I want to help DS and I don't know how

[Babieseverywhere]

I always knew my beloved DS was wired differently than his siblings. I worried a lot about his lack of eye contact, even as a breastfeed baby he wouldn't look at me. But I pushed my worries aside and told myself he was fine.

He hates school and recently had a massive melt down on the way to school, I spoke to a teacher (senco ?) about my concerns all 4 x A4 papers worth. I said I understood many/all of my concerns can be seen in NT children, but is it normal to have all these concerns in one child.

After listening to all the concerns, she told me though she couldn't give a dx, it was clear our son is on the austic spectrum but so mild he won't get a dx.

This has me very conflicted. Relieved that his behaviour is not due to my bad parenting, sad as I want his life to be easy, cross as without a dx he'll continue to be labelled negatively by other teachers, children and parents.

She said potentially she could refer him to get help to make friends. He has no friends but doesn't seem to notice or care. As DH said I care more than he does.

This evening I picked him up from a school party, he was crying, melting down, really upset, as he hadn't won anything. Despite being nearly 6yo his melt downs are similar to a 3yo. Teacher with him, seemed cross with him. :(

He loses dinner time and frequent times out, for behaviour out of his control, like fidgeting in class and not playing playground games properly.

How do I help DS cope better with school ?

I wanted to thank everyone who has took time to write on this thread. I have read everything and took a lot from what I read. The video made me cry.

My son won't go anywhere on his own, even upstairs to the toilet. Either me ormonemof his siblings go with him, is that NT or something worth noting. Is it just anxiety, he won't stay in a bedroom if all his siblings fall asleep, he'll come to our bed or downstairs if we are still up. He has his own room but refuses to use it. We are redecorating it atm, hopefully to make it more attractive for him.

I tell myself that label/sign post or not will not make any difference to who my child is and how he acts. He is my loving child and always will be.

My ds still won't go upstairs on his own and relies heavily on ds2 to go everywhere with him. Our bathroom is downstairs and if ds2 comes down to go to the toilet, ds1 has to come with him - he won't stay in their room on his own for even a couple of minutes. (He wouldn't consider having his own room and insists on sharing with his long-suffering younger brother.)

You are absolutely right. Regardless of label/sign he will still be your lovely boy, same as he's always been. The only difference will be that those that need to will be able to start understanding him and his needs a little better and therefore give him the support he needs to find his way in the world.

Hello lovey
will chat properly when we get chance but my first thought is, having skimmed the thread, is that if you pursue a referral via the gp then would you even need to tell the school? They don't see what you see, day in dayout, how he is when ha doesn't want to leave the house or go shopping etc
Obv I don't know how the process works (I'm Babieseverywhere's rl friend in case anyone's wondering why I'd comment when I have no clue what I'm on about) and it may be that the school has to get involved at a fairly early stage but if they don't, why tell them until you have to if you feel they won't support you?

I'm reallu chuffed you spoke to the senco but agrer that it's her job to support sn children not to diagnose them. Take her up on the offer of a referral.

maybe get dh to read this thread ?

Big hugs x

Honestly I don't know if they can assess him without the school knowing, The school is so certain he has no issues, it is all in my mind.

TBH I don't if an assessment would show anything, especially done at school when he tries his best to behave.

If things go his way, he just comes across as quirky only. It is only when things gets to much and he has a meltdown that it is so clear that he needs something more and I don't know what.

On good days I think I am crazy for feeling this way and then another meltdown, bad day happens and I despair.

I don't want to push people to tell me something I don't want to hear.

ps. What about the not being on his own thing, do/did your kids do that, Tigerfeet ? If they did what age did they stop it ?

TBH if I get DH to agree, I would feel much better to get DS tested...even if it came back that I am a poor parent and he is 100% NT. After all they would only give him dx if he fit the criteria, wouldn't they ?

I need to talk to talk to DH properly and show him this thread, if he hasn't come across it yet. (He is on mumsnet sometimes) which is partly why I didn't name change.

