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can anyone please advise?

(20 Posts)
hilbil21 Wed 11-Jan-17 14:17:43

Hi folks wondering if any of you can give some advice.

Firstly, let me say, I'm not a worrier day to day and wouldn't say I'm a paranoid parent at all.

My son will be 2 in March. I am starting to worry very much about his development. I will try my best to explain and hoping some of you may be able to help.

His speech is almost non existent and half of what he does say are phrases which he hears on TV.

Words he does say....

No (if you try and give him some food he doesn't want or brush his teeth for instance - not in answer to a question)
Tower - this was his first word at around one and learned it from building towers with megabloks
Steady - but only if you say ready first (again has said this for about 8 months)
Tree - since we put the Christmas tree up (he doesn't say this in context though he will just randomly say it now and again)
Train and choo choo/toot toot
See you soon (learned from tv and has only ever used it in context once) other than that he just randomly says it
Oh no (again learned from tv and never used in context)
Stir stir stir - learned from a TV programme and he does only do it when he's pretending to stir

He can also count to ten and has been able to do so for about 4 months. He does this a lot throughout the day for no apparent reason.

He only ever answers to his name when there is food involved. If you shout him when in kitchen he will come running but if sitting with him in living room and call him he won't even turn his head. This is also the case when out at toddler groups etc.

He points very very rarely maybe twice a week and only ever to his milk bottle when I'm heating it in the microwave and he's in kitchen with me, doesn't point to anything other than that. When others point to try and show him something he does not follow their finger and/or where they are looking.

He has never waved goodbye or hello apart from once. Once he waved to Mr Tumble on TV. He has never done it before or since.

He doesn't ever mimic anything we say.

However, he gives very good eye contact, smiles at people who smile at him, if he wants you to do something like play his xylophone he will guide your hand to it or fill up his water bottle he will put the water bottle in your hand.

He doesn't seem to understand instructions like bring me your shoes, bring me your cup etc

He still very much struggling with using cutlery but there are no problems with what he eats, he's not fussy at all.

He's also started scrunching up his face quite a lot and turning his head when looking at things.
I took him to health visitor who was not concerned but seemed very hung up on the eye contact tying, she basically said if his eye contact was good she wasn't worried.

I still am worried, I'm hoping it is just me being OTT but I just don't know. I keep reading things about early intervention and don't want to just leave something I'm worried about.

Have any of you got any thoughts or advice?? Also, am I able to go to a private paediatrician to see what they think or does a referral need to be done through NHS? I would love it if he were just a lazy ignorant child but I'm not sure that's the case.

Sorry my post is so long I seem to have gone on a bit!

hilbil21 Wed 11-Jan-17 14:19:12

I had put a lot of that in a list so it was easier to read but when posted it's one long narrative, sorry x

zzzzz Wed 11-Jan-17 18:14:11

From your list I would say you are worried he has ASD, assuming that's the case, go to your GP and ask to be referred to a paediatrician (take your list) as you have concerns about your ds's development.
Self refer (number from gps reception if you call them) to salt, hearing and sight tests.
Eye contact and how loving you are, are not good indicators of neurological difference.

Does he say any names (mama, dada, pets)?
Does have any command words (milk, up-up, biscuit)?

You know him. You are concerned. It has reached talking to HV and MN levels. You are probably right to be concerned.

Nb ds has a dx of ASD and is severely language disordered. It's NOTHING like you imagine, if your son does have a dxable condition don't imagine horrors. He will be himself and sounds lovely.

hilbil21 Wed 11-Jan-17 18:37:22

Thanks so much for replying. He doesn't say any names like mama dada or any pets, and doesn't have any command words. Any of the words he does say are no use in every day life really!

I think I will make a doctors appointment tomorrow and as you suggested take my list with me and hopefully they will listen.

