Do you ever have days when it all feels as raw as the day of diagnosis?

[Jimjams2]

Because I'm having one today. God knows why, no trigger.

Yes is the answer and so sorry you are having one of those days. I think they happen less often as our children get older but I may just be making a generalisation. I find its usually a combination of feel crap anyway usually combined with sleep deprivation, maybe worse or different behaviour from DS, something looming that needs to be dealt with or maybe just a disappointing weekend?????? Oh, just remembered its been half term. Is he back at school tomorrow or already gone back? Dxxx

Oh Jimjams. I manage to convince myself my boys are OK- that DS3 is just the victim of an over protective mum and willc atch up, or whatever. Then he starts phasing and I realise but not for long, I'm completely in denial and will be until I see in written.

It was half term the week before Davros. Maybe sleep deprivation. DS1 is actually being quite a sweety (apart from the pinching). Not sure what the trigger was- I think I made the mistake of thinking about summer holidays this morning and then realised we won't be going on one, wondered if we could, decided I was mad, then felt bad because with ds2 starting school term time holidays for ds2 and ds3 are out.

Haven't felt like this for ages, so came a bit out of the blue. I wonder if it ever goes away completely?

Can you be in denial if you know you're in denial peachy?

Ah yes you can JimJams coz I recognise it from with Sam LOL! I couldn't beleve it and when I told people, even though I did, I felt as if I were really lying and then got the dx and crashed badly- I can 'see' the whole denial thing going on again but from the objective point of view iyswim. It'll take the dx (and a big crash like last time whn I had a HUGE row with someone after Sam kicked off) before I get there. Its all a process though.

Sleep deprivation is the pits, plays nasty tricks with your mind.

I know what you mean. Though I tend to have more "moments" where it all suddenly comes over me in a rush. Usually quite a clear trigger like today I was playing with my visiting 13month old nephew and he could roll a ball backwards and forwards to me 10x better than 51/2 year old Ds2. I have to really concentrate on thinking about something else not to burst into tears. Other times I just feel generally sad and that can be triggered by something unrelated that is sad or moving but lowers my "defences" as it were.

Sorry you are having a bad day.

I do remember that with ds1 peachy- thinking that he was "just a little bit" autistic- close to dx, but not bad enough- I think my second post on here says that PMSL.

OOh I cheered up today- looked outside the window to see that ds1 had dragged a chair into the garden (with a fabric seat) and had stamped on it, and covered it in mud, trying to look over the fence. All back to normal then, mindless destruction.

Such ablack outlook JimJams

(PMSL BTW)

Yes.

So sorry to hear you are having one today .

Wish we were closer.

y!es hun i get my down days my dd is 5 years old and hasnt been diagnosed as yet, but sometimes i think that is better!

Yes, see my posts re crying at keyboard!
Sorry Jimjams. You are such a huge support to me, with a greater load to bear.

Oh yes - today at SN playgroup one of the volunteers brought her 18 month old NT daughter. We all wear stickers with our names on and she was copying me sticking the sticker on the end of my nose, my foot etc - all completely spontaneously. Ds2 struggles so much with imitation. In the end I'm afraid I had to make an excuse and walk away .

ooh ouch @ 18 month old. That is hard. DS3 is streets ahead of ds1. He doesn't have that many spoken words but I can have a conversation with him. When I'm doing verbal imitation he always gets in before ds1!

had quite a funny day in a way. On Saturday ds1 got hold of 4- yep 4- croissants. That's more gluten than he's had in 5 years - in one go. I stuffed him full of enzymes straight afterwards, but said to dh this morning "oh that's interesting there's been no effect" and began to dream of coming off the gluten free diet. Sent him happily off to school- then- in the home-school book had a happy morning repor,t then the afternoon began "PS- Oh dear- not a good afternoon"- you can get the rest. Big full on food reaction this aftenoon-at home as well- very obsessive- headbanging then shrieking with laughter up and down with massive highs and lows. His poor tutor has gone home with what looks like a lovebite to her neck (it's a bruise from him pinching her). So I guess that's a few more years of gluten free food then!

Blimey - 4 croissants . Did he actually eat them all? Funnily enough DS2 scooped the middle out of a loaf on Sat - explosive poo and more stimming/withdrawn behaviour but very short-lived. I'm wondering if the Nutrilink regime is helping him cope better with 'danger' foods? He's not on enzymes though.

Oh yep- munched the whole lot - he was in heaven. He has just punched me quite hard, which is very unlike him, so I am assuming its the croissants again.

The day of ds's diagnoses doesn't really stick in my mind tbh because I'd known in my heart for ages what I was going to be told. Most of the time I'm ok because I tell myself that things could be a lot worse and he is improving all the time even if it is slowly. Must admit I was caught by surprise this morning though. My friend's little girl was actually born on ds's birthday so in May he will be 7 and she will be 2. Yesterday she lost a welly on the way to taking her big brothers to school and this morning we were walking down the road, she and her mum to home and me to my car. Suddenly she pointed and shouted "look, my welly boot" really clearly and right across the other side of the road, on a wall was her missing welly. Never had the gap between her and ds seemed so huge. I don't know if he'll ever be able to do something like that and she's not even 2. It has made me feel very all morning.

I have days like this.

I bumped into an acquaintance at the gym yesterday. She was so happy. Her daughter had been accepted at a very prestigious grammer school. She was over the moon and bursting with pride, naturally.

Of course, I was pleased for her. I also felt great sadness. She doesn't know that my son is Autistic. Only those closest to me and my son know. She said one that one day I'll be there celebrating the same good news, too. My heart broke and I don't know how I kept my composure. I've been feeling very down since.

It's so tough at times.

How old is your son Butterfly?

I'm ALREADY dreading ds1's contempories getting married!!!!!! Funny thing is I don't even care whether ds2 or ds3 get married/have a civil partnership/have kids etc- it's just that they have the choice iyswim.

Aww the nice thing is thought that when you find people who do like them, they REALLY like them. I've just binned anyone who can't cope.

about the childminders- do you have anyone else lined up?

what a pain. I find that after school/not quite the end of the working day bit really hard. It's ok with ds2- he moans if he gets picked up from school before its dark, and ds3 can stay at nursery until late if he has to, but so hard with ds1 and the bus.

Oh Fio, I know just what you mean about that feeling that other people don't love, or even like, our children. I feel like smashing peoples' faces in when they are insensitive sometimes and I've had that from other parents of children with ASD (only a few). I know DS can seem "scary" "alarming" etc but, as Jimjams says, there are people who think he is marvellous once they give him a chance. He can't use the tricks DD can to make people laugh or feel kindly towards her, yet he still manages it more often than not.

scary or alarming???? Your ds is lovely! I can still picture his smile Who needs conventional behaviour?

Jimjams, my son's 8. He's an only child. His father and I separated 4 years ago.

I've lost touch with many friends as they all have NT children and I get so fed up and depressed hearing about how well little johnny's doing. I know, that's bitter, but I cannot help it.