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Original poster

Non stop googling and worrying about my ds ....

48 replies

SadieChanges · 26/05/2012 08:03

He is 19 months

No talking but noises like car , yeh , gee ,
No pointing
Claps but only when annoyed
No waving
Doesn't understand things really eg hv asked if you say " fetch your shoes "

Compared to his peers he seems so different , he is really hard to control. It's so difficult that he doesn't understand eg at home I say do you want a drinky and he will get excited at it as he can see the drink but at toddler group as its in another room has a tantrum because he doesn't understand the words so I have to wrestle him to the other room.

He is referred to a paediatrician but I have been waiting a month now.

He walked at 10 months and physically very active infact he rarely stops it's all the communcation side I worry about.

It was last summer he started babbling and now summer is nearly here and he still isn't talking I can't believe it. :(
Any advice or help would be very appreciated. Thanks.

OP posts:
insanityscratching · 26/05/2012 09:12

The waiting is the hardest part but you have got a referral really early so that is a good thing. My advice would be to step away from google as you will drive yourself mad and maybe look at ways to help ds to communicate. Have you thought about signing? that could be a possibility. Or maybe take photos of one or two things that would help give ds a visual pointer as to what you are saying. Laminate them and keep them on a keyring so when you ask "juice?" (cutting out excess words can help) you show him the photo of his beaker. You can also imitate his babble and then pause and hopefully he will respond so as to give him an idea of conversation.
HTH

zzzzz · 26/05/2012 09:24

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insanityscratching · 26/05/2012 09:31

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zzzzz · 26/05/2012 09:31

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insanityscratching · 26/05/2012 09:33

Ignore my wrong thread posting obvious proof the paed was wrong Blush Grin

zzzzz · 26/05/2012 09:33

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insanityscratching · 26/05/2012 09:37

zzzzz my theory is that with five children it is impossible to be highly intelligent I'm pretty sure I lost millions of brain cells with each baby.

Original poster
SadieChanges · 26/05/2012 09:50

Thanks for the advice , if I can organise hearing /sight/ language assessment myself what does a paediatrician do? I don't mean that in a funny way at all, i just thought they would look at that ? Also who do I call for that as hv said the gp would refer to her if I took him to gp re hearing and she hasn't done anything except refer me to paediatrician.

He has been sticking his fingers in his ears a lot at the moment but I don't know if it's teething but may take to gp.

OP posts:
Original poster
SadieChanges · 26/05/2012 09:51

Yes he had his 18 month assessment , I forgot to mention that .

OP posts:
insanityscratching · 26/05/2012 10:00

The paed will probably take a developmental history and will pass referrals to other professionals for their assessments. A paed generally co ordinates and if a diagnosis is appropriate will consider all the other professionals input before giving one. The sticking fingers in his ears suggests that he has sensory issues so I'd ask the the paed for a referral to an occupational therapist as well.

insanityscratching · 26/05/2012 10:06

I don't really rate HV's tbh, many are not good and you should remember they have no specialist knowledge of child development. I would still see a GP and ask him to refer your child for the sight, hearing tests and speech therapy tbh

Jerbil · 26/05/2012 12:21

On the subject of HVs... when I asked for a referral mine asked "If I do that will you be happy then?"

he was dx with ASD last week! So want to phone her to tell her the news but have no justification for doing so cos he's 6 now! DAMN!

Anyhow, though Sadie. Yes you will drive yourself mad with google. TBH I'm still doing it now. You read with a different angle and a different purpose post dx I suppose so it's like I'm revisiting the thousands of websites I did before. try and limit yourself to a plan of action. I agree with getting the other checks done as otherwise you'll just be waiting longer.

I think the incessant googling comes as a desire of you wanting to help your child as soon as possible. So maybe write a list of the things that concern you so when you go to the Paediatrician you have it ready. Don't know about you but I tend to freeze in such appointments, and you may not be able to remember everything. Good luck

insanityscratching · 26/05/2012 12:48

Jerbil probably the reason dd was diagnosed with autism at two was because I refused to see a health visitor at all and so the GP did all her developmental checks.

cwtch4967 · 26/05/2012 14:43

My HV was fab - at ds 20 month check she referred for hearing tests, SALT, Paed, and sight (lazy eye). When we moved to another area she even made sure my new HV was up to speed and phoned me to check new HV had been in touch.
DS was given a confirmed dx of ASD and severe learning difficulties at 3.6 but we had a working diagnosis of Global Development Delay with autistic traits from the first paed visit when he was 2.6.
Try not to worry too much op - whatever happens he is still your lovable little boy!
With regard to communication try and keep language very simple, one word even ie "car" "drink" etc. As others have said use visual promps too, my ds responded well to these. If I said "car" while showing him the keys he knew we were going in the car.

littlelegsmum · 26/05/2012 16:45

I'm also going to say how fab my DD's HV has been too. They referred her at the earliest opportunity and always took my concerns seriously (oh and I was always right Wink )

DD is 11 and has just been referred for ASD assessments as no-one else would take us seriously.

