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Mumsnet Discussions: Special needs : Sh*t day ....a penny dropped! (58 messages)
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Note Please be aware that our special needs area is not a substitute for expert advice. Whilst many Mumsnet members have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help those who have children with special needs, so if you feel you need some expert help, please click here for some suggestions of who to contact. If you have come across an organisation that you have found helpful, please email their web address to our webguide manager here. Many thanks, Mumsnet Towers.
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Contact the poster Contact mumsnet about this post By fannysparkle on Wed 16-Apr-08 21:06:50
What a shit day, actually the whole week hasn't been great either. Ds started nursery on Thursday last week and seemed to be enjoying it, although i had picked up on the fact that when i picked him up he was always away from other kids and been shadowed by a member of staff.

So i went to collect him on Monday and because i wasn't the first mum in the line he started to have a meltdown, i heard him before i could see him and the teacher had trouble trying to calm him, she was relieved when she finally saw me. Now instead of him being happy to see me as usual, he looked at me sat on floor and said, 'no'. Great!hmm

I tried the gentle approach as always but when that failed had to end up carrying him out screaming and shouting. He continued this in the car all the way home and when i unlocked the house door he stormed past me and went into his bedroom and slammed the door shut. I left him to it so he could calm down and come out when he was ready(we live in a bungalow so i knew he was ok).

I had a very grumpy 3yr old for the next hour or so and was dreading him not wanting to go to nursery the next day. But he got changed no problem and off we went, i had a chat to teacher and we agreed the best thing to do was for me to pick up ds 10-15mins before other parents.

I did this and he was ok, better than day before.
Today we got to nursery and he didn't want me to go(normally he hadn't minded)and he got upset, so i hung around for about 20mins. BIG MISTAKE!!

I got to see how the other kids were with ds and it really upset mesad
He took a toy off a little girl who looked at me and said she had it first, so i gently told ds he was to give it back, he wasn't happy but he did it. Then what she said next choked me up big time, she said,'he's always doing that', and the scowl on her face said more. I tried to explain that he wasn't being mean he just didn't understand that it was wrong but i'm not sure how much of it sank in.
I must ask if the teacher has actually said anything to the kids regarding ds problems. There is another boy in the class who has Autism but he has been given dx and so has a 1 to 1. I do know the teacher is experienced with asd so i just assumed she would have explained to kids, well as much as you can to a group of 3-4yr olds!?

Anyway then he walked round the table and stood on a boys foot, totally unaware, after numerous times telling ds he was standing on his foot he eventually just shoved him off, ds was left wandering what he had done wrong!sad
I had seen enough and needed to leave before i wanted to take ds with me. So i got a teacher to take ds to an activity and i just left but i did hear him getting upset before getting through the door. I kept on walking and got to my car, as soon as my car door was closed i broke down, probably the first proper cry i have had since hearing the word autism regarding my ds.

I guess as the title says a penny dropped today, even though for the last 5 months i have been sure about ds having asd i suppose deep down i was always hoping that i was going to be told i had got it wrong. Seeing the kids in nursery today and the massive difference between them and ds was like a breeze block hitting me on the back of the head.

I am going to give it till the dx is over as nursery have told me they are backing me 100% for a dx as he definately needs 1 to 1. Then if ds isn't doing any better i am taking him out of nursey till sept term starts.
It's so hard not to wrap them in cotton wool but i have to put him first and if that means crying every day when i leave him then i'll have to get used to it.sad
Thanks for reading i just needed to get it off my chest.
Contact the poster See this person's profile Contact mumsnet about this post By 3andnomore on Wed 16-Apr-08 22:33:47
I really don't know all this much about this...but tbh...when I read it, I wondred if this is your first child....because some things just seem a much bigger worry when it's your first....NOT all children that age can really socialise that well...depends where they are in the food chain ( I found wiht my 3 boys....)....
He does actually seem to be settled and happy anugh there and it s quite normal for them to cry at either the time you leave them or you collect them, and some cry eithe4r way (ys is a fine example especially)....
however, if you feel something is "amiss" then please seek proffessinal help...because the earlier something is found t he better...and afterall, as parent we do see all those litttle bits others don't see....
Contact the poster See this person's profile Contact mumsnet about this post By luckylady74 on Wed 16-Apr-08 23:08:52
I really feel for you here - I couldn't cope with seeing my ds1 (as) in nursery, it was bad enough hearing about it.
The other children shouldn't be told about your ds's suspected condition as that would be inappropriate. In my ds's case they simply told them what to do in the situations that occured frequently eg he had a habit of grabbing them around the neck to get their attention and so in the context of a 'kind hands' conversation the children were told to say a loud 'no' and remove his hands.
Tbh though, it broke my heart that that was necessary and I really understand how upset you can feel seeing all the small failed interactions that can happen in a few minutes. However, children love telling tales (my ds1 does too!) and I wouldignore what the girl said -she won't be thinking about it.
I have found things have calmed down and I am better ableto cope with my feelings now, but that is 2 years on from dx.
Keep posting.
Contact the poster See this person's profile Contact mumsnet about this post By AttilaTheMeerkat on Thu 17-Apr-08 07:16:20
If your son is not already under the care of a developmental paediatrician then he needs to see such a person asap. Your GP can refer you to such a person. If your son is already under the care of such a person then perhaps the nursery can write a letter to this pead re your son.

