot of it is just repeated from the computer or tv. Like at the moment he's mad about the Octonauts and he can give you loads of info about a humpback whale or wolf eel but it's all exactly repeated from the cbeebies website. If you read him a story, although he really enjoys it, he would never be able to answer a question about the story. Conversations are non existent.

He finds social situations really difficult as well and doesn't like joining in with any group activities and has very limited pretend play.

The assessment is a general assessment by a multi disciplinary team. They're not specifically testing for ASD but it's one of the things they're considering although they're saying he's a very "complex" case but it really annoys me because they don't take anything I say into consideration. Like I said earlier when I said he had problems with understanding, they said he was within the average range until they did the NEPSY assessment and then it was "oh yeah, he has problems with conversations and narrative memory" - I told you that at the beginning!!!!!

I was so relieved when I read your post too!

Tooty-your son sounds very similar to DS2, and he does have a dx of ASD (High Functioning). He had some speech delay, but can talk, and is just starting to be able to do Q&A, if its something he is talking about but he cannot describe anything, talk about an experience and does not ask why, how questions. DS2 is also a very affectionate child, loves cuddles and kisses, and always has done, but there is no doube that he is ASD. As for what the NHS Salt said about not expecting a 2 way conversation until the age of 5-what a load of crap, I would expect a typically developing child to be able to do this by aged 3. I am not a SALT though!
DS2 has 'special interests' (things he is very interested in), he can do play with pretend food, tea sets etc, acting out but would not play with little figures, imaginative worlds etc. DS2's sensory issues are a huge part of our daily life however, he has many problems relating to this. OT are now working with us and have been very good. He will do eye contact, on his terms and when playing with us or when he wants something! I don't know much about other conditions, just our experience with ASD.
When you say ASD has been ruled out who assessed him? Have you applied for a Statement for your son, have you discussed with the school the extra help he will need when he is at school? I do know someone whose DD has ASD and she was told she didn't for 2 years, they looked into chromosome abnormailities etc, before finally being diagnosed with ASD after 2 years of assessments. I would pursue further assessments from paediatrician, and other professionals, OT, physiotherapy etc. ASD kids can be very affectionate.

I can't say your Ds has ASD, but I do have experience of the complexity of it and more importantly the 'system' and know that it is failing a good many Chikdren who DO have ASD who go on to get Dx much later having missed many opportunities for good early intervention.

I woukd ask the same as diet. WHO ruled it out?

rhubar i will let you know if DS's assessments throw anything new up so we can compare notes They are on the 25th.

We had a Banardos speech language therapist come to the house for an hour a wk for 6 weeks when he was 2. She specialised in ASD. Ds is friendly now and has started to interact with his peers. He has a special friend at nursery.

As for funding, DS has had it for the last 2 years at Nursery but wont be getting any for school transition. The area Senco wont allow application as Ds doesnt meet the criteria. Ds is very passive so is quite happy doing his own thing even if he hasnt got a clue whats going on He wont disturb the other 29 pupils.

We had his school entry plan last week and the teacher was rolling her eyes as was the school Senco when all of Ds reports were laid out and they were told what they needed to implement for him. It was very embarrassing for us. School seemed very supportive and unhappy about the no funding so we were told it would be discussed when we left.

No resolution after the meeting, things were left as they are. The info Area Senco was using was 12 months old as no NHS Salt input since then. Thats why we are paying for independent reports. She looked horrified when i announced it at the meeting

We had unfortunately seen an email from area senco attatched to Ds's school admissions form stating that 'Ds would not need additional funding and she would contact the Speech and language team to tell them to say the same thing' Of course, he hasnt seen anyone since last Aug so how would they know what his needs are. All looks very dodgy to us how the system works.

I could have ignored the email but i printed off 10 copies whilst i had it on screen

Sorry its all so long!

I forgot to say DS has ed psych, OT, Paed, orthotics, and Salt involvement. So lots of reports.

I fear i have made an enemy of Area Senco sadly.

