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 glad I didn't upset you - the fact that my DS has ASD.

The climbing on tables made me smile as it takes me right back. He has graduated to windowsills and anything precarious. However, he is amazingly careful and, despite my fears, we have not so far been to A&E or had anything more than bruises.

He too is a tiptoe walker, although more so than your DD by the sounds of it. The referral to a paed was accompanied by a referral to a podiatrist (think that's the right term) and we eventually got piedro boots with a reinforced sole to encourage him to put his heel down.

It's not high on my list priorities but at least we will keep as much flexibility as possible and I spend very little on his footwear (every cloud). I was a tiptoe walker and do now have somewhat short tendons that can be sore after running. Might be worth asking for a referral for this too - can't hurt.

Great advice from schobe.

"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!"

curiously, there's very little material out there on how to teach understanding of language (as opposed to talking). One of the mistakes lots of us made was to try to get the child to understand complex things before simple ones.

So I'm cutting and pasting below a summary of a speechtherapist's radio programme.

first, she talked about Question-asking skills - for understanding language.

In order of development (but I don't "do" milestones so I'm not putting any ages in here)

1. "where's mummy/teddy/something exciting?" by looking at the object or otherwise reacting in a way to show understanding.

1. Choice questions

start with holding one of each in your hands or using a visual (visuals are going to be a big part of your life I suspect .

1. "where's the X?" on a picture - respond by pointing.

1. Go get/show me the X.

(v) ideally, from another room (iv)if that's too hard, try from across the room (iii)if that's too hard, from a selection on the floor (ii) if that's too hard, from two objects in the adult's hands (i) if that's too hard, adult takes child's hand and selects hand over hand.

1. "What's that?" - respond with appropriate noun

1. respond "Yes/No" to a question.

NOW TO THE TRICKIER ONES - I WILL NOT SAY WHAT AGE LEVEL THEY EXPECT BECAUSE THAT'S NOT HELPFUL BUT THESE NEXT ONES SHOULD ONLY BE ATTEMPTED WHEN YOU CAN DO THE ONES ABOVE.

1. Respond to "where's mummy?" with an answer like "at work" or "in the sitting room"

1. Object function questions

"Who says moo? does a sheep say moo? NO! A Sheep!" "Can you point to something that we wear?" "what do we need to make dinner? yes - the pot". (more details on this in my other thread of today)

1. Critical thinking questions - making inferences.

"What do we wear when it's cold?"

10. Categories
    "Which one is an animal? Which one is a building?"

11. Negation - "which one is not wearing a hat?"

12. Quantity
    "Can you give me the rest of them?" "Can you put some in the box?"

Hope that helps.

and here's a link to another thread describing more milestones for understanding language, so you can figure out what to work on first.

www.mumsnet.com/Talk/special_needs/752062-another-receptive-language-programme-on-the-radio-with-the-annoying?

You will of course only be working on the first one or two goals at the moment. I missed out the dates the child was "supposed" to understand these things because many of us on the special needs board at the time found it a bit depressing to dwell on just how behind our kids were, but it goes from 18 months all the way up to 4 years. So do just stick to the first one or two.

"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!"

last one from me I promise.

"It Takes Two" won't in itself fix her understanding. But after using for a few months it will be absolutely second nature to you not to give her a long sentence describing what you want her to stop but to just say "uh-oh" with a very clear distinct change in your voice pitch and a shake of your head. And if from that you conclude that she has trouble understanding voice pitch/gestures then you'll have useful info about what to work on next.

just read your op and not the thread. but wanted to give you my experience.

dd was not diagnosed as partially deaf until she was 9 years old. she had passed all her hearing tests, her speech didn't develop as much as her twin brothers did - of course the health care professionals told me it was becuase they were twins. oh oh...it was also down to my socio economic status and the fact that clearly as a young mum i had the telly on all day

eventually she did get diagnosed - complete fluke and becuae we moved to a different part of the country.

so if you are in any way unsure, ask for a second opinion

Laura Mize produces DVD's called 'Teach me to Listen and Obey'. To gain understanding, first they need to listen. We found this really useful, and certainly helped us. When DS was 2.3 and only saying 10 words, our first SLT exercise was to sit down after every meal with a set of 6 pages each of which had four pictures. We then ask DS 'where's the cat?'. It took a few days before he could point to the cat and when he got it right gave him a chocolate drops (no such treats at any other time of day were allowed). After a while he got all the pictures right everytime. We then swapped them around (same four pictures on each page, but in a different place) and went through the same exercise. After he got that sussed, we got a toy post box and put a two pictures in front of him and said 'cat' (we demonstrated a few times that you then had to post the picture of the cat). This helped teach him to follow instructions a bit. Once he understood this, we moved to verbs too. You can find Laura Mize on youtube I think too. Hope this helps. It's all little steps in the right direction. 10 months on our DS is doing great. Our next paed assessment is soon, grommets have helped (he passed his first hearing test perfectly before the next three showed a 45 decibel hearing loss).

