DS had 1st Paed appt - feeling frustrated

[zen1]

Sorry in advance - this will be a bit of a rant.

I have posted a few times about DS3 (22 months). Unable to walk or stand alone + ASD tendencies / sensory issues.

The Community Paed spent over an hour carrying out various (mainly cognitive)assessments. He was seen by the paediatric physio a couple of weeks ago who believes that he is "still within the parameters of gross motor development for a bottom shuffler, all be it at the latter end of the spectrum". She doesn't think there is any particular pathological cause for his late gross motor development but has told me that he won't walk before he is two. I was relieved that at least she thinks he will walk at some point. He has just started to pull up if you hold out your hands, but not on furniture. Paed said he was at about the 12 month level, but didn't seem overly concerned.

Anyway, he was cognitively assessed at about the level of an 18 month old, so 4 months behind his chronological age, and she has described him as having mild developmental delay. The thing is, I asked her about ASD, explaining about his sensory issues, hand flapping etc, but she doesn't think it's likely because he's sociable and has good eye contact. I feel frustrated, because every day, he hand flaps, looks at things out of the corner of his eye, shakes his head from side to side whilst rolling his eyes, rubs his face on things etc etc. He says about 20 words, but definately has a problem processing language. For example, when the paed placed 4 objects (all of which I knew he could name) on a table in front of him and asked him to identify them, he just didn't understand what he was being asked to do and just picked up the object he wanted to play with. She just said this shows a problem with social maturity .

Well, he's also been referred to SALT and for portage, but what can I do now to help him? We're seeing the paed again in 6 months, but I really want him to progress and I wondered if anyone had any ideas?

Thanks for any input

Can you ring the paed directly and ask for a specific ASD assessment? As you're already in the system you shouldn't have to go through the usual GP referral but should be able to make an appt directly. Be pushy.

Hmm, sociable and makes eye contact. That must mean they're wrong about my ds's asd then

I haven't read them myself but I've seen a lot of mention of Hanen (More Than Words and It takes Two to Talk) on this board, which might help with encouraging communication. I guess you're doing the usual everyday stuff of constant commenting/labelling what you're doing, offering choices, etc?

Yup, labelling and reinforcing everything (takes much, much longer for things to go in than for my other two, but feel like I've made a real breakthrough when he does show understanding)

The paed told me that he was too young to be assessed for ASD, and they wouldn't look at that until he is about 3, which seems like a lot of time to waste if he is on the spectrum. I was told that even if I am right, then intervention at this age would be no different to what they are offering now (SALT & portage).

Sorry you are going through this - DD#1 was signed off by her paed after just two visits with the paed only referring her to OT at the same time as discharging us because I pushed for it. She was assessed by the OT as having very poor fine motor skills and borderline poor gross motor skills. Now we are also looking and many other problems becoming evident as she gets older (now 6, suspect aspergers). I would go with your gut for now, find out at much as you can and get appropriate help as soon as you can for those areas you feel he needs the most help, and do not stop pushing until the professionals involved all take you seriously.

Thanks beautifulgirls. Did I read somewhere that you are in the South London area? DS was assessed at the Phoenix Centre. I have spoken to a SALT at a drop in centre, but they were just giving me tips on helping him to say words, whereas infact I think I need advice on how to help him understand things.
Hope your DD is now receiving appropriate help.

Although it is a pain and a waste of time, from what i understand they are very reluctant to assess and dx when children are this young. Many professionals like the 'wait and see approach' it would seem.

DS has been in the system since he was 2, fisrt with speech and languge therapy, and even then he didn't get any sessions until he was gone 2.5 y old. And he was finally assessed for asd and got official dx when he was 4.7 y old.

I am in Kent/SE London border area - I don't know the Phoenix centre at all but perhaps some other MNs here might?

DD is getting good help from her school (I feel lucky to be in a minority where the school are really supportive and good) but precious little from the professionals who should see her like the NHS SALT. We have gone private for SALT and if you are able to stretch to it I would highly recommend you do some 1:1 with a private SALT if you are unable to access some 1:1 with the NHS in the near future. They should be able to start you in the right direction of things at least even if you are not able to continue to fund regular sessions.

Depending how things go for you in the next year or two with him then definately think about trying to start getting a statement for him so that at preschool/school you can get the help he needs with a legal obligation for that to be provided. So many people said that to me early on and I didn't do it as she didn't seem bad enough to warrant it - and infact in many ways she probably still does not, but that is another long story. I probably would have got nowhere before in all honesty but we are just starting down the road to get a statement if we can with the full support of her school who are very concerned that when she moves to junior level the school there will not be as supportive (currently in infant only school) and they want us to have something very defined to help her out. However I wish I had one already so that I could ensure she could access the services she needs but who are ignoring her now due to "lack of funding".

Have you asked for him to see an OT at all - sometimes you have to be more direct than feels comfortable for people to take you seriously and do things. It sounds like he might benefit from some motor skills exercises. As his mum trust your instincts, you know him much better than anyone else who does a few exercises with him and asks a few questions.

I have heard that it's the case that many pcts don't like to diagnose before the age of 3 (because they have a wait and see policy or because they don't want to spend money??) but it's not true about not being able to get a dx till the age of 3. My ds was over 3 when dx, but two friends have ds's with asd who were dx at 2 and 2.6. And my ABA tutors work with several children under the age of 3 who have been diagnosed. So please don't let that comment stop you from pursuing it further if that is what your gut instinct tells you to do.
(I wish I'd done so with my ds earlier.)

I can totally understand what you say though - regardless of the diagnosis (if any), we just want to be able to help our dc, and yep you're right, there won't be much help on offer anyway at this stage (we were given our ds's dx, a leaflet from the NAS and sent on our merry way).

If you search through the SN archives you can find loads of great advice, particularly about helping understanding. A previous poster, Lingle, who doesn't post so much now, was a wealth of information about helping increasing understanding, language processing, visual aids etc - might be worth searching for her posts.

Yes genie, they do seem very relectant to assess children this young, but from what I have read, they do in the USA, so I wonder why they don't here? Although I am now in the system, I have been told it is 18 weeks to see a SALT for formal assesment - he'll be over 2 by then.

Beautiful girls, I am also on Kent/SE London Borders. The Phoenix Centre is in Bromley. I haven't asked for him to see an OT at all (didn't realise they had them for children ). The physio gave us some basic exercises, but DS is very stubborn and just throws himself backwards if he doesn't want to do something, so a bit difficult sometimes. Glad you have a supportive school. DS is due to start preschool in September so I guess if no drastic improvement is made in the next few months, I will think about going down the statementing road (haven't looked into it personally, but from what I've seen on here, seems horribly complex!)

Thanks Bialy. I have been lingering on here for a year now and have already picked up some useful advice. Will certainly search for more of Lingle's posts and will begin my trawl through the SN archives . People on here seem so knowledgable about stuff, it is my main source of info at the moment.

If I still feel that DS is going to eventually end up with an ASD diagnosis, I will push the paed for an ASD assessment at the next meeting.

Hi Zen

Just found this - was wondering how you'd got on. Sorry it sounds so frustrating.
Wish I could offer some advice, but everyone else who has posted are v knowledgeable, and as you know I feel as helpless as you on this one!
We've got our assessment on Thursday, so will let you know know how we get on.