DD2 lost words, passed hearing test, can't stop worrying though!

[CharCharGabor]

Hi, I posted about DD2 last month whilst waiting for her hearing test. She began to talk at around 13 months and acquired about 5 words. Since then she has gradually stopped using all of the words bar Haaa for hello and goodbye and Leh for yes, which is only used when asking for a breastfeed. She also signs down but hasn't picked up any other signs. She just began to point a month ago and does use it a few times a day but not as often as I would expect. She will occasionally follow a point. however, a lot of the time it feels like she just ignores me :(

She had a hearing test at the start of October which showed there was no issue with her hearing. This surprised me as tbh she does act as if she often does not hear us. I can't say she reacts to her name all that much, it often takes a fair few goes/touching her arm. She also wanders a lot and doesn't spend a lot of time sitting down and playing/engaging. She seems in her own world at times, especially at toddler groups. I am aware though that this is quite normal for toddlers and I know I am thinking too much. She is sociable and likes to babble nonsense at me/family/friends/strangers. Her eye contact seems good but it is hard to get her attention. She is very independent, not really bothered about checking where I am for extended periods but at the same time is occasionally clingy.

She babbles all the time, in fact for a child who has no words she talks all the time! It looks like she is communicating and I'm sure she knows what she's on about but I've no idea. She cannot/won't mimic any words or sounds. She has also just started walking on tiptoes about half of the time which she didn't do before although I know that may be because she's just playing around with what she can do.

Well, after all that waffle, I'm not really sure what I want from this post! I am worried tbh and it is in my head all the time so it is good to get it all out. DD2 has been referred to the SALT which I'm glad about as the waiting list is long. I am sure that I am thinking and worrying far too much and need to relax and let nature take its course but I just can't help it! Thanks to anyone who got this far :)

I'm not as informed as many on here but I can tell you that my DD1 did the ignoring/not being aware thing too and she walked on her tiptoes...did not play with others at todler group but stuck by herself....also she was clingy and though she spoke well by the age of 3 she went completely mute once she began nursery...only spoke at home.

She''s 7 now and very bright....it was and still is hard to get her attention...I think there are many great things about early intervention and even if there's nothing wrong, SALT will at least set your mind at rest.
How old is your DD now?

Thank you for your post, it's helpful to read :) I thought that about the SALT, I figured the waiting list is going to be long so she has plenty of time to start talking and then I can cancel the appointment when it comes through. If not, then we're already in the system and don't have to wait a long time again. DD is almost 20 months now.

She''s very little yet...I would remind myself that many kids don't speak clearly until they're cracking on for three!
I see why you might worry that DD lost some words...but I think some degree of that is usual too.

Do you talk to her all the time? As you'r going about your business...I think a running comentary daily is a good thing.

Losing words, tiptoe walking (although that sounds like a choice she's making so probably nothing to worry about), ignoring you can be signs of something wrong. I know that's not what you wanted to hear, but I would go and talk to your GP. Sorry. It may well be nothing, but there's nothing wrong with getting checked out. If there is something not right it can be better to get intervention early.

Pointing is a good sign, as is the eye contact. I think the fact she points at all is a very good sign, it's the lack of pointing that is a concern as far as I know.

I'd write down anything that concerns you, including maybe little things that just niggle at you but you don't think are important. Take it to the GP and see what he says. He may want to refer you, but remember that people are referred and nothing more happens. He maybe able to reassure you. To me, what you've said here could easily be nothing, but it really is worth checking for your own reassurance.

Glue ear can cause intermittent hearing loss so it might be worth checking again.

"I am worried tbh and it is in my head all the time so it is good to get it all out."

I know where you are coming from. I used to do mega-posts about DS2's (lack of) language on here and it was very therapeutic. But as the worry was constant, I had to do another mega-post within a few days!

Have you got "It Takes Two to Talk" (www.winslow.com - £32 but cheap at twice the price - high quality, non-scary) and are you using it? Improving your own techniques is one thing that you definitely can do at this stage. And it stops you from bad habits like getting the child to repeat words just to see if they can do it .

Sometimes when you feel that you are doing something about the issue (in my case working on the It Takes Two techniques) it pushes the worry down into place and then funnily enough that can help you relax and enjoy the child. I guess it's all a question of what makes you and her tick .......

My kids didn't have hearing issues but I'm sure that as the other poster said it is very sensible to check on glue ear more than once. And you do right I'm sure to get referred to the SALT - like you say, you can always cancel.

