Pre school are concerned

[Soulcakequack]

My little boy is 3 this summer. I've started to noticed a widening gap between him and his peers in terms of social skills, communication, following simple instructions and attention.

I wasnt too bothered I just thought he was young for his age. However his preschool teachers are quite worried. And have flagged up a lack of eye contact as additional area of concern ( I have noticed it but as it's not none i didn't worry)

He is a lovely kind cheerful little soul. I sent him to preschool at 2.5 for a few hrs despite being Sahm because he was keen to play with 'the boys and girls'.

The school are kind and supportive. But I'm so frighten for him. Deep down I know something isn't quite right. I used to be an early years teacher and ive been quietly concerned for a while. i don't want school and friends to be as tricky as I fear it could be for me.

And I've no idea what to expect from the process and my experience is only a snapshot of what happens in reception.

Can anyone advise me please?

[LightTripper]

Hi Chasing! Nice to see your update. Sorry to hear it is so exhausting but not surprised, it's a lot to take on. What kind of things are they working on?

We're fine. DS is nearly 5 months now and very smiley and cute (so was DD so it doesn't really give me any comfort on whether he may be on the spectrum, but I am trying to park that thought for now and just enjoy how lovely he is).

We're not very far ahead on DD's assessment. I called them a couple of weeks ago and she is definitely on the list but hasn't been allocated a date yet. So I need to call back in another couple of weeks. I will try to find out what is actually involved at the same time as I really have no idea what to expect (and at this rate the appointment may well be after I'm back at work).

In the mean time I've been trying to do loads of play dates so DD can practice and she has definitely come on a bit: bits of direct conversation with other children, asking names/ages, following other kids onto play equipment when invited (sometimes!) etc so that's encouraging and something she would never have done a few months ago.

We've also been doing some very light "distance" ABA: which is basically just them setting some targets /areas of focus, us uploading notes about how DD is doing those, and then Skype calls twice a month to discuss. I've found that very useful, to talk through parenting approaches as much as anything else, and at least it feels like we are doing something while we wait to see if she gets a diagnosis.

Her preschool got the area SENCO in, which generated a few helpful ideas. They have also suggested some extra (private) support we could access next term (e.g. their SLT would help DD play some turn taking games with other children in smaller groups, and they also know of a nanny with SN experience who could go into the school to do some 1:1 with her: probably just an hour or two a week I think but we'll discuss it with them in September.

We've let the council SLT drop for now as we were having to come up with all the ideas etc and the lady we were allocated was very passive, so once we'd worked through everything in the paediatricians report we kind of ran out of ideas for what to do/what to ask her about. It's a bit frustrating as I feel there are communication issues still, but as a non expert it's hard for me to identify them, and my impression is that the SLTs are more used to dealing with non verbal children rather than broader communication issues. Hopefully if DD is diagnosed we can try again with a different person.

Hope everyone else is doing OK. Time is passing so fast! I'm finding it much easier to think about DD possibly being on the spectrum (and some days, like at 4am today when she woke up really upset trying to line up her toys and herself in bed, I become convinced she will get a dx), but suspect I will still be very upset if she does get a diagnosis.

[Chasingmytail17]

Just thought i would check in again. we had our diagnosis (via private assessment) last week and they confirmed autism, they said he scored 14 on ADOS and would classify it as moderate we are awaiting a full report and follow up meeting. They commented it was good he was speaking and imitating though. I have good days (hours) and bad ones where i just feel really sad about it all, others where I can be positive and hopeful. I suppose I will always be sad he will have the extra struggles with life.
ABA is working really well for him however it is draining energy from me as I am managing the programme and the workshops and paperwork etc as well as trying to do what i can and start EHCP process and look after his baby brother. He has a tutor in the am though as she is marvellous.
How is everyone else doing?

[Soulcakequack]

Thank you Im just so so angry with her. She barely even listened to me and upset my son.

However we have had a lovely private SLT start an assessment and she is sure he needs a paedatric referral. Although I know the NHS doesn't set huge store by private reports, hopefully combined with the preschool and our concerns it should put some weight behind the request.

There have been lots of changes in our surgery and I think the gp we saw isnt his registered gp ( bloody hope not). So my plan is to get a well written letter highlighting all the concerns and take it to a new gp.

The preschool will be getting the inclusion officer in to observe sometime next time. This is good but it means the health visitor won't be involved ( it's an either or option).

