Stressful Afternoon

[Lilypad]

My son currently is on a very long ASD waiting list and I am in a sort of limbo because he hasn't been diagnosed with anything yet. He is almost 8 but I feel like he never grew out of the 'terrible twos'. Today was the worst example i've had for a while...

I picked him and his older brother up from school at the usual time and we walked the usual route...but he seemed really agitated on the way home. He usually picks up sticks and holds them in his hands (he always has to be holding something, sticks and rubber bands are his favourite things to hold). Today, he picked up a long stick and was bashing it against walls, then he did the same routine he's been doing for the past few days...moving from the pavement at a certain point to a patch of grass where he walks on his tiptoes and counts. Sometimes we go into a shop on the way home, but today when he asked if we could go in I said No, and that we'd go into another shop because I had to go to the bank. He ended up getting angry with me and crossed the road by himself which he knows he's not allowed to do...I never shout at him though as this upsets him even more. It took about 10 minutes to convince him to move but he was terrible the whole way to the bank.

When we finally got to the other shop, he was in an awful mood! It took him about 10 minutes to decide what he wanted...which is usually the case whenever we go to a shop. He is terribly indecisive. Then he put the chocolate bar on the counter and when I touched it, he screamed at me for touching it and threw himself on the floor holding his ears. I felt really embarrassed as there were other people in the shop staring at him.

Then for the whole way home which takes 5 minutes to walk, he repeatedly punched himself in the head saying "damn" over and over again. His older brother told him to be quiet at which point he screamed at him and pushed him. The woman who was walking in front of us gave him the dirtiest look. He only stopped doing the punching and saying "damn" when he saw his dad was waiting for him at the bottom of the street. By this time I was close to tears.

He never tells me about school, I always ask him how school was and he always says "it was ok" or "it was horrible because people were horrible to me" but I can never get anything more out of him than that. His brother told me today that some boys from the year above him were hitting him in the playground so I think that may have something to do with him being so distressed today.

I think I am so confused because he has never been diagnosed, but does this sound like typical behaviour of someone with ASD? I really need to be able to talk to other people in similar situations (like a support group) but I don't know where to look...

[sinai]

oh dear what a terrible time for you.

 

it sounds as though you changed his routine and this is what lead to his behaviour, he had to go to a different shop to which he was used to and he found this very stressful.

 

as well as coping with a new shop maybe a different set out, on where things are, he had to make a choice, was it a big selection to choose from?,were there a lot of people in the shop?

 

when he saw his dad he probably felt more secure as he is familiar to him.

 

some of the children i work with are not fully aware of there behaviour outburst, but it sounds as though your son was and he was sorry for what he had done.

 

try sticking to the same routine for a while to see if the behaviours improve, and when you want to change the routine do it a bit at a time, for him to get used to it.

 

i hope this helps a little.

 

sorry it is difficult to type exactly what you want to say.

 

i only go on my experience of working with different children with autism over the last 11 years as an ABA TUTOR.

[NickyB]

Hello Lilypad

 

It sounds like you had a really tough time today <'>

 

My son is 7 and has ASD, and your experience was very familiar to me. As sinai says, the slight change to his routine could well have distressed him. If you know that you are going to do something different from normal, it may be an idea to try to pre-warn him. Does he read well? I write lists for my son, going through exactly what we are going to do, and crossing things off as we've done them. It takes a bit of getting used to, but if you can find out the sort of things that upset him, you can beging to anticipate any problems before they arise. It might help if you keep a diary for a couple of weeks as it might show up any patterns and flashpoints.

As far as the shop goes, could you talk to him before you go in about what he would like, maybe narrowing his choices down to 'either x or y' ?

 

Oh, and try not to worry about what other people think - they have no way of knowing what you have to deal with. I tend to just ignore it, or give people a smile and concentrate on my son. Easier said than done though

 

You might want to have a look at the autism services directory - http://www.autism.org.uk/directory.aspx - for details of local support.

 

Hope that helps and take care <'>

[Lilypad]

Thanks for the replies.

It's really complicated with my son. Changing routine doesn't usually bother him - like I said, we only sometimes go to the shop on the way home. But I think if he has a tough time at school during the day, it can change his moods. It's very hard to know what happens at school though because he really doesn't tell me alot and his conversations are very limited. I don't want to be one of those annoying parents who go to see the headteacher every day either!

A family therapist and psychologist from a CAMHS - type organisation recommended using visual aids for my son as he finds it hard to understand verbal instructions etc. But, I don't really know what they mean by this. They haven't really explained alot to me and I feel that because he doesn't have any diagnosed problems, I am unable to get help or support with things like visual aids.