Thanks for your posts :) I do talk to her all the time, just what's happening through the day and we play together and sing and read a lot. She has had more 1 to 1 attention in the last 2 months as dd1 has gone full-time at school and we have been going to lots of groups.

I have been sort of leaning towards going to GP and asking about referral, although the idea does scare me. I do worry that they will just dismiss me and say she is too young. Don't get me wrong, she does engage quite a bit eg. Singing songs she does sometimes listen, listens to books if she is in the mood (although this has only just happened), will play with blocks with me but it is still hard to get her attention lot of the time. She does come and ask for hugs quite a lot and just started giving kisses which is lovely. Things that she does just niggle at me though. People say she is the happiest smiliest baby they have ever met and so laid back, independent etc etc. Even when she screamed all night with reflux up until 1 because she just smiled whenever she was with other people.

I had read that about glue ear talkingnonsense, she was only tested two weeks ago and her ears have been fine since then but will definitely keep that in mind for the future :)

yes lingle you have hit it on the head with the mega posts and needing to offload again so soon afterwards! It just consumes your thoughts doesn't it. I will get hold of that book and have a read, it sounds really good. I have been guilty of often saying 'can you say X?' but have backed right off on that as she can't/won't even attempt to make a peep and I don't want to put any pressure on and set her back further. I have been guilty tbh over the last few months of having the tv on a bit too much due to extreme exhaustion and just not being able to move but I have reduced that massively and am trying to just enjoy communicating with her even without an understandable response.

Argh, why does everything have to be so worrisome! I worry about over thinking it and making an issue out of nothing, at the same time I worry about not getting her checked and missing out on things that could help her. then I think, well she's not even 2 yet, stop freaking out and just her a chance! And I just go round and round in circles resolving nothing!

Thanks again, it's so helpful to be able to offload and get some advice :)

"I will get hold of that book and have a read, it sounds really good. "

oh please do, it is so good for people in our position. It looks rather simple - but that's because hard writing makes for easy reading.

www.winslow-cat.com/it-takes-two-to-talk.html

You could also good Laura Mize who has some DVDs showing you speech and therapy exercises. Do go to a SLT and when there watch what they do and ask them to show you exercises you can do at home. I found it really useful.

DS is now just three, and we've basically had to teach him to listen and in turn talk. He's catching up, still under paed assessment and so on. He's just had grommets for glue ear, and there might be something else that's slowed down his speech development but we've yet to figure that out. Since the grommets it certainly feels like he's more responsive and we've noticing more speech concepts day by day.

Lots of kids are late talkers. Some catch up on there own, many need SLT and a some have other issues at stake. Only time will tell. Very easy to say 'take things day by day', as I know the worry can highjack all brain space at times (still does for me). However, there's so much you can do to help teach your DD to talk, and when you see progress it's a real motivator and reassures you that you're doing all the right things (and being a good mum). Do ask for a paed referral - better safe than sorry, and the quicker things are done the better should it be needed. I've not regretted this at all even though at this stage there's no clear diagnosis and we just keep going to see how he's getting on.

Here's some other things that can help:

ICAN - charity that will send you a pack of cards each of which has a tip for great SLT games that can help teach your kid to listen (the first step). It's free too. Google them and call up.

Sookie and Finn DVD and cards - The DVD is specially for late talkers and done with a SLT. It just runs though a kids regular day.

Baby bumblebee - from US, pricy, can be helpful though some words are very American. I'd get the others first.

Personally I'd say watch out for the AFAISIC (?) helpline. I found it rather unhelpful as they seemed to be very quick to suggest possible diagnosis which seemed OTT to me and sent me into a mega anxiety spin...

Hope that helps.

My dd had very very poor speech, learnt a few words (badly) then didn't progress. She passed 2 NHS hearing tests but a private test done for free by someone I knew revealed that her hearing curve was far from "normal" - the low frequencies were way too sensitive and she was near hear impaired for the high frequencies.

Turned out that it was an auditory processing problem rather than a physical hearing problem. We were very fortunate as it's unusual to get this diagnosis at such a young age and her progress via Johansen therapy was outstanding - she was 3.4 when diagnosed and treatment started, I believe most children don't get this sort of diagnosis until more like 7.

It could be something else entirely, or nothing but I just want to add because she consistantly sailed through her NHS hearing tests which missed a fundamental hearing problem through the way they were presented.

thank you for more great advice! Will check out all of these things :) am finding it very frustrating at the moment as I can't explain anything to her. for example I can't tell her I'm getting her some more water so she screams because I'm taking her cup away. She understands our daily routine as it's pretty prescriptive due to DD1 being at school so she really struggles with changes in it because she doesn't know what I'm saying. T the other day tea was running late so I decided to bath them first to save time. She threw herself on the floor and had a massive tantrum because she wanted her tea. The tantrums are starting to increase now and I'm expecting them to get worse as she is so frustrated.