Dd is also quite careful with the climbing, schobe. Well, she doesn't look it at the time but we haven't had any major falls as of yet! She is mostly sticking with the kitchen table atm but she did freaked my friend out yesterday by getting up on my sewing machine cover! :o I think as she is not tiptoe walking all of the time I will hold off on that and see how she goes over the next few months then get her referred if need be :)

Thanks for that list lingle, that is brilliant and gives me an insight into the stages I need to help her through. She can currently do point 1 I think occasionally, although a lot less than she used to. that link is really helpful too, will bookmark it :) I think I am making things too complex as she obv hasn't got a clue what I mean, so will simplify a lot.

Thanks for sharing your experience, custardo. I had assumed that as she'd passed a hearing test I just needed to dismiss that but I see that is not the case so will keep an eye on her. I am young and look younger (so I'm told!) so I feel like I already get plenty of looks. I have already been advised to read and talk to her because obv I hadn't thought of that!

thanks also cjn, that exercise sounds really helpful :) def going to watch the hearing!

Thanks again everyone :)

Remember hearing is a 2 part process, physical hearing and then auditory processing. With glue ear they can't physical hear properly for a while then it clears and then the brain has to relearn how to hear, they get glue ear again and the brain forgets how to listen properly etc etc etc

Also when I said my dds hearing curve wasn't normal, in one ear in the highest frequencies she was at 39 decibles the other about 35, 40 is the cut off for hearing impairment I am still absolutely fuming that they classed that as a pass when she spoke with the classic intonation of a hearing impaired person and the sounds she didn't use at all are all the ones they should learn first ie the high frequency ones. So please do not assume that her hearing is fine!

I think you need an assessment as well. The wait can be horrendous both emotionally and just in terms of how long it takes. If you get on the list then find you don't need the appointment you can always cancel.

I hummed and ahhed about my son for ages. He had some obvious issues such as not pointing and losing words but was very affectionate and loved a joke and really liked people. For us the worst happened and he was dxed with autism. Age 12 now he is severely affected (can't talk) but still very affectionate and very funny and still likes people. He's made life more difficult but also far more enjoyable than I expected and he loves surfing - which is a pretty good obsession to have - it's all he wants to do.

One thing I will sayis that even if you ended up getting dx (and of course that's a huge if) it can be almost impossible to predict the future from how they present as young children. Some of the kids who appeared much more affected than ds1 at a young age have done brilliantly to the point where it's hard to imagine they had so many problems - even any problems. Getting in there early can certainly help progress. I of course also have met others who at a young age seemed to have all sorts of developmental problems which just seemed to sort themselves out.

There is nothing worse than wondering whether to take the first step - it's awful, and I'd ask the GP or HV for a referal to a developmental paed or whatever system they use in your area (ds1 had a 6 week assessment and saw a bunch of professionals)

Lingle's suggestions are great - they're good whether there's a problem or not. Another cheap book is baby talk by the now deceased Sally ward - lots of ideas in there.

Oh also on the first signs website there is an excellent video library where you can compare typical behaviours with behaviours that might indicate a problem in babies, toddlers and young children. www.firstsigns.org/

Good luck! PECS is quite hard to implement alone - do hassle for so me SALT input.

my dd2 responds really well to cbeebies something special show she really enjoys watching it and i sit with her and help her to do the signs it gives us more than just a learning experience but a chance to spend some close time, she also enjoys the something special magazine its brightly coloured and again displays some signs. i do use makaton with both the girls as i use it at work so it helps me and them. i can sometimes get 10 minutes of calm during this time.

ok, im questioning whether to post, but hopefully you will find it helpful.
I started noticing dd2 loss of words about 18months, her tip toeing, hand flapping, failure to follow points, appearing deaf at times, and that when we were at toddler group she was always alone. Her play, when you looked was routines and everything used as it should eg: making tea with tea pot, talking on phone, changing babies bums so nothing that required her to imagine, just copy everyday things.
SHe was referred quickly to a paed, mainly because I had dd1 who was autistic. She was given a verbal dx at 2 years and full dx of autism at 3 years.

