Just wanted to say hi and talk about my little son

[zen1]

I've posted on SN a couple of times in the last year, not really wanting to believe that there could be anything wrong with my DS, but after several posts on behaviour/development, I've come to realise that he probably isn't NT. He's 21 months old and has been extremely late reaching all his gross motor milestones. I wasn't too worried at first because my other 2 DSs were pretty late (way outside the average) too. However, my DS still can't really weight bear. He wants me to pull him up, but when I do, I can't let go of him as he's so wobbly. I've been referred to the paeds about that and am awaiting an appointment.

To be honest, it's his cognitive development that's now worrying me more. He doesn't really speak, but does babble a lot in what sounds like a foreign language. He can say "mum", "dad", "car" and "again" (pronounced "den"). He is very sociable and enjoys playing with other people and laughs / smiles a lot and has good eye contact. However, he also rocks in his highchair, spins on his bum (he is a bum-shuffler), and kicks and handflaps in his buggy (not everytime, but often). I used to think it was because he was watching his brothers running ahead in front of him and was trying to run like them too.

He never used to point until I decided to teach him a couple of weeks ago (when I read lack of pointing was a sign of ASD) and now he points to the light when I ask him where it is (first thing he does when we go anywhere new is point to the light!), but I feel that's only because I've taught him. He is starting to point at random things now, but has nowhere near the same level of understanding his brothers had at the same age. However, he does seem to retain longer words like "washing machine" more easily than shorter words ("door"). He sings very well and in tune and if you ask him to sing twinkle twinkle he will do it with all the right vowel sounds and try and do the actions.

I think he has some sensory issues too. We never understood why, but from a very very young age he used to cry uncontrollably whenever we went into lifts. However, he stopped doing that a couple of months ago. He also hated having a bath until he was well over a year old and (as I've posted on another thread in SN) he will not take fluids from a cup/ bottle etc (I'm still bf him). He's never put any toys into his mouth, though has sucked soft things like muslin squares.

I just don't know what to make of him. I am so worried he has ASD (it probably seems pretty obvous from what I've written that he must be on the spectrum). I lie awake worrying about him every night, thinking about whether he'll ever go to nursery etc etc.

Sorry for long post - just wanted to get it off my chest.

my DD goes to nursery and is probably less advanced than him at 3.10,he sounds great

My DD was just diagnosed asd, were still in the process. Your obviously concerned, I just wanted to say dont let the dx process stress you more...it can be a lengthy process, with or without asd hes still your lovely boy. My DD went to nursery, just started ms school yesterday! She is still a puzzel to me at times but every little peek inside fills me with joy and pride!

I hope you feel better to talk about it, I did but I admit got a bit obssesed and read way to much stuff....scared myself to death! Good luck. xxx

Thank you Fanjo and wooly. I am reading loads. Everything I read seems to say that if it is ASD, early intervention is really important, but I can't imagine how I am ever going to teach him to talk if he can't understand. Will try to stop stressing though

Wine helps...heres a glass from me!

My DD has speech problems, learns from films and repeats a lot. During her assesment the SALT said she had a serious lack of understanding language structure....she def gets her point across though!!! Uses funny voices/accents. When she was 3 she had an explosion of words but still struggles to use sentences properly and can revert to babbling after periods of change/stress. But when I look back at how she was even a year ago shes made a lot of progress! Focus on the posatives. :) I was advised to use a visual timetable....I thought they were for non verbal DCs but I see how they can help her focus and reduce her stress....maybe an idea? Docs say she will talk, just takes time. xxxx

Oh you poor thing - this could have been me writing this about 18 months ago. The sleepless nights wondering/worrying are terrible - I went through that too, when ds was around 2. (He's now 3.4 and probable but pre-dx asd.)

I (obviously) cannot tell you at all whether your son has asd or not. But the only thing I would say (and I so wish I'd done this myself) is you have nothing to lose by taking him to HV/GP (whichever you feel would be more receptive/knowledgable). If he does have developmental difficulties, you have done absolutely the right thing by helping with intervention so early. And if not, then great, you have just been thorough.

I know none of this will help at all with the gut-wrenching sinking feeling that there is something 'wrong' with your child. But, as I said, I put off doing anything about my ds because I so wanted to believe he would just catch up - and now sorely regret not acting sooner.

(Btw the pointing thing - you're right, it can be a sign of developmental delay/disorder, but it can also be misleading. My ds pointed around 14 months, and has always followed a point well, but is still almost certainly on the autistic spectrum.)

Wish you all the best.

Mmmmm large glass of red - just what the doc ordered .

Sorry to be ignorant, but what is a visual timetable? My DS also copies sounds a lot (going round the supermarket the other day he embarrassingly vocalised the whole of the washing machine cycle - spin cycle was very entertaining!) after having spent the previous half hour with his head right inside the glass of the washing machine door while it was whiring away).

