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Waiting for referral for developmental assessment- advice please!!

(26 Posts)
Twinsanity1 Tue 22-Nov-16 14:36:47

Hi everyone, I'm new to mumsnet so please excuse my amateur style! Am not even sure I'm posting in the correct area...But anyway, here goes.
I've been very worried about my twin boys' development over the last few months, starting when they were around 16m (they're 22m now, so still young, I know). It's not just speech delay I'm worried about- it is their complete lack of communication that really strikes me.
I suppose what I'm asking is for other peoples' experiences with possible asd, particularly anyone with twins. Everyone from mum to DH is telling me that they will catch up, that they're delayed due to them being twins and getting less attention etc but I feel certain that it's more than that.
If anyone answers I can list the things that they don't yet do and the behaviours that concern me.
They are 'in the system' now in that I took them to a drop in speech playgroup and the therapist has referred us (currently on waiting list for community paed ppointment) but other than that there is very little help/support (4 sessions of speech assessment herapy starting in Dec). No one seems willing to speculate or give answers- I know that they are very young yet and also that I will likely get more answers when they finally get their assessment but in the meantime I feel like I'm going insane with the are they/aren't they thoughts going round my head.
I've done way too much googling and am now pretty sure that both ds may be somewhere on the spectrum. I AM trying to stay open minded but feel very alone and unable to help them- I need to learn how to help them but so far it feels like the blind leading the blind. I know I must be patient and calm but it is so hard!
Sorry for marathon post..

FrayedHem Tue 22-Nov-16 21:48:33

I don't have twins but my eldest has ASD and my 3rd is due an ASD assessment. You're doing the right thing in getting referrals but like you're finding it all takes time.

It's hard to put thoughts of the are they/aren't they out of your head so I won't tell you not to. But looking at how they are now, what are your immediate concerns? What do they like to do? Is there anything causing problems in daily life? Trying to make steps forwards in the here and now makes life easier.

My own family had many theories on why DS1 wasn't speaking, but when he was dx with ASD none of them doubted it. It was incredibly frustrating to deal with at the time. The sensible approach would be to simply say you want to support their development fully so you are getting professional opinions on how to best to do that. I would be lying if I were to claim I was actually that reasonable in my responses to them though!

The other thing I will say was I started the referral process for DS1 when he was 22 months and he was dx with ASD at 3. He is now 11, still very much has ASD, but it isn't the scary thing it once was.

Twinsanity1 Tue 22-Nov-16 23:08:29

Thank you for your kind and measured response FrayedHem. Having finally plucked up the courage to post on mumsnet after months of lurking feels very cathartic.
And tonight, finally, I have had a breakthrough with my mum, who finally seems ready to discuss things. She has just had one twin at her house for 36 hours to give me a break and to 'try to bring him on a bit' as she put it, and I think she finally got a proper insight into some of his issues. Bless him.
So the twins were born when my dd was 21m and I have always felt guilty that they have been dragged up; home life has been incredibly chaotic and challenging and most days it's all I can do to keep them all fed and clean and safe- it's a major achievement if they ever got read a book or played with properly... But looking back, I realise now that neither of the twins has ever been remotely interested in a book- reading sessions usually end with the book being eaten/thrown/snatched etc. They have little concept of what a book is for. Right, I'm aware I'm waffling, so... main concerns are: no pointing or gestures. They have never asked me for anything, either with a word, gesture or even using their eyes. Ds2 has a terrible thing at the moment where he sort of launches himself out of the buggy as we go along and ends up upside down with his head trailing along the pavement but it would never occur to him to call or indicate that he needs help; his only way of signalling he needs me is to squeal. Similarly if they get stuck on the climbing frame, theyvjust sort of stay there helplessly squealing. They don't look to me for help iyswim. Same thing at home. They follow me to the kitchen and sort of cluster me and wail and squeal while I desperately try to understand what they want.
They don't follow a point and seem to understand very little that I say. Do t follow any commands etc. Both have been able to count, sometimes quite obsessively, for months. Both can recite nursery rhymes but cannot ask for a drink, whivhvjust feels strange. They have never called me mummy. Ds2 is extremely clumsy and accident prone. He also has a deep, nasal tone and the few words he has he cannot pronounce properly. Am getting his hearing tested next week although I think it's fine.