Q1, Would it be possible to get dx without involving school ?

Q2. Would it cost us ?

Q3. As I think it is Aspergers and not classic autism, what would the best asessment be to ask for or with ?

Q4. Plus would they still be able to understand and get him, if he is having a good day with no meltdowns
iyswim.

Q5. Would be be worth considering a private assessment ?

Thank you PolterGoose. Just one last question if you are still reading, how long will it take ?

Dd2 4.7 has been taking herself off to the loo for a few months although I must admit I wish she'd ask for help with bum wiping [yuck]. Can't remember for dd1, but around the 4 mark I'd say.
dd2 is happy to play by herself for maybe 20 minutes at a time before she gets fed up and looks for company.

Another experience for your questions:

1. You don’t have to involve the school, and you may not want to if you think the school will be obstructive, but it can be easier for them to diagnose if you give permission to contact the school. They may need information about how your DS behaves in different settings and when you are not there. They will be asking about your DS’s behaviour (etc) not about whether the school think he has autism. When my DS was diagnosed his teacher filled in some diagnostic questionnaires about DS’s behaviour for them, so did we. Also the paeditatritian came to observe DS at school (I think that's unusual though)

1. Diagnosis is free on the NHS. At the price of probably having to sit on a waiting list.

1. No need to ask for specific tests at this stage. It could be helpful to mention ASC and say the SENCO thought so too, but they’ll probably want to look for a whole assortment of things to rule other possibilities out. The most important thing is your list of concerns.

1. The paediatritian had a long interview with me before she saw DS, and then she did a bunch of tests on his abilities, chatting to him meanwhile. I think she learned as much from the conversation as from the tests – she actually got him to do “Can you tell me what time it is?” “Yes” which I hadn't noticed before. The child-psych went through different ways of winding DS up and saw how DS reacted to them – contradicted DS, took something out of his hand, etc. The speech therapist had a lovely friendly conversation with DS about a topic that DS chose, to and fro, eye contact, no problems at all – and then she totally floored him just by changing the subject. They seemed to know what to look for and how to find it.

1. I would start with the GP and NHS. The diagnostic process varies from place to place and the school are more likely to take a diagnosis seriously if it comes from their local NHS. If you’re waiting forever and you are desperate for advice and help at home, or if the NHS make a crap job of it, then a private diagnosis would be worthwhile.

It took us about 8 months from going to the GP to getting a diagnosis, including about 4 months’ wait until we first saw the paediatritian.

PS I might not have answered your fourth question properly; what I mean is, they don't need to see a meltdown happen, because they are looking for the underlying issues or disabilities that can make meltdowns happen. And those are still there on a good day too.

I just don't understand how I see should a difference in what I see/think compared with what the school staff see.

It is question four which worries me most. Get him onto his topic of the moment 'mine craft' and it is clear how obsessed he is. I entertain myself my trying to divert the conversation onto really odd topics and see how long it takes to get back to Minecraft...so we get staements like 'no mummy, there are no goats in Minecraft' bless him :(

Kids can vary in different situations, in fact my DS was much worse behaved at school than at home, to the point where we needed to involve the school because they needed support too. You're not in the same situation, so you can do what seems best to you. I guess that if they think they need input from the school they'll ask you.

My DS was into Pokémon rather than Minecraft, but he could bore for Britain about it Now he talks on about obscure bits of physics- at least I understood Pokémon! Bless all our funny kids, on the autism spectrum or not.

Babies, my ds was also delightful, polite and engaged during the assessments. The psych still saw everything she needed to to confirm the diagnosis. Same when he saw the CP, Paed, OT and Ed Psych.

My ds's current obsession is also Minecraft and he is very adept at turning around just about every conversation to include it. If he can't quite manage it, he'll say something like 'yes, but Mummy do you know that in Minecraft you can do x/y/z' in attempt to change the subject onto Minecraft outright, although to be honest most of the time he couldn't care less whether or not we are interested and engaged with what he's saying - he just needs to say it. He's also obsessed with things like programming and servers etc, as a direct result of the Minecraft phenomenon.