Bialy, thanks for your post. The "gut-wrenching sinking feeling that there is something 'wrong' with your child" encapsulates exactly how I am feeling. Our GP's pretty useless when it comes to child development issues, but there is a nice hv who I might pop to see, but she only works every other week. Have you had help for your DS?

zen1 - he is young so it is difficult to say what is motor and what is cognitive.

for example not being able to point could be because he has asd trait or could be because he has problems with motor planning and needed you to show him.

likewise speaking could be global developmental delay or could be verbal dispraxia.

Dispraxia seems an equally likely diagnosis to ASD at least stage.

When I started on this site a wise mumsnetter advised me to read the special needs child by stanley greenspan but i didn't get round to recently. It is fab it is full of practical ideas for assessing and working with your kid without the need for one diagnosis or another.

He WILL go to nursery
at the same time you might want to go and see the doc for the referral to a developmental paeditrician. with a bit of luck (and some work by his loving family) by the time you actually get an appointment he'll have come on loads. If not well at least you started on long SN road.

My ds is 3.5 and has global developmental delay with suspected dispraxia and there is divided opinion on whether its ASD as well (awaiting dx)

Anyway, whatever happens there will always be people on here for you.

Google PECS or look on SENteacher site for free downloads but its basically a velcro board you attach visual symbols too to spell out events in the day. Simple and easy to use, good for all DCs. ASDvisualaids.com is a good example.

I agree with above posts get referals now, we waited from christmas and only got initial dx last month, stressed myself out in the mean time! Hvs are good for support but GP will get the ball rolling....insist on referal to childrens centre. Take a list of symptoms and evidence. I kept a diary before our appointments to highlight her behaviour/traits....also helped me remember things!

Another glass??....well id be rude to drink alone so go on! :)

Sparklebox is good too (even if the bloke who developed it is a kiddie fiddler)

Not a wine fan. More of a chocolate and cake gal.

My DS had very few words at 3. Speaking was a foreign language to him. He could see very little point in speaking. We got a private SALT in which really helped (but not our bank balance - but worth every penny). At home, I made the point of showing him what use language was e.g if he said 'ice cream' then that's what he got... It took him a while before he made the connection but he did. He's 6 now and can do sentences and comments on stuff he sees (so not just 'pragmatic' language).

All is not lost. One of my chums with 2 SN kids said 'they just need loads of energy, but they'll get there'

Apply for DLA Get on the HV case, get a referral from the GP to the community paed.

You are your son's best advocate.

Stick around here - loads of advice to be had. We also know what you're going through.

Please dont use sparklebox. I believe each time it's used the owner gets money and he is a convicted paediophile.

Oh didn't know that

Sorry - ignore that bit.

Don't use sparklebox!!

Thank you all for lovely and encouraging replies . I have to say that although not much of a poster, I have lurked on this board for nearly a year now and it is definately the friendliest, most non-judgmental on mumsnet.

TheCrunchyside I will look out the Stanley Greenspan book - I feel that I should be doing 'something' to help DS. I was interested to read what you said about verbal dyspraxia as my DH is severly dyslexic (was fortunate enough to have help from Dyslexic Institute in early 80s) and his brother is dyspraxic. Also older DS's are pretty bad with gross motor skills (can't swim, ride bikes etc), but ok with fine motor skills.

Wooly, fortunately DS has been referred to specialist children's centre for his legs, so I guess when he sees the community paediatrician there next month I will tell them about my other concerns. Will check out the sites you recommended re: visual timetable (I could do with one myself - don't possess a diary or write anything down!)

Spinkle - thanks (don't worry, will not use Sparkebox!). I am trying to get DS to say differednt words, but he seems more to copy the rhythm of the word, based on the number of syllables it has, than the sound if that makes sense. For example, nappy is "da-da", light is "da" hello is "la-la" I know he can say most consonents and all his vowels from his babbling, but he doesn't seem to be able to copy sounds in specific nouns.

Keep us posted on how you get on. xxx

I was told sparkle box was being run by someone else and peado mean doesn't have anything to do with it anymore. Will check and let you know.
Zen1 FWIW I think you should tell the paeds all the things you are worried about, they can refer you to all the right people in one go.
When my Dd1 was little it was the Asthma specialist who refered her to the pyschs, the gp was clueless but the asthma man spotted something after she had trashed his room for about the forth time.
Good luck your little one sounds lovely, what an amazing thing to be able to do the sounds of the washing machine, I wish I could hear him do that.
My Dd3 can imitate sounds, when she was liitle she used to dothe automatic cashier thing you know like "cashier number one please" She is really funny.

No sorry guys, Have checked and can't find anything other than, the owner of sparkle box has been jailed and loads of LA's have banned scholls from using it.
It was obviously misinformation that I was given.

Portage can be quite good, as everyone here says it's sensible to start early intervention before a diagnosis (worse possible outcome is a slightly hothoused child!)