Twinsanity1 Tue 22-Nov-16 23:10:10

Sorry, will write more in the morning, dh coming up to bed now and can't be bothered to explain that I am on mumsnet discussing the twins, it will just open a can of worms. I know that's lame, but just can't face that discussion with him tonight. Thank you for your kind reply

BackforGood Tue 22-Nov-16 23:16:48

ds2 might be watching the wheel go round. Is that a possibility? Some children love to watch the spinning motion.

Twinsanity1 Tue 22-Nov-16 23:30:40

That has occurred to me BackforGood. And often at home the twins do tip the buggy upside down and spin the wheel. And ds2 particularly likes spinning himself. Not for long periods, but a minute or two, several times a day. Is that enough to be considered worrying?

FrayedHem Wed 23-Nov-16 00:48:46

Your concerns are very valid and I more than anything just want to say it please don't feel guilty as, hand on heart, I would say it has nothing to do with life being a bit chaotic. Both my 2 with difficulties have had waaay more attention than the 2 without due to the sibling gaps I have (21 months between 1& 2 then 5 years to DS3 then 18 months for DS4).

There's definitely enough there to warrant a full speech and language and paediatric assessment which you've got in hand. Do chase up if you don't hear back as the system is a bit prone to losing people here and there.

DS3 took a long while to take to books, and we used to role play little stories out with teddies and toys before bed. How much good that did I don't actually know, but it made us feel better about it.

When you're not sure where the level of understanding is, it makes life tricky with one, so even more with 2. Hopefully the SALT will give you some specific advice when you have your sessions. You're probably doing all things I would suggest, but it's always use words with your actions, but keep the language short. Try and join them in what they are doing and gently expand play that way. Visual supports can be really useful, but you may want some guidance from the SALT on how best to approach.

Hanen do a couple of books that may be of help, It Takes Two To Talk and More than Words. The latter is more focused on ASD but is a good resource for receptive language delays. Both of them are v expensive! But tend to be recommended by SALTs. There was another book I read for DS1 but it's totally gone out of my mind. I will report back if it comes to me!

I'm glad you're mum is supportive and coming round, hopefully your husband will follow suit asap. It must be so very overwhelming atm, so go easy on yourself too.

Twinsanity1 Wed 23-Nov-16 03:56:35

Thanks again. It's so heartening to feel not quite so alone with it all. I suppose I have to make peace with the slowness of the whole process and the fact that the professionals I've encountered so far are reluctant to speculate- the SALT who assessed them would not answer directly when I asked her if they showed signs of asd but went into a big waffle about 'it's too soon'; 'grey areas' etc. She did say that she could see that they had good potential to communicate, which was encouraging. I've done a makaton taster course although I'm not sure how much it's sinking in with the twins just yet, and I'm going to get some photos of their daily routine laminated so that they have a visual aid to see what's happening next. I think a big part of all the squealing and frustration is distress because I honestly believe that they don't know what's going on half the time, so I imagine that they are quite bewildered and confused and impatient! I will def get the books. From what I've researched I'm inclined to swing into action now and get started on some sort of intervention plan rather than sit and wait- which with the way things are right now at home with all the screeching and wailing and throwing and bashing would be frankly unbearable!
If my fears are proved unfounded all the extra input can't have hurt, and if they do turn out to be valid fears then at least we'd be off to a flying start. Apart from the makaton and visual aids is there anything else I could be doing that would be relevant at this stage?
One last question- I can't be referred to anything like portage until I've had the assessment and the paed puts it into motion. Does anyone know of any extra support I could access? I'm still at home full time with the twins and we go to all the childrens' centres and get what support is available there, but it's limited and I don't think the staff really understand what I'm going through. I had a bit of help from a homestart volunteer when they were born so I might give them a call- what I need is some sort of nice expert to just come round and tell me what to do and how to help them and that it'll all be alright one way or another, even if it's not alright, iyswim. Wishful thinking! Thanks again for your replies.

