any advice on ds1's development delay? sorry, its long...

[JoMaman]

Ok, here goes, i'm new to this so pls bear with me!

Ds1 is 2 and we've been worried about the pace of his development for 18 mths and we starting seeing an independent paed a year ago. We are currently in process of switching to NHS and I thought I'd post this to seek advice/views/support from anyone who is currently in or has been in this situation.

Basically. ds1 was late with all his milestones, but the main issues now are gross motor and speech and language. He sat at 10 months, shuffled at 15 mths, sat up from lying at 21 mths, is currently walking holding one hand, but can't stand from sitting, has no concept of crawling or climbing and doesn't seem that frustrated that he can't walk. In terms of language he doesn't babble or mimic you, just random vowel sounds, lots of sing-song noises. He's very behind with gesture, doesn't clap, wave etc. He only kisses (not properly, just puts his mouth on the thing you ask him to kiss) and, weirdly, he does a high five. He wears glasses for long sight and squint, was in a pavlik harness for several months, but i'm told that none of these things can be solely responsible for the delay... On the other hand he is mainly calm and happy, has a bizarrely long concentration span for books, puzzles etc, is sociable in the sense that he makes eye contact and is very affectionate to family/close friends, but tends to freak out in group situations or if anything new happens. He doesn't line things up, but he arm flaps a lot (when excited), doesn't point (but he uses your hand as a pointer if you hold it out (e,g, if you ask him 'where's the dog' on a book, no reaction, but if you offer up your hand he places your finger on the dog). He seems to understand a lot of words (we only know this from asking where things are on books) and he loves songs, music and stories. His fine motor is just a bit behind (can't self feed for example but can sort shapes and separate pages on his books).

Anyway my understanding is that as far as possible the paed eliminated any chromosomal genetic things. Views seem pretty polarised on whether its autism, some professionals have said definitely not, others have said x, y and z behaviours are red flags so it is a possibility. We are on waiting list for NHS autism diagnosis team but it is c. 10 months long.

Have had independent SALT (only a few sessions as he didn't cooperate at all, he would cry for the whole hour so we abandoned it) and i'm thinking of going to kikis physio (have seen it mentioned on other threads) whilst we wait for the NHS referrals (process started in sep 09 and still not actually received any help).

Anyway, the reasons for my post are this:

1. i've reached a point where I'm realising this isn't going away and I would like to connect with others in a similar situation. I live in south west london and would love to have a play date with a mum/child in similar situation or frankly just find out if there is anyone as right now it seems like of all the mums i've met since ds1 was born, nobody has same issues as us so i feel like i'm always moaning and the gap between our kids is growing

2. i keep feeling like maybe there is something i could be doing to help him that i haven't already tried, so would love to hear of any recommendations, am completely open minded...

3. i'm starting out the statement of SEN process and also trying to think about (pre)schools (not yet, I can't imagine him being ready any time soon) and would really appreciate any advice on this too

Having read through a lot of the posts here i realise my situation could be so much worse and so I hope I don't come across as a drama queen , also I love him to bits and wouldn't swap him for the speediest of over-achievers, just want to do the best for him. p.s. ds2 is 2.5 months so if I don't reply straight away that is why

thanks in advance

I could have written that post - 12 months ago. My dc has just turned four and there are differences in the delays with your son but i really relate to the confusion and angst. I also had a tiny baby 1 year ago (16 months now and a proper toddler terror)

Have they ruled out dyspraxia and/hypermobility - both could potentially account for some of the symptoms?

V good that you apply for a statement - it will draw together the professionals to look at your child ( I'm about to start this so you are ahead of the game)

V good that you go down NHS route - you need to be in the system imo if your child has complex needs. you can always supplement with private provision such as SALT and OT

don't discount nursery. The right one will gently introduce him to a social world and can really bring them on. Also look into respite care with a specially experienced childminder (my cm is by pure chance SEN trained and has made fantastic progress with my ds on things I struggle to teach him (I work three days a week).