Fortunately dh is in the IT industry and although ds1 leaves him standing in terms of technical ability, at least he understands all the implications and can keep a handle on the safety/security side of things.

It's ds's birthday on Thursday. He will be stuck at home alone with me, siblings are at school and both sets of gps are on holiday - so to cheer him up I offered to let him give me a half hour tutorial on Minecraft. He was ecstatic when I told him. I think it may have been the best part of his birthday ... if we weren't setting him up with his own server as a present.

His previous obsession (which still exists, but is now second place to Minecraft) was Pokemon. He attends Pokemon League every other weekend and at one point could recite 386 different Pokemon and their characteristics, strengths and weaknesses.

Ds2 is also into Pokemon as a result of being brainwashed by his big brother though, so my years of accumulated knowledge are not going to waste.

"I just don't understand how I see should a difference in what I see/think compared with what the school staff see."

It's really common. Firstly the majority of teachers have almost no SEN training and don't know the signs.

Secondly, many children, particularly those with Asperger's learn to 'mask'. Essentially they teach themselves strategies for getting by, like learning to say sorry when they don't really understand or don't agree with, what they did wrong.

Another aspect of masking is holding themselves together, really tightly all day and spending every minute of every school day working extra hard not to do/say something wrong.

It's a bit like being part of a big game, where everyone speaks a different language, everyone but you knows the rules - and to cap it all you can't understand all the subtle signs, expressions and gestures the other players are making that seem to help them understand what to do. If you play the game often enough, eventually you will learn, to some extent - just from repeated experience, what things get you into trouble and what you can do to stay under the radar.

That's why we then see the behaviours we do when they come home from school. They are beyond exhausted from spending the day trying to decipher and apply the rules and language of 'the game' and holding themselves together to create a 'front' for everyone else that they really do know what's going on. As soon as they are through that front door or in the car they are safe, with people they know and trust, who will love and care for them even if they get things wrong, so it's safe to finally let go. Often this will result in something akin to a volcano going off at something seemingly minor/trivial to us. They just can't hold it in anymore and they don't need to, because now they are safe to be themselves.

Ds1 used to kick off, without fail, ever single time we walked through the front door. It totally confused me for years, as he would be seemingly calm and happy outside the front door, yet as soon as he crossed the threshold he'd explode over something minor like his brother accidentally touching his arm. It was only when I started reading up on AS that the penny finally dropped and I realised what was happening. So, we changed things a bit, so that he always went in first and went up the stairs, a few steps up from his siblings while he took his coat and shoes off and put down his bag etc. That removed the flashpoint and gave him the space he needed to make the transition he needed from school and the mask - to home.

He walked to school well today. earning a star of ten minutes screen time later

I am struggling to separate normal five year old behaviour from my son iyswim.

This morning (after I got his attention) I asked him to take the breakfast plates into the kitchen. He did so but left the spoons, cups and bowls as they are 'not plates'

So is that child being silly or example of literal thought ?

He cried once when I said I was going to eat him all up...same thing I guess

I'm glad your DS had a good journey to school today.

As for the plates.... was he giggling or looking to see how you reacted, the way kids do when they're being silly or playing a joke? If not, then it could well be an example of literal thought.

He sounds like a lovely kid by the way!

He was cross with me, shouting but I picked up the plates, these are cups. You didn't say cups.

He is so awesome. He always runs out of school in a massive arch around and behind me and gives me a big hug from behind, as he misses me :) I have to be care ful not to 'see' him running, or he gets upset When he has a bad day he walks slowly directly to me.

He tells me "I love you more than a mummy can be loved" every day with cuddles.