When you say the area SENCO, is this related to 'early years' and nurseries? They can't stop a statutory assessment. If you know your son does not 'have a clue' what is going on, then I think it is essential that you do apply for a statutory assessment of your son. My son also does not have a clue what is going on most of the time, as he is happy within his own little world. It's good that your son has started to interact with other kids, ours has too but still has a huge way to go. It's good you have already had meetings with the school. If I were you I would contact the school senco, and ask her advice. I'm sure they will observe him once he has started and if they feel it is necessary start the statutory assessment, once they have gathered evidence, but you don't want to wait 12 months for your son to get the support he will need at school. On Monday call your local parent partnership and explain the situation, and I would also advise you to contact your local authority SEN dept and tell them you understand you have the right as a parent to request a Statutory assessment of your childs needs and you wish to do this, with immediate effect and they will tell you what you need to do.
I dont understand the 'area SENCO' bit, but where we live DS was seen by different people for 'early years' but once it came to school age it was a different team of professionals who worked with DS. Also, a SALT cannot diagnose, or rule out ASD, no matter how experienced they are. They can have a very strong idea of ASD or not, but cannot say Yes or No. As Starlight says ASD is very complex, no 2 kids with ASD are the same, and it would only be a paediatrician, and many other professionals, who would contribute to the ASD assessment and diagnosis. As Starlight says it can be a very lenghty process depending on where you live-you must start it asap.
Do make those phone calls on Monday, don't be fobbed off. DS was supported by an early years service who said he 'wasn't too bad' and did not want to start the SA process (due to the workload and timescale I'm sure) and said they felt he did not require a statement. We told them if they didnt start it we would put in a parental request. Fast forward 6 months and DS has a statement of 32.5hrs per week, and he needs every minute of that support in mainstream and his school agree. There is no way he would cope without it.
Some professionals have their own agenda-you are the only one who has your son's best interests at heart!

diet thankyou. Yes you are right about the early years provision team, thats who the area Senco kind of works within. I think she would be called an early years inclusion person in other areas.

All of the people working with DS ie EP, Salt are based in different places so the reports are gathered by her and then she arranges what needs to be applied for regarding funding and if the nurseries schools are implementing things like IEPs. She is the only one based at the LEA office but has influence all over our little area with what she wants done or not done in our case.

She only has any influence up until Nov when Ds is signed over to EP. We have spoken to them already as they were sure Ds needed funding (its in their reports)so i think it will happen at some point but as it stands at the moment without any formal language assessments we have no argument hence why we are having them done privately.

I listen to Ds talk and some of it is so good and relevant but a lot of it is way off the mark. His understanding of any form of chat is just not there at all. He can basically say what he wants to say and the rest of us have to follow his lead or he wanders off or i mistakenly taught him to say 'i no idea'. I wish i had taught him to say 'i dont understand'.

I cant even ask him what he has done today or who is sisters are.

If the language assessments do show anything then i think we will go down the route of stat assessment but being in the rural SW we know it will be a fight.

I think i will contact parent partnership again. They helped us before when Ds had his funding put in the school pot rather than allocated for him to have the 1:1 he was supposed to have

I cant believe we are dealing with all this before he has even started school properly

I am seeing the school senco hopefully on Monday as have had to photcopy all of Ds's reports for school to look at.

If you are happy to pay for private assessments then I would recommend a good developmental paediatrician. One appointment with someone like that can save YEARS of confusion, fobbing off and mis-communications.

starlight we are not happy paying for private assessments but feel we have no choice. Chicken dippers and super noodles for us for the next couple of months as a result

I hadnt considered a private paed. Ours see's Ds every 6 months but basically writes a consolidation report on what everyone has put in their reports. She also specialises in ASD and at one point thought DS had A typical autism but the Salt reports stated speech delay so she dropped it.

We presumed that meant autism was definitely ruled out.

I will speak to Dh about private paed. We were looking at ICAN, is that a route worth going down?

If a child's expressive language is OK then my anecdotal experiences of the state tell me that very serious language issues can be totally ignored until it is too late.

My son has excellent expressive language bar a few quirks - so noone was interested in my concerns in the early years. He was a very early talker. However his receptive language (so what he understands of what is said to him) is only on the 5th centile despite my losing patience, buying the VB mapp and other books and doing what I could myself.

He could smile, nod his head & not a have a clue for England!!!! The NHS system just isn't set up to recognise receptive language issues.

He finally got SALT at 7 - BUT it took a statement of special educational needs and a Tribunal to force the state to provide it.

A private assessment will give you a clear understanding of what the issues are, so you can plan your next steps.

