Appointment with gp later today re ds nearly 3... support / help / opinions welcome! re autism (?)

[Fairylea]

Hi, not sure what I'm looking for really. Just need to talk.

Ds is my youngest child, I also have an older child, a dd who is 12. Ds is 3 in June.

For some time now, since birth I guess in some ways, dh and I have had concerns that all is not standard with ds - whatever standard or normal means (!) He's always been very high needs and has never once slept in the buggy or car seat from the word go. He has always hated any kind of social noises - so cafes and even soft play areas can be a total nightmare.

I've taken him to toddler groups and had to leave half way through because he will have a complete screaming fit and put his hands over his ears and say "too loud" over and over.

In spite of all this - and probably why we have left things this long- he is a very happy little boy at home and pottering about as long as we stick to a rigid routine (with a nap at home in his cot in the dark for 2 hours every day) and he has quite good language and understanding.

Other people in our families have begun to notice something is perhaps a little bit different - they will say things like "Oh it will be good for him when he gets to pre school and can get the help he needs" - clearly suggesting he needs additional help.

I'm feeling quite lost. And wandering between feeling I'm being silly and there's nothing wrong and feeling bad I should have taken him sooner, I have no idea.

I'm a sahm so I feel like I understand him (and the way he thinks) very well but nursery etc is looming closer and the thought of someone else trying to decipher him fills me with dread.

I have made an appointment with the gp for this afternoon and I am feeling quite apprehensive.

Help and thoughts appreciated.

Ok I'm back from the doctors. .. he's been referred to the community paediatrician. Not sure what happens from here really!

Just wanted to say good luck, and you sound like you are lovely parents. Despite the difficulties which you mention your son is happy and you have worked to find routines which make him secure.

Deep down I always thought my son had Aspergers, but I waited until he started school, aged four, to push for the diagnosis. I know now I should have read enough about ASDs to make my mind up and then push for what he needed before school.

Thank you very much both for the advice and support. The fact files are very interesting and I will definitely try to make some more videos than I have to try to document things a bit better.

It's so daunting the whole system. At the moment it feels a bit like we are teetering on the brink of a massive world we have absolutely no knowledge of whatsoever.

Tonight both dh and I have independently filled in the online mchat tests and have come up with a score of 3 (dh doing it) and 9 (me doing it). So something definitely needs checking out.

I just feel really sad .. and a bit silly for feeling sad. I mean it doesn't change ds does it. He's still the same lovely little boy, he just might need some extra help.

I just had a very poignant moment at the park earlier where all the other children were running about and he chose to sit on a bench and watch them.... I just thought to myself if I took a photo of him sitting there who knows what he's going to be like in the future, he may not be able to look at a photo of himself and have the same understanding and nostalgia that other people do. Perhaps that's over dramatic. I'm not sure I'm explaining very well.

I just feel a bit sad about everything really. My ex work mate has a dd who is younger than ds and she is riding a scooter and regularly posts photos of them together in cafes. . Neither of which ds would be able to do or cope with.

Ah well. Let's see what happens next.

Do pop in to the Goose and Carrot threads - especially when you just want to moan. Yes it is unfair that some kids can do things your DS can't, sometimes hearing their "good" news might make you want to scream.

Grieving is fine!

But you have a special son, and if you throw away the rule book, and try to work with him. What he will be able to do, and what he will never get, and whether those are good or bad things - no one knows yet.
Some of the things my DD doesn't get, can make her life much happier. She treats some of the nastiness of secondary school as observing some weird anthropological investigation, which is much better for her than being hurt by it.

Thank you for the toddler thread. That's so interesting... I can see there's such a range... Lots of it really stuck out to me though. It was strangely reassuring to hear others say similar things! He's very active, always on the go. He's been walking all the way into town and back since about 15 months (it's easily a 30 min walk there and back, he now walks to the park and runs about there and then all the way back too - easily an hour and a half). He never ever wants to sit in the buggy, never has. I keep him on reins though otherwise he just darts off.

It's like his brain works super fast. He never really sits down. Not even at home. He stands up and moves about until he is absolutely shattered and then sleeps for 2 hours! He will sit if he's eating but that's about it!

He has absolutely no interest in potty training. I've got a potty and a toilet seat thing but he just absolutely refuses and seems to get quite upset at the mere mention of it so I've just abandoned the idea for now. Not sure what I can do really. I guess at this age he's still quite young anyway. .He has no concept of when he's pooing or weeing even with a nappy off.

I just hope the appointment comes quickly and we can get some help or advice.