I just others to see him like I do...quirky AND fun :)

I still struggle sometimes to separate DS’s Asperger’s from normal teen behaviour. After all, they’re both part of “who he is”. What works for me is to assume that if he doesn’t do something that I expect him to do or want him to do, then it’s probably a “can’t” rather than a “wont”, unless I have some concrete reason to think otherwise. DS usually does want to please me and to do the right thing.

To be honest, between the time that DS first showed signs something was wrong/different and him being diagnosed I didn’t really try to reward him to behave better, or punish him for behaving badly unless it was something like serious aggression. I figured that he already wanted to behave better and he was trying so hard most of the time but he just couldn’t always make it. And before the diagnosis I had no idea at all what was within his abilities and what wasn’t. (It varies for different kids though – so long as rewards are working for you, that’s great.)

We used to have huge fights because he would never ask for what he wanted, though he could talk fine at other times. He used to tell me to “guess” what he wanted! Before he was diagnosed I thought he was mucking around or trying to control me and I tried to say “you can’t have it until you ask” which led to immense tantrums. But afterwards, I realised it must be one of his communication issues, and I started to go through lists of things he might want until he nodded, which was much more effective. He is better than he was, though often he still expects me (and DH) to just know what he wants.

I did use rewards as bribes to get him to try new things though, I got him to go to social skills sessions by giving him a couple of sweets afterwards! After a couple of sessions he’d decided he liked it and didn’t fuss about going (and he still got the sweets too).

So, he meant it about the plates then. Bless!

It upsets me to admit this, but my DS never came to me for physical affection. He used to ask his class teacher for hugs. He went to a nursery from a young age, and he believed that nursery staff were Hug People and transferred this to school. Until his teacher told me, I just thought he didn't like hugs at all. Makes me It was always hard to get him to have hugs with me later on - though he's still quite unembarrassed about blowing me kisses down the phone!

The phone kisses sound lovely :)

Yes, we are very lucky to have such a cuddly son.

I have decided to have a chat with the GP when I can (prob couple of weeks for non emergency appointment) and have a chat. See if they would refer us and what the waiting lists are.

I hve been offered a referral for my son, had one chat with DH which I am not repeating here, we talk again this weekend about if he will support my wish to take up this refferal.

Sigh, I am just really struggling today, emotionally I mean. :(

My oldest is away at the moment so I took our remaining three children to library to meet a friend and then via playground back home for lunch and put baby down for a nap....sounds a nice simple morning doesn't it.

Took me over an hour to get them out of the house. Ds inatially refused to leave house, get dressed etc. He kicked me while I dressed him. Screamed when I turned the computer off, after five minute warning.

He moaned all the way to the library as he wanted to go to the park, I choose to walk as I need the fresh air. Cwhen we got in the library, he cried and rolled around the floor. Got crossed with the young 2yo toddlers who tried to play with the big blocks with him and screamed when they knocked his minecraft man over. He then got into the block box and cried until I pulled him out. Another meltdown when he left the library as he didn't want to leave.

Walked to park. Meltdown at the gate as he had changed his mind and no longer wanted to go to the park. Stood kicking the gate after i talked to him, he waked to nearby play equipment and kicked tht instead. shouting in wanted to go home. I am trying to play with our two youngest girls who want to stay at the park and encourage DS to join in. Finally he moves to the spinny thing, but sits there and cries :(

I give the girls a five minute warning that we are going to go home, I can't take his behaviour anymore. He moves to our pram and pushs it into the fence and kicks it, I tell him for every bit of bad behaviour we are staying at the park longer. I am praying he will just stop misbehavouring for a minute so we can get going. i Can not reward bad behaviour but on the other hand i can not take the looks from the other parents any longer either. One grandmother asked how old he was and was surprised when i ssaid nearly 6yo, she thought he was much younger and by his behaviour i can see why.

I just feel so low today. DD2 and me are cuddling on the sofa, DD3 is in bed and DS happy watching you tube videos on Minecraft and all I am trying to do is hold myself together and not cry.

It shouldn't be this hard...should it ?

I am a terrible parent.