In our area you can self refer for nhs Slt so while I wait for gp and inclusion officers. I will do that too. It's very hard being told both early intervention is important and wait 2 years....:

[LightTripper]

I'm really sorry you are having problems getting proper attention for your DS. We actually never saw a GP on route to the paediatricians so it may be worth exploring other routes. We were already seeing physiotherapists for DDs gross motor skills, which we accessed through a drop in which our HVs told us about but I don't think any referral was needed. We then separately went to an SLT drop in because of our nanny's concerns that DD was not asking for help. Then in our area as soon as you are seeing two services you can request an assessment for referral to paediatrics. They arranged an OT appointment as part of that process, and based on the reports from all three accepted DD to be seen by a paediatrician. It wasn't super speedy but I don't think took more than 3 or 4 months from doing the SLT drop in to having our first paediatrician appointment. And certainly there was never any suggestion that they wait until 5 to diagnose (though we get the impression they don't like to firm up a diagnosis before 3).

Anyway, it may just be that provision is unusually good in my area, but it would be worth googling for your local SLT and OT services, and maybe Portage, and see if that might offer a different route in?

[Chasingmytail17]

So sorry to hear your GP was unhelpful Soulquack. That is that last thing you want to be having to deal with when you are just trying to get help and things in motion asap. I agree with speaking to nursery practitioners again as they often have links with HV or SLT who might be able to help you or even refer quicker. These things do seem to take time though. The only other thing I can think of is ringing your local paedeatrics outpatients department of the hospital you would be associated with. I'm guessing they won't have a bar of it without direct GP referral but you never know. If you express your concerns...you have nothing to lose and they may offer advice. But definitely do try a different GP you may get a very different (hopefully more helpful and clued up) response.

[mummytime]

Okay do you still have contact with the Health Visitor? Are there other GPs at the practice? What are they like?
Pre School are calling in outside help, that is good. See if they know of parents with children with SN, or groups for parents of children with SN. Or look up online and see if any of the big SN charities e.g. National Autistic Society have local groups in your area.
It could be really useful just to get some local knowledge and advice.
Diagnosis will take time. But if your GP is delaying things I would request a full hearing test, it's something that will probably have to be done as part of the process but is less "inflammatory" for a GP. If you GP is going to be away I might give you a good excuse to speak to another one at the practice.
Oh and do research - because waiting until 5 to diagnose is ridiculous. Also while you are waiting you can put techniques in practise, none of the reputable ones will cause an NT (normal) child any harm, and might help.

[Soulcakequack]

So I went to the gp today and they were hugely unhelpful. After a bit of battle they agreed to refer to community Paedatrican if we write a letter to her but it'll 2/3 weeks before she'll send it due to annual leave!!!

She basically suggested it was pointless looking jntk any concerns until he is 5.......So it looks like getting nhs imput will be a huge battle

[Wh0Kn0wsWhereTheTimeGoes]

Yes indeed .

[mummytime]

:) Who great minds...the voice of experience...

[LightTripper]

Yes, thank you wh0!

[Soulcakequack]

Thank you for all your advice and help Who knows

[Wh0Kn0wsWhereTheTimeGoes]

x-posted!

[Wh0Kn0wsWhereTheTimeGoes]

Hi again. I'm going to bow out of this thread now, it's nice to see you all sharing ideas and supporting each other. If I could leave you all with one last piece of advice - paperwork. At some point you may want to apply for an EHCP or DLA or both, for these you need evidence, you also need to provide a lot of background info to any therapists who work with your child. Start a file and keep all letters, reports, targets etc for your child. Keep a record of your own observations too, developmental milestones, differences from peers, any specific incidents. Also start keeping a sturdy notebook with notes from any meetings, appointments, phone calls, useful information from MN, whatever. It all really helps long term. Good luck to you all.

[mummytime]

My top tip is to keep a diary/notebook just to jot down all those little observations you make. Also things that cause stress or surprisingly don't, and things that help calm your LO down. This can help with diagnosis as well as giving you a chance to spot patterns.

Also remember any big upset/meltdown has probably been cause by a lot of little triggers over quite a long period of time.

Oh and don't read too many Internet stories with depressing headlines at present. (When my eldest was diagnosed with dyslexia I kept remembering "80% of the prison population are dyslexic", it's normal but not helpful). Try to look for good news stories to give you hope - actually most encouraging for me is too look at how successful some of the local Down's syndrome you by people are.

[Soulcakequack]

So the first gp appiontment is tomorrow and I'm anxious. I'm not sure what to expect or what should happen ideally.

Woukd anyone mid sharing their families experiences?

[LightTripper]

Thank you! Romsey is quite far from us too but I see she has some books that look good, so will try one of those...

[Soulcakequack]

Oh light that's a rollercoater I can understand why your both happy and sad with the outcome of ABA.

I'm a long way behind you. However during a conversation with private SLT ( who like all the others is fully booked and has closed their waiting list!) I found out about Alex Kelly who is a specialist social communication SLT. She is based in Romsey which is far too far for us. But they offer parent training sessions a few evenings a year that might be worth a look?

