KNEW I WAS RIGHT WISH I WAS WRONG

[MARGOT10]

HI,MYSELF AND DAUGHTER ATTENDED SOCIAL WORKER/case worker today to find out results of school assessments and play sessions and they are of the opinion my daughter is on the spectrum.

They are next going to do a computer analisis which I dont quite understand but they said they would not be doing it they didnt feel she is on the spectrum.since she was 3 i have been saying there is something wrong and now i feel like i have been hit with a brick cos people in the know feel the same.Her school observation was terrible she totally lacked social skills although wanted to play,was very dominant at one point the teacher asked the children to tidy up my daughter went and sat in the teachers chair and told the others what to do,she would not follow instructions,they did not believe she would be able to follow instructions or work alone.There is play sessions set up with a lady who specalises in autistism to teach her social skills.I think what this computer thing does is assesses the degree of severity.The play sessions with social worker were a flop as my daughter would not talk out of her line of interest.

Now im scared as when i broached the social worker about me restarting teaching the social skills he said it would be a mamouth job for me to do unaided as her social skills are so stunted,as are her empathy ,and receprocy.

Anybody help this feels abit surreal,i thought I would be ok but i dont know what it is i feel but i dont feel ok.thankyou

[oracle]

Now im scared as when i broached the social worker about me restarting teaching the social skills he said it would be a mamouth job for me to do unaided as her social skills are so stunted,as are her empathy ,and receprocy.

Anybody help this feels abit surreal,i thought I would be ok but i dont know what it is i feel but i dont feel ok.thankyou

 

What on earth does the Social Worker mean? It's amazing how some professionals can not quite grasp that parents are probably the best people to teach social skills and interaction. Yes you may need some pointers and there are books and packages that you can buy into if you so wish but there is lots that you can do yourself.

 

We do lots of emotional litereacy with our two and this is also a biggy in schools now for NT children as is social skills. The difference is that with our kids you do not teach it for a few weeks and hope they understood. It's something that you teach all of the time. We also do connective education so that the boys understand themselves and their autism. If they understand themselves then you have more chance of them being able to fill in the social blanks as they grow older.

 

The other night we spent two hours doing mime. It's a brilliant way to teach non verbal communication and it enable the child to understand non verbal communications in social interaction.

 

There are social skills groups for our children in some areas. However many only run for a few months, which in my opnion is of little use to them. It needs to be on-going.

 

A computer assessment may or may not be able to assess the severity of the ASD? But kids with ASD are just like all other kids - they can and do change - and that means their levels of ASD do to.

 

Carole

[Viper]

Margot, first thing you have to do is sit down pat yourself on the back and take a good deep breath.

 

You did it, you stuck to your guns and got things moving. You did it for your daughters sake. I know how hard it hits you I had similar news a couple of weeks ago, and even though you knew deep down it still hits you hard when you hear it from an expert.

 

As I was told this changes nothing about your daughter, she is still the same little person you love. All it changes is the fact you will get what she needs and that can only improve things for you all. You may still have a fight on your hands with various "professionals" but at least now you have a name or "label" to put on that fight, you know what it's all for.

 

Give yourself time to take it in. I'll be thinking of you.

 

Viper.

[denise2]

Hi Margot, it's a horrible feelinng isn't it. You don't know wether to laugh or cry. All I can say is that in the last 2 years since my son's diagnosis he has come on leaps and bounds. He still has many impairments but through knowledge from forums, books, supporters etc. we have started to learn to understand him for the first time. We now know a lot of the behaviour triggers and we have learnt that he has sensory problems which means that he's not just being difficult he really can't cope with the noise, smells etc. Our son no longer goes to school due to the high level of problems it caused both him and us. He was also disruptive when he was there and would behave very inappropriatly during lessons.

 

I do however think it is very sad that you have been given left feeling so negative about your daughter and her future. Our children are hard work but they can also be rewarding. My son gives us such a different view on the world, andshows much empathy even though school said he couldn't do this. He is still very selfish and often cannot see other peoples point of view while in the middle of situations, but the empathy does come later when he has calmed down and he is able to think clearly and we can talk things through.

