First step on road - toddler autism <update page 4>

[Twinminator]

Well having thought my family would shrug off my concerns, that lauren is just "different" etc etc, (I only really see my MIL on a regular basis out of my entire family, who is a real "paper-over-cracks / smile-and-ignore" kind of woman, and DH is a workaholic and wouldn't notice if we weren't here, let alone if his daughter had any issues)
... spoke to MIL today and told her I wanted to take Lauren to GP to get her checked out for autism, and she said "Well, I wasn't going to say anything, but yes I think that's a good idea"!

Ordinarily I'd be relieved but probably down to my pregnancy hormones, I'm annoyed...! Why didn't she say something earlier?

Anyway, just spoke at length to my HV (am still on their books for PND I had after twins born) who did the usual 'it could be this, it could be that' speech but said by all means go to GP "if it makes you feel better" and it just so happens that my doctor who normally has a 3wk waiting list because he's so nice has a cancellation this evening.

Hope to be posting something constructive this evening xxx

 

[Twinminator]

Well doc is taking me seriously at least. He knows me from old that I leave no stone unturned in my research before opening my gob, lol.

He said the fact she has no words at all at 21 months is cause for real concern on its own, regardless of all else. He's kept my copy of the CHAT assessment i did on her and will send that off with his referral.
I have already set the ball rolling with MW re an ear test too, but I know that when it suits her, she'll listen. If I'm in the hall crinkling a biscuit packet, she's out of the lounge like a shot
I feel better that at least he is not shrugging me off as an over-protective worrywort. But at the same time the timing of this is horrendous, I don't feel at my tigress-best to fight what could be a long battle.

 

[Newt]

I am glad the doc took notice of you, as you can probably tell by posts on here the journey is a long one, I hope you can get all the support she needs. Only time will tell, and it is so frustrating not knowing

 

[Twinminator]

Yes newt, I'm so glad I found this forum first and foremost, as it means I have psyched myself up for knockbacks, etc.
I am a primary school teacher by trade (full time mum for time-being though) and taught a handful of children with such conditions as aspergers etc but have never known much about the diagnosis stages, or indeed pre-school processes.
Thanks for the post. Are there any other good forums for special needs that you might know of? I love Baby & Bump, but it is designed for just that - babies... and bumps..! There are hundreds of women poised to reply to any queries you may have about gender scans or birthing options, but not so with this area of 'expertise'.

 

[Abz1982]

Hun, just saw this and dont really have any advise other than my EX didn't say a word till he was 6. He has an IQ of 148 and is now an engineer. He is 31 now, and so back then they just had him have speech therapy when he started nursery - nothing else. he ticks most of the boxes for Aspergers, and is a loverly man - if a tad annoying at times.

It is good that you have got the ball rolling early so that you can make use of any resources that are avaliable.

 

[Twinminator]

Thanks abz, I do think that there is a bit of frustration where lauren's concerned, we always thought she'd be the first to talk, etc, because she seemed so focussed and precise about things, I could imagine her to be quite the analytical brainiac one day! Lol.

 

[Twinminator]

Doc's office rang me, to confirm an appointment with the paediatrician on 10th December. HV and NN doing a home visit on 14th December.

 

[Newt]

Sorry twinminator I dont know of anywhere else, been caling in here since ds was a bump and dont really visit anywhere else :s

 

[Twinminator]

Thanks anyway newt (and thanks for remembering xxx

 

[Midnight_Fairy]

Hope your ok. My son was having assesments since 2 and he finally got diagnosed in April this year he is now 6! . It was a long process. I hope you manage to get your familys support at a much needed time x

 

[Twinminator]

Cripes Midnight_Fairy

What I really want to know is (and really is my only concern) is whether during all that wait, the autism is compounded by not being 'dealt with' early? Are the behaviours, and other related issues, harder to manage or 'undo' by 6yrs old?

I'll keep banging on about it for as long as it takes, but I'll be livid if at 6yrs old they diagnose her, give her support, only to be told she'd have responded soooo much better if she'd been diagnosed sooner!

 

[velvetina]

Hi hun,

Well done for being assertive and pro active, I know so many mums who found taking the first steps the hardest, because it is admitting to someone other than yourself that something is not right. My ds is now 14 but I will never forget those early days.

I know at the moment you are worried about the strength you feel you will need, and that you may have a long fight on your hands. A couple of things that looking back would have helped me were these.

- Be assertive, challenge and ask questions. Don't be frightened of making a nuisance of yourself if you are not happy with something.
- Ask what the process is going to be, how long it will take.
- Ask what is going to be put in place to help your little one and you achieve the best.
- If you think something is not happening quickly enough, ask why not and what the reasons are, then judge if you think that is acceptable.

Contact the National Autistic Society, there is lots of info on there, and ask your hv for local support contacts, if you are lucky and have a good council, there may be lots of services you can access.