Thanks again

zzzzz Wed 11-Jan-17 18:56:19

Ds is one of 5 and is the only one who counted and copied words before names/milk etc. He used to move my hand to things to get me to open doors etc. He was always (and still is) loving/cuddly etc

He is 11 and can now make himself understood, though his conversation is still years behind and different. He watches scooby doo, reads, does basic maths, swims, rides bikes, makes jokes, likes/dislikes things annoys his siblings on purpose, and loves speed. He is unlikely to get GCSEs or live independently but might hold down a supported job and has travelled all over the world.

hilbil21 Wed 11-Jan-17 19:05:40

Thanks zzzzz. He's my first and only child but I do feel there's something very different about him compared to other kids his age.

I just wish I could fast forward a few years to see how he will get on, it's the not knowing just now that I'm finding most upsetting.

Your DS sounds lovely smile

hilbil21 Wed 11-Jan-17 19:44:42

zzzzz would you mind if I asked you just a couple of questions??

hilbil21 Wed 11-Jan-17 19:44:45

zzzzz would you mind if I asked you just a couple of questions??

zzzzz Wed 11-Jan-17 19:51:02

Ask away.

zzzzz Wed 11-Jan-17 19:53:35

ASD comes in a huge range of presentations though so my experience may not be that common.

To be honest the language disorder is far bigger a deal for us than the ASD.

hilbil21 Wed 11-Jan-17 20:07:19

It really is just a couple of questions lol.

At what age did your DS speech start improving even slightly?

Did it take the intervention of a speech therapist or similar for this to happen?

Thanks for this

zzzzz Wed 11-Jan-17 20:55:16

Sorry not ignoring you...it's bedtime.

hilbil21 Wed 11-Jan-17 21:05:12

no worries whenever you have a min x

zzzzz Wed 11-Jan-17 21:25:57

grin I'm afraid there is a level of craziness here this evening.

His speech has always been improving iykwim, but some things make a huge difference. Names at about 3yrs 3months, I remember being huge not just because it helped and he has an excellent memory so once he'd got the idea he learnt LOADS of names in a few months, but because we taught him and suddenly we realised we could really help.

We had a private SALT every other week when he was about 3 and it helped me learn how to help him rather than him learn anything directly. It also helped because she was so very kind at helping with school.

I don't think it was the salt that helped him really. I think he is following his own developmental path and he learnt to count long before his peers (and to read) but he learnt other things more slowly. In many ways we are out of step, different not less to be corny.

Books that helped me and I would read and then think about are, Send in the Idiots, Emergence, Einstein Syndrome, and the marvellous Neorotribes. They are all a bit odd but you can draw your own conclusions after reading them which I found useful.

Can he choose between two things?
Can he copy or match two things?

These are both very important skills and once learnt provide a reason to talk. My opinion is that echolalia is useful and not as random as people think. It allows him to have the feeling of being able to talk to you which I think my ds wanted/craved. It allows him to learn the rhythm and music of language before he is able to produce it. It allows him to practice sounds and pronunciation so that when he can make his own sentences his voice/mouth is ready to go.

Make talking/communicating useful to him and he will learn if he can.

zzzzz Wed 11-Jan-17 21:27:31

There are lots of us on this board with language/speech delayed/disordered children. It's been enormously helpful to me.

hilbil21 Wed 11-Jan-17 22:14:22

Thank you so much for all your replies. I have been speaking to a girl locally tonight on Facebook who has advised me you can self refer to our local speech and language department so I'm thinking of doing that and seeing how we get on.

zzzzz Wed 11-Jan-17 22:56:33

The reason I suggested salt, hearing and eyesight is they are all self refer (here anyway) and the tests will have to be done as part of assessment anyway, do you might as well get on the lists.

Have you done an MCHAT? It's just a questionnaire (google) but it might clarify things for you.

hilbil21 Wed 11-Jan-17 23:28:08

Yeah I've done the questionnaire before and it says there's a risk for autism confused

zzzzz Wed 11-Jan-17 23:31:57

It could be any number of things. As to see the consultant and see what he says.

zzzzz Wed 11-Jan-17 23:32:15

ASK not As

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