oh god just give me one minute to vent please I am so exhausted

[hereidrawtheline]

DS woke from his nap. I had fallen asleep and was not instantly sort of, I dont know, awake enough, for him, I was awake but just said I am just going to sit here for one minute, and he started shouting at me. I was exasperated etc Then I had to make a phone call chasing up his pead appointment

I was on the phone less than 10 mins - by the way I found out he cant be seen til 22 april, for the next two weeks the doctor is only doing paperwork, she cant see patients because the floors are bubbling in her building and there are builders in and there is no way for her to see DS in the adjoining building. Then she goes away on leave. That Dr is supposed to phone me so I can speak to her as I am at my wits end. Then I got off the phone DS still pestering me constantly to do this do that etc. I had to make one more phone call I was on the phone less than 5 mins and he followed me around the house shouting at me the whole time to find a toy for him.

I am so pissed off I cant do a single damned thing with him. I am am am am am very patient with him and try to arrange everything to be helpful for him but it is so suffocating not being able to have a total of 15 mins to make some necessary phone calls without the horrible screaming.

This morning at playgroup was the same as always me having to constantly entertain him and avoid all the other children, but he wont hear of not going, he loves it as long as it is ticking all the boxes for his rules. And I want him to go too of course so I put up with it and play along but it is so tiring. He just does not entertain himself at all. And will not accept no for an answer I just cant treat him remotely like other children could be treated.

Right venting over I will now resume my patience with him. Thanks.

poor you. hope your day is better.
i find a bottle glass of wine or chocolate bar sat waiting for after bed time is the carrot i need to get through the day.

hereidrawtheline , > , dont know what to say really, just that i hope the rest of the day goes better for you, you sound exhausted!.

hereidrawtheline, just wanted to say that we all have those days and that I hope things are going better.

Well done for having a moan in a safe place where it will not affect your lovely ds. Sometimes you do need to air these things.

thanks I am truly exhausted. Today is just one of those days where it seems he has regressed to being almost totally infantile and dependant/whiny etc. I just feel so down at the moment but I will pick up.

I feel for you. It's so difficult to get anything done when they're clingy and screechy. It will get better though, and April isn't so far away, although it must feel to have been a long wait with all the referrals of yours that have been lost. Don't expect an instant dx when you do finally see the paed though, ours told us straight off that he wouldn't be making any quick dx. That was 13 months ago now (took 5 months from referral to our first appt, they lost our referral twice too and we're no further on, but ds isn't a clear cut case of anything, it seems.

If it makes you feel any better I've just been in tears of frustration with my 18 month old ds2 (NT as far as we know) who has persitently screeched and clung to me all morning.

Vent away. We have run out of the tiny supply of Melatonin the paed gave us, special order so won't be in until tomorrow or even Thursday. DD was awake for 5.5 hours last night . She finally went back to bed at 05.00, 10 minutes after DD2 woke for the day .

nice lou, so you must be feeling really refreshed! LOL

kettle sorry you are having a bad day too! Something must be in the air.

I have to say - we have decided DS will remain an only simply because I really dont think I could cope with another child in addition to him, and do both well. Also I think he would probably cannibalise it on sight as he has a very firm rule that no other child or baby must ever touch me! (Another thing that kicks off every single playgroup) I just want to say I really very much admire you mothers who have more than one child, and even one or more with SN! I take my hat off to you, you have got to be more sorted than me because I truly couldnt do it. So well done.

ds2 was only 2 days old when my mum raised her concerns about ds1 (she was right, but the timing was awful) so we didn't really make an informed choice to have a second. With the benefit of hindsight I'd have left a bigger gap between them, but I'd still have gone ahead with a second (please don't feel I'm judging you in any way, this is just how I felt and ds1 is a very mild case of something!). No two children are the same though, and ds2 can be more demanding in some ways, and far less in others.

I do tend to avoid playgroups if I've got them both as it can be a stressful experience now ds2 is more mobile and they both go in opposite directions!

sounds like my days at the moment i really feel for you deep breaths

had sn hv out today to arrange paed appt as my paed is in india and 3 mths behind on reviews ds doesn't sleep so fingers crossed this other paed will give us some melatonin to help him

his behavior is hard work with the lack of sleep

so i really do feel for you xx

Don't you just love days like this? Fingers crossed tomorrow will be better for you.

i find choices rather than conversation works best with my ds dvd or go play with your toys

he will opt for one and play quietly or sit quietly at least he used to be very clingy now i can get him to do things to give me 5 mins peace i just have to use not alot of words and i have to give him choices so he feels in control when really i am

kettle if you dont mind me asking, what were the concerns that your Mum raised about DS2? Just curious how other people see things, looking in. Had anything like that occurred to you previous to that?

Hindsight is definitely 20/20. DS was always a very high maintenance baby but I was always putting it down to him being early & traumatic birth - now I think that is still correct! But it is interesting to point out that very many ASD children had traumatic births.