For visual timetable symbols (more suited to school than home though) try www.twinkl.com

Thanks - have read a little on portage and it looks to be something that could benefit DS, so will investigate further. Thanks for the website Littlefish. The info this board provides is fantastic. I wouldn't have had a clue where to start without it.

Ineed2, yes I will tell the paeds everything I'm worried about. Initially, I hadn't planned to, because (silly I know) then I would actually be acknowledging DS has a few problems, but I can see now it is in his interests.

I will post how I get on (been told over the phone that appointment will be next month, but they won't tell me exactly when yet in case they have to change it ).

Just a thought, re-reading your OP - has he had his hearing tested? Just wondering, given his aversion to lifts, and his speech/articulation, perhaps he's got glue ear? It might affect his balance as well as pronounciation.

Anyway, I might be totally wrong on this, but just wondered if you'd thought about this?

In answer to your question, my ds has not (yet) been dx, but probably has asd. We have an appt later this month with paed/slt team, where we may get a dx. We have had no help at all yet, but are starting ABA (this week, yay!) under our own steam.

Bialy, have thought about glue ear, but he had the hearing test they do when they're babies (with that electronic thing)and he was fine. Also he sings and picks up tunes very well, so I don't think his hearing is the problem. Good luck with your little one's appt and ABA

Hi Zen1. I am normally a lurker around here, but I just had to say hello. My DS is so much like yours! He is 21 months old and is not able to stand up unaided. He has never crawled and has only recently started to bum shuffle about the place. He has had some other, pretty serious health issues in the past, which has meant that we have been in the hospital system and he started physiotherapy at about 8 months old. (We live on the other side of the world and so I am not sure how different things like early intervention are in the UK.)

Speech-wise he has a few words, but only those using vowels or the 'duh' sound. If you ask him to say a word he will repeat the number of syllables, but it will sound nothing like the word you asked for.

I do know that he has low muscle tone (hypotonia) which has contributed to his gross motor and speech delays. He has always struggled with eating, now he occasionally gags on really lumpy or dry food.

Until recently DS would only drink milk. I have been trying to get him to drink other fluid for about a year now and I have a whole cupboard of bottles and cups that I thought may be the answer! A speech therapist suggested that we put some thickener in the juice that we were trying to get him to drink. We started it really quite thick (yoghurt consistency) and spoon fed him from a cup, then encouraged him to drink from it. He still can't hold the cup by himself, but he will drink a little juice now.

You can use thickener in a bottle/sippy cup too, but the fluid does need to be able to go through the holes

DH and I started doing baby signs with DS from a very early age, since before we knew that he had any issues, and he can communicate with us what some of his needs are.

He also hates lifts and could not even bear to touch carpet until he was over 1 year old!

I love the thought of your DS singing in tune to Twinkle Twinkle Little Star. How cute! My DS knows the ei-ei-oh bit from Old Macdonald although he sings it as 'yo-yo-yo'.

My DS only started pointing a month ago after some serious prompting on my part. It seems that I almost have to teach him physically how to do something before he can do it by himself.

Just tell the paeds everything, then they can refer you to the right people. We have seen a long list of specialists and I still do not know what is causing DS's problems, but no one has mentioned autism yet.

Wow, I have just realised how long this post is I hope that you find some of it useful, even if it is just to know that you are not alone.

StillinMyPJs, thanks for posting about your DS. It does seems that our DSs are very similar! I asked a relative who is a hv to look at DS a couple of weeks ago in terms of his physical development and she said he definately has low muscle tone in his lower body (upper body has good tone)and the muscles in his legs are weak (could be because he's not using them). I think he also has hypermobile joints in his legs because when we pull him to standing his ankles go inward pretty quickly. His fine motor skills seem to be ok though (can manipulate small objects etc - if he dares to touch them ).

It is good your DS is already seeing a physio and a speech therapist. I am waiting for physio, but I expect will not get referred for speech therapy till his appt next month. I know exactly what you mean about having to teach him to do everything. That is how I feel. DS seems to enjoy pointing now I have taught him. I also thought I would give it a go teaching him to use a toy telephone (as other people's toddlers seems to copy instinctively) and now he delights in bringing me the phone, lifting up the receiver and saying "yayo". He will not put the receiver to his ear though.

I posted a long post on here a couple of weeks ago about the drinking issues I have - don't know how I'm going to resolve that one as I can't BF forever!

Anyway, I'm rambling...would love to hear how your DS gets on or whether he gets diagnosed with anything in particular. Do you think your DS's current problems are related to the health problems he had in the past?

All the best

Hi zen1, DS does the opposite with the telephone. He'll put it to his ear and not say anything!

Regarding DS's other issues, I can't go into further details on a public forum as it will make us quite identifiable. I have not set up with this CAT thing yet, but if you want to talk away from here my h o t m a i l address is j k b r i s Hopefully you can work this out!

I am off to bed now as it is way past 11pm here. Take care.