don't know what to do

[cattubb]

hello all,

 

i just wanted to have a moan to some people who understand where i'm coming from.

 

My son Charlie is 4 1/2 and my daughter , Lizzie is 2 1/2.

 

Charlie was referred to the ed-phsycologist last December after his nursery teachers had noticed unusual behaviour and lack of interaction with his peers etc etc. We are at the moment awaiting an appointment with the complex needs team. I was having a lot of doubts as to whether he has an ASD but during the last month or 2 he has taken a massive turn for the worse. He has become very violent especially with me and my daughter he bites, kicks, punches and scratches. He is having at least 2 tantrums a day (always violent, usually over something extremily trivial, well trivial to me anyway). He barks, yaps, roars and screams spontaniously and it seems like a stress relief thing. He totally absorbs himself in the t.v. and you can't talk to him because he blanks off then when the ad break comes on he works himself into a frenzy throwing things round the lounge. He wont wear denim, can't abide labels in his clothes does'nt like hugs 'because they hurt his body' and can't stand the sound of kitchen appliances. He also can't bear another child to touch him. we were at a playzone yesterday (i thought i'd be brave and take him out ha ha) and a baby of about 1 touched him so he pushed it violently down a slide, i was absoloutly mortified but luckily the baby's mum was REALLY understanding, i took him out which resulted in a massive tantrum and Charlie smacked me across the face .Charlie is highly intelligent and questions EVERYTHING.

 

I really don't know what to do. I can't take the kids out on my own and we've now got the whole summer hols ahead of us. Its so frustrating that theres nothing i can do except wait for Charlie's appointment to come through. I also can't believe that i ever doubted whether he has an ASD!

 

I'm sorry to moan but i'm at my wits end.

 

Cattubb.

[Clare63]

Cattubb,

We all know and understand how hard it is, especially so, when we seem to be just left to get on with it by the some called proffessionals. Charlie does seem to be suffering from sensory over load and his behaviour is no doubt his way of dealing with it and a result of the confussion and discomfort he feels in not being able to control his feelings and emotions. Hopefully once you get a dx the help and support will be forthcoming, in the meantime you may wish to contact your Gp to explain what is happening and to ask for a referal to CAMHS to speed up the dx process and help in the short term with some of the behavioural issues, the violence is obviously the most difficult to deal with particularly as your daughter is so young and you as his Mum should not have to take being slapped.

Remember you are not alone on here, and I am sure the others will have loads of useful advice for you.

Take care <'> <'> <'>

Clare x x x

[JsMum]

Hi charlies mum

 

Was playzone busy, noisy, crowded, hectic? in our area we have a group that uses places like playzone at quiter times and only for the children in this group so its exclusive to them and where the staff have experience with children who may communicate in a behavioural way, kicking, biting, hitting, its all part of the frustration and it doesnt matter how intellegent our children are,if they have difficulties expressing how they feel it results in overload and meltdown behaviours.

 

I would contact a few of these if they are in your area,

 

contact a family now have support workers working with families with special needs though they are only in certain areas of the uk but they do have a lot of information on what support you could be entitled to and they have been very supportive in helping me cope with my son who is showing increasingly scarey signs of aggression throw frustration.

 

We have started to use symbols and sign to help him communicate, and visual timetables so he has a routine even in the holidays.

 

There may be other services that you could access like

 

HOMESTART

SURESTART

PORTAGE

 

I would strongly advise you to request an assessment of need on your son too as he may be entitled to some sessional work and possible respite to give you an oportunity to spend time with your youngest and they might be able to refer your son onto other organisations or kids clubs designed for kids with special needs and even though it may put you off going to social services this is where you need to be to request an assessment, we now have a social worker and a sessional worker for J, this was only after complaints to the top mind you because they kept saying J didnt meet the criteria so you may need to fight a little but it is worth it in the end.

 

The National Autistic Society have a helpline also who are great for support and there is local support groups for parents so you may get some more insight into how a child may behave with An ASD because a lot of people have preconsieved ideas of how a child with Autism behaves.

 

Your local childrens services may also know of more groups that are gathering during the holiday or the library are also a useful place to try as well and they can at least post the information in the post.

 

Its really sad in this world that a lot of families are left to get on with it with no support and I think that is because each service presume that other resources are supporting the family when they are not, pass it onto CAHMS when you see them that you where without support over the holidays too.

 

Over the next few weeks could you use the time to gather some video coverage of his increasingly aggressive behaviour, also keep a diary too and write in the places where your son is the most destressed as in hittting out and having a meltdown, I would include his diet as well because with J his diet is the reason J has been really aggressive as he has food difficulties and gets hypoglicemic and his diet is all part of his ASD so its all part and parcel of his difficulties, at the moment for J the late evenings are the most difficult as he isnt settling until gone 2am so its all a bit topsy tervy here, but we are getting there.

 

Some childrens books looking at anger may help him too, J has had anger management when he was 5yrs old because of his aggressive behaviour and this was down to not understanding anger, and his lack of communication and expressions in verbal so we had to help him understand with pictures and looking at different feelings and how we can manage our emotions, this was offered by our local univercity that supported families using students doing psychology.