FrayedHem Wed 23-Nov-16 09:10:56

Not many professionals will be drawn on potential dx on the first appointment. With DS1 our first SALT appt was actually with the therapist who was taking over the communication disorders role. She asked me what I was worried about, I said ASD and she said "too early to say but yes I can see why you think that". With DS3 we saw a general SALT first who then referred us on to the Specialist SALT. The paediatrician may also suggest blood tests etc as they like to get a whole view before running down a particular dx path.

You're absolutely right to get informed that expanding their communication now is the best approach, and it's great the SALT could see the potential there. As is the counting and nursery rhymes. It's about bringing forward their ability to communicate their needs and increasing their understanding. With DS1, the paediatrician told me DS1 expected me to know what he knew and was thinking. How true this is in don't know, but adopting that view was helpful for me, as it explained the out of proportion meltdowns over seemingly nothing.

Applied Behaviour Analysis (ABA) is another thing to look into. I've not personally used it but many have on these boards. From what I've read, it can be quite full on (and ££££) to get a program put together and started, but those that do ABA speak highly of the progress made.

My area doesn't do portage - a big problem is regional variations makes advice hard! I always thought you could self-refer to Portage with minimum requirements. I think all areas have to have an Early Support department- worth nosing around your county council and NHS websites, or calling the local authority education department to see how they deal with preschool age children with SEN. My area used to have Family Support Workers attached to the Sure Start who could give extra support. I think that may have been a service that has since been cut. Do have a look again at Homestart. I'd also say it's ok to turn down services available if they don't work for you. I felt obliged to keep having people in my home when their input didn’t actually help and I wish I'd felt able to put a stop to it sooner than I did.

I'm sure some areas do funded preschool places from 2 if the child has delays/SN. Again something to enquire about locally. DLA is something to consider too. It's needs based and family income doesn't matter. It can be difficult to get and it may help to have a paediatrician appointment/ SALT report under your belt first but may be worth a specific post on here to get recent experience of what is required as it's been years since I applied.

I wish I had been as switched on as you are. It is more of a marathon then a sprint, so don't be disheartened if it takes a while to find the right route for your family.

Twinsanity1 Wed 23-Nov-16 09:50:35

Aw thanks FrayedHem. I don't feel switched on, I feel totally out of my depth. I suppose when I've felt like that in life before, the important thing has been to take small, action based steps and try not to over think things. I guess that's what you mean by marathon not sprint!
I will keep just making myself known with all the services- I had started to become embarrassed as people just look at me as though I'm mad when I say I'm worried about the boys- they just say 'they're boys', 'they'll catch up' etc. And part of me is clinging to the thought that it may be a strange twin thing. I should seek out more twin support and see. So part of me would feel silly to go into full blown intervention mode when I haven't got any answers. I think people would think I'm having an over reaction/ hypochondriac etc But the louder voice inside me knows there is something deeper and more complex going on. And really, I shouldn't care what people think. Mother's instinct and all that. And the gulf between my two and the other kids at the playgroups is widening. What you said about your son expecting you to know what he knows really resonated with me; I feel like I'm trying to be a mind reader.
My mum yesterday gave me the green ligh to get some private help (within reason) so I shall mull that over for a few days. Dh certainly wouldn't be happy to accept the money but when it's my kids' happiness/future at stake I just think sod it, I know best. And if the boys can be helped to communicate, the whole family will benefit. Poor dd is really having to fight for attention over all the squealing. She keeps asking why they're crying so much and I just don't have the answers. Patience is key, and pacing myself. You're right.
It's been extremely helpful reading the feedback and advice here, and I'll certainly make use of it all going forwards. Thank you so much.

FrayedHem Wed 23-Nov-16 10:58:37

I'm sure I've seen a couple of posters in a similar position to you - probably worth putting up a specific twin experience thread. There is also a twin and multiples board on MN somewhere.

The only people who told me it was due to DS1 was a boy were those that only had daughters! I also had it's because you are quiet/you do too much for him & too little for him. Have you tried reading to him? Etc ignore ignore ignore.