 

Our son also had terrible social skills when he was at school, but during the days when it's quiet I have played games with him, taken him to cafes and had friends round the house and he is slowly acquiring them.

 

I can only go by my son, and I appreciate I don't know your daughter and all children are different, but there is a lot we can do for our children, just take your lead from her and if things get too stressful don't be scared to stop things and try later, our son has quite a short attention span, and gets distressed quite quickly but he has learnt social skills in small doses. It is a mamouth job, but just start small, everything has to start somewhere.

 

Good Luck

 

Denise 2

[MARGOT10]

viper and all,thankyou I dont think my social worker was trying to offend.I had also asked about time management with my daughter as she wants everything now and goes on on you cant say wait to her.I think he was more one step at time while i was thinking we need to work on waiting,social skills,getting her to talk with instead of at you,getting her to talk about things other than her,all in one go but thats not going to happen.What upset me most was the school observation she was appauling and just didnt seem to be coping and the teacher said nothing to indicate this,she was quite aggressive in her methods and i was not aware.

At the moment I cant think where or how to start my mind is racing,I know the symptoms but dont understand her thought patterns,dont know how to start.social worker was good though he said when he books bobbies my daughters play sessions with autism specialist he will see me to evaluate what I need to support her.I want to cry but tears wont come god this is surreal.with love to all who help

[oracle]

One thing at a time is a good approach because many of our children simply can not multi-task. You also have a great deal to take in right now so give yourself a break and some timeout every now and then.

 

As for waiting we use a stop watch with a bleep. We set it and then we wait and it's not open to discussion. I was surprised at how ell this works and it can also be used to end a task or session. We home ed and we did have time management issues. One of the first things we did was taught Matthew to read the time. Not so much the time as how time is measured. He gained so much from this as it has given him some control over something he had no concept of at all.

 

Talking at you is an issue we have to this day when our two are excited or stressed. With Matthew we used an old drama technic to promote turn taking in conversations. It involves a microphone, we made one, and the person with the mic is the person talking. When you pass over the mic then it's the other persons turn to talk. We make a game of this and to this day still play it and again Matthew has gained a great deal from it.

 

We also often start with a topic that Matthew likes, even if that is himself and then using other things that he likes to talk about we steer him away from his original subject. It can be hard but again we have had some good results.

 

When we are out I make a point of explaining how we behave in different places. It does not always work but I have found it worth doing.

 

All these things take time and need working on all of the time. The best way we have found is to make things as fun as possible.

 

take care

 

Carole

[Brook]

Hi Margot,

 

I know you must be feeling very overwhelmed at the moment. You have alot of different emotions to contend with, and I think I would be right in saying that this is very very normal, I certainly can speak for myself there anyway.

 

The first thing I did was to get myself a book, I actually read a Lorna Wing book.

I initially needed to seek info on what ASD was, as although I had heard of it and suspected very strongly, I soon realised that I did not know much at all.

This enabled me to start to understand some of the things that my son did or did not do.

 

I would say try to take things one step at a time, I know its easy to say, as you want to seek as many answers as possible, but it will only make your head spin.

 

Give yourself a breather, I know how it can fill your every waking moment, but things will become clearer.

 

Take care

 

Brook

[MARGOT10]

Sorry to go on,but my head is still spinning when you suspect autism you dont think its that bad,but when you hear you are right it seems overwhelming.Now im concerned because a friend said that when a child with autism hits puberty they can start having fits.Iam so confused when i thought she had it i knew alot but now i know she has it i know nothing.

[Viper]

Margot.

 

Personaly I have never heard of this. I have read lots of books and never read anyhing about fits due to Autism.

 

If you have any more questions I think it would be beter for you to put them under a new topic as more people will look at a new one than one they have already posted on.

 

Viper.

[oracle]

Yes some kids with ASD do begin to have fits when they begin puberty but by no means all. And fits can hit anyone at any age ASD or not. I am 48 and am being tested for epilepsy with no history of anything like this before.

 

Carole

Edited August 3, 2005 by carole