Behaviour in non ASD siblings

[joybed]

Hi my 2 boys both have ASD and as you can guess at times in our house it is complete chaos. They are very similar but also very different, have an 8 year age gap and all this leads to them playing nicely one minute then fighting the next. Neither of them knows when to stop.

My question really relates to their sister. She is NT and on the whole a lovely, helpful, bright and loving girl. She instinctively knows her brothers need her help and on the whole accepts their differences (and aggressive behaviour from Piers) very well. However just lately we have had problems with her being cheeky, stubborn, being awkward especially when the boys are being stubborn and generally attention seeking. I know a lot of this is her age and finding her feet at school and testing the boundaries, but i am also sure much of it is that she sees her brothers behaviours and that they get attention and she thinks I,ll have some of that (as I said she is clever). How do I deal with her behaviours in a way that makes her feel loved and valued. Obviously I discipline the boys but they respond differently to Lydia and I don,t want her feeling things are different for her.

Also i have noticed she copies some of their behaviours. This was very apparent the other night. we had been to a support group meeting and one of the boys was squeeling in a high pitched way, Lydia is now squeeling at everything and its driving me nuts. Neither of my boys squeel, Marcus makes noises and Piers Hums, but squeeling really annoys me.

Not really sure if I have worded this properly to get the answer i need but hopefully you will know what I mean. I have bought her book aimed at her age to explain her brothers ASD hopefully this will help her. She is a very shy/ sensitive girl who can become quite anxious herself, she wet the bed last night so obviously she is worried about something.

[Kazzen161]

but squeeling really annoys me.

 

I would guess that is why she is squealing - it is a way of getting your attention. If it is something you cannot bear, then you are more likely to respond. The best way to get her to stop, is to ignore it, and only talk to her when she is not squealing.

 

They say that children want attention, and if they can't get it in a positive way, then getting it in a negative way is better than nothing. Try to give her attention when she is behaving well. Try to spend time with her on her own (if you can).

 

I know it is hard, my middle son still thinks he never gets enough attention, and he is quite an independent child.

[Sally44]

I think you need to set aside some time to spend with her alone and also get her involved in something outside of the family home eg. some type of club or activity etc. And I think you also need to explain why you have a higher threshold for her brothers behaviours that you do for hers. Try to be as consistent as you can. You may need to handle the behaviours in your sons differently, however the bottom line is that if their behaviour is inappropriate then they should know that as well and your daughter should be seeing that you are saying that. I try to be as fair as I can with my son and daughter. Make sure you notice and reward her good behaviour.

You might also consider whether she does infact have any ASD traits? I just wanted to put the question out there for you to consider. If that is not a possibility at all okay. My daughter also copies my son sometimes and I just tell her not to do it because she doesn't need to do that. Sometimes she does it infront of him and I think she does it as a behaviour that her brother will understand. I too have done the same sometimes eg. if he is making alot of noise I have covered my ears and he immediately recognises that he does that himself and understands that he is making too much noise for me to tolerate. Can you distinguish whether she is using the behaviour as a way of reflecting it back to her brothers, or is it just trying it on?

[bid]

I remember when my girlies were little on occasion we had to say to them that they didn't 'need' to do what their big brother did, because they didn't have AS...to be honest, this varied from being said in a very kind way to quite sharply depending on how annoying the thing was/how tired we were/how long it had been going on!!

 

We had always talked about their brother having special needs from when they were tiny, because we had no choice as his behaviour was so extreme. I remember that when they were about nursery age we explained that although he was a big boy on the outside he was like a little boy on the inside which was why he got upset and made funny noises, etc.

 

On a lighter note, quite recently he collected his little brother from school, whilst sporting a mohawk. One of Littlest's friends said 'Why has your brother got funny hair?' To which came the indignant reply 'It's not his fault, he's got special needs!!' In case you're wondering about A's delicate sensibilities he relayed this to me in great high humour

 

Good luck, Joy...it's a tricky balance sometimes, isn't it

 

Bid

[NobbyNobbs]

i would find an activity you and your daughter can do which is completely outside of the ASD world and doesn't involve your sons (and they're unlikely to want to do!). that way her life doesn't have to all be about ASD. as she gets older she'll understand that her brothers have different rules for a reason, but for now giving her some space is probably the best available option. can you get her into some after school clubs too? at 5 she can be in rainbows i believe, at 6 she could join beavers.. or there might be a swimming class, or drama class that you can get her into for very little money. if you have contact with SS already, there is a voucher scheme for children to have activities for free, she might be eligable for that. you could also look up local young carers groups, they often have activity days.

[call me jaded]

I have a 'behaviour contract' with each of my children about what they are expected to do