Trust yourself, start writing a daily diary and demand a pead referral. These things take ages to come though and early intervention has a huge impact. We were very very lucky that there is a private autism preschool who worked wonders with her.
At 4 years old she has started a main stream nursery, with a 1-1 but making huge moves forward and her speech has come on wonderfully.

feel free to PM me and hope my post hasnt upset you.

Hi guys, sorry I haven't been back for a few days, am finding this hard and have been hiding for a few days. DD2 has yesterday learned how to sign 'more' for food, which I kind of forced by giving her little bits of food at a time and waiting for her to ask for more. Yesterday she also pointed at something that was interesting, so that is a positive. I am still v worried though and struggling to get on with stuff, impatient with the children and DP and just generally not coping very well.

Thanks for your posts :) that is very interesting about your DD's hearing RandomMess and shocking that they would pass her at that level with the issues she had! DD seems able to hear now but she didn't before and was v unresponsive so will see how she goes.

DD is also very affectionate jimjams, always up for a cuddle and kiss and is very friendly with others. She often goes up to people at groups and babbles in their faces. She is also very smiley, in fact that is what has always led to professionals ignoring what I say as apparently it's hard to believe that this smiley baby could be screaming and refluxing all night. I couldn't find the hv number yesterday but am going to get it this morning and ring later. Thank you for the link, I have been looking at the different videos and it's very helpful.

DD loves tv kirst and will be mesmerised by it for ages, so I have to ration her. I didn't use signing with DD1 as she was a v early talker and so didn't need any help with communication but I worked with a non verbal adult with learning disabilities before I had the dc so can remember most of the signs luckily.

Thank you also lisad123 for sharing your experience. DD's play is not particularly imaginative, tbh until v recently her play consisted of chewing on toys. Now she will get them to kiss sometimes but still lots of just holding things.

Thanks again guys. Off to take dd to group now, where I will ignore the babies who are doing more than her and try and just have fun.

Wow if she can learn to sign 'more' in a day that's fantastic. You can extend to more banana, more milk, more sandwich etc and see if she starts copying. Giving things she likes in little bits is a great strategy to kick start communication. Remember to hold the bit she wants up near to your eyes so she gives you a sort of eye contact when looking.

Hope you enjoyed the play group

There are many positives in your latest post, best of all she has you as her mum who is giving her what she needs. Keep going!!!!

Don't feel that you have to go to play group if it makes you miserable. It can be like torture (if you want to go no problem, but don't go if it makes you miserable).

I hated playgroup! Dd2 would spend while time in role play making tea alone.

I am really pleased with her learning to sign more so quickly but am keeping an eye on her to see if she keeps it or not. She won't sign anything that doesn't get her an instant reward so we are stuck at down and more for now but I'm pleased with that. She will make eye contact when asking so that's good.

Thanks for that randommess, it's good to hear when I feel like an incompetent who doesn't have a clue! :(

I go to the playgroup as otherwise I'd go stir crazy and like to see my friends. It was a little hard yesterday as my friend was there with her ds who is 2 weeks older and pretty average for speech (I.e. Miles ahead!) Watching him following simple instructions and answer his mum while I was pulling dd out of the dolls house wasn't great but at least we got out and dd enjoyed it although she does spend most of her time on her own.

I rang the hv yesterday. I plucked up all my courage and she didn't even really listen to me properly :( no home visit but she is going to speak to portage about whether they could help dd. I don't think she'd qualify for that though would she?

She also advised me to see the GP, which I'm going to do tomorrow. What are the most important things I need to mention? It does feel like dd is engaging a little better recently but still no attempts at verbal communication/improvement in understanding.

Thanks :)

Does she pass the M-CHAT test? If not I would just say that she doesn't and therefore needs a referral for assessment. Many GP's are completely ignorant about communication disorders anyway. I had one tell me girls never get autism (I did correct him).

