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DS, problems and needing opinions

(26 Posts)
HHH3 Thu 27-Nov-14 21:12:24

I've had a thread about DS2's speech but a lot has happened over the last couple of days so I thought it'd be better to start a new one (if anyone can link to the previous thread I'd appreciate it).

He's just about to turn 2 and if I'm perfectly honest I've had concerns about him since he was tiny. Nothing I could put my finger on for a long time though. He's met all his milestones although they've always been at the very late end of 'normal' I think. Except for his speech which is really delayed (he has 6 words, 3 of which are recognisable to other people). Although he has some signs and communicates with those and gestures. Frustration, for both of us, is pretty commonplace though.

Yesterday he had his 2 year check which showed he excelled in fine motor skills but was way below where he should be in everything else. This is exactly what happened with his 1 year check.

Today he had a private speech therapy assessment which showed that he almost exclusively uses vowels - almost no consonants at all. She agreed with the HV yesterday that I should take him to a SALT drop in and get the ball rolling on a referral.

So, positives...

He understands an awful lot of what is said to him.
Fine motor skills.
He likes to try and work out how things work.
Good eye contact.
Very socialable with adults.
He's happy and smiley.

Negatives...

Lack of speech.
He doesn't like getting messy. Having gone to messy play once a week since Easter he's recently got to the point where he'll tolerate getting messy is the course of doing something although frequently asks to be cleaned and has to be reassured it's ok. He never gets messy on purpose.
He doesn't like other children. If a child comes up to him he freezes and just stands and stares at them. Doesn't interact with them and equally doesn't walk away.
At toddler groups he's happy to play if it's not too busy. If it gets busy he retreats to the edges, won't play with toys (he'll play with blinds, doors, chairs etc) and comes to me repeatedly to sit on my lap/for reassurance.
He seems 'younger' than his peers (it's hard to explain but he just doesn't seem to relate to the world in the same way as them).
The gap between him and his peers is growing and becoming increasingly noticeable.

Apologies for the long post - I wanted to make it as comprehensive as possible. I guess what I'm wondering is if anyone recognises this in their DC/other DCs? I've googled and have some ideas but honestly, I'm not sure if I'm right or not and I don't want to jump to conclusions.

chocismydrug Fri 28-Nov-14 04:04:15

Ok, they told you to go to a Salt drop in. Anything else? I would probably want a referal to a developnental paed too. If the HV has not already referred, then sideline her and get referred via GP.

Some things sound sensory (e.g. the messy hands). Did the Salt suggest anything re just producing vowels? You might want to read up on verbal dyspraxia (don't know too much about it though).

Are you worried about autism? Have you done the M chat (will dig out the link). Do that and let the GP know if it flags up anything.

Sure the other geese will be along with pointers.

chocismydrug Fri 28-Nov-14 04:05:21

https://www.m-chat.org/mchat.php

HHH3 Fri 28-Nov-14 06:41:02

Crap...completely forgot to put in my op that the HV is coming back in 2 weeks to do a social/emotional questionnaire and will refer to CDC (child development centre?) depending on the results of that.

SALT didn't suggest a reason. But then if speech delay is part of a wider problem rather than on its own she wouldn't have given a diagnosis, would she.

I'm really not sure re autism. Both the HV and SALT have said he doesn't have it. But neither of them know the full picture. There are things that worry me (mainly sensory) but then I think 'but he's got eye contact, good socially with adults'.

However, I'm aware that I have preconceived ideas about autism and having read a lot on here recently I've learnt that a) I'm mostly wrong and b) just how big a spectrum it is. So I'm confused.

I did the M-CHAT the other day and he came out as medium risk.

kleinzeit Fri 28-Nov-14 08:34:46

The thing with autism is that different kinds of problems tend to show at different ages and different development stages. Under two is too young to rule out an autism-spectrum condition altogether. My DS was diagnosed with Asperger’s at 6, no obvious problems before age 5 though a few possible hints as a toddler. He was great with adults (often he still is!) and even as a toddler he liked playing with kids own age too. His social problems showed up when he was getting nearer to school age, an age when kids are supposed to show more give-and-take and adaptability. ASCs vary so much, it’s often a matter of dealing with what comes up at the time when it shows up.

The good thing is that your DS is getting good help for the difficulties that he already has, and he’s being checked out for issues that he might encounter a bit further along the line. I know it’s a worry, but it sounds as if he’s doing very well and you are getting the right help for him. flowers

chocismydrug Fri 28-Nov-14 09:33:14

with a medium ASD risk in the M-CHAT and all the other issues, I would really insist on a referral (regardless of the next HV check up - go via GP if the HV is not helpful).

sensory issue are often part of autism and good eye contact means nothing really (DD has severe autism and has good eye contact). being socially with adults (as opposed to being socially with children) is something which often got noted in DD. And Salt and HV are not qualified to diagnose or rule out autism. our Salt, HV and GP ruled out ASD and yet DD was dx later on with severe autism.

not saying your DS has ASD but I would take the Salt and HV comments with a pinch of Salt.

and sorry you are having such a worrying time. but this is the worst bit. It will get better flowers

HHH3 Fri 28-Nov-14 09:45:47

Kleinzeit - thank-you. Interesting that it didn't really show til later in your DS. I hadn't realised that could happen and it makes me wonder if I'll see more things as he gets older.