Please don't hesitate if there is anything else I can help you with. I would like to say (I have said it before) but I wished when my son was a toddler I could have seen him ten years ahead. If I had, I don't believe I would have gone to such a dark place as I was in at the beginning.

All easy to say but so much harder to do, but you can and will suceed. x

 

[velvetina]

Saw your last post (as I was typing). Early intervention can make a massive difference, I belonged to a mainly US board specifically for ASD and the mums on there were so experienced on early intervention, floor time and diet intervention. You could take as far as you had the time and effort for.

Some books you may want to take a look at is Stanley Spanwick, he is an American guy leader in the field of EI and floortime. I will see if I can find the board for you, I hadn't been on for ages and lost all my favs when my hard drive went. Will pm it to you if I find it. x

 

[Twinminator]

Thanks velvetina, you're a star I'll google/amazon the book xxx

 

[livin]

I've always found https://www.asd-forum.org.uk/forum/ helpful

 

[Twinminator]

Many thanks livin xx

 

[Midnight_Fairy]

Hi just wondering how you are getting on.

I remember when my son started school one of the teachers took me aside and asked me WHY my son was having tests as she thought he didnt have ASD or anything. I was horrified. She was a teacher not a medical professional. I stod my guns though! Shame on her!
I just want to say you may have ups and downs in this process but never give up xxx

 

[Midnight_Fairy]

Cripes Midnight_Fairy

What I really want to know is (and really is my only concern) is whether during all that wait, the autism is compounded by not being 'dealt with' early? Are the behaviours, and other related issues, harder to manage or 'undo' by 6yrs old?

I'll keep banging on about it for as long as it takes, but I'll be livid if at 6yrs old they diagnose her, give her support, only to be told she'd have responded soooo much better if she'd been diagnosed sooner!

Yeah its bad. I dont know why it took so long. I live in a rural area and the waiting list for CAMHS was huge.

I was lucky in the way that I as a mother knew he had ASD for certain by the time he was 3 so I had taken it upon myself to change his diet, make visual cards etc so I feel I helped in that way. I also never stopped nagging at the school with anything I thought could help. You dont need a diagnosis for alot of things, in all honesty, the diagnosis didnt change much in the way of learning support. xx

 

[Twinminator]

Hi hunny, thanks for asking, I've had an eventful week really, we went to stay with my very best friend and her family (they live 3hrs away, in the city I used to live in, and we've been doing 3/4 day visits there every month - 6weeks since the twins were born)
and even since our last visit, everyone could see a marked "worsening" in Lauren's manageability. I think because Emily has learned some words, some instructions, some social niceties etc, and Lauren has gotten bigger but no more aware, plus with her dogged determination to climb at any cost, well, it's just hard not to compare them.

The first day and night, she was a nightmare, wouldn't sleep, didn't like the extra fuss and noise from my friend's children, I just wanted to come home again. BUT by the end of the week, I didn't want to leave, as although she was still a bit wary, it was clear she was taking in what was going on and adjusting to the changes of being away from home. When we got home she was pleased to be surrounded by familiar things and got straight to her things without fuss or upset, and I could've sworn I heard her say "uh-oh" but i can't be sure it was her, as Emily says it all the time, but I'm hanging onto the belief she may well have said her first word
So a very draining week with all the travelling on my own, the upsets, lost sleep, etc etc, but maybe it was the best thing for her right now xxxx

Thanks again for asking, hope all is well with you too...??? xxxx

 

[Midnight_Fairy]

Hi hunny, thanks for asking, I've had an eventful week really, we went to stay with my very best friend and her family (they live 3hrs away, in the city I used to live in, and we've been doing 3/4 day visits there every month - 6weeks since the twins were born)
and even since our last visit, everyone could see a marked "worsening" in Lauren's manageability. I think because Emily has learned some words, some instructions, some social niceties etc, and Lauren has gotten bigger but no more aware, plus with her dogged determination to climb at any cost, well, it's just hard not to compare them.

The first day and night, she was a nightmare, wouldn't sleep, didn't like the extra fuss and noise from my friend's children, I just wanted to come home again. BUT by the end of the week, I didn't want to leave, as although she was still a bit wary, it was clear she was taking in what was going on and adjusting to the changes of being away from home. When we got home she was pleased to be surrounded by familiar things and got straight to her things without fuss or upset, and I could've sworn I heard her say "uh-oh" but i can't be sure it was her, as Emily says it all the time, but I'm hanging onto the belief she may well have said her first word
So a very draining week with all the travelling on my own, the upsets, lost sleep, etc etc, but maybe it was the best thing for her right now xxxx

Thanks again for asking, hope all is well with you too...??? xxxx

Oh well I can imagine that all in my head so clearly lol. I travelled up to Birmingham last year with my 2 and it was hard work so hats off to you and I am glad that by the end you were enjoying the week. All is ok here. I have noticed M's behaviour getting strange again. I wouldnt say "naughty" but he has been very highly strung the last few weeks, I dont know if its because of christmas? x