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Am I seeing something that isn't there? All advice/opinion gratefully received.

(101 Posts)
RandallFloyd Tue 18-Feb-14 19:52:54

Ok, DS is 2.6. He's lovely, lively, funny, is average at talking and sleeps well. He was a little bit late at sitting/crawling/walking but all within 'normal'.

I just have a gut feeling that I can't shake. I've had it since around 12 months but it's really hard to describe why without sounding like your average PFB'er. (Which I freely admit I am!) I've looked at the mchat test but it's difficult to put the way he is into yes/no tick boxes iyswim.

He doesn't like people; adults or children makes no difference. He finds himself a safe place, usually behind a sofa or in a corner, and watches. Then comes out slowly when he's ready. He's ok once he gets to know them but even after a couple of hours I can't leave the room even for a minute. He's fine with close family though.

He's brilliant at independent play, happily amuses himself for most of the day. He plays 'pretend' but it's acting out scenes from cartoons he's watched rather than abstract imagination.

His favourite toys are his Alphablocks and his numbers. He will play with other things but the letters/numbers are always involved. In all honesty I don't think he'd care if I got rid of everything else. He spends his time lining things up and arranging them in order.

He spells out short words but these are ones he's seen on Alphablocks episodes so not 'spelling' as such. Usually 3, 4 or 5 letters but he also spells out 'alphablocks' and 'alphabet'. He has some flash cards and can sound out most 3 and 4 letter words. Once he's laid his things out he gets very upset if you move them or if they fall over. Very upset.

He flaps his hands when he's excited. This can be for any reason, a song, a cartoon, reading a story or just whilst he's playing.

Bloody hell, that's already an essay blush there's more, but if anyone can be arsed getting through that lot for now I'd be more than grateful!

NewBlueCoat Tue 18-Feb-14 20:03:44

I think I have spoken to you on a thread before about your ds (I mentioned my dd had issues eg crossing floor boundaries and you said your ds used to as well, amongst other things)

Your ds sounds great - good work with the alphablocks smile

I think here is enough in your list there to seek a professional opinion. If he was my ds, I would do so in the strength of what you have listed. In fact, I have referred my ds for less, socially speaking, and he is only 18 months (my biggest concern is speech/language with ds, although there are other pointers too).

Have you spoken to your hv at all? Do you want to take this further officially, or are you looking more for informal ways to tease out what your instincts are?

RandallFloyd Tue 18-Feb-14 20:11:21

Yes that was me, well remembered. It remember you now too, you were so helpful on that thread, it meant a huge amount. That thread was the first time I've ever mentioned it to anyone. This one is the second!

In all honesty I don't have much confidence in my HV. I've only seen her 3 times but she did his 2year check and didn't notice anything at all. Despite the fact that he hid from her the entire time!

I'm just conscious that I don't have a clue what I'm talking about and that I'm really just going on my gut feeling.

sweetteamum Tue 18-Feb-14 20:18:39

My health visitor and every other professional at the time, failed to pick up all my daughters issues!!

Please do go with your instincts. They're there for a reason. It does sound, from what you say, that it will do no harm to get a referral to a development paediatrician.

RandallFloyd Tue 18-Feb-14 20:21:12

Thanks Sweet. Did you have trouble getting a referral then?

Do you want to take this further officially, or are you looking more for informal ways to tease out what your instincts are?
Good question. A bit of both I think. I sort of feel like I need to have a bit more confidence in my 'hunch' if I'm going to be taken seriously.

NewBlueCoat Tue 18-Feb-14 20:23:08

the bits that would concern me from your description are:

your ds will happily play independently all day. The children I know who are NT don't do this. My neices, for eg, are very attention-demanding, imo, but I think it is actually typical!

the rpetend play being scripted/recited/copied, rather than origianl play. the abstract imagination/flexible thinking is so very important, and again, my neices are great at this (and come out with some truly bonkers original stuff!) whereas mine arent (dd1 has ASD, dd2 and ds both currently in the system)

hand flapping is not always a good sign, but not always a red flag either.

the lining up and ordering things is ok-ish. it depends on the extent, and the importance your ds attaches to it. you say that woe betide anyone who (inadvertently) messes it up - hmm, that would bother me.

Is there a different hv you could see? or try going via your gp?

When I went to my hv re: ds, he was only 15 months old. I was full yexpecting to be told to wait and see, even with family history.