No she doesn't but I only did it myself, it hasn't been done by a professional. Should I still mention it? The hv did say to me that I should be prepared that lots of doctors won't refer this early and that usually these referrals are done after the 2 year check. I am not happy with this and will not be accepting it. I refuse to wait another 4 months when dd has made no progress in speech/understanding/communication (bar 2 signs) in 6 months. This is just making me more anxious though, having had so many people dismiss me when trying to explain about dd I just don't want to do it again :(

Definitely mention it.

The other thing you could do is do it 'officially' via forepath ($10) which would then give more ammo to being referred.

www.forepath.org/

Don't be fobbed off. Why wait until 2 if you are worried now. I became concerned about ds1 at 17 months. We were fobbed off and told to wait etc etc and told there was nothing wrong and he wasn't dxed until nearly 3. The worst thing though was that I wasn't living in blissful ignorance (that would have been okay) I was worried sick the whole time but also treated as an over anxious lunatic mother. An early referral would have been emotionally helpful to us as a family.

Thanks jimjams. Ikwym about the being worried sick all the time, it's just in my head constantly and I can't relax. I'm already feeling as if people are perceiving me as overanxious but I wasn't like this at all with dd1, I am a worrier but not an over worrier and they never go to the docs unless really ill. I agree with why wait, i don't think i could cope with another 4 months of waiting and if they go the same as the last 4 months there'll be no change anyway.

Take a list of your concerns. It's important to stress to your GP that you have had these concerns for a number of months...... since your DC started to lose words that she had previously used, and together with other behaviour (from your list) you feel may point towards ASD.

If the age issue is brought up, say you would be VERY UNHAPPY to delay a possible dX, as early intervention gives you more time to address her problems. Be a bit pushy, don't be fobbed off.

My DS3 was dx officially at age 3, but we had been aware since he was less that a year old that he was on the spectrum. DH is a GP, and we had already initiated all the basic self help strategies, working with his speech and behaviour, but by 2 1/2 it was clear he needed more help than that.

DS3 spoke early (had a LOT (30 or 40) of words at around 10months), then totally failed to progress much (did not actually lose words), for about a year. He was VERY physical and active, with all the climbing described by other posters here. He was happy, smiley and engaged with people (adults more than kids his own age). He appeared to play well, but actually only reenacted real life (ironing, cooking etc).

Your DD is very young, but listen to your instinct - I know we had various family and friends (and teachers!) over the years telling us that DS could not have Asperger as he smiled/looked at people/was too clever etc etc.
Better to do all the tests/screening and be told she's fine, than to delay a possible dx for a year or two.

charchar you are not an over anxious mum you are concerned for your child and in my eyes that makes you a great parent i would be more concerned if non of these things concerned you or you just blissfully let them lie. dont hide away. i felt like that but since i've been watching this feed i dont feel so isolated non of my friends children have problems and therefore its difficult for them to understand they are there and supportive but they dont understand the worry and i sometimes think i bore them with my constant worry. i know the feeds seem pretty daunting i work with young adults with learning difficulties including people with autism and the outcome definately isn't all doom and gloom, so i know what could be coming but if it came i'd be happier because then at least i'd know and i could deal with it. its the not knowing thats the hardest thing and its the constant battle to get people to listen and take things seriously without thinking i'm over protective. keep talking hun.

Thanks oldmum, will take a list and see how it goes. Was meant to be today but I got away and managed to spend a day doing my bfing volunteering which I really needed as a change :) I keep having really frustrating debates in my head: 'no but she's fine because...' 'but I'm worried about this...' driving myself crazy! Thank you for sharing your experience with your ds.

Thanks for your post kirst, I really identify with what you have said, particularly about the unknown being the worst thing. I hope that if I can get a referral then I will know I have done all I can in that way and try and just relax and help her communicate as much as I can.

Hi Charchar - I've been reading your thread with great interest as my 25 mo DD is just the same as yours. No a single word, not much pointing (she almost only points at characters in her peppa pig books and very little else).
And I am also making myself sick with worry since August.

We have moved to France last year and still unsure whether this has disturbed her in her development or what. We saw a child psychologist at 21 months who wasn't worried for ASD (mainly because at some point, she took his phone and put it to her ear and looked at him straight in the eye with a smile - so he smiled back and said nothing to worry about). Still he couldn't say why she isn't answering her name...

We're seeing him again in 2 weeks and her hearing is being checked as well in 2 weeks time. How I wished there was "only" something wrong with her hearing... ifswim...

I'll keep an eye on your thread and I hope we can support each other with all the worrying and sleepless nights! have a lovely weekend x