Did anyone have a child with limited understanding at 18-20 months?

[mscongeniality]

My son had an appointment with a Paediatrician yesterday due to his lack of speech at almost 20 months and she thinks its better to get him early intervention now rather than later.

My bigger concern is that he doesn't seem to understand or respond to simple tasks and commands either so his language can't progress until he starts understanding it.

I'm just wondering if anyone had an 18-20 month child who had limited understanding but started progressing later?

Chhalma

Sorry for the delay, I'm just catching up now.

No my son doesn't sweat much but neither do I or his dad. He's quite small only 9th centile and we make sure his room is comfortable and he isn't wearing too many layers at night. I don't think that sweating indicates anything really, does it?

And no we didn't have any blood tests done, the Paed based most of her report on questions she asked me and what the nurse observed him doing for the 10-15 minutes we were there for.

I'm so sorry for the report you have received, but at least you now can try and get him as much early intervention as possible. That's our goal as well.

All the best to you and your DS. Feel free to message me anytime for support, although the ladies here are far more experienced with these kind of things.

GiddyOnZackHunt That sounds JUST like my son! When its just me and him at home, he ignores me so much I start to panic that something isn't right. But as soon as his dad gets home, he's like a different child! When I try to teach him anything its just impossible but my husband gets him to respond way more.

Maybe it's just his personality and he will get there eventually!

it's infuriating isn't it. I do sometimes get more response by lowering my voice. I think he's learned to tune me out. We didn't seek or have any intervention as my mum said he was like DB.
DS is very dexterous (lego whizz) and determined, popular, funny and loving. And perfectly normal. Try not to worry :)

My son really likes putting things in and out of containers. He doesn't do it all the time, maybe once a day when he finds soemthing he can use to put stuff in. That's the only thing I've noticed about him I guess but isn't that something all toddlers do occasionally?

I think so yes. DS spent a lot of time emptying things so I suppose he loaded them up first!

I reallise my son's condition is very bad. Don't know what will happen next.
Dear Macongianility as ur son is 6 weeks premature so hopefully he wil be late bloomer . And much better than my son. And younger as well. My son doesn't respond anything seems getting worse day by day. Or it's me who find everything wrong with him now.

Full time ABA prog starts at £20000 and can go up to around £55000 but that depends on the child, whereabouts in the country you live, whether the LEA actively fund ABA or if you go to tribunal , staffing qualification etc . Most people that want a full time programme start on a part time programme using charity and private funding and then approach the LEA . You will need a statement or EHCP for this though.

you will need a statement or EHCP for this though.

I don't know anybody who got an ABA in an EHCP without tribunal though. I know a number of parents who went to tribunal for it and lost. Also, building an ABA case for tribunal requires significant resources (financial, time, mental) and it's not possible for everybody to do it.

It's not as easy as getting ABA through and EHCP - far from it.

Not definitely not easy at all. Stressful and financially tricky. It depends on the LEA though and the strength of the case. I have a Number of children with EHCP plans that stipulate ABA without going to tribunal

wow, our LA doesn't fund a single ABA programme

Such a lottery sometimes with LEAs - the system isn't a fair one

I hate that this uncertainty is making me question everything. My DS has always been a great sleeper, as in he never needed to be settled to sleep. He only started sleeping through around 8/9 months so quite late but putting him to sleep has never been an issue. He just wants his dummy and this flannel that he likes to stroke and he drifts off quickly or slowly depending on how tired he is.

Some nights if he's not as tired he will keep getting up and throwing his dummy out the cot, so we go in and give it back to him and lay him back down. Usually he doesn't make any sounds, making an occasional whine or some babbling.

Some nights like tonight I've laid him down and he has just been quietly laying there for almost an hour. He's not asleep yet because I can hear him stirring, but he's not trying to get up either. I think he enjoy's just relaxing in his cot sometimes. Is that weird? I know most people have opposite problems about getting their toddlers to stay in bed so now I'm questioning this too!

Okay I am SO annoyed right now.

Just got a letter from the local SALT services and they are saying they are NOT accepting his referral from the Paed!!! WTAF

They keep saying that parents need to go to the local drop-in sessions but I already went to one 1.5 months ago and the woman literally spent 5 minutes with him and didn't really give me any feed back, just told me to try some stuff at home and that was it. The Paed saw that I had been to them and they had signed me off but she said she felt that he does require Early Intervention. Can SALT really not listen to the Paed?!

I have no idea what to do now. I have always thought highly of the NHS even though I'm not from the UK, I'm Canadian and where I'm from the healthcare system is much better but I've never had any issues with the NHS until now.

What can I do? Does anyone have any suggestions? I'll be calling my HV and the Community Paed on Monday and see what they suggest.

Just so annoyed now.

I have a 5 year old with limited speech but his understanding has always been very good . Start learning Makaton with him asap just in case it doesn't pan out in the typical way .

ms I had a similar situation with the pass the bucket. I complained via PALS and it sorted it out.

If paed thinks he needs early intervention (which is not really available on the NHS anyways unless you see a handful of salt sessions after waitung for a year on the waiting list as such) then clearly paed assumes there are issues and should have kept him on the books.

NHS is great for a lot of things but an utter letdown for children with developmental issues.

I would apply for DLA and self fund therapy (that is what we did in the end). But I would put for NHS input to stay in the 'system' as this will make things easier if he needs support in the long run.

Mscongeniality.
I am sorry about this. I really am.
Coffee machine is right, the NHS is not good at helping children in these circumstances.

If you have to stick with nhs, you are going to have to dig your heels in and make your presence felt big time. Pester them half to death. Or you will be discharged or left permanently on a waiting list.