It may well be that in a year's time you look back and wonder why you were worried. But you do know that right now they need support in being able to make and understand requests and, like you say, that will benefit everyone.

I think identifying areas of delayed development can feel negative and makes some people want to counter with a positive/explanation. I would just reiterate it isn't a negative it's an objective observation and doesn't detract from what they can do at all. "Professional screening has identified some delays" is a good opener/shut down phrase.

If I had my time over, I would have looked into PECS (picture exchange) when DS1 was a similar age and stage to your DC. It may be worth sounding out some private SALTs and then seeing what your NHS sessions bring before spending your own money.

Would your husband look at the M-chat or help with talking website? I've gone against my H over things to do with DS1 but the friction and tension was bloody awful tbh. (I was right to btw and he has since conceded I was).

Twinsanity1 Wed 23-Nov-16 13:01:45

Yes I'll find the multiples board and post there too. DH is a wonderful man in many ways but soooo stubborn (we both are) and we have very different ideas about raising children in many ways. Where we do agree is that they need lots of love, but on everything else, we differ! And he is a notorious Scrooge. And I am currently financially dependent on him, not having worked for 3 years (can't see any way of going back to work just now what with all this going on, either. And don't think the twins would cope at all at nursery yet). But my style in such situations is to just beg/borrow and do it anyway. And he normally concedes and is quite sheepish in hindsight, after his outrage, which I can endure.
And there has been progress in getting him to talk about it lately- he is admitting that they are delayed etc but reckons it's just a twin thing. Refuses to read up about it until a professional tells him to, etc. Says to carry on as normal until told otherwise -rolls eyes- all very well when he is at work every day from 8-7 so only sees the children for half an hour a day and never out and about in their routine.
I'm sure all this stuff is really common. We'll get through it.
Have ordered It takes Two to Talk smile

BackforGood Wed 23-Nov-16 23:13:49

Have you been told that for sure about Portage?
Where I live / work, you don't need a confirmed diagnosis of anything to be referred to the Home Visiting service - it might be worth checking directly with them.
NAS (National Autistic Society) are very helpful - they have on-line forums, local support groups, training, workshops etc as well as courses for parents. They are quite happy to talk to you pre-diagnosis.

Twinsanity1 Thu 24-Nov-16 10:56:00

Hmmm it isn't straightforward any if this, is it? I was told by the lovely outreach worker at the drop in speech group that we wouldn't be eligible for portage until we've had our appointment with the community paed and he/she then refers us. The outreach worker did try to refer apparently, but no luck. I'm going to try getting referred through H.V next. She hasn't really been involved as I have t found her to be that perceptive, but I'm guessing that in anticipation of any future battles it would be good to have as much info about my twins with as many different parties as possible. A sort of paper trail, especially if I do end up being eligible for DLA.
And I'm trying to get through to the Lambeth branch of NAS and autism speaks. I'll head to the next coffee morning they have on, too. I desperately need some face to face identification with other mums who are willing to talk- at the speech drop in groups there are other kids who seem similar to mine, but it feels rude to approach the parents and start asking too many questions. I need to find a group where there are people specifically there to be available to talk.
Things seem to be intensifying at home in that it is harder to keep them safe- as they are becoming more mobile they are getting themselves into scrapes but unable to signal for help; ds2 got wedged under the child gate this morning and since I was in the kitchen it took minutes to realise that his whimpers meant he was in trouble- they whinge and whimper constantly and I presumed he was just playing or that one of the others had taken a toy. And when they were whinging in their cots at nap time yesterday I suddenly had the horrors that one of them had got stuck or into trouble- I normally would just let them grizzle back to sleep but I've realised I can't take any chances- since they're not communicating effectively I need to check everything out constantly. I'm suddenly on high alert. Will probably get some sort of camera set up in their room so I can monitor them....