SO i went prepared. I went in with a firm, no-nonsense approach, and stated my concerns. I listed them all, said he was shaping up to fail the mchat, and that I wanted hiim in the system in case referral etc took a long time. thankfully it paid off for us. would this approach work, do you think?

if not, is private an option?

I think, if you listed what you have put here (and before), and mentioned that you've looked at mchat, that a decent hv would take notice. you could always insist on a second opinion?

FWIW, I think the kind of niggles you are having are a strong indicator in themselves. It is very rare for a parent to be 'looking for something to be 'wrong' ', and so the very fact you have these niggles, and have done so for some time, should also bear weight, imo.

troutsprout Tue 18-Feb-14 20:25:15

I also think is enough there to seek a referral.

NewBlueCoat Tue 18-Feb-14 20:29:00

A really good resource, imo, is a book called 'playing, laughing, and learning with children on the autism spectrum' (NB, I am NOT saying your ds is on the spectrum!)

it is full of ideas of how to play (also not saying you are no good at ideas, but having had an inflexible child or two, I found it a godsend to have a resource I could jsut set things up from, and know what it was working towards, what a 'good' response would be, etc) and things to try.

I also tried a lot of things like Floortime when my dds were young. IT's an approach based on play, and it can't hurt to try it, even if your ds is totally NT.

I found with both dd1 and dd2, that my own thoughts were cemented when I tried out these things, because it was more obvious where I was compensating for them already (sometimes without me even realising it, as I had normalised it), or I woudl be reading thorugh and thinking 'that'll never work because XYZ, and I'd have to change ABC, and they'll be upset by DEF' and so on. THe more I tried to do, the more obvious it became that they would not react typically, iyswim?

RandallFloyd Tue 18-Feb-14 20:35:57

Thank you so much. It's such a relief to be told that I not imagining it! It does worry me that people will think I'm looking for problems where there aren't any.

I'm not saying that I think he definitely is on the spectrum, if he isn't then great. It's just a feeling I can't shake.

As regards independent play, he does like it if you play with him, but will happily potter round amusing himself. Today for example, we've been in the house all day as I had some things to do. He's amused himself all day. He's popped over to show me things and tell me things, and we've been in the same room the whole time, but he hasn't demanded my attention for more than I'd say 15mins in total. (I wouldn't normally do this obviously but I just wanted to let him take the lead for the day and see what happened)

sweetteamum Tue 18-Feb-14 20:37:38

We've only had the diagnosis a year almost. And she is almost 13. So everybody saw what we were telling them. I just wish we'd go chased it up earlier and not gone with the wait and watch her fail school approach sad

However, read up on the NAS - national autistic society - website and look up girls and autism. It's widely known and accepted that girls can present differently.

sweetteamum Tue 18-Feb-14 20:38:52

Sorry, mixed my threads up. You have a ds. However still check out the NAS.

RandallFloyd Tue 18-Feb-14 20:41:22

Don't beat yourself up Sweet, you did what the professionals told you to do. Who could blame you for that.

Thanks for the book rec New, I'll see if I can find it.

NewBlueCoat Tue 18-Feb-14 20:45:32

YEs, I know what you mean, Randall. But, in my (admittedly limited) experience, this is not typical.

my ds is jsut the same. happily potters about, being busy. happy if I play with him. but if I am not actively involved, then he will very contentedly amuse himself, popping over every so often to check in with me.

I am honestly completely exhausted by soending even an hour with other, NT children. IT's all 'do this, do that, can you help, will you play, just be a princess will you, oh no now a shopkeeper, no I mean a wolf. Now what's next, read with me, read with me, REEEEAAAADDD please. ANd then some craft, and can we go back to doing princesses, and then we can play cars' and so on. they are needing attention, and two-way conversation, and input all.the.time.

PolterGoose Tue 18-Feb-14 20:47:45

Message withdrawn at poster's request.

RandallFloyd Tue 18-Feb-14 20:53:34

A diary, I hadn't thought of that. That's a really good idea. For myself as well as to show someone else. It might be a good way for me to see things a bit more objectively too.

I know exactly what you mean NewBlue, I have a 5yo niece and she sounds exactly like that. She exhausts me!

PolterGoose Tue 18-Feb-14 20:56:02

Message withdrawn at poster's request.

NewBlueCoat Tue 18-Feb-14 20:58:46

there was another thread a few days ago, on SN, where someone posted a link showing an NT child and a child with ASD doing various different thigns. I can't remember which thread it was, and dh is wanting me to go and spend some time with him, since we are on holiday, so I can't look it up right now. POlter, do you remember the thread/link?