Is there any way this nursery can apply for one to one funding for your DS without a diagnosis?.

I would also now start looking into applying for a Statement of Special Needs particularly for when he starts school. This you would need to obtain from your Local Education Authority. A Statement in place before school may go some considerable way to making his educational life easier.
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Thu 17-Apr-08 08:59:29
Hi Fanny,

This sounds very familiar to me, although we have a different DX. You could ask the nursery to call in your area SENCO. They should be able to apply for extra funding so that your little one can have one to one and give the nursery strategies to help him feel safe.

A pictorial time table for example will give him an idea of what is going to happen whilst he is there.This would give your DS some idea of how long the session will last also. We still have one, I do have to fight for it every year my son is six, he had a picture of me at the beginning and end of the time table, so he knew I would be coming to fetch him.

Two of the things that calmed my DS down were threading beads and making patterns on a peg board.I have provided a box of sensory at school also.One of the things in there is a pair of lamenated foot prints he can stamp on and a silent whistle he can blow, to vent his anger. If he had someone working with him one to one, they could use reassuring phrases repetitively, this also helped with my son.

I do feel for you love, I still collect my son five minutes early as not being at the front of the queue is still one of his flashpoints.

There are three little boys at our mainstream school with autism and they are doing really well. Getting the right support and services really can make all the difference.
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Thu 17-Apr-08 09:35:35
Contact the poster Contact mumsnet about this post By Amber85 on Thu 17-Apr-08 15:43:10
Hi Fanny

My DS1 was exactly that I had months of carrying him to the bus stop from the nursery, eventually it got the better of me and I pulled him out, not due to his behaviour but due to the setting not following the stuff the educational psychiatrist(spelling?) had told them to, they were unwilling to help me, him or themselves, you are lucky to have the support of the setting, I will say however my DS is now 5 and at main stream school he has full time 1 on 1 support from the local authority and the school luckily is willing to work on getting the best from him, most of the time, they have set him up his own way of coming out of school so no more shouting screaming or carrying yey!!!!!!!!

Hope all goes well with getting the support your DS needs, it may be a hard battle but it is a worthwhile one
Contact the poster Contact mumsnet about this post By magso on Thu 17-Apr-08 17:09:50
Fannysparkle Hi! I feel for you. Looking back this was one of the harder times for me and my ds when other children start to move on and become social beings - and you start to know in you heart that your child is - well - not a 'natural'!
You need to get support for your child and not take well meant platitudes for an answer (like I did)! I wish I had known my way round the system earlier.
On the practical side collecting early or first has been mentioned. I used to find singing a set tune on the way to nursery helped the transition to starting each day - he didnt want to leave home. I collected last whilst ds played. (Ds did'nt want to go home either -very embarrising! once the others were gone he coped better). I used to help wash up the paint pots - which somehow he coped better with that than seeing me wait outside or being collected first!
Contact the poster Contact mumsnet about this post By fannysparkle on Fri 18-Apr-08 09:36:12
Thanks everyone for replies, sorry i should have said more about where we are with pead etc, i use to be monkeypie but decided to change my name. We first had Autism said to us in Dec 07 and have been waiting ever since for CDC assessment which thankgod is now only 2 weeks away. Ds has had SALT who is great, she has really hepled his concentration and eye contact.

Attila i will cheack about if nursery can get a full time 1 to 1 with out dx, not sure if it's poss, but it's worth a try.

Tclanger thanks for advice and for the link the sensory bag is a good idea. I do know he already has a box with things in to distract him if teacher needs a little quite to talk to everyone. I was told the other day that school have already spoken to the SENCO and ds has only been there a week, so hopefully things will start to happen.

Amber85 it sounds like you have a good school there, it makes life alot happier when the school help all they can. Ds has a great school too, his teachers always try to do all they can.