Thats exactly what our worries are Boc. Its so easy for everyone ignore the fact he doesnt understand when he is stood their nodding his little head.

I will wait for the assessments and guess i will be back here again for the next steps!

Thankyou

Tooty-just over a yr ago my son had just been diagnosed, and the following month we got confirmation of his place at school. I was in a real tizz about how he would cope, and parent partnership advised me to make a list of bullerpoints of all of our concerns about DS, which we did and it was a very big list!! We asked for a meeting with the school SENCO and headteacher and we presented them with the list. we asked them if they felt they could meet his needs if he came in unsupported. They made it very clear that DS would need support and they would prefer DS to be in the process of having a Statement, as he obviously has a very high support need. That gave us the confidence to say to the early years person who didnt want to start the SA process, "if you don't then we will put in a parental request for SA, as is our right".

Do speak to the SENCO at school and dont be put off by the area SENCO, after the autumn she wont have anything to do with your son, the SA process takes up to 6 months so if you start it now it may not even go through until December, and it may also get your NHS SALT to see your DS. Obviously we can't diagnose your son, but when we first had concerns about DS I googled, signs of autism in toddlers and he ticked a lot of the boxes. One thing that is common though is speech delay. Our DS had a big bank of phrases he used to get by, but he has now made some progress. The SN boards on MN have been the best support and help to us, hope we can help you and your son too.

Thankyou both so much.

My stomach turns everytime i think of the long road ahead. I dont want to get it wrong for DS.

Disordered language is the label the independent SALT has used which goes against NHS Salt who says delays.

Diet i will come back for stat assessment advice if needed. I hope school will take the same approach as yours. I dont hold much hope as language issues dont seem to fair very high on anyones list around here. Ds is not at all disruptive or aggressive, that seems to take priority.

ZZZZZ I have been following a lot of posts on here lately and see the HE one is quite common. I hope i am not put in that position where it becomes the only option but its one we will consider if we have to. I will look at those Apps. Ds loves numbers but cant recognise a single letter

I think you are being fobbed off something rotten , probably as by the sounds of it your child is placid, so the nursery senco doesn't care too much whether he is learning much or not, as he is not causing them hassle I really don't think there is the clear line between language delay/disorder/ASD that is being sold to you. I do agree that a language delay can impact on social skills though. Both NHS and indie SALT can and should do a proper formal assessment of receptive language and give you some concrete figures, either percentile wise or age wise, to see how he compares against his peers.

I was in a similar position with DS language wise, ASD was ruled out by MDA, who instead dx'd language delay with traits (but as MDA was only about an hour I have doubts as to its thoroughness). His story has been v positive due to a small, caring school but I don't want to lure you into a false sense of security about not going down official routes with 1-1, statementing, diagnosis etc.

btw I have heard v good reports about ICAN but unsure if they can diagnose.
If you are on limited income you may be eligible for a bursary from them.

In terms of letters - my DS learnt his letters from those Bright Baby type DVDs. Can't remember which one it was, though!

zzzzz Key stage 1 was a total write-off for DS. If I knew then what I know now, I'd have homeschooled till 7. Certainly that's the approach I'll take if he is ever blessed with a sibling as the "system" failed my son badly in the early years. He's lost 3 years he won't get back.

I agree with the others, whoever said your Ds couldnt have ASD because he is too cuddly didnt know much about ASD, my Dd3 is a limpet she is very cuddly, to the point of suffocating me at times. It is all on her terms though.

Your Early years advisor sounds like a nightmare, which is a shame because they can be really helpful.

I would definitely try to go round her and speak to the school SENCO. Try to explain that you do not agree with what is being said and make sure you tell her that you are worried about what has been said.

I would also recommend pushing for a proper ASD assessment as his language issues do sound similar to those that can occur with ASD.

Photocopy and Keep a copy of all your paperwork in date order in a file and take it to every meeting. Make notes about what has been said and also look at applying for a statement yourself.

Sorry if all this has already been said and good luck

Thankyou again.

I already have date ordered all of my paperwork having read lots of posts on here

Ds didnt fall into the triad because he likes people so didnt hit all 3 requirements. Apparently it was an easy decision. He also makes good eye contact now and is sociable.

I think the school realised how unhappy we were because the main points were that they had to...