 

As for not worrying about what other people think, it's funny because I feel like I should explain to people that it's not his fault that he behaves like that and I even told the shop assistant that "he has problems"

 

Thank you anyway, I will have a look at that link you posted

[Suze]

My son was very similar at that age , (he was dx at 6/7 yrs), he would try to keep it reined in at school, then as soon as we got to the car he would kick the tyres , thump the seats and rock about very vigorously.He would be in a very agitated state, he almost needed the release of emotions iyswim.Once at home he would shut himself away for a couple of hours and isolate himself.My son was very much affected by the sensory environment within school, noise smells , and visual movements and lights.He also really struggled socially and suffered taunts and teasing , pushing tripping up etc.There were a few occasions when he blew at school, usually though he ended up shutting down and crying .All this lead to a breakdown and eventually he was statemented.Thankfully he got some help.At primary level it was,nt that good but better than nothing.His school did,nt really understand autism.From how you describe your son, clutching his ears and rocking it sounds like his distress could be sensory related rather than the break in routine and going into another shop.I would go into school and discuss your concerns with the senco, does he have any help, an IEP, are they aware he may have difficulties.Olga Bogdashina wrote a fab book called the sensory child (or something like that) it is well worth a read.Are you in the process of getting a dx, if not I,d see your gp for a referral if you think it necessary.Best wishes suzex.

[Chloes mum]

Hi, Have you thought about getting a private diagnosis for your son? He sounds pretty similar to my daughter who is nearly seven. We too were on a very long waiting list to be assessed - we were told it would be at least 2012 before she could be assessed by the panel. We opted to go private and she was subsequently diagnosed with mixed Aspergers and ADHD. It was such a relief to be able to explain her behaviour to people - especially those who glare at you as if you are a bad parent!!

The school have put in place a 'home-school link book' which they write in every day so that we can see what sort of a day she has had, and likewise we can write messages to let them know things. This saves you having to go in and ask all the time, and also acts as a good evidence base to take with you to any appointments.

[Lilypad]

Hi Suze, my son's school are doing all they can to help him but I think there is only so much they can do...after all, he is not the only child at the school with problems. I last spoke to the SENCO around March or April and I filled in the ASD assessment forms with the Ed psych in early February but I've been told we'll have to wait about another year before we get an appointment. I don't know anything about the process of diagnosis (how many appointments he will have to have etc). I do feel sometimes that I should speak to the SENCO but I don't want to feel like i'm complaining to him!

My son has been his usual self today, not as bad as yesterday but there was a lot of shouting and screaming on our way back from school

 

To Chloe's mum, yes I have thought about going private for my son but I can imagine it would cost alot and I just don't have money to be honest. All I can do is wait...

Is the 'home-school link book' you mention similar to being statemented? My mum is a teacher and said that some children at her school were statemented. Would I have to ask the school to do this?

 

Thanks for all the advice everyone!

[Chloes mum]

Hi

The 'home-school' link book is not similar to being statemented, it is more of a diary that the teachers write in every day so that we know what type of a day she has had without having to rely on her letting us know or going in to ask every day! It is really useful as a means of monitoring her behaviour as we can see how many children she's hurt that day or how many meltdowns she's had etc. It also tells us if she's had a good day so we know when to give her lots of praise etc. Chloe isn't statemented (yet) but she does have an IEP and is on school action plus, so we do tend to have regular meetings with the school to discuss progress (or lack of it!!)

Have you tried to claim DLA for your son? You don't need a diagnosis to claim - we claimed for Chloe before her diagnosis was in place, and it was actually her DLA money that paid for the private assessment.

[Lilypad]

I am in the process of applying (as in filling out the form) As it is such a long form, I am filling in a couple of pages a day. I also posted a query about claiming DLA on this forum as it had been recommended that I do so by my advisor at the Jobcentre Plus. I have been given alot of helpful advice from users on this forum about claiming DLA. Thanks, I will see how the claim goes and then maybe look into private assessment.

It is probably worth me asking the school about them keeping some kind of link book like you mentioned too...that might also help with my DLA claim.

[wendy28]

Hi Lilypad

 

Have you tried going back to your GP, just let them know how bad things can be & maybe he can get you through to see someone. We were lucky as we had our son diagnosed just before his 3rd birthday - but have to admit I had to badger my HV for ages, & had to wait a good 12 mths before we got an appointment. It's still been a fight from there on though, I wish I could tell you it'll get easier!

 

Best Wishes

Wendy

xxxxxxxx

[sinai]

Thanks for the replies.

It's really complicated with my son. Changing routine doesn't usually bother him - like I said, we only sometimes go to the shop on the way home. But I think if he has a tough time at school during the day, it can change his moods. It's very hard to know what happens at school though because he really doesn't tell me alot and his conversations are very limited. I don't want to be one of those annoying parents who go to see the headteacher every day either!

A family therapist and psychologist from a CAMHS - type organisation recommended using visual aids for my son as he finds it hard to understand verbal instructions etc. But, I don't really know what they mean by this. They haven't really explained alot to me and I feel that because he doesn't have any diagnosed problems, I am unable to get help or support with things like visual aids.

 

As for not worrying about what other people think, it's funny because I feel like I should explain to people that it's not his fault that he behaves like that and I even told the shop assistant that "he has problems"

 

Thank you anyway, I will have a look at that link you posted

[sinai]

hi

you could use a visual timetable, these are quite simple to make, all you need to do for example is look at your days routine ie you walk to school so get a photo of your child walking to school, then a photo of school, a photo of him walking home and a picture of home, then use velcro and put first next next next and put the photos onto a lamanated paper.this gives the child a visual schedule of the day he has, of course you can use them for anything and in more detail if you like, these are very useful, and do work and help to take the stress out of a day as the child knows exactly what they are doing. hope this helps.