My advice? Get a recommendation for a private SALT. Stick your hands in your pockets and get at least one session, more if you can. Explain your circumstances and ask for as many online and library resources as you can. Then, if you have to wait for a year or longer for NHS help you can be working with your dc at home. Ask the GP or paed for local groups and charities who might offer support groups in your area.

The paed is right, early intervention is key and you are going to have to step up to the mark here and help your dc. You are your child's parent. You really can't sit around and wait for the NHS to help because they won't.

Once he's at school they will probably bring in ed psych and get the ball rolling, but what will help is that they see you are on it.

That's what we did. Please don't let them fob you off. Get researching.
It sounds intimidating, but once you start arming yourself with information and contacts y will feel much more in control.

Www.chatterboxcharity.org
See also the chatterbox challenge and I CAN charity.

Get in touch with them.

Hi coffeemachine
Do u have any suggestion for ABA therapy program ! I mean where I can get quality service with qualified therapist . Price is also important but service. How should I get cheaper option like urs. Should I ask them to train me? Or .... Please I want to start ABA therapy very soon. Can't wait to see my son's improvement. Thanks . Very hopeful and excited .

ms, google the name of your local authority and 'portage services', to see if this service is provided in your area. It is an excellent early intervention service for DCs who are considered behind developmentally in two or more areas. More info here. I am sorry you are at the beginning of this, but you really will need to fight for every service your child needs, particularly when LAs are cutting back left, right and centre. Go back to the drop in centre and explain that you are seriously concerned about your DS's lack of understanding and development of language. Say your paed's referral was refused and you don't understand why. Ask them why his lack of understanding at 20 months isn't a concern.

Also, have a look at the MCHAT questionnaire. It is a recognised early screening tool for ASD in toddlers. If you click on the tab 'about m-chat', it will explain all about it. Of course if your DS's scores indicate that he warrants further investigation by a SALT, is doesn't necessarily mean he will eventually be diagnosed with ASD, but it is a useful tool to highlight those children at risk. Print off his scores and show the SALTs. You have to be really pushy.

bacb.com You can find certified Behaviour analysts on this website

ABA tutor finder website has details of tutors and you can post on Vb community web page for tutors

I would ask around for recommendations as the model a qualified BCBA uses can vary from very table based (traditional ABA) to play based intervention (VB approach).

If you have a household income of less that £45000 you are eligible for Caudwell - up to £2000 per year. It's a simple application process.

Fred foundation and borporan will sometimes fund toward ABA or specific therapy - e.g. Feeding therapy or talktools therapy.

Ask your consultant to do a full baseline assessment (ABLLS and VBMAPP and ESDM for little ones). Video bits from this and the first few months of intervention so you have video evidence as well as data evidence just in case you want to try and apply for funding from LEA in the future

Good luck :)

it depends where you are in the country re provider.

We started out many years ago and now there are a lot more providers out there.

Check and the Facebook group I mentioned earlier. people on there have a wealth of knowledge. there is also an Yahoo ABA group. I would suggest you join this as well.

I would read up about ABA before anyways.

there are some really good books which:

www.amazon.co.uk/Verbal-Behavior-Approach-Children-Disorders/dp/1843108526

www.amazon.co.uk/gp/aw/d/1447748360/ref=pd_aw_sim_14_3?ie=UTF8&psc=1&refRID=YYBB8JSDRGMD1V28VNPR

there are lots of idea what you can do yourself online.

first take time, read about it. It's not a magic bullet. It takes time and dedication and it is not a cure.

Have a search on the Special Needs Children's board on here. lots of info.

I am sending my son to nursery from December, 2016 for 3 hrs for 3 days in a week. From feb may be he will be illegible for free so will increase to 15 hr. Do you think it will be helpful for him or will be enough support for him ? Or still he needs some therapy like Salt or ABA ?

chalma
if he is just a late bloomer then it won't hurt. If he had significant additional needs such as autism, speech and language difficulties, learning diffs then nursery won't be 'helpful' on its own esp if he is unsupported.

Will he be going to a mainstream or special needs nursery? what kind of support is in place for him? I suspect you don't have a EHCP in place yet?

I am going to call my HV tomorrow and discuss what I can do going forward. Thank you for all your advice, I clearly can't rely on the NHS at all. I wasn't planning to do that completely anyways, I was going to look into private SALT as well but it's just disappointing that they won't help him now when everyone is saying Early Intervention is so useful.

I am starting to feel like he may just be a late bloomer though, I have been a lot more focused on teaching him things the past few weeks and just been observing him loads. He doesn't seem to exhibit any clear signs of ASD that I can see. I have made lots of videos of him doing things and shown it to people who agree. One of my friends whose son is 5 and is high functioning ASD, said that she couldn't see any signs in him either. The only thing that he doesn't do now is point, but he does communicate in other way and enjoys joint attention activities like passing a ball back and forth.

Another thing, I think his first word might be Tea. No idea why! I do like my tea but its just random. I had heard him saying it a few weeks ago and thought he was just making a random sound. Then one day I was making a cup in the kitchen and he walked in and said 'Tea' out of the blue. Again I thought it must be a coincidence. But now if we say tea, he repeats it, and then when we point to a cup, he says Tea as well.

So that surely is progress, but even if he isn't ASD or anything else, I do think he will require SALT so I'm going to keep chasing until he gets it.

He is going mainstream nursery. Yes we don't have EHCP yet. Waiting for feedback from early support as pead already reffered to them. Let see what they offer to my son. I am joing different groups accoutring to all of your suggestions and doing research for online resource for autism. In few days time I will apply for cudewell funding don't know they will grant my application or not and contact to ABA therapist.