 

Then he did some more courses with cahms but this was mainly aimed at Js ADHD.

 

when I look back 4 years old was a really roller coaster of a ride and J had no diagnosis at all just severe behaviorual difficulties, the fact you have some understanding to a maybe why then you can work with this and put in place some of the stratagies that help our children this being, symbols, signing, visual timetables, anger management, emotional awarenes, parent support groups and resources that support children with special needs.

 

Let me know if any of the services have prooved helpful and I hope that there is a group that gets together and uses playzones and similair as in our area they book these and so its only for children in there who have similair difficulties so do check out to see if there is something like this in your area.

 

Good Luck and come back if you need another rant but I like to call it sharing, but you know where we are, see you soon.

 

JsMum

Edited July 29, 2007 by JsMum

[Suze]

Some fab replies already...........just wanted to add a few hugs <'> <'> , and a few other ideas........a brill book by Olga Bogdashina, about sensory overload.My son also has alot of sensory issues and this book was a really good find.The tv thing........could be best to let him watch dvd,s then he controls the stopping and starting.I found with my son when he had tough times (in school hols etc when routine changed) that keeping stuff as un complicated as pos heled...ie he always wears very similar clothes every day.........we talk about what meals he wants, what is going to happen that day when he wakes that morning.My son also enjoyed using ear defenders when he was youngeras he hated noises .

[Bard]

You've had some very good suggestions, all I can do is agree!

Mine's 12, and I would definitely go with the DVD suggestion, low stress, wearing easy clothing. G is living in his scout trousers and cheap, soft T-shirts. All the labels are cut out!

We have a menu list for dinner, and he's still eating a school packed lunch every day at around 1pm, in his lunchbox.

2 other points. Boys at around 4-5 get a sudden extra surge of testosterone, with changes in behaviour linked to it. Many boys lose the plot and become very physical at this stage. Combined with possible ASD it makes an explosive mixture!

And the poor little baby. With B, it used to make little difference, the age of the individual that annoyed/touched/shouted at him. He would punch, shove or push them out of his space. Only one hit, he didn't keep attacking them. You saw a baby, B would just have seen an irritation that he wanted out of his space.

Now he's older, he distinguishes better. His self-control has grown and he is very careful with babies, and small children around 5 or less. Anything over that, however, and the response is still BANG!

Even when the individual is 16 and 6'.

Perhaps you can think of places that you can go that are quieter and less crowded, where he can run or destress without anyone else being ' in the way'. Mine can run for a mile on the Downs when he's unleashed and free!

[JsMum]

He totally absorbs himself in the t.v. and you can't talk to him because he blanks off.

 

 

J still does this and it was investigated as it can also be a sign of early epilepsy, so I would request a referral especailly with the aggression inceasing, Js was put down to withdrawing from his surroundings and related to ASD, sesory overload is a really disabiltating so J tunes out at times, but I would double check that the blanking out is not epilepsy.

 

Another books sorry guys but its just that its a clever/fantastic book and was suggested by a member here, and most of you know what book I am going to recommend but its just so relevent here, is The Out of Syncs Child, and there is another one to go with it called The out of syncs child has fun with loads of useful ideas to help the child cope with high or low stimuli.

 

A lot of the verbal sounds he is making the squarking, the roaring is a way of him been in control of his surroundings but this book goes into this more detail...

 

JsMum

[cattubb]

Thanks everyone so much for your tips, i'm going to read back over them when the kids are in bed as theres a lot to take in.

 

I haven't been on here much before and i find it really touching that you would all take the time out to give me such good advice!

 

Cattubb

[Alyth_mum]

My children react to temperature - if they get physically overheated they are more likely to suffer from melt down.

 

I try always to havee cartons/bottles of drink available and tell my children to run their forearms under the cold tap if they feel very hot.

The veins are very close to the skin surface there so it cools you down relatively quickly.

 

It is very hard work when your child/ren react like this. <'>

 

Louise

[Bard]

I haven't been on here much before and i find it really touching that you would all take the time out to give me such good advice!

 

Cattubb

 

It isn't time out, sweetheart, most of us are in the same boat!

Sharing ideas, suggestions and strategies is one of the reasons that this forum is so wonderful.

Another reason is the amount of sympathy, understanding and virtual chocolate that gets offered in times of crisis. <'> <'> <'> <'>

[Mumble]

Did you say chocolate? Mmm

[Bard]

Did you say chocolate? Mmm

 

So ASDs have little empathy, but fantastic telepathy?

[Alyth_mum]

So ASDs have little empathy, but fantastic telepathy?

 

Yes I have noticed that Mumbles does a great Magic Act everytime anyone mentions any food.

Question is will she react to Marmite ?

 

Louise

[Mumble]

So ASDs have little empathy, but fantastic telepathy?