Totally get what you say about isolation. Do you live in/near borough of Kingston. There are quite a few SN playgroups that I've heard of (we don't go because my son now attends a SN unit every morning. If you google enhanceable and then go onto children section you can find out more.
Best wishes

thank you so much mummysaurus... i think hypermobility is an issue but nobody has confirmed it. He has one foot that is so bendy he can't seem to leverage off it to stand up. Hopefully will see private physio this month to ask. Not sure about the dyspraxia, will ask that too.

Had 2 failed attempts to get a part time nanny last year (hoped to have 1 day off a week to study or work), unfortunately coincided with major separation anxiety on his part, tried for about 4 months and it made us both miserable, but you're right, I should look for a SEN trained one and persevere.

I'm in Lambeth, so not that far, but no transport. Will look on the net. Thanks again

I think it's right to say there are red flags for autism (or for communication disorder) in what you say but red flags do not always lead to dx and only someone who sees him in a variety of settings over a period of time can say for definite. Some professionals favour a wait and see approach either because of genuine belief or a knowledge that resources allow for little else. I found the Hanen program a great way to kick start things - Can you find out if your area runs the course. This is probably a fleeting comparison but DS1 did the same thing with books - excellent knowledge of A-Z books but tended to use adult finger to point - although this did fade in time,

will look it up - thanks very much.

Jomaman
contact your local surestart children's centre. They will have details of groups. They may also be able to recommend local childcare.

Also sounds like you should get portage for your son. This is where a trained person works on specific tasks with your dc in your own home - walking, playing or taking off own clothes etc.
You can SELF REFER - go to your local authority website and look up SEN provision and portage.

don't wait I left it till he was 3.5 and they said my ds was too old but the lady did come round and do a couple of sessions and write a report that helped get him into a special unit. Best thing about portage people is that they are a general fountain of SN knowledge and local services.

Hi Jomaman,

Interesting to hear about you and your DS - it sounds like you're doing everything you can for him. He sounds lovely, and responsive in lots of ways.

My little DD2 is just about the same age and was recently diagnosed with Rett syndrome - a neurodevelopmental disorder caused by a faulty gene (affects mainly girls). But for a while before the diagnosis we were baffled by her developmental delay and at our wits' end about what to do for her. It takes time to get properly 'into the system', but getting all the right support in place in terms of therapies etc definitely helps. And it's potentially a good route into meeting local families in a similar situation.

I live in the middle of Southwark - which bit of Lambeth are you in? Happy to meet up if you like?

Don't worry there are a lot of us who understand where you are coming from. Have you considered a private autism assessment? I know you have seen a paed but in my experience unless they specialise in autism then you really need a multi disciplinary team. Mine was done on NHS by paed+SALT+clinical psych - but it was the psych who really made the decision. If its something you want to consider there are a few places in London - we were going to use London Childrens Practice but in the end our NHS one came through quite fast. People on here can make other recommendations in London. Most places will offer a physio assessment as part of it too.

You can have other conditions+autism, so my son has alot of the problems with speech, repetitive behaviours etc you describe + short attention span unless something very interested in and then bizarrely long; but he doesn't have motor problems or squint etc. He didn't walk until 17 months so a bit late. But it took him 5 months to go from walking holding on until independent walking. With my son they think its not a motor problem that delayed his skills but a lack of interest / motivation. He just doesn't practise enough to develop skills eg kick a ball etc. But some children with autism do have motor problems.

Was everything typical when he was born? You didn't have a difficult birth or anything?

What I would say is his level of understanding sounds good. My son is 3 and will rarely tolerate a story and your DS is answering "wh" questions which again is good and shows his receptive language is well ahead of his expressive language. If he can point and handle puzzle pieces etc he can probably do PECS - if you google Pyramid+PECS that has info you might find helpful.