Magso ikwym about it helping to know your way around the system. If i hadn't found MN there is so much i would never have known.
I have been asked by teacher to have a meeting next wed so i'm hoping i will be getting some good news.

Yesterday i took ds to nursery and he was taken off to play straight away but started to cry for me almost immediately. I acted like i hadn't heard him and hung up his coat and bag. When i looked over he was trying to get away to come to me, so when i said bye he went mad. I turned and walked out of the door, one of the hardest things i have done so far. One of the nursery staff tried to tell me he would have someone with him all afternoon but i couldn't look at her, tears were streaming down my face. blush

I went shopping and felt dreadful, after an hour i got a call from nursery telling me ds was having a better day and had even sat on the carpet for a while( he refuses to do it most of the time). This made me relax and i was grateful to them for letting me know.
When i went to pick him up he ran to me smiling and gave me a hug, then ran back off to play!grin What a difference having a 1 to 1 all afternoon had made.

I think he will start to kick up a fuss when it's time to put uniform on soon and i hope we can get something sorted before i end up having to carry him in kicking and screaming, not sure i'm strong enough to leave him in that state.

Thanks again everyone for taking time to respond i really do appreciate it.smile
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Fri 18-Apr-08 09:43:17
Ah what a relief he had a better day. Sounds like the nursery are really geared up for his needs smile
Contact the poster Contact mumsnet about this post By Amber85 on Fri 18-Apr-08 12:17:00
I am glad to hear that

Hope all goes well for you from now on, it is hard at first but when you have come to terms with it it does get 'easier' kind of.
Contact the poster Contact mumsnet about this post By fannysparkle on Sun 20-Apr-08 09:21:49
Thanks Tclanger and Amber85, weird thing is i thought i had come to terms with it but after having the really bad day i'm not sure you ever do, do you?

I had a social worker come and talk to me for 2 hours on thursday about the CDC assessment and i had to go through all of ds background from birth....again! She was really nice actually and when she was going into fine detail of the end discussion when you get dx i really had to hold back from bursting into tears. I was given choice to see all the team to have dx delivered or just have it with pead, i chose the whole team as if anyone says something i don't agree with i want to be able to challange them.

So that's it now i don't think we will see any more professionals until the first day of assess. Not sure how i feel but know it has to be done. Enjoying the weekend and not having to leave ds at nursery upset. smile
Contact the poster Contact mumsnet about this post By nikos on Sun 20-Apr-08 11:23:30
Fanny - Your ds is doing great. Sitting for carpet time is a big achievement for children with ASD. I would try and keep him in nursery, rather than take him out until September. If need be you could reduce his time to what he can cope with. That's what we did with ds and then increased it as he was able.
Like us, you have got this spotted early and it will give him the best chance of improvement. We got one to one support without a dx and it was through the LA social inclusion person. Think Surestart can help as well.
Big hugs - I had a really tearful day on Friday, even though I think I have accepted ds's problems I sometimes get hit with the potential for his life to be sad and difficult and that can be so hard to bear. sad
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Sun 20-Apr-08 12:15:02
I think that its great that you had had a social worker to support you. I still find meetings really difficult and have only just resumed going with my husband to the school meetings with the head.Its hard to be emotionally attached, when discussing your child isn't it?

In many ways my Ds has similar problems to children who have autism. Yesterday he kicked a girl in the head at a play centre and we had to leave.It was totally unprovoked, luckily I apologised and explained and the parents were lovely.He gets so frustated at not being able to comminicate, as he is a socialble little boy. There are still times when things just seem over whelming and I am full of admiration for you.

I think its great that you have chosen the more detailed approach of the whole team too, you'll get some joined up thinking.
Contact the poster Contact mumsnet about this post By fannysparkle on Sun 20-Apr-08 18:00:53
nikos and Tclanger both your posts were very supportive thankyou so much.

nikos your comment about my ds doing great to sit on the carpet really made me smile and i hope he does contiue to improve as i don't want to have to pull him out till sept. Acceptance is so hard some days isn't it? When i think about what life i had dreamed of for ds(which i try not to do as much as poss)it breaks my heart so totally understand your tearful day on Friday.

Tclanger ikwym about finding meetings hard, i am a single mum so have to do it alone and i feel like a 10yr old in trouble with the headmaster for this meeting on Wed. How old is your ds? My ds gets frustrated too with not being able to communicate and it just looks to everyone else like you have a spoilt brat who can't have what they wantangry
Your comment of admiration gave me a lump in my throat-thankyousmile I admire you all too, each and everyone of us have our individual things to cope with but not one of us would swap our dc for the world!