I am taking him to an arts and crafts toddler thing today. It's not very regimented, they just dive in and have a go. He just tends to run between each activity having the briefest of gos but he seems to enjoy it! :)

I was in that sad stage a year ago with ds2. In fact all of last year was really really hard and after initial relief at diagnosis in October I crashed again. I have a just turned 11 year old and 3 year old and I had all kind of emotions to go through and come to terms with. Things are pretty good right now as he's in a lovely little nursery after an initial bad choice so I can relax a bit until school. Sometimes I'm still overwhelmed with how much more work it is seeing different professionals, talking about support and funding and the school readiness team and whatever else nevermind the day to day.

ds1, who I now think is on the spectrum but not seriously affected was a never stop toddler & child, unless he was lining cars up. He's still the same at 11 and 5 foot, he can't walk across our small living room, he has to leap across sofas (and we STILL tell him off like we have done for YEARS now), always throwing himself on the floor, rolling down hills. I remember people used to say he never stopped but I didn't have anything to compare it to.

ds2 is 3 & 5 months and has just started becoming aware of his bodily functions.

When we saw the community paediatrician she referred ds2 to everything she could, but she herself was there for the medical side. My ds2 scored 16 on the mchat and most likely had a regression and so was more clear cut. But I still had a typed document with his development on it, they ask about birth too. This was so I didn't forget anything and all relevant information was in there to build up a picture.

When my son was about 3 I made a photo/scrap book called All About (..DS..) filled with photos of all our favourite places, days out, and him doing his favourite things. He loves looking at it now and talking about happy memories. I'm not sure if the nostalgia and understanding is the same as others because he's my only child, but it is lovely to share in anyway. I'm keeping another one now with with photos and things like tickets and postcards from fun days.

Thank you very much for the replies. I think the worry about seeing everyone is stressing me out a lot as you talked about antiquity. Ds doesn't react well to new people or places and the thought of having to take him somewhere new and disrupt his routine really makes me stressed. He was literally climbing the walls and crying etc when I took him to the doctor the other day so the idea of him having to be somewhere for a prolonged period to be assessed makes me feel :( but I'm not even sure if that would be the case anyway. I have no idea. Just feel apprehensive and worried that in some ways by trying to get some help or whatever that I am actually making things worse for him? Who knows.

I love the idea of the "all about ds" book. I think I will try to do something like that. It's a lovely thought.

Been a bit of a long day really. Ds is obsessed with road signs to the point that he has two road sign books and will spend ages and ages looking at them and asking me "what's dat? " over and over and over even when he knows what the sign means. He is absolutely fixated on the 5 miles an hour sign (!!!) and stood in front of me for ages saying "no faster than 5" again and again and again! I kept trying to get him to do something else and he wasn't having it at all. Really exhausting and leaves me very stressy! ... dh and I have managed to laugh about it tonight however, now ds is in bed we keep saying to each other "no faster than 5!" and laughing to each other. I guess you have to laugh or you cry really. .....!

Toddler group was good today. The woman who runs it seems to be very fond of ds and when it finished she let him do some foot print painting which he was desperate to do but wasn't one of the actives today which was nice of her. So I came home with a toddler with green feet and a massive floor sized foot painting! (Which ds burst into tears over when I tried to show daddy later on - baffling when he enjoyed making it so much! Just me bringing it into the living room started him off...!)

Sorry to waffle on just helps to write things down.

I'll come over to the goose etc thread soon. Thanks all.

My Ds loves road signs too! And he did the same thing, asking "what's dat?" He learnt loads of reading from them and he's a fantastic reader now -years ahead. Sorry to sound so horribly boastful, but I just wanted to let you know that if your Ds does have an ASD it doesn't mean he won't have talents.

That's ok, that's not boastful at all! It's great. And great to hear too. I hope whatever is going on that ds can build on the skills he does have. Really interesting that your ds was into road signs too....my ds would actually be happy to receive a box full of toy road signs above anything else. He would sit and look at them for hours.

He loves any signs really.... I had to take him to the hospital with me last week for something unrelated (dh actually) and he loved it because of all the signs everywhere - exit signs, toilet signs etc- he keeps asking to go back every day!

My ds loved museums and I used to take him quite a lot on quiet days, but it mostly wasn't for anything that was actually part of the displays, but for all the signs like the fire exit and toilets! I got to look at the collections.

DS2 has always been happier at home. We are also the family that walks into the cafe, takes one breath and walks out - smells trigger him, so we just go along with that. It sounds like your DS is noise sensitive and doesn't have the bodily triggers that push the transition to using the toilet. An OT who specialises in sensory difficulties would help unpick those issues. Ask your paediatrician for a referral? I have always found the sensitivities fluctuate - DS is at times very noise sensitive but can do a loud panto/film - additional stress heightens his ability to deal with noise.

I read (but it is a long time ago) The Out of Sync Child and Autism Spectrum Disorders - The Complete Guide and found both really helpful but someone else might have something more current.