If you apply for a statement - look at IPSEA for draft letter etc. You can argue a statement is needed to establish his needs and as statements have a statutory time period the Local Authority would need reports from the medics. A statutory assessment should take 6 months so if you go that route it might bump you up the NHS queue. However don't expect to just get a statutory assessment, for under 3's you have to argue that your child has severe and complex needs otherwise you have to wait until your child fails with the local provision which generally does not start until 3! Many of us got turned down first time.

Don't discount special school nurseries for the early years at least or you might have speech and language units / ICAN school near you. If you are lucky you might come across some specialist teachers who can help you figure out what is going on.

You can ask for NHS SALT and portage (specialist teachers who come to your home and do play therapy basically) to start before you have a diagnosis. You should be able to self refer direct to speech therapy.

You might want to look at BIBIC - there have been a number of threads on here about it, they do assessments which are just £50 at moment and wait time of about 2 months I think.

thanks grumpyoldeyore, your post has given me lots of avenues to explore, i'd never heard of pecs or bbic, so now I will get on with it. I think that with ds1 he does have some mild motor issues but they are compounded by his complete indifference. Once he started shuffling i thought he'd be off, exploring the house etc, but he didn't at all, just did it occasionally, covering a small area, with a lot of coaxing. Walking is turning out to be similar. Nothing was flagged at birth, he had a high apgar score etc, but it was an emergency c-section and I sometimes wonder if there was any fetal distress...will never know I suppose.

wispabarsareback - thanks for your message - I'm in Balham so it might be too far but i'll contact you direct ;)

It does just sound like a global development delay to me. But you should be getting physio, salt and portage.

has he not had any chromosome tests? an eeg? or an mri? These should be done to rule things out.

Try to get in touch with a special needs pre school group (portage usually run one) so you don't feel so isolated too.

Hi JoMaman, my DS is 13 months, very different from yours in that he has cp as a result of oxygen deprivation at birth so his motor and other delays have an obvious cause, however there are some similarities (in particular, oddly enough, the ability to high-five!!). I live in Wandsworth, not far at all if you are interested in meeting up! I don't know any local mums in a similar situation either so would be happy to find someone to chat to. We go for physio at Kikis, and found a lovely special needs nanny through SNAP Childcare, who were really helpful.

thanks ladies! he had a load of blood tests last year including chromosome ones, which all came out clear, and then he had an eeg because the eye doctor thought he might have amblopia (sp?), which I think means the eye with the squint not communicating with the brain, but that turned out to be unfounded too. The paed suggested to hold off on doing an mri, not sure why.

Badkitty, it would be lovely to meet up, i will contact you direct. We're booked in for a session at kikis next week!

I would push for an mri if I was you, there is no need to put it off

Squint usually point to lack of muscle tone (hypotonia)a swell, but a physio could help you with this.

thanks - I was told by the paed that mri's are very intrusive (have no idea what it entails for little ones so not sure if this is true?), and she didn't think it necessary, but i will push for it now. Found out today that our physio and salt nhs referrals have been delayed an additional 7 weeks because the person we originally saw filled in the wrong forms

JoMaman, Have you looked into Sensory Integration Therapy by an Occupational Therapist? We get this for our son and his OT comes to our house. She's great. Our son has hemiplegia but she also uses some Sensory Integration strategies with him. Our therapist's website is: www.ot4kids.co.uk Hope this helps. It's so frustrating not to know what is going on but it is great that you are starting at such an early age.

An MRI for a young child requires a general anaesthetic. When my DD2 had her brain MRI, it only took about 20 mins or so and she came round from the GA very quickly and was totally fine within an hour or two.

I think if there are any reasons to suspect brain damage of any kind, an MRI is worth doing. Waiting times can be quite long - DD2 had hers at St Thomas' Hospital and we had to wait about five months, which was hard. But it can be an important part of the diagnostic jigsaw.

thanks Wispabars, btw I tried to message you but it didn't work

Sorry, JoMaman, I don't know how it works Why don't you email me direct at [email protected]?