Does anyone dc reactions seem to go from one extreme to another?

[Allonsy]

Ok so we know ds1 6 1/2 has been said to have sensory issues now im not convinced that his issues are that tbh... but anyway ive noticed that how he reacts to certain things can be really random. An example being he dosnt mind loud noises, sirens, loud music, parties, school etc is all no bother, fireworks etc no concern but sometimes he will randomly react last week we went into supermarket and the alarm was going off he wasnt bothered just started shouting 'BEEP, BEEP, BEEP...' over it, yet a few days ago a checkout alarm went off while we in the the que and he clasped his hands over his ears and started shouting 'TOO NOISY' and looked distressed. We always have a noisy house, shouting, ds2 (1) crying etc but tonight ds2 was really crying (overtired and grumpy) and ds1 was getting REALLY anxious, eyes watering saying he needed him to stop, he hated the noise and generally looking distressed.

Also often he 'gets' when we are making a joke with him and laughs say if he thinks hes hurt himself and is making a big show of it, i say 'oh no will i cut it off?' but any attempt to progress the joke say if ds1 is still acting up and i say right dad go get the scissors he will panic and scream 'NO' looking actually terrified all of a sudden or often i say im going to chuck ds2 out the window for being a pain clearly laughing and joking and when i said it tonight while walking towards the window laughing with ds2 ds1 started screaming NO PLEASE, I LIKE HIM, i had to explain that we were playing.

He also kept grabbing me earlier and laughing he wouldnt listen that i didnt want to play, he does this thing where he gets in your face, stares with wide eyes and flaps his hand literally cm's from your face while laughing manically, he said his hands were his friends and not him, when i tried to walk away he grabs me from behind, Later on when i tried grabbing him laughing and he freaked! and ran and hid under the table, yet other days/times he would of been laughing along?

I dont understand why its all so inconsistent.

My dd2 is similar especially with noise! She freaks totally when she's in garden and next door put their lawnmower on and hates the Hoover but is fine on a plane when its taking off! She will have the tv loud but not the radio.

DS1 is the same. Music & TV way too loud for my liking but he gets so upset by the noise of a stir fry that I have to send him upstairs before adding anything to the pan!

DS is just the same. Sometimes he'll be fine with something, his teacher can use a whistle and DS will be fine, but if someone sings or puts a Hoover on he'll completely freak out.

Its really strange i feel like i never know where i am with him or what sort of reaction im going to get, its not like he gets uncontrollably distressed but clearly unsettled when other times he dosnt react at all

Allonsy, we do the same with 'cutting off poorlies' and rather then chucking them out the window we suggest putting them in the wheelie bin. Ds1 is just like your ds, after years and years of us doing it he knows we are joking, but then if we do something like say "ok dh fetch the big knife" he panics.

I think he trusts/accepts our word that it's a joke, but doesn't really understand how/why, so when we carry the joke on he starts to doubt. If you think about it, they are living in a world where the parameters are constantly changing, where a sentence or word can mean X in one situation, but Y or even Z in another and they struggle to read the cues that tell them which is which. Nothing feels static or consistent to them and they are constantly trying to assess what every new situation/conversation actually means.

We discussed stopping the clowing around and joking in this way, but our other two dcs love it so much and actually ds does too, as long as we keep it within reason.

As for the inconsistent reaction to sensory stuff, I would say it's probably down to overload. If you think of him as being a glass pretty full up to the top with just a little room left. One loud noise will add a little more to the glass, a loud noise plus the temperature being wrong will add more and anything on top of that, such as say, a strong smell or bright or coloured lighting or even something that he's worrying about (it doesn't all have to be sensory) will start to overflow the glass.

As long as he is within the limits of his glass he will fight to keep control and not react, but as soon as there starts to be enough stimulation (not really the right word, but I hope you know what I mean) that he reaches overflow point he won't be able to handle it anymore and then you get the reaction.

It's hard to manage, because very often we can't see or identify the triggers and they are often unable to separate it all out and explain it to us. Sometimes it helps to take a step back and try to see the bigger picture, not only of what is happening that second in terms of sensory and feelings/emotions/anxieties, but also what happened just before, perhaps earlier that day and if there's something coming up later and/or if perhaps they might be coming down with something or are overtired etc. It's really a process of elimination and trying to reduce as much of the overload as possible to bring things back down to a manageable level.

Thank you all for replies. That was a really helpful post moosemamma thank you it makes total sense and id never really looked at it like that before. I suppose because ds is undiagnosed and school dont regard him as having any problems other than with attention then he is treated as being NT even though I suspect hes not. I feel like a fraud just posting on here because i know i cant self diagnose but so many things he does just dont seem like 'normal' reactions to life.

Thinking about it when he reacted in the que at the supermarket he was having on his 'days' some days he appears totally 'normal' and others really odd. He had to stand in the que after a full shopping trip and stand still without grabbing at things at the counter. Also that day the shop had changed some aisles around to make way for christmas and ds couldnt stop commenting on it and asking how we would find our things and what if we couldnt and that there was more space in one place and not enough in others etc, so yeah the alarm was likely one thing to many.