[LightTripper]

We had our meeting with the ABA consultant today. She watched DD do some jigsaws with OH and some sand play, and then asked to speak to us separately and said she couldn't recommend ABA as the kinds of things they would work on (joint attention, eye contact, imitation, problem solving) DD does very well so there wouldn't be enough to work on to spend 15 hours a week productively (which is their minimum). She didn't see her in a social setting (which is where even we see that DD is behind her peers), but offered to make some suggestions on how to develop her socialising and to put us in touch with her colleague who does distance ABA training for parents (which could be more focused on social skills and not a full on 15 hours a week). She emphasised DD is still very young.

It's obviously nice to hear that DD has good skills and that fits my feelings (I always felt skeptical she had ASD until our last appointment as she had good eye contact, joint attention, played imaginative games, etc). But obviously the ABA consultant is not qualified to diagnose and people who are qualified to do that have expressed concerns and said she is likely on the spectrum, so I don't want to get carried away... This whole thing is such a roller coaster. I'm not really sure how to feel about any of it.

Anyway, I think in light of this our plan is probably to really focus on social skills until the assessment comes up this autumn. We already have the area SENCO due to go into DD's pre-school, so that's hopefully helpful on social skills. We've found one place that does a social skills class for 3-5 year olds but it's quite far away. Has anyone tried anything like that with their DC? Or any books/ideas that would help her practice /develop social skills? She is definitely keen to socialise with other children, so hopefully we're pushing on an open door.

[FrayedHem]

If anyone wants my copy of this book <a class="break-all" href="//www.amazon.co.uk/Child-Special-Needs-Encouraging-Intellectual/dp/0201407264?tag=mumsnet&ascsubtag=mnforum-21" rel="nofollow noindex" target="_blank">//www.amazon.co.uk/Child-Special-Needs-Encouraging-Intellectual/dp/0201407264?tag=mumsnet&ascsubtag=mnforum-21 PM me and I will happily pass it on.

When DS1 was dx the paediatrician told me that DS1 assumed I knew what he was thinking and seeing (wrt eye contact and joint attention). How true this I don't know but it did help me to adopt that assumption when he was a preschooler.

[Chasingmytail17]

Thanks for the book suggestion LightTripper. Haven't got it so will do. Looks good. You are right Soulquack we must do everything we can to build up understanding and hopefully that will make a big difference for both of us. I keep reminding myself of all the positives. He may not look at me directly but he runs to greet me and loves cuddles! I just have to try harder to enjoy him for all that he is and not worry so much for the future. Easier said than done on the hard days

[Soulcakequack]

Chasing its hard, before the penny dropped I was getting quite sad that my son didn't like me. And that he was stubborn and hard to talk to talk.

What you describe about joint attention sounds so so familiar. And it scares me for his future. However the small silver lining is that I understand him a little better. I hope the process will allow me to understand him more and more.

Thank you all for the book suggestions and website I will definitely be trying them.

[LightTripper]

Hi Chasing, I wonder if you've seen "An Early Start for your child with autism" by Rogers, Dawson and Vismara. I haven't got to the joint attention chapter yet but I've been finding the earlier chapters interesting. It has a nice balance between explaining a bit of the theory but also some practical ideas for ways to build skills. Going to Wh0's point, it is also very big on making learning fun.

[Wh0Kn0wsWhereTheTimeGoes]

I can't remember what specific resources I used with DS that far back but he was referred to SALT around his second birthday and the inclusion officer and nursery made lots of targets and suggestions for him. By the time all this was happening DC2 had been born, which was great in that I had another 9 months off work with him but obviously with divided attention. I really just remember making a big effort to play with him, talk with him, teach him nursery rhymes etc. It is hard, I'm inclined to look back and remember all the good parts now, which is how it should be, but it is tough at times, especially when you see the differences with peers. What I would say is yes, make some extra effort, but try not to let it take over your whole life, I have done at times and then realised I have been treating him more like a project than my child. Easier said than done though.

[Chasingmytail17]

I'm finding the joint attention issue quite hard atm, trying not to get sad about the lack of eye contact with DS. He only really looks at me properly when we are playing ready steady go tickle game or maybe singing, the rest are very brief glances. We also seem to be struggling a lot with questions about anything he has done or seen even if it was only a minute ago. He can answer questions about descriptions of objects or books. Or things like where, what, who but everything slightly more abstract just gets met with a wall. Finding today hard the gaps in his ability to communicate seem gulf like and I wonder if he'll ever be able to communicate with someone his own age well :(

[LightTripper]

I've only just got more than words but it does look good from a quick skim.

A friend who is a social worker also recommended this site which has games to build social and communication skills. Some are a bit basic if your child is verbal (as I think all ours are) but it also has stuff on principles for developing your own games and finding the right degree of difficulty.
sites.google.com/site/autismgames/home/parent-tips