HHH3 Fri 28-Nov-14 09:50:56

chocismydrug (love that name!) - thank-you. I know the HV and SALT can't (and shouldn't have) said it's not ASD. I'm keeping he an open mind tbh. I'm absolutely not saying that's what he has but I'm also not ruling it out either. Tbh I'm don't care about a label - I just want to get him the right help and support. Interesting about eye contact as well (I suppose that was one of my preconceptions).

If I mention M-CHAT to HV or GP will they know what I'm talking about?

I was talking to my babysitter earlier and explaining what's been going on. She's been looking after him at least once a week since he was 5 months old so knows him very, very well. She also has years and years of nannying experience. When I said that he seems young for his age she agreed. Not nice to hear but it's so good that someone gets what I mean and agrees with me.

HHH3 Fri 28-Nov-14 09:52:14

What I need to do now is stop analysing everything he says and does (or doesn't say and do) and just enjoy himsmile

chocismydrug Fri 28-Nov-14 09:57:39

yes, I would expect a HV or GP to know what the M-CHAT is.

DD was also very young for her age but she also struggled hugely with understanding language. It is a good thing that your DS has good understanding. Hold on to that.

OldAntiquity Fri 28-Nov-14 15:52:53

I used this M-Chat, it's a PDF. But it's helpful to personally use the flow charts to see if you're thinking something is okay and it's not, it highlighted a few extra things for ds2 that I thought was okay. It also highlights which ones are critical skills.

MCHAT

I actually printed off the questionnaire, scored it, highlighted the yeses with a highlighter (obsessive!) and gave it to the doc! She attached it to his referral to the community paediatrician. My son scored 16 and was diagnosed with autism last month.

Some of the things you've put are exactly the same as my ds was at 2.

kleinzeit Fri 28-Nov-14 16:19:22

it makes me wonder if I'll see more things as he gets older

Well, if there are any other problems they are likely to seem clearer as he gets a bit older. But things can get better as well. The difficulties happened when my DS’s development got very out of step with the other kids and with the demands and expectations that the outside world put on him. And that out-of-step-ness came and went, because even kids who have unusual development do develop. So DS had a rough time at primary school and needed a lot of support but now he’s older and he’s much more in step again.

Enjoying your child right now is important too! smile

Ahhhcantthinkofagoodname Fri 28-Nov-14 20:37:53

Hello, me again.

Reading your above post I can see a few similarities and a few differences between your boy and mine at that age (my DS is now 4 and got verbal dyspraxia and ASD diagnoses shortly after his 3rd bday. The ASD diagnosis is now in doubt).

Speech and understanding, being generally happy and smily, interested in how things work, interested in adults but not children, and generally seeming young for his age are the similarities. my boy had poor eye contact though and didnt mind messy play, but he was scared of various noises, handryers being the worst. he also had quirky interests/obsessions, eg traffic lights and automatic doors. he would have lots of tantrums esp between 24 and 36 months which, with hindsight, i think were caused by not being able to communicte verbally but were attributed at the time to resistance to change and obsessive interests.

sounds like you should def push for referral to the developmental paed, however that is achieved (my son got his from his NHS SALT). the other thing you could start doing is a bit of speech work if your son has the cncentration / ability to engage (he is v young). the programme my son followed started with single sounds. given your boy hasnt got any consonants yet, i would maybe start working on d, b, m, n.

the nuffield programme has cards with a picture of a drum for d, a ball for b, a motorbike for m and a nose for n. you culd maybe make the cards or get object equivalents. then its a case of showing him the card/ object and slowly saying the sound, for example for m, you need to get your son to see how you put your lips. then try to encourage him to copy you. my son used to love posting the card (in a postbox made from a shoe box) once he'd had a go at saying the sound. you can also do various tongue exercises, let me know if you are interested in knowing more.

it is a very difficult stressful time but whatever diagnosis you do or dont get, focus on geting the support/ specialist intervention for his needs now and in the near future. we were so devastated with the Asd diagnosis and desperately worried our son would have significant long term difficulties, but things are so much brighter now.

keep coming on here for advice and if you are interested in finding out more about verbal dyspraxia, look at the facebook groups with verbal dyspraxia in the group name.

OldAntiquity Fri 28-Nov-14 21:21:09

My ds is a giddy boy so we worked on consonant sounds like P for pop when blowing balloons and animal noises worked too as he loves animals. But he also had mouth weakness which we didn't know until we had a private SALT assessment. He drooled a lot and wasn't great at biting food so we were supposed to get him to blow raspberries and such. Obviously my ds does have autism but he couldn't speak at two and now he can pronounce sounds age appropriately when he is doing echolalic speech, tho his own spoken speech comes out more disordered, which I will be mentioning to the SALT when I see her next, don't know what that means!