Just recently i have started to feel a little panicky too, it's always when i think about dx to come. Not sleeping great as i dare not go to bed till i'm shattered so i don't have to think of anything when i eventually get into bed. If i'm like this now what the hell will i be like in 4 weeks?hmm
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Sun 20-Apr-08 18:26:16
You are welcome, smile I know what you mean about the sleepless nights and we thought the baby years were the worst!make sure you have a nice hot drink and read somthing not related to special needs before bedtime.
Contact the poster Contact mumsnet about this post By nikos on Sun 20-Apr-08 20:58:42
Fanny - big respect for dealing with this on your own. Give yourself a big pat on the back for that. Right now! Keep posting here as well as I've found there is tons of support and can just help with getting through the tough times.
Are there any ASD support groups near you? I'm doing a communications course and it is really helping to meet other parents who know exactly where you are coming from. If you go on the NAS website they should have some local contacts for you.
Hope you sleep well tonight and that ds has a great day tommorrow. smile
Contact the poster Contact mumsnet about this post By fannysparkle on Sun 20-Apr-08 22:47:31
Tclanger i have had a hot drink but kinda hard not be involved with special needs reading as i'm always on heregrinI am logging off soon though.

nikos there is an ASD group called little rainbows and the social worker is sending me the number so hopefully that will be good. I just had a look earlier actully on NAS for a Help course as PipinJo said she did one and found it helpfull. Atm there isn't one with a date after dx and not one in my area but i will keep checking, thanks.
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Sun 20-Apr-08 22:58:16
Doh! just read your last post, which means I am not taking my own advice grinNight!
Contact the poster See this person's profile Contact mumsnet about this post By Buckets on Mon 21-Apr-08 11:07:06
Hi Fanny, spoke to you last week, we seem to be at similar stages with our DS's. Sorry to hear you've had so many low points since but I guess we'll always be comparing and playing spot the difference. So far I've been able to tailor our lives so that we avoid 'situations' as much as possible but this year things will change (new baby and pre-school) and DS(3)'s issues will become more apparent.
Have you seen your local Educational Psychologist? Ours is the person in charge of nominating 'inclusive places' ie 1:1 at pre-school, and she's putting my DS's name forward for Sep at some meeting in June. This is not dependent on the DX but that should be happening (or not) next month anyway. I'm quite glad we haven't attempted pre-school yet, was terrified of hearing what he had or hadn't done, disruptions etc, but the idea of a 1:1 place in Sep is very reassuring (although as you say, it is another penny drop). I think if I know the staff have different expectations and attitude with regard to him, I'll be happier and feel less guilty about his behaviour (because you do, don't you).
Contact the poster Contact mumsnet about this post By fannysparkle on Mon 21-Apr-08 19:41:19
Tclanger i hope your night's sleep was more successful than mine, I went to bed around 11pm and DS decided to come join me ( never comes into my bed normally) at 2am.shock
He then thought it would be more fun to go into living room(we live in a bungalow) and sit on the sofa while waiting for me to come and put the tv on for him....are you having a laugh, it's 2am!!??
I marched him back to his bed and he did go back to sleep for another 3 hours. 5am!!! whoopie do.
I thought he would be a nightmare and tired all day but it was ok actually.smile

Buckets hi, i too tailored my life so i could avoid any situations with DS. So when an early place at nursery was on offer i really wasn't sure what to do. I can honestly say if wasn't for the assessment coming up i would have refused and waited till sept but i knew if i got the backing of nursery staff it would really help getting dx.
No i haven't seen an ed psy yet, i'm sure i will do at assess or shortly after. Have you had a look around or met any staff from your choosen nursey? I have to say they couldn't really do much more for ds at his nursery, it's just lack of manpower that is the problem where ds is concerned. I'm hoping this meeting on wed with teacher will let me know what plans she has for ds and where we go from here.smile

I called the local areas Autism group today and they seem lovely, i am goiing to a childrens play session on saturday, again have mixed feelings about what i'm walking into but it will be so nice to be somewhere that i don't feel the need to explain ds behaviour. It's a charity and parent run so i'm hoping to eventually make some friends which would be great.
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Mon 21-Apr-08 19:53:29
Nope was fretting about behaviour after a really bad day. DS back at school and behaved beautifully, so worrying not entirely warranted.Wonder how many of us are operating on auto pilot grin