Original poster
SadieChanges · 26/05/2012 21:45

Thank you for the advice , I will contact my gp next week and chase his referral with the hv it has been a month now . I'm not sure how long they keep you waiting. Something needs to happen soon as I know in my heart he isn't ok. I will focus on one word at a time , the laminated photo is a good idea but he would just get focussed on the laminate as he loves greetings cards ,takeaway menus etc so won't work for him!

OP posts:
zzzzz · 26/05/2012 22:05

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Message withdrawn at poster's request.

mariasalome · 26/05/2012 22:21

It takes two to talk and talkability (hanen) are amazing books that are used in most pre-school speech therapy programmes. If he needs input, you'll have got cracking much faster than the NHS. And if he doesn't 'really need' the intervention, it'll just hothouse his skills a bit.

Your local NHS will probably have a form a bit llike this so if your HV or GP truly are being super-slow, you could always print it off and take it to them!

Original poster
SadieChanges · 27/05/2012 07:02

Thanks for the ideas I will look up those books. I spoke to the HV about my concerns as she was visiting for my newborn who is now 2 months. I feel guilty about that as he seems to need me more now but I can't give him the one to one attention he would like.

OP posts:
zzzzz · 27/05/2012 16:29

This reply has been deleted

Message withdrawn at poster's request.

Original poster
SadieChanges · 28/05/2012 11:48

I have made a gp appointment so I can discuss the way he keeps poking his ears as he is actually sticking his fingers in now and also ask about hearing / sight / speech checks.

Just been to Jubilee party at playgroup and had to leave early as he is so out of control . He could have played out but throws his hat off , inside he spat his party food out and then stomped over other kids and their food while I attempted to get more. He ran around constantly and wouldn't stop to drink so he had a drink but while running around. It ended with me dragging him out one handed as got dd in sling then throwing him in buggy. So embarrassing don't know if I will go again. I actually cried on the way home. It's such an effort to get them both ready but I might as well just stay in.

OP posts:
schobe · 28/05/2012 12:16

I think many of us have done many tear-stained car journeys after groups etc - you are not alone. Imagine a bunch of strangers on the internet giving you a virtual hug Grin.

You are doing all the right things re referrals. You are also at a brilliantly early stage - I didn't do all this until DS was more like 2 - 2.5. So be pleased with yourself about that.

In terms of toddler groups, before you totally give up, have a think about things you could do to make it easier.

  1. Does he have to wear a hat outside? Slap suncream on - even on exposed spots of scalp and let him get on with it, for now.

  2. Does he have to have the drink/snack? Let him carry on playing if he doesn't want it. Or go and get some for him and bring it to where he is. He may be happy to be led to the eating area after this, or he may not. Doesn't matter. Bring his own drink from home if it works better.

  3. You want him to move onto another activity? Make sure it is one he likes and go and get something from that activity to show him before trying to move him on.

  4. If he hates the sing song at the end (just guessing!) then leave.

The most important, but hardest, thing at this point is to stop thinking in terms of conformity with the other children and what people are thinking of you/him. Think about what is useful for him at his stage of development. That may not be the same as the other children there just at the moment.

Original poster
SadieChanges · 28/05/2012 12:44

schobe your post made me cry . Thanks so much for the advice , yes I do bring a drink but I save that for getting him in the buggy or that's another explosion. I could bring two ! I feel like everyone thinks I'm a bad mother , you just get stared at but one lady did offer to help and the lady that runs it is lovely.

Yes how did you guess he won't do the sing song! He used to love all that at the library when he was smaller but just won't stop now. It's like I had eliminated some of the issues of normal playgroup but because it was a different set up as soon as I walked in I knew what would happen.

OP posts:
Original poster
SadieChanges · 28/05/2012 12:46

I forgot to say about the activity thing , he doesn't do activities like other kids. Eg I got his wax crayons out yesterday and instead of scribbling like I showed him he wanted to match them up into colours , there weren't two the same obviously but I knew that's what he was trying. As he held a pink one and went through the tub comparing every crayon.

At playgroup he just runs around moving things or rocking the see saws but not going on them.

OP posts:
schobe · 28/05/2012 14:47

I took DS to the local 'messy play' after we'd moved here - he was about 18 months I think. He:

  • sat in the water tray
  • ate the pasta he was meant to play with
  • continually poured sand on the floor while I ran behind scooping it up ineffectually
  • ran around a lot noisily
  • rolled around on the floor
  • ignored all attempts at group activities

All the cute little tots sitting round playing nicely and their parents were absolutely agog. I was still playing the game at that time and did this ridiculous running commentary that I KNEW he didn't understand. "Now DS you know we don't do that. Ooh that's not like you to do that." etc.

Now regardless of SN or not (hopefully not in your case), all that play-acting and worrying about fitting in is such a complete waste of time. I can laugh about it now though.

Btw, how fab that he wants to sort colours. Do it with him! Sorting, grouping and categorising is a hugely important skill.