HHH3 Sun 30-Nov-14 10:00:30

Thank-you for all your replies. I really appreciate them. Apologies for not getting back sooner - I needed to take a bit of time out as I was starting to get a bit obsessiveblush

I think my biggest concern right now is him starting nursery in January - both because of his lack of speech and because he doesn't like other children. I'm basically going to put him into an environment where he's going to struggle to communicate and with lots of children. Just not sure if I'm doing the right thing.

I'm also wondering how to help his communication. Yes, he has some signs but we use BSL and nursery use makaton. And his signs are often wildly inaccurate. A friend has mentioned PECS and I'm wondering whether it would be a good idea to start using this. It would help him communicate with other people. But I'm worried I'm going to confuse him.

So all in all I'm a bit stuck right nowsad

kleinzeit Sun 30-Nov-14 14:23:32

It’s nerve-racking, because it’s not always possible to know in advance what will work and what wont. Kids can surprise us and it’s reasonable to try things out, see what works and what doesn’t. Will the nursery have some extra support in place for him? Our child-psych gave us a piece of advice that I’ve found very helpful for my DS: “If he usually copes in a situation, then fine, keep him there and he’ll learn from his successes. If he never copes, either adapt the situation so he can handle it or else take him out of it for the time being.” The nursery may be able to make some adaptations to help him, as they get to know him and see what works for him and what doesn’t; or you may decide it isn’t working at all and take him out. But it’s OK to try.

I agree with not giving him too many different things at once. It’s OK to take things a bit at a time, maybe keep PECS in mind for later. Your DS is still very young and he has plenty of learning time ahead of him.

HHH3 Mon 01-Dec-14 08:16:45

I don't know about extra support. I did tell the nursery when we looked round that he doesn't talk. I didn't have anything to back up my gut feeling about anything else so didn't mention it. But he's had his 2 year check since then. The HV is coming next week to do a further assessment so I'm not sure whether to wait until after that, when I'll know if he's going to be referred, before I talk to them again. Or to talk to them before that. I'm just conscious that I'll be dropping it on them just before Christmas. Then he'll have a home visit when term starts again before starting nursery the following week. I don't want to jump the gun but I also don't want to give them no time to prepare. Plus I also need to teach them 'his' signs.

Re PECS. Yes, I think I'll keep that in mind but not use it for now. I'm actually going to make a lot more effort with signing so he's got more signs he can do.

Catgotyourbrain Mon 01-Dec-14 22:38:22

You are right to note your concerns and consider them. Maybe write them down too so you can refer back in a few months if nothing immediate is clear now.

My NT DTs had absolutely NO words at 2 years. I asked the HV and she wasn't keen to refer although a paediatrician who saw one of them near this 2nd birthday was taken aback by that.

Three months later they were chatting away with their peers. I wasn't worried at the time because I could clearly see that the understood everything around them and were interacting an awful lot, and were clearly understanding speech. I think the HV felt the same. I guess that the difference is the feeling about the child's development as a whole.

HHH3 Tue 02-Dec-14 08:13:27

Writing it all down is a good idea. I've already done a timeline (milestones/concerns/health problems). Is there anything else I can add?

deadwitchproject Tue 02-Dec-14 10:40:49

HHH3 I remember you from my tonsils thread. Your DS and my DTS2 are a month apart in age and seem so similar. It would be great to share experiences smile

Your SALT mentioned him only using vowel sounds - why is this a problem?

HHH3 Tue 02-Dec-14 11:14:49

Back from the SALT drop in. He's being referred. She's also recommending that he's referred to the CDC. As the HV is going to be doing another assessment next week with a view to doing that the SALT is going to let the HV know and seemed confident he'd be referred.

Tbh I'm gutted. I do want these referrals because it's best for DS. And I really don't want to have to fight for them. But at the same time it's really upsetting that he needs them at allsad

HHH3 Tue 02-Dec-14 11:15:30

Hi deadwitch! I'll pm you.

Greenbootsbell Tue 02-Dec-14 11:32:28

HH I know it's hard
But it is brilliant you are doing this now
Then if it takes awhile to come through it doesn't matter
He will get help sooner if he needs it

HHH3 Tue 02-Dec-14 11:50:48

I know you're right.

I think I just have days when I think I'm overreacting and there's not anything wrong. There's obviously a problem with his speech but sometimes I wonder if everything else is ok and he's just a little bit behind. Then I speak to a professional and they clearly see a problem and it kind of hits me again. Does that make sense?

Greenbootsbell Tue 02-Dec-14 14:16:26

Yes it does
I was where you are three years ago and still feel that way sometimes
When they are so so little (as in my situation there years ago) it can "catch up" but there is no harm being in the system
For us when things went the way they did boy was I glad to have already had a lot of the assessments done
So, maybe your gut feeling is right & it will all be an unnecessary precaution that you are taking. But if time proves differently then it's great, he will already be in the system & you are halfway there iykwim :-)

Now it's done
Try to just enjoy him
Do as much as you can with him - trips out, get on the floor and play with him etc
Try and work out what schools are nice & nurturing and what nurseries feed into those schools so he will have mates to go up with & you build him a community of folk who have known him from tiny
And look after yourself :-)

(All advice I wish I'd had three years ago !)

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