I just feel like I have to play a bit of a waiting game now to see how she progresses over the next few months, although I am going to see the GP. I am hoping she just suddenly starts talking one day and my worries will be over but I'm not feeling optimistic. Add to this that her sleep, after improving for a few nights has gone to pot the last two and I'm feeling fairly down tbh. ah well, more waiting and worrying to be done!

Have got it takes two to talk and have read the first bit. Started OWLing and she does engage me sometimes but mostly just gets on on her own for ages before she bothers to communicate with me! Will stick with it though and plough through the rest of the book.

Off to do some googling now! Thanks again :)

CharChar, hope you are ok. I know how you are feeling - it's not a nice place to be. I would advise you to go to your GP and ask for a referal. If there is a problem with your dd then the earlier you start some kind if intervention the better.

Good luck

Thanks rnb, I'm ok, just stressing :) another hard day today with massive tantrums but I'll get by. I just don't know what to do for the best, she is shattered by 11am but if I let her nap she takes around 2 hours to go to sleep in the evening which I can't hack. So I spend the day trying to keep her awake and calming her down, not fun at all! Think I will take her to GP next week when dd1 is back at school.

As I have a child with autism I can't read this and say that the signs you are listing are not possible warning signs for autism. If you have any concerns don't wait, get a referral. Everything involved in getting a diagnosis takes a long long time & getting good provision takes even longer - so as for SALT get on the referral list to the paediatrician - as you can say you can always come off it if things improve.
this checklist gives the classic signs to look for and is really useful to do before you go to the GP
Hopefully its nothing to worry about - I don't know how old your child is. What I do know is early intervention makes a huge difference and the last thing you will need if there is a problem is guilt you didn't act.
Many many parents do the is it / isn't it, its not always easy to tell the difference between speech delay and autism when they are young.
A child who is unusually anxious / difficult or unusually passive / self contented is something to investigate
Sorry I know thats not what you want to hear.
If you do have serious concerns after doing the checklist (perhaps get your other half to do it separately) head over to the SN board. We are a friendly lot and have been where you are now.

I have to say although I know little about autism it does sound to me very different to my childs severe speech delay.

My dds first SALT assessment was when she was 2.5 at the most and at that point her erm "play" skills were great, she played pretend games (tea party) and understood much of what was said/what was going on and was ok at making herself understand (through pointing, dragging, signs etc) - I suppose she was desperate to communicate with us and it was clearly all our fault we didn't understand her!

I suppose I am one of those people that says trust your Mum instincts there is clearly an issue and I'd always be overcautious and knock on doors and push to have things ruled out.

Have you seen your health visitor recently? Ask for a home visit see if she shares your concerns or not. Either way ask for another follow up home visit in 3 months time to see what changes have happened. Like you said further up you can always cancel appointments if your concerns disappear whereas the waiting lists are often unacceptably long.

thank you for your post :) yes its not so much what I want to hear but it is so helpful to be able to talk about it as if I mention it in RL it is just totally dismissed.
I have just done the m-chat thing, will get DP to do it as well as see how it comes out. So far with just me doing it she has failed a fair bit of it. It's hard to answer some of the questions though as I'm really not sure. Her pointing, which has only started happening in the past few weeks, is difficult to decipher. She doesn't point to ask for anything, tbh if something is out of her reach she will either climb up to get it or won't indicate she has noticed it. She doesn't seem to point to indicate interest either, I don't think anyway. From what I have noticed, she doesn't seem to even be looking in the direction she's pointing in, although she does sometimes follow her own point, but doesn't seem particularly bothered about what she sees.

She does play pretend with a phone, and will sometimes cuddle a soft toy and kiss it. She recently started pushing cars along the floor. I have to say though, a lot of her play involves picking a toy up, putting it down and picking up another. She also puts everything in her mouth, and I do mean everything. Toys, stones, leaves, sand, bits off the floor, it's ridiculous! I have to watch her like a hawk when we're out because she'll pick up rubbish etc and stick it straight in her mouth. She just seems like a baby rather than a toddler, i can't leave her alone for a second.

Climbing is the new thing, she has realised she can get onto the kitchen bench and stand on it dancing, rolling fruit from the bowl off the table, climbing onto the table. This morning she crawled along the table and got into her highchair because she wanted breakfast. I'm just waiting for her to fall off and bash her head/worse. I do my best to watch her as much I can but I still have to go to the toilet/clean/cook/pay dd1 some attention.