Ensure DS had understood what had been said/discussed throughout the day. That should be a laugh for them! He is good at familiar direction and requests but chat goes way above him.

Use total communications with him and timelines for all routines and transitions.

Help with all toiletting and dressing needs. Ds has only just started using the toilet in the last 3 weeks and gets confused. He drops his pants and trousers before getting to the loo so exposes himself. I have insisted he deserves to retain his dignity even though he doesnt understand.

He will need physical help with the loo as well as watching, as he smears poo.

He falls and has no reflexs to put his arms out due the CP so will need watching near all steps. He still cant walk up and down using alternate steps.

It takes him 45 mins to eat half his lunch (cheese!) in current setting where the other children at the new school will only be allowed only 30, so they have to have someone sat with him until finished.

Daily Communication book as Ds cant say what he has done.

Ot reports states all his needs with fine/gross motor skills ie cant use scissors and holds pencil in first grip a lot of the time and sensory issues with anything gloopy! The school will also have to deal with this.

I think that was the main points of the entry plan.

All of these needs we have been told by Area senco are minor issues and during her observations he looks like any other child in the room. The school require no additional funding as he doesnt meet the criteria.

Do you think we are being unreasonable expecting some sort of help for him?

Ds is the happiest little boy and not at all demanding so my biggest fear is that he will be sat at school for 6 hours a day twiddling his thumbs.

Who assesses for ASD? Can a child with ASD be sociable and cuddly and seek out people?

You're definitely not being unreasonable! It's unfair that just because he's not making a scene that he gets forgotten about. Because I'm not in the UK I don't have practical advice except for you have to be really pushy!

Tooty your DS sounds just like my DS1. He is 7 and recently diagnosed with specific language impairment. like your DS he has trouble holding a 2 way conversation, recalling events, retelling stories, following 3 step instructionsetc, he has both receptive and expressive difficulties.
We were l;ate to pick him up cos as your little boy he could talk, no prob with that but could not expand on what he wanted to say.
Example
ME: what happened in that page?
HIM: dont know
ME: why did the dog run away
HIM: I'm tired mum, cant remember......
I suppose i just thought he was shy and a typical boy but turns out it is more than that and he is struggling at school and finds readig a major chore as he cant follow the story line, but can read very well iykwim!!
He is attending SALT for the last 6 months and there is a marked improvement in him, even his confidence has soared bu he has a way to go. I I had DD before him maybe I would have noticed it earlier as she is so vocal (in a good way;) ).
It is great that you have noticed so young , I hope you get the help you need , as I'm sure early intervention could help him so much. DS has a lot of bad habbits which will take time to overcome but hopefully he will get there too!

PS I dont think you are being unreasonable at all, sounds like you DS needs help in those areas you have outlined and he should get it no questions asked!!! It infuriates me how parents have to fight so hard to get the support their DCs so badly need. Feeling a bit infuriated myself as i'm currently fighting for resource hours for my DS1 and coming up against alot of red tape!!!!

I don't think your being unreasonable either. I had SALT involved with DD when she was a toddler and because I didn't know the right q's to ask, didn't know about these types of forums and used to hang off every word they said - oh and I also put ALL my faith in the (so called) professionals . . Never again will I do that. I have learned that the only person who is looking after my dc's best interests in me!!

I left it so long that my DD is now 11, with expressive/receptive language difficulties (that of a 6.5yr old). She can't expand on the most basic of conversations. I've just found out she also has dyslexia (and i'm querying some form of ASD myself).

I think the moral of my story is Mother definitely does know best

Keep going and good luck!

Tooty - just wanted to say that is you still feel ASD might be a possibility don't dismiss it just because you have been told he doesn't fit the picture. DD was diagnosed with ASD, but if you met her she would talk to you and be friendly. Her problem is she wants to be friendly, she loves being with other people infact, but actually when you watch her in a group situation she doesn't know how to really go about it all and act appropriately with her peers. All her interaction is on her terms really, so she is anything but shy, she's happy, will look people in the eye some of the time and is generally seen by adults as a lovely happy interactive kid - until they look a little deeper and see more and then it becomes apparent. As she gets older the differences between her and her peers socially are more noticable too. All her "quirks" we put down to age and speech issues when she was younger. Now it does of course make a lot more sense in retrospect.