We really have pushed the joke thing like 'will i cut it off?' he used to scream whenever i said it but i done it more and more so he learned it was a joke and he now does but as you say progressing it must be anoter matter alltogether. I suppose i thought that because he can pretend himself, he changes our names around alot for fun, calls himself other things like 'im a pizza and your a cake' makes his hands talk and say they are friends etc that he must be able to 'get' jokes and playing, i think i dont quite understand what goes on in his head although i do try.

Allonsy - I feel the same way as you. We are only starting out on the road to diagnosis (have been referred but no assessment date yet - DS is 6) but he sounds a lot like your DS in terms of reactions. He is also struggling with his literacy & motor skills so Dr Bertram I think it may be dyspraxia. All I know is, DS is 'sensitive'!!

Moose - I really liked you analogy about the jar. It really does sum DS up!

yes sensitive is definatly a word i use to describe ds when it comes to his emotions, physically he is a whirlwind jumps all over you loves playfighting and roughhousing with anyone who wants to or otherwise, but he also cries at the drop of a hat, thinks everything is not fair has a strong sense of whats right and wrong but it dosnt seem to apply to him!. We have also been referred at my request and waiting to hear. I looked at the dyspraxia website a while ago and thought the non physical symptoms summed ds up really well but he was assessed by an OT for gross and fine motor skills at 5 and passed with no concerns from the OT. He can hop and jump etc but cant ride a bike. He passed all the fine motor skill tests like drawing within a line etc but his hand tires from writing easily and ive noticed he hardly uses any pressure most of the time, he can now do zips as long as they dont jam and buttons with effort. He cant really play sports, still struggles to catch a ball, has only just learned to kick but wont be a football player! he says his friends are teaching him how to run fast at school because 'hes a slow coach' ive noticed his run is always a forced run superhero style, his natural run is awkward though usually with elbow up and hand bent at the wrist, he also does this when walking when he is tired but not many people have noticed it, so physically i would say there is a few things going on, but nothing that anyone else has noticed.

I think you have a close of my DS . When he loses it, it can only be described as a meltdown & these are usually borne out of frustration. His sense of 'fairness' is staggering (in that he will watch what others get like a hawk but happily accept 'extras' on the side!)

Clone not close!!!!

Glad it was useful Allonsy and Betram, but I can't take credit for it - I learned it on here.

Please don't ever feel like a fraud, or if you shouldn't be posting here - we've all been where you are at some point for example, I was you back in 2009-10.

Allonsy, your sentence "thinks everything is not fair, has a strong sense of what's right and wrong,but doesn't seem to apply to him" is a virtual quote from ds1's year 1 school report! Although the teacher skirted around it a little and said he 'has a strong sense of justice and injustice, but seems unable to apply it to himself'.

Going on your description of his gross motor issues, has anyone checked him for hypermobility? He sounds very like ds2 in terms of sport, running and writing issues. He can hop and jump, but not swim or ride a bike and he learned to do buttons and zips, albeit late, whereas ds1 still hasn't at the age of 10. If it hadn't been flagged as a possibility for the OT, she might not have been looking for it, iyswim. Ds2 is 8 and was dxd with Joint Hypermobility Syndrome earlier this year. Ds1 has some simliar physical problems, some hypermobility, but ultimately his motor issues are down to hypotonia, which basically means he needs to use far more energy than his peers to use the same amount of activity. His unusual run and walk is because he is constantly trying to stabilise his joints and alter his centre of gravity to help him stay stable.

Thank you moosemama, i feel almost relieved that i found this forum so often i read things that sound just like ds and feel like its not just me.

Hes not been tested for hypermobility that i know of. When he was at nursery they decided to refer him to an OT as he was fidgeting alot and they also had concerns with his gross motor skills. When he seen the OT he was exactly 5 years old. The appointment last about half hour all the FMS tests were fine she said better than expected for age, he had to trace a line in between others, copy some shapes and do some colouring. Gross motor skills she said were fine too, he had to jump up and down, hop on one foot, do a crab shape, push his weight back against her hands (he lept collapsing into laughter here and didnt appear to do it) and throw can catch a bean bag which he was terrible at but she didnt seem bothered. He also spent most of the time trying to do other things he was VERY hyper in there, kept wanting to lock and unlock the door, play with the light switch, open cupboards, ask what everything was etc again. Then she said that he kept bouncing and that indicated he had sensory issues and needed feedback and thats why he walked on his tiptoes. She said he was probably bored in nursery and would likely calm by the first term of P1 and i would get a follow up then. Hes halfway through P2 now and not much different, no follow up happened, a new OT took over and after a brief observation of him in class and no meeting with me at all decided he didnt need any further help. A letter detailing the OT appointment again mentinoed the sensory feeback and was very 'mum says' all the way through. It also said
Movement abc manual dexterity beery ? 33/75th percentile
Vmi visual buktencia ? 14/32nd percentile, which tbh meant nothing to me.

Despite the fact he is always, bouncing on his toes, hopping, skipping or jumping, impulsive and grabby and never calm he tires very easily walking seems a huge chore for him and upsets him although running is ok? when hes walking more than 5 mins his normal walk changes into an awkward look, sort of a limp and again elbow up hand bent at the wrist.