Those poignant moments are hard - it is seeing how your reality and others are different in high definition. We live in a bubble and do what works for us - so: one-to-one swimming lessons, exit passes at legoland, not going to places that are too difficult as a family. Can you ask for photos of where your paediatrician appointment is going to be and the doctor - visuals have always helped DS manage his anxiety. The hairdressers is still very difficult.

Signs - is there anything on youtube/the internet for this current interest?

Can dh come to appointments with you? My dh took time off for ds2's appointments and it was mainly me talking to the paed and him keeping ds2 happy. What happened at our appointments was in the first one I handed the paediatrician my document of information which had headings on like birth, age groups with development, then extra bits with headings like communication, play skills etc. It was a bit weird, yes, because that's all she would be asking and she felt a bit redundant! But it made our appointment really quick. During it ds played with toys. The only problem was she wanted to see his cafe-au-lait spots and he turned from this fairly quiet, cherubic blond child with curls to a screaming whirlwind.

He got a preliminary diagnosis then dependent upon genetic testing (especially as it appeared he'd had a regression) and hearing test.

At his second appointment just before he was 3 it was has anything changed and confirmation of diagnosis and he was on edge the whole time and then tried to leave. But it's not like the docs aren't used to this and it can be very helpful for them to see a child having difficulties.

Obviously with a possible regression (there was some signs of glue ear but it took 6 months until he had a hearing test so who knows whether it was loss of language due to loss of hearing loss or not), speech delay and a 16 score on the MCHAT and other behaviours he was a fairly clear cut case.

I did have dh solely take him for the hearing and genetic testing, I was only just coping on a day to day basis and there's no way I could've managed that. Also I knew as a mum I would be judged more harshly for a "misbehaving" child and I already had enough of that to contend with.

I love how you have a laugh about the 5 mph sign! We do that with things ds2 says as well. Why not, we had a laugh with ds1's cuteness and little kid sayings, just because ds2's are more unusual it changes nothing! :D

ds1 who we now suspect is also on the spectrum loved cars when he was little. He loved nothing better than us getting an Auto Trader and he would point to each car while we read out what it was! He could recognise makes and models from partial side views in a car park!

Oh and this is a thread mostly aimed at those of us with little ones!

Virtual Playgroup

I agree, those early obsessions are great. My Ds was always obsessed with machines like fans, lights and automatic doors. We have gone on to learn loads about how motors, sensors and electricity works. I've learnt stuff I never knew until we learnt together! Hopefully he can keep building on this knowledge as he gets older.

Was just coming on here to recommend the virtual playgroup but I see Antiquity got in there first .

Don't feel guilty for feeling sad. It doesn't demonstrate in any way you don't love your son, it is just human nature, you are not a robot after all!
My son went through the road sign phase where he was drawing them over and over! I always thought those pictures were rather beautiful and I still display one of those with pride on my lounge wall. Now the phase has passed. Anyway, I would second what Polter said earlier; even if you don't have a diagnosis, using methods for early intervention in ASD could be useful because

• for one, even if he hasn't got ASD you will feel better and empowered (having a plan helped me tremendously; it's the feeling of being helpless I couldn't deal with).
• If it turns out he is on the spectrum, then you already have started, and if not, then no harm done!

One thing that was useful for me was to research all of the possible intervention, not just the ones that were recommended by professionals. Because I went with the one that was not recommended and am glad I made this choice.

Good luck, these are hard times,

Oh yeah, just thinking about the signs, he actually drew fire exits signs and made us put them above all the doors in the house! What can I say, safety first, very wise!

It's been so interesting to read your responses. Thank you so much. I had to laugh at the other sign lovers and car lovers! It's amazing how obsessive they can be isn't it :)

Ds knows the road sign book inside out I think.... at least I know he will pass his theory test when the time comes !

I spent ages last night looking at loads of videos of toddlers with autism on you tube. It's difficult because some of them clearly have a lot more obvious signs than ds does but on the other hand when I looked at videos of "normal" toddlers as well singing and whatever else at the same age as him he does seem quite different.

I rang the health visitor yesterday as the doctor mentioned it might be a wait for the community paediatrician and maybe the health visitor might be a good contact.. to be honest I'm not particularly fond of hvs anyway for various reasons and haven't seen one since ds was a very young baby but I'm willing to see what they say. I'm waiting for one of them to ring me back. The one I spoke to was a bit frosty and seemed to keep harping on about how his 2 year check was - it was normal but to be honest there were some things I knew he can't really do but I thought it was down to stubbornness so I said he could do them. Maybe I shouldn't have done that now. I feel a bit bad... The health visitor also asked if he was at nursery and I said no and she seemed surprised about that too. The last time I checked sending them at 2 wasn't compulsory!

To be honest one of the reasons I haven't sent ds is because I genuinely feel like he wouldn't cope with it.

And so on we go....

I've posted on the goose thread and will look at the virtual playground one too. Thanks for all the support.