How much attention would you expect them to pay to other children at this age? (20 months) she will go up close to other children's/adults' faces and babble before wandering off again. Dd1 is on half term now and I can't say they play together much although dd1 does make a lot of effort. They will sometimes play a chasing game after bath but it is always instigated by dd1. I would say she does sometimes engage with me if I get her attention and she is interested in what I am doing but it's bloody hard work! And if she doesn't want to do what I am doing she just ignores me.

Argh, sorry, yet another long post! Not sure the extreme sleepless nights we have again here are helping me not obsessively focus on this! Thank you for invite to sn board Agnes :) I will definitely dip my toe in over there soon.

RandomMess, yes dd2 does sound different to your dd. Dd2 doesn't appear to understand what is going on /being said and doesn't make any attempt to make herself understand (unless the nonsensical babbling actually means something!) She will make a kind of uh noise if I ask her if she wants to get down from the highchair, which I think she understand as she still sometimes do the sign. I spoke to a hv about her speech which is how I got the salt referral but I may ask her if she can do a home visit. She doesn't know dd2 very well as hasn't had much contact with her but it may help. Unless hv says she is 100% sure nothing is wrong (which she can't really) I will take her to the GP and see about a referral.

Thanks again guys, and sorry again for epic post :o

hi new to mumsnet and hope you dont mind my input but, my youngest displays exactly the same as your dd2. when she was born she developed a large birth mark and was referred to the childrens hospital she has and still is under going all sorts of random testing which, i try not to worry about too much as she is under consultants, however her lack of speech is becomming inceasingly worrying as her methods of communication are becomming increasingly aggresive. She makes attempts to make certain noises but when she cant get anyone to understand she will just bite and these bites are very painful and unfortunately its my four year old that cops the most of it. i dont know how to stop this i've tried all the usual talking, disapproval, tried the naughty step she just finds all actions extremely amusing she has been for an nhs hearing test but reading an earlier post think i might try and re-visit feeling very out of my depth :-(
She is also a climber and also puts everything in her mouth about a month ago i caught her munching on a branch of a bush in the garden i later found out to be a hydranger which can be highly toxic to animals and children, she is a handful.
Hopefully if i find any useful info i will be able to post and help

Hi kirst, sorry you're going through this too :( it's so worrying isn't it. Dd2 luckily has not become aggressive as yet but she did throw a toy at my head the other day hard enough to make a lump! I completely overreacted and yelled due to the shock and she hasn't done it since, will wait and see though. She is hurting herself when tantrumming though, she throws herself into a sort of sideways roll where she bashes her head every time, I hope this is just a phase. The climbing is just rubbish isn't it, I am just waiting for the a and e visit as dd2 just won't stop getting onto the kitchen table constantly. They seem like babies rather than toddlers, there's just no communication. I think possibly the reason dd2 is not aggressive when I don't understand her is that she never tries to communicate in a meaningful way, so can't get annoyed that I can't understand her, iyswim! Hope you get some answers soon :)

there are loads of positives in what you describe, but the sleepless nights must be making everything so much harder. My sons had awful problems understanding language and I used to think how easy life would be if they could understand what I said to them....(eventually they did).

do keep at the "It Takes Two" - it will help you make more of the communication she's giving you and it's a great way to channel the anxiety. This problem may vanish but it won't vanish overnight so the techniques would be useful for at least a year.

pointing is a bit of a red herring unless it's being done to show someone something.

kids aren't expected to truly interact with other kids until age 3 but obviously you'll have seen some show curiosity about others by this age.....

how lovely that her sibling is initiating games....my DS1 basically taught DS2 how to play... how to be a boy.

You sound as though you're willing to keep an open mind about the whole referral thing so perhaps it would do no harm to ask for that referral? To interest a GP, you need to stress that she doesn't seem to understand simple instructions despite passing a hearing test and that she doesn't seem to be able to show you what she wants.

Can you carry on using/teaching signs alongside "It Takes Two"?

Hmm, I agree with the other posters who suggest it could point to autism/aspergers. Sorry. I'd go to your gp/hv and have a chat.

Re the speech - my ds age 4 says 'l' for 'y' (so 'yes' is still 'les') and according to ds's ST this is apparently not a speech delay but a disorder - which will need ST to rectify. We have seen an NHS ST and a private one.