Your nursery sound really clued up and supportive, we couldn't get an EP visit til DS was five and that was a struggle. Although its all a bit overwhelming, I'm really pleased that you are getting some great advice and the support group sounds fab.
Contact the poster Contact mumsnet about this post By fannysparkle on Mon 21-Apr-08 20:03:11
I hope you don't mind Tclanger but i just had a look at your photos and i have to say they are lovely, your DS is gorgeous!grin I was hoping you lived near us but no such luck.
I am going to have an early night tonight as i am shattered, but if i'm not asleep in half an hour i'm getting back up as that's when the worry overide kicks in.
Contact the poster See this person's profile Contact mumsnet about this post By Buckets on Mon 21-Apr-08 20:13:59
Ooh jealous about that play session! Someone once mentioned organising a Mumsnet SN families camping meet-up and I remember thinking that would be great, can families of merely-peculiar toddlers (as we though DS was at the time) join in?

I do know our pre-school very well as DD went there last year and I'm still on the committee! It is an 'inclusive setting' anyway so they are very experienced and the lead practitioner told me she thinks her grown-up son is an 'undiagnosee', to use a Mumsnet term. Very reassuring and very lucky that we moved down the road to it before any of this seemed an issue!smile
I'm sure your nursery staff will have regular meetings with the Ed Psy anyway so no doubt your DS's name will come up soon enough. They're all about facilitating school life for your child and that starts with the nursery/pre-school setting.
Good luck all.
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Mon 21-Apr-08 21:05:19
Course I don't mind.I might add my pic is a bid old lol. It is a shame we don't live nearer, do feel free to email tho and have a good sleep yawn smile
Contact the poster Contact mumsnet about this post By fannysparkle on Wed 23-Apr-08 20:45:00
Buckets yes i am really looking forward to the meet up on saturday even though it does feel like a first day at school.

Tclanger i will email you sometime if that's ok, thanks.

Well i had a meeting at school today and there was DS teacher, head mistress and head of special needs. They basically told me that DS has had 2 assessments last week, one by the head of special needs while DS had no 1 to 1 and she did a report. The head then read the report and did her own assess while DS had a 1 to 1 for the whole time he was there and they all agreed the difference was massive.
So they had called me in to ask my permission to apply for emergency funding for a 1 to 1 asap!!!shockgrinsad That's how i felt all at once.
Yet again i left school in tears, my little man was by my side though so i sorted myself out pretty quickly.

I am so happy that they are moving mountains for us but there was that little bit of me which yet again died, that little ray of hope that someone will tell you that it's not as bad as you thought.
They again reassured me that they are behind me 100%, i just want this bloody CDC assess to be over and done with.

So i now have to wait for next meeting which will be in a couple of weeks and they said i will need to do a report of my own which the head of special needs said she was more than happy to help me with. Also i will get to meet the ed psy.

Hey ho another day over.
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Wed 23-Apr-08 20:54:38
Heyyyy! this is great news, I expect he is going on to onto school action plus. One to one has made THE biggest difference with DS.A good Ed Pych makes a huge difference also.I changed the thingy whatsit so I can get emails, so do drop me a line.
Contact the poster Contact mumsnet about this post By fannysparkle on Wed 23-Apr-08 21:00:34
I know it's great news Tclanger so why do i feel so shit!!??sad
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Wed 23-Apr-08 21:09:56
Because it is very emotional hearing your little one has difficulties.I still have very doen days at times.I will get easier I promise. You make sure you give yourself a big pat on the back for getting through all this!!!

I did like scooping him up and running for the hills, I found it sooo intrusive to start with, but everyone has their best interests at heart
Contact the poster Contact mumsnet about this post By TotalChaos on Wed 23-Apr-08 21:16:57
fanny - because you just don't want to be in this position full stop. you want your kid to happily sail through nursery etc, to make everything perfect for them. and it hurts that you can't make it right. and that they need specialist assessments etc. of course it's good he's going to be getting good support, but it's a bittersweet feeling. In the long term, you just have to do your best to measure your child within his own framework of skills as an individual - but in the short term, it hurts.
Contact the poster Contact mumsnet about this post By nikos on Wed 23-Apr-08 21:35:49
Fanny- one to one support has made a massive difference to our son too. And to get in this early means he has a really strong chance of doing well in mainstream school. Well done you for being such a good voice for him.
Is ds dad in the picture? Can he share some of the decision making burden with you?
Contact the poster Contact mumsnet about this post By fannysparkle on Wed 23-Apr-08 22:36:19
Tclanger as always thankyou, i'm feeling a bit better and off to bed as soon as i post this.