Twinsanity1 Thu 24-Nov-16 11:00:35

About PECS, when I asked the speech therapist about it she said that it was mainly used for school age children, and to stick to just showing them photos on my phone, which is what I'm currently doing (it does seem to help, although I find that if we are on our way somewhere, I have to constantly remind/reassure them where we're going, to keep the wailing at bay). But from my research online, I've seen that PECS can be effective much younger. And FrayedHem, you mention that you would have started earlier had you known.
Do you think it would be premature to start? There are lots of courses available in my area (already find a makaton one), so it wouldn't be hard to start.

2boysandadog9 Thu 24-Nov-16 11:52:42

Aside from the fact I don't have twins, I can really identify with a lot of what you have said about your boys, I was in your shoes 4 months ago.. actually I still am sort of!
Ds2 is 26 months and I have had concerns from about 18 months, it was at 22 months I really started looking for help and got the ball rolling with my GP. I had all the ususal comments - he's a boy, late bloomer, but I knew deep down there was more to it. Dh took longer to come out of denial than me but he now accepts that ds2 is most likely on the spectrum.
My biggest worries were his lack of expressive and receptive language. At 22 months ds understood hardly anything I said, aside from sit down (sometimes). He had no words that he used consistently, and would say a few words once and then never again. He would push me towards things he wanted and never pointed or gestured. He used to clap and wave, but wouldn't any more.
Mumsnet was a lifesaver and I got amazing advice and support! I bought the more than words book and looked into ABA therapy (we started a program 4 weeks ago)
He now understands a bit more and follows some instructions like - in the buggy, upstairs, give and kisses (the best!) He will stop when I say no and has started occasionally pointing at things he wants. He is much more engaged and happier - I remember the constant screechy whiny times, now it's much less. He is still non verbal but is starting to imitate sounds, which is encouraging.
He still has a long way to go and has a multi-disciplinary assessment in 3 weeks, which I am sure will help give us access to more help like portage.
I feel so much better than a few months ago. I know this is a life changing thing and my ideas of the future for my son have to be adjusted, but I know we will be just fine. They are still very little and so much can change in the next year, it's tough waiting and not knowing. I still have days when I am sad, but it isn't as bad.

Twinsanity1 Thu 24-Nov-16 13:03:45

Wow 2boys so you have started an ABA programme at 26m! Well done. It is really encouraging to hear that others are taking the bull by the horns pre-diagnosis and it's giving me courage to stick to my convictions and actually DO something. I have this huge shame that all the professionals think I am a hypochondriac/neurotic mother, but I think I just have to ignore those thoughts and keep pushing on. I know you shouldn't compare, but with my daughter I never had any concerns, and the contrast in their development is striking. And that's why I know I'm not a neurotic mum; because I breezed through this stage-all stages in fact- with my daughter. From the very beginning with my sons, particularly dt2, I marvelled at how 'otherworldly' they seemed. The way they looked around the hospital room. How abnormally quiet and good they were. How they didn't need me. I know all of this could be attributed to their twin-ness but I believe it has gone way beyond that.
Like you, my boys used to clap and wave at around 12 months but don't anymore. There's so much that can't be ignored.
I spoke to a local autism helpline who told me that there isn't any portage in Lambeth, although there are other services that will start to open up as the process goes on, and after they turn two. This is just the limbo stage I guess.
I've read lots of other threads about parents worrying about their toddlers, but since having posted one myself about my babies, it suddenly feels so real. Like my breath has been taken away and I'm shaky and panicky and vulnerable suddenly, after months of staying calm and patient. I know it's not a huge tragedy if my fears turn out to be real. I'm not sad so much as daunted about how to help them. But help is out there, and the support I'm getting here is invaluable. Thank you!