I'll try to have ahunt later if it hasn't been found...

NewBlueCoat Tue 18-Feb-14 21:00:41

and meant to say - as well as a diary, video your ds doing anythign you think is out of the ordinary. the reactyions when you move his lined up stuff, the flapping, the stuff with is aplhablocks (and try to show there isn't necessarily understanding behind his lining the blocks up into words, just recreating a pattern)

videos show it all in black and white, whereas notes can be written off as inaccurate, ime.

RandallFloyd Tue 18-Feb-14 21:04:05

Really good idea NewBlue, thank you. And you're exactly right about the Alphablocks, that's the perfect way to describe it.

Now go and enjoy your holiday, that's an order. thanks

Thanks Polter, I'll put that one on my list too.

PolterGoose Tue 18-Feb-14 21:07:14

Message withdrawn at poster's request.

RandallFloyd Tue 18-Feb-14 21:20:24

Wow, that was really interesting Polter, thank you.

Going by that I would say he meets some of the criteria but not all. He does involve me in his play now (although he wouldn't have don't at that age really) but not always, and would never involve other people, certainly not strangers.

RandallFloyd Tue 18-Feb-14 22:55:37

Ok, deep breath, here's the other things.

He won't play on anything in the park or soft play other than very shallow stairs and baby slides. He has a hissy fit just looking at the swings. Although he will run around and sort of play with a ball.

He won't hold my hand, however gently or firmly I try he just drops to the floor like a stone. He'll happily wear his little life back pack (it's his 'Gruffalo bag') but if there's any resistance whatsoever he's back on the floor. I basically have to coax him along. He's pretty cooperative if I do it in the right way but if he's absolutely set on going the other way the only thing I can do is pick him up. He certainly wouldn't do it for anyone else, not even XDH.

So far I've taken him swimming once. He started panicking the minute we set foot out of the changing room. It took 45 minutes of very gentle coaxing to get him to sit in 6 inches of water. Arm bands and a life vest were not an option at all.

I've taken him to the beach twice. He is hysterical as soon as I get him out of the car. Will sit on a blanket but will not touch the sand. He'll walk on the hard wet sad for a short period but won't go anywhere near the sea.

I'm tying myself up in knots because it could all easily be explained away as typical toddler quirkiness but there's just 'something' I can't explain in words. He's due to start nursery in September and I'm seriously worried about how he'll cope. I know 6 months is a long time at his age but the way his is right now he's not even close to being ready. But then all parent worry about their babies going to nursery for the first time don't they.

I'm torn because I really don't want to put him through loads of appointments (which I know will be really stressful for him) just because I'm being overly pfb, but on the other hand if there is a problem I want to get him the help he needs ASAP.

NewBlueCoat Tue 18-Feb-14 23:10:38

Very quickly (I'm not here wink) - the assessments wouldn't be really stressful,imo, if he is NT. Ther might be boring, or a waste of time, but not stressful.

Eg I just had my ds' last week. It was 90 minutes of him playing with a boxful of toys, with another adult interacting a bit, whole I chatted to a different doctor (same room, so he could still check in with me whenever he felt like it). Imo, my ds has very few social issues, and this was borne out by the assessment - he had a ball! Loved investigating the new toys, was happy to show the lady who was playing with him, moved about freely and was relaxed. He hated the physical examination bit, as that was a step too far for his personal boundaries, but the rest was fun.

However I remember going through it with dd1, and knowing she wouldn't like it. That she would go rigid if someone else spoke to her. That she would not want to play with unfamiliar toys. That she wouldn't want to interact with a stranger. That she would shriek if said stranger insisted on interaction.

I knew all this before the first appointment. I also knew that something was up - my heart sinking at the probable outcomes. My planning on how to get dd1 through it. My working out how best to keep her comfortable before we even left the house told me, deep down, something I needed to listen to.

So, if, in your heart if hearts you know your ds would find an assessment with professionals who are used to playing with chdren his age, and who are expert at keeping chdren comfortable do stressful, then in your shoes I would be pursuing that appointment. Because I would know there was something worth following up.

NewBlueCoat Tue 18-Feb-14 23:16:17

And thanks Polter. That's the one.

RandallFloyd Tue 18-Feb-14 23:26:38

I can't argue with that.

As soo as I read your description of the assessment I was mentally planning how to help him cope with it.

He'd be fine playing with new toys but he would hate a stranger being there. He won't cope at all if they try and interact with him, certainly not if I'm not sat with him.

Just imagining it now is making me anxious.


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