TC you are so right, it is bittersweet and right now it hurts so very much. I feel like going out into the street/garden and screaming my head off but not sure how long i will be out there and it's a bit chilly....Thankyou for your support!

nikos thankyou also, it makes me feel a little better just getting replies as you know you are being heard, what's more important, being heard by people who know exactly what you're going through. No DS dad left the pic when i was 4 months pg, real charmer he washmm so i don't have anyone to share the decisions or the stresses.

But swiftly moving on wink i know it's going to be a rocky road and i just want to say(at the risk of boring you all as i sound like a parrot) Thankyou thankyou thankyou for reading it makes a huge difference, for starters i HAVE to stop crying so as i can see the screen properly to read what you all type....night guys!x smile
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Thu 24-Apr-08 10:27:26
Ms Sparkles, I shall get round to doing the CAT thing but in the meantime here is my blog link again, email address is on the left hand side under the picture of the boys.

http://sunshinetc.blogspot.com/

We don't always look like the most recent picture I amight add!
Contact the poster Contact mumsnet about this post By nikos on Thu 24-Apr-08 19:22:50
Fanny - how was ds at preschool today? Hope you are having a good day.
Contact the poster See this person's profile Contact mumsnet about this post By Buckets on Thu 24-Apr-08 19:45:41
I can't even imagine how hard it must be going through all this alone for you Fanny, I think you're doing brilliantly! I find it hard enough with a DH and extended family to support me. Do you have any family of your own nearish? Or maybe his dad's family might be interested and helpful?

Hope you've had a better day todaysmile. Me and my mum took DS to a garden centre this afternoon and let him 'off the leash' so to speak. It was lovely seeing him run free like a big puppy, something I can't do very often with a 4yr old to watch out for too and a 5m bump that stops me picking up DS when he's refusing to co-operate. All he wants to do is run around looking, touching, sniffing and hiding in bushes - I feel so guilty for not being able to offer him the freedom he enjoys so much.
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Thu 24-Apr-08 20:03:56
Couldn't agree more bcukets, she a marvel!
Contact the poster See this person's profile Contact mumsnet about this post By Buckets on Thu 24-Apr-08 20:28:46
Just had a look at your blog TC, your dad's email is so touching, was welling up reading it! My dad is so similar to my DS LOL (ie if DS has Aspergers then so does my dad) so not the kind of thing he would send megrin. But he shows his love in so many other ways, eg arriving on my doorstep this afternoon having fixed my pushchair just 2hrs after the wheel snapped off! And then cleaning my dishwasher filters as he was here LOL. (Fanny, take heart! The future for our boys need not be bleak smile.)
Contact the poster Contact mumsnet about this post By fannysparkle on Thu 24-Apr-08 22:06:21
Hi nikos tbh i have been a bit of a wreck since meeting yesterday and only just started coming round a couple of hours ago.
I went to pick up ds from nursery and he was in the playground with his head leaning on the gate rails and his hands on either side of his headsad no other children were out, there was only a teaching assistant with him. I rushed up to him and he was shaking the gate trying to get to me. I was told he had had a meltdown in classroom so they had brought him outside to try and calm him (so i'm guessing it was a fairly big one). His little eyes were red and puffy so i knew he had been crying for some time, poor little man, i'm welling up just thinking about it again.

He is very clingy too when we get home always shouting my name out for me to answer and reassure him i'm still here.

Buckets you made me smile about your ds running around and touching, sniffing everything, he sounds like my ds. He is like a whippet and i should have a kate moss figure the running around i do after him, sadly i don't!!

Tclanger oh my god, i love your dad, i also read the email he sent you and it made me very envy of you, i'm not so lucky as my dad is in complete denial. He adores ds but it has hit him very hard and he avoids us alot atm.

My mum is not being much help either, since all this started we have grown further and further apart. She quotes me bloody cliches all the time and i want to scream at her. My parents live very close by but it's not much use to me right now. She will say 'if you need anything you only have to ask'.
NOT STRICTLY TRUE!!
I asked for my dad to cut my lawn 4 weeks ago.....still waiting. I asked my mum to b'sit a couple of weeks ago for 3 hours on a friday night, i was going to see a friend sing in a small pub 1 mile from my house. She turned up at 8.30pm and i had to be back by 10.30pm as her face was on the floor. It was the first time she had b'sat since Dec last yearhmm

As for ex partners parents, i only met them once but i did contact them and tell them they were welcome to be in ds life but they didn't take me up on the offer. They live at the other end of country, their loss!