2boysandadog9 Thu 24-Nov-16 13:36:15

I understand about feeling neurotic! The first GP I saw said ds2 was completely fine and made me feel relieved... until the next day when the feelings I had returned.
4 days later I saw another doctor at my surgery and forced her to make a referral.
From 18-22 months I just kept thinking 'by next month he will change... he will progress... he will be fine'. I was calm on the outside, but inside I was panicking!
I have a 6 year old son and I knew the differences. All children are different, but these were huge differences I could no longer ignore.
It definitely felt more real once I posted on here and started getting the nhs involved. I really feel for you, because I know exactly what you are going through. It's a whole new world of words like ASD, special needs, therapy... things I never thought I would be part of!!
But now I am being positive and like you said 'taking the bull by the horns' and I feel much more informed and in control.
It's still early days and the part time ABA we are doing is just play-based and fun, but I can see improvement and progress and that is what is pushing me on.
If you want to chat then PM me your number. It was so important for me to have the wonderful people on this board giving support and advice. smile

2boysandadog9 Thu 24-Nov-16 13:46:35

Also, they are very young and there is so much that can change! It may end up that there is nothing to worry about, but I would prefer to start doing something now than look back and wish I had.

Twinsanity1 Thu 24-Nov-16 14:14:29

2boys are you planning on doing the ABA long term and how did you start it up? (If you don't mind me asking). I know that if it does need to be a long term thing you can fight for funding for it from the lea. My mum (who is now on board) has said to get it started but I feel sooo guilty taking her money- I have already had a lot of help from her in other areas of my life and feel bad accepting more. But then again this is my childrens' future and welfare we're talking about so it would be money well spent and besides, I can live with those feelings of guilt if it means help for them!
I am not sure yet how to PM etc (only joined mumsnet yesterday) but will figure it out, thanks for offer of chat.
Boys due to wake from nap any minute now so must down a quick cuppa while I have the chance!

Twinsanity1 Thu 24-Nov-16 14:18:09

Ps I so relate to what you said about someone reassuring you only for the same feelings to return within hours/days. I always arrive back at that feeling that something is unquestionably wrong. That's why I'm really listening to my gut feeling here and going to just do all that needs to be done, even if it means feeling silly/neurotic/pushy. None of that matters, and as you say, if it turns out to be a false alarm, and they miraculously start 'catching up', then no harm done.

FrayedHem Thu 24-Nov-16 14:41:20

We didn't do PECS as by the time I found out about it DS1's communication had vastly improved. It would be worth finding out how it can be done for your circumstances, as my understanding is to begin with you need 2 adults for 1 child. It is just one method so don't feel bad if it isn't practical - we got there without it as do many other families.

And don't feel guilty about accepting your mum's help. It's lovely they have a grandparent who wants and is able to offer some support.

2boysandadog9 Thu 24-Nov-16 16:49:14

I basically spent a few months umming and ahhing about what to do and was kind of in shock. It took me a while to decide on an ABA program, but it seemed to be the most effective so I thought let's give it a try and if I don't like it then we can stop. I finally got it together and contacted Child Autism Uk (used to be called peach).
A case manager is assigned to your child and you get a free home consultation with them. If you decide ABA is for you, you need to find tutors. I signed up to and found a tutor through there. There is also a yahoo group - aba uk I think. The case manager also recommended someone she knew.
It has been great and money well spent. We do between 10-15 hours a week, but that's quite a lot for a little one, you can do less. Lots of people I have spoken to started with 6 hours or less. Also you learn a lot from the tutors and I play with ds2 in a much more ABA way now, so he is getting more hours than we are paying for. It hasn't been long but if he keeps progressing I will try and get funding..... not looking forward to that battle!!

2boysandadog9 Thu 24-Nov-16 17:01:13

Also, we will be getting help from family with money as it is quite expensive. I am a very independent and proud person and hate taking money from anyone... but like you said, it's for my kids and frankly I don't care any more!!
I obviously hope ds will make huge improvements and this will not need to be a long term thing, but I am prepared for it not being so simple. Only time can tell....

2boysandadog9 Thu 24-Nov-16 17:17:00

I also agree with frayedhem in that you don't have to do major intervention, PECS, ABA ... it isn't practical for everyone, or suitable for every child. I decided on ABA for now, but that may change and maybe my son would have improved without it. In fact he had already improved just by using the techniques in the more than words book.
From what I have read on here ABA is a bit like marmite and every child is different. I guess I just wanted to try ABA to see how he responds and I have been lucky with the tutors (so far, it's only been a month!) in that they are very fun and play based and ds loves the sessions he has with them.

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