Was that a joke Bard? I do have very little empathy according to my assessment scores (I come off the bottom of the scores they use being >3sd below the norm) and my inability to properly process, particularly in the moment, what people are thinking and feeling by what they say or how they react or the facial contortions they make does cause me significant difficulties as people think I'm purposely being arrogant, difficult, uncommunicative, uncaring and any other negative word you care to use. This is simply not the case and it does upset me that I get these things wrong so much of the time. I want to be able to understand people, I want to have friends and to converse with people on a social as well as academic level, but it is so damn difficult when you are all essentially using a language that I at times cannot even access and when I can access it, can't understand. I'm sorry if I've upset anyone by not being empathetic enough but I really didn't have any response to the topic raised here - I'm not a parent and I don't know what you are experiencing.

 

Oh, and marmite's ok, but not in cakes.

[Bard]

Was that a joke Bard? I do have very little empathy according to my assessment scores (I come off the bottom of the scores they use being >3sd below the norm) and my inability to properly process, particularly in the moment, what people are thinking and feeling by what they say or how they react or the facial contortions they make does cause me significant difficulties as people think I'm purposely being arrogant, difficult, uncommunicative, uncaring and any other negative word you care to use. This is simply not the case and it does upset me that I get these things wrong so much of the time. I want to be able to understand people, I want to have friends and to converse with people on a social as well as academic level, but it is so damn difficult when you are all essentially using a language that I at times cannot even access and when I can access it, can't understand. I'm sorry if I've upset anyone by not being empathetic enough but I really didn't have any response to the topic raised here - I'm not a parent and I don't know what you are experiencing.

 

Oh, and marmite's ok, but not in cakes.

 

 

It was a joke, Mumble. I would never intentionally direct an unkind and upsetting comment at you! <'>

I was just amazed that for the second time, within minutes of posting, that you had responded positively to the mention of munchies. It was as if you are able to pick up words such as chocolate, picnic and donuts from the ether, and locate their origin. Telepathy, hearing words that aren't spoken.

It is a skill you share with B, and my mother. She can sleep through the sound of the alarm clock, or the famous hurricane, but not the sound of someone putting the kettle on.

I use marmite in my stews and lentil bakes. No one else in my family can stand it.

Edited July 30, 2007 by Bard

[cattubb]

Morning everyone,

 

Just to let you all know that after all the advice and support yesterday i decided to take Charlie to my GP today. He totally flipped out in the surgery which was bad for him but in a way i was glad because the doc saw what he was like. Anyway, the doc is going to phone our Complex Needs team and also our local CALMHS (is that how you spell it?) team. If there is no luck he is going to get me to see a new paedeatrician at the hospital who is apparently brill with this sort of thing. He wants to make sure i see some one this week!

 

So, today is a better day already (and its sunny, for once!)

 

Cattubb

[Alyth_mum]

It's not fun when your child does something like that in public BUT it can work to your advantage sometimes - lets face it if he hadn't blown at GP's how fast/urgent do you think his referral would be treated.

 

(All my GP staff know mine far too well - especially my DD ; she has a rather loud scream)

[Suze]

We,ve been to the docs today too........for a melatonin update(has trouble sleeping), my son is 12 now and things do change as they get older , when he was 5 he would have had a meltdown too in the waiting room.Today he fiddled with a slinky and made some very odd noises.I,ve discovered that the odd noises are a way of self stimulation as he is hypo sensitive to noise.My son was like yours at the same age, I stopped going to the in-door play areas and playgrounds, it was too over stimulating.He hated the motion of bodies moving everywhere and the noise.I found the best places to go were the airport viewing park, as he loved planes,and museums as he had an interest in machinery.

When you see the pead ask about doi ng a sensory profile............it may indicate his areas of difficulty.It helped me understand my son.

[Clare63]

Morning Cattub,

 

Sounds like you've got a good GP there and that he's going to get the ball rolling for you. I know it difficult when our children "meltdown" and you feel so helpless but like you say a good thing for the doctor to experience. Our CAMHS stands for Child & Adolesent Mental Health Services. If you can get to see a paedeatrician who specialises in ASD's that would be excellent.

 

All this is great news and a big step forward and as you say the sun is shining !!!!!

 

Here's to a lovely day.

 

Clare x x x

[smiley]

Hello <'>

 

Great that the GP is pushing things along for you, a supportive GP is a god-send.

 

Sounds like he has refered you to Child and Adolecent Mental Health Services (CAMHS).

I can't find the link directly to camhs right now - but this link gives a good description of who they are

http://www.youngminds.org.uk/camhs/

 

Another one who may be able to help pretty quickly (whilst the CAMHS and peadiatrician do their thing!) is Portage. Your son is 4 and a half? It's mainly for pre-school aged children - but can give you some fantastic strategies and ideas for making life easier, with or without a diagnosis - in my area, parents are able to refer themselves - not sure if that is the same for every area. May be worth phoning either your GP or health visitor - who will have all the info on Portage - and asking them to refer you.

http://www.portage.org.uk/ (Under 'About Portage' - you can select your area.)

 

Hope this helps - <'>