So it's just me and my little man really, i have a few friends but no-one who is around alot and who i can rely on to give support. My auntie lives next door and i really don't know what i would do without her. She comes round everyday and we have a cup of tea and talk about everything and nothing, she is my shoulder to cry onsmile

Anyway i sound like a real sad case and i don't want sympathy i just wanted to tell you all how it is for me and ds.

I have my boy and for that i am forever grateful, one of my favorite poems is called '"For my son"...words i want you to remember', it has a line in it that goes-

'So many treasures await you in your journey of life....and being blessed with you...has been mine.
grin
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Thu 24-Apr-08 23:00:38
Hi fanny, it certainly won't be bleak, not if we can help it x
Contact the poster Contact mumsnet about this post By nikos on Fri 25-Apr-08 18:10:31
Fanny - it sounds like your little man is feeling stressed. Have nursery put any measures in place such as visual timetables. If he had that they could take him outside and show him what is happening next. What about reducing his time a little at nursery?
Our ds was going 9-12.00 and he couldn't cope. We reduced it to just one hour and gradually built up again until he was comfortable.
For a lot of children on the spectrum, nursery is just a mass of noise, voices and rules they don't quite understand. It must have been heartbreaking to see him like that.
Contact the poster Contact mumsnet about this post By fannysparkle on Fri 25-Apr-08 20:04:15
Yes nikos it was heart breaking and i didn't really want to take him today... but i did. I have been thinking about reducing his time funnily enough. It is a 2 and half session and he only does 2 hours but i think i will talk to teacher about taking it down to 1 and half hours and see what she thinks.

They do have visual timetables but DS doesn't really 'get it' yet.

Today though was the first good day he seems to have had for a while.smile
Either that or i wasn't told if anything went pear shaped, he was in a great mood when i went to collect him.
Actually when i saw him he was in the playground (with other children this time!) and he was sticking his chest out and pushing into another boy, he had a very serious look on his face, not a face i've seen before. He wasn't trying to knock him over, it was like he was trying to make him go backwards and he did it quite slowly...very strangehmm

So we have our new group in the morning and i am looking forward to it. Amazingly my mum is coming with me so i'm hoping she may hear/see a few things that will help it sink in a little more.

Thanks to everyone who posted over the last few days as you all helped me through a tough time. I still feel emotional at the slightest thing but not feeling so poo. Roll on Thursday!! (I think)wink
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Fri 25-Apr-08 21:21:31
Hi fanny, the pushing like you describe is one of my Ds's problem, he does it to get a big reaction because he can't initiate play verbally. We are just about to ask for a Pcamhs vist, yummymum has had a really good experience with them this week. I'll pass on anything useful, when we get the referral. have a great weekend. things are looking up for your little one, me thinks!smile
Contact the poster Contact mumsnet about this post By TotalChaos on Sat 26-Apr-08 09:09:57
glad he seems happier at nursery. hope the new group is good.
Contact the poster Contact mumsnet about this post By fannysparkle on Sat 26-Apr-08 22:38:26
Hi Tclanger grin
Yes that makes sense i suppose, the pushing thing to get a reaction, oh bless and to think he must want to play so much but doesn't know how, my little man..sad
What's Pcamhs btw haven't heard of that?

TC the group was GREAT!!

We met a couple who live 30 sec drive away from us and their 2 ASD kids who were all so lovely. The group was in a sure start childrens centre. They had loads of outside space and a sensory room upstairs, DS thought the room was magic!
It is on every month so will be registering next week.
I met some wonderful kids and their parents who made it very easy to talk and be around. DS did not want to leave but i managed it eventually with a secret lollipop hidden in my pocketgrin

Today...was a really good day!smile
Contact the poster Contact mumsnet about this post By TotalChaos on Sat 26-Apr-08 22:39:35
oh good, glad the group went well and was full of nice people.
Contact the poster See this person's profile Contact mumsnet about this post By Buckets on Sun 27-Apr-08 10:58:30
Ah, the props of good parenting - packet of tissues and an emergency treat grin. That club sounds fab.
Contact the poster Contact mumsnet about this post By fannysparkle on Wed 30-Apr-08 19:32:05
So it's finally here, the start of the CDC assessment!! It's DS first day tomorrow and i feel sick to the bottom of my stomach and can't wait for the next 2 weeks to be over.