Good luck, and hope all is ok. But in any case, the sooner you get the ball rolling the better. I agree with repeating hearing tests - my ds had tests for glue ear every 3 months for a year before he was referred to ENT for grommets.

hi charchar my dd2 also hurts herself when having a tantrum at first i ignored it to try and prevent it from becomming a learnt behaviour and a way to gain attention but it has escalated so now she will occasionally just bang her head regardless of reason i have started to wonder whether she gets some kind of sensation from it, hopefully the consultants will be able to come up with some answers. The biting is more apparent when she isn't getting her own way i.e dd1 playing with a toy or even sitting too close to her if i've said no to something she'll bite me
i am completely out of my depth hopefully it'll be proven that all our worrying will be for nothing

See this is why I love mumsnet and would defend it to the hilt - so many lovely people making an effort to come and listen and advise a worried mum, it's so nice :)

The sleepless nights do make it a lot harder lingle, am shattered most of the time. This has been an ongoing issue since she was about 5 weeks old. I believe she had reflux, not that I received proper support in that but she spent most nights up until about 13 months screaming for at least 5 hours at a time. Since then it has been less intense but no less constant!

I do wish she could understand at least a few basic things but I suppose I just have to accept that she can't and work with what I have. I would like the first thing she understands to be don't climb on the kitchen table! :o

I will definitely stick with the it takes two, it seems like a really good book and I am ploughing through it :) dd2 def doesn't point to show anyone anything. Dd1 is a sweetie indeed, makes a lot of effort to get dd2's attention and tries to initiate games :) I am, I think, definitely going to ask for a referral and will remember to mention those things specifically.

RandomMess, I am definitely going to keep up with the signing as a few seem to be going in :)

CocktailQueen, that is interesting about the l instead of y sound, will keep that in mind :) I think she used to occasionally say yeah in amongst the lehs, but that has gone as she's lost the other words. Will keep an eye on her hearing as well and get her rereferred if necessary.

Ah kirst it is so difficult and worrying :( especially when it seems not to have a quick fix and there are so many unanswered questions. Hope you get some help from the consultants :) I totally identify with feeling out of your depth, I have been saying for a while that I thought it was supposed to be easier second time around but I haven't got a clue what I'm doing with dd2!

Thank you again so much everybody. This thread has been helping me immeasurably and have been reading and rereading it regularly to calm me down when I get too stressed. You guys are amazing!

Ok I don't know whether I'm going to be a help or a hindrance. Your DD sounds exactly like my DS in every respect with the one exception of her going up to people and babbling to them.

My DS is nearly 3 and a half now. Does your DD still have unpleasant nappies, ie the stools are not firming up as they did with your first? I only ask because this was an issue with DS so we took gluten out of his diet (couldn't manage dairy) and it helped. That's an aside really.

Our outcome is that DS does have autism. However, even if he hadn't, here are things I wish I'd done a bit sooner.

• loads of 1 to 1 time, floor time, whatever you want to call it. Perhaps not going to lots of toddler groups if you're going to feel a bit silly being helicopter mother. Lots of peekaboo, tickle games etc to encourage back and forth interactions.
• Holding desired items up near my eyes then praise eye contact and reward. Constant encouragement of eye contact.
• Buying It Takes Two to Talk (you're way ahead!) and/or More Than Words (similar but ASD focused).
• Using objects or symbols to warn him what is about to happen (especially if out of routine or in the middle of something he's engrossed in). And giving him time to get his head round it (we say 'two more minutes' and hold 2 fingers up - in a nice way ).
• Going on PECS course. This may sound a bit extreme but using PECS is the single most important thing we've done with DS. Without it he would still have little to no communication imo. The course I went on was £150 and I scrimped and saved to go just before he was 3. Wish I'd gone just before he was 2.

I soooo hope I'm not just depressing you. Your DD will most likely come on in leaps and bounds all of a sudden. But you won't have lost anything by working with her.

Finally, autism is really not the terrible thing I used to think it was (in my ignorance). DS is a complete joy.

Thank you for your message schobe, and no it is definitely a help! DD's nappies are ok now although she does often skip days at a time, especially if under the weather. She did seem to have a reaction to dairy up until at least 1, with worse reflux symptoms, nappy rash etc. I saw a dietitian but she wasn't interested due to dd being a healthy weight. She doesn't seem to have a reaction now but is very hit and miss with food in general and often doesn't eat much at all.

The tips you've given are great and I will definitely start implementing them. Even if she does suddenly come on and the issues go away, it can't hurt to give her more input. I was looking at pecs and will look more into it as it seems like something that could help her even if she does start communicating soon.

thanks again :)