5inthebed I will definitely be taking that glass of wine thank you! Make it white please! DH had a doctors appointment when he got home from work and I made him take DS with him as I am so tired I thought I would lose it if I was with him another hour without any help.

bubblagirl I so agree with you about choices - DH asks DS a lot more open ended questions than I do and I am constantly saying/thinking dont ask him like that!!! Stop talking!!! Its digging a great big hole for all of us!!

yes i find the simpler i talk and also making him feel in control you do it or i do it he always wants to do it and never ask if he would like to do something lol

his nanny said would you like to help me he said NO lol i say go and help nanny he goes and does it you need to be direct and he follows so much better

ive had to train my dp on how best to get the response your after lol

Ask away, am happy to answer anything! Mum raised concerns over ds' lack of speech development, suggesting we refer him to a SALT, and then gently suggesting it may be a mild ASD.

We still don't know if it is, or if he has SLI, I feel he falls somewhere between the two. His main impairments are definitely where language is concerned, he doesn't have behavioural issues or routine fixations for exanple.

The paed has now decided not to dx at least for the next couple of years, as nobody can decide what it is, and he's changing all the time.

HEREIDRAWTHELINE - Sorry to hear you're finding it hard at the moment.

A bit of advice on toddler group though, I have a ds, (at school now), who's autistic. I tried toddler groups but they just didn't work. He'd have tantrums, refuse to join in or as you've found, want me to constantly entertain him + ignore everything else going on.

I eventually stopped the toddler groups, but took him to more structured things, ie, music groups based at the library, mini movers, toddler trampolining + he was so much better. It was as if he needed routine + a "purpose" to motivate him with the activities. Might be worth a try, you'll probably find he'll socialise better too, as it's something "controlled", iyswim.

kettle are you ok with waiting a couple of years? I mean I guess you have to be but I can imagine you might be worrying over it? Or would that just be me because I worry?

onthepier you are right about toddler group. I am not sure how long we will continue. I am not going to make any decisions or changes right now while I am so stressed & confused but I am definitely bearing it in mind.

HereIdrawtheline - I know your question was directed to kettlechip, but I thought I'd bumble on in.

The message that is slowly getting through my anxious mind is that for DD, it doesn't much matter what her final DX is, as long as she gets the help she requires in the long run.

FOR ME, a diagnosis is important, because I want to KNOW. What is it, why is it, what am I fighting for....

But I have a slight difference of opinion to my Paed. He sees global development delay, and feels that he is not strongly pointed to ASD. Fine, ok, fair enough. I feel that DD probably is on the spectrum somewhere, and that he sees her in the best circumstances (One contained room with toys and 4 adults to shower her with attention).

At preschool she has SEN funding for some 1:1. The funding only covers 1.5 hours, so for 1 hour she is unfunded. The preschool were giving full 1:1, so meeting the extra cost themselves. They can't afford it, so have tried just giving her 1:1 in the second half of the session.

Today, I was called in because she had had an accident. It is the 3rd time in 6 weeks that I have had to sign the accident book. She has many falls and bumps that don't get put into the accident book, but it is her 3rd big one.

The preschool leader today said that the 1:1 isn't working. She is going to speak to the AIO to ask for more funding so that DD gets the full 1:1 she needs.

I have been worried sick that DD will slip through the net, but she seems to be being 'caught' by the preschool, who see her 12.5 hours every week.

So while I am a bit disappointed that the consultant is happy with the Global Delay & Epilepsy right now, and isn't trying to give a more specific diagnosis, the input DD is receiving, at 3.2 years, is probably what she needs. Preschool are saying she will need a statement, so I am content for today.

I wonder if you could get your DS into preschool? You may find that his issues are picked up on there, which might give you a bit more validation and support with him.

Oh, and our Melatonin came in yesterday, so last night was bliss!

Hi lou Thanks for your take on things. I am glad you are happy with the way your preschool are taking care of DD. DS does go to preschool, he is in fact there now! whoo hoo!! He goes only one morning a week so far, this is his 3rd session. It will increase but that is their settling in policy and they havent got loads of available slots at the moment.

I am hoping they will pick up on his issues, or his issues will magically melt away and I will come to the conclusion it was all a bad dream. I find that unlikely though as it would mean me and DH and others all having the same dream but... one can hope!! He has drastically improved since we cut out the cows milk & made a few other changes. So fingers crossed.

What kind of accidents has your DD had? Are they related to her epilepsy? I am sorry that must be really hard on her.

No, she has had drop attacks at preschool, which was what started the ball rolling, but the accidents she has had are all because she has developmental delays.

She finds it almost impossible to take turns with activities unless she has an adult by her side reminding her. She is about a year behind in gross and fine motor skills. She has language delays also.

All in all, it combines to make her at risk of injury if she doesn't have close supervision. Because preschool have been allowing her 'freeplay' without 1:1 due to funding, she has had an increase in accidents that otherwise would have been prevented by her 1:1 support.

I think that the preschool will pick up on the issues if they are there to be seen, and given what you are saying about his issues at home, I would find it hard to imagine that they will not spill into preschool, even if he tries to contain them. This is a GOOD thing! Once preschool notice his needs, you will have the objective support you need to push the NHS system through a bit.