I'm glad that DS nursery is closed tomorrow as i don't have to decide whether or not to send him in the afternoon.
If i thought i would sleep i would go to bed now to make tomorrow come quicker. A glass (or 5) of wine would go down a treat, damn i'm so unprepared. Probably best as i'll need a clear head in morning. smile
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Wed 30-Apr-08 20:42:47
I think you could have two for medicinal purposes. Good luck lovey, routing for you smile
Contact the poster See this person's profile Contact mumsnet about this post By Buckets on Thu 01-May-08 14:53:06
Sure you'll do fine.
We've just heard we've got our parental interview (ADI?) on Wednesday and then we hear the diagnosis the next day. Feel a bit guilty because I made DH take today off as I was feeling stressed and now he's got to have another 2 next week + bank holiday. Don't think he minds really but it does stack work up for him to go back to.
Contact the poster Contact mumsnet about this post By fannysparkle on Fri 02-May-08 19:57:23
Thanks you two! Actually it went really well, ds behaved exactly as he would at home. We saw numerous people popping in and out of room, it was noted that ds walks on tip toes most of the time, that he is self contained when he plays with something, that he repeats back what you say(echolia) and he has the nickname 'Whirlwind' grin

I was asked a couple of times,'is he always this lively at home'? ERM....yup!

He showed his lack of danger awareness and had a meltdown. So by the time they have seen us 2 more times hopefully they will not be able to deny ds a dx.

Buckets good luck for Wed and Thurs!!! I will be thinking of you. Ds dx will be a week after.

Only bit of bad news is that ds nursery WERE going to meet with the board this month to apply for SA+ but the ed phys at the hospital told me they don't meet in May because of the bank holidaysangry bloody hell!

Oh and also i had a call from nursery today 40 mins after i had dropped ds off. He was very distressed and had not stop crying since i had left so they called to ask me to come pick him upsad
Contact the poster Contact mumsnet about this post By TotalChaos on Fri 02-May-08 20:19:36
glad you sound reasonably positive about the assessment procedure. typical bureaucratic nightmare isn't it re:monthly meetings. Possibly he was unsettled at nursery because of the appointment breaking up his normal routine?
Contact the poster Contact mumsnet about this post By fannysparkle on Fri 02-May-08 20:25:13
TC maybe so but it seems like with every passing day, since starting nursery, ds is becoming more and more clingy with me. When i take him to nursery 9 times out of 10 i have to sneak off and i think today he couldn't handle it when he noticed i had gone. Not sure what i can do to stop him being so clingy. Even when i leave the room he is calling out for me and if i don't give a response quickly he gets distressed.sad
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Fri 02-May-08 20:58:49
Hi

I had a very similar experience with M, I'd get a phone call from the pre school, twenty mins after I'd left gim.They'd ask me to bring various items such as comfort blankets, toys etc, where as what he really needed was for someone to establish a routine for him so he could make sense of things and feel safe.My coming and going made things even more confusing for him. Even yesterday, he was climbing the walls, at school, because I had been ill the night before and his routine had all gone to pot

It is a terifying process for you to be going through, after all he is your baby and you just want to protect him. getting a DX at such an early stage can only be a good thing and it will make it so much easier for every one to meet his needs.Hang in there, lovey we'll all be routing for you.smile
Contact the poster Contact mumsnet about this post By TotalChaos on Fri 02-May-08 21:03:34
I was just about to suggest some sort of visual timetable, but I see that TClanger has suggested it way back down the thread. DS took a good few months to settle down at nursery (when he was 2.5), at that point I was still deep in denial territory (when GP and HV encourage you to think all will magically come together by the time he is 3, it's ever so appealing to believe them), so left it to nursery staff to deal with as the experts blush. I hadn't tumbled to DS's receptive language delay at that point sad, so didn't realise that visual aids may have helped.
Contact the poster Contact mumsnet about this post By fannysparkle on Fri 02-May-08 21:10:50
So what do i do then? I make sure i tell him he is going to nursery about an hour before we go and keep mentioning it. Do you think i should make my own visual timetable or do you mean at school? Nursery already does it so maybe it's just a case of giving it time and sticking with it even if it is hard.
Contact the poster Contact mumsnet about this post By TotalChaos on Fri 02-May-08 21:13:57
ah I hadn't picked up on nursery already doing it. maybe worth making a visual timetable yourself - or just showing a picture of nursery before he goes.
Contact the poster Contact mumsnet about this post By fannysparkle on Fri 02-May-08 21:30:17
Ok thanks i will give that a go, i'll try anything if it means ds being happier while he's there.

TClanger...i'm hanging, thanks to you lotsmile
Contact the poster See this person's profile Contact mumsnet about this post By Tclanger on Thu 08-May-08 08:55:51
Good luck atthe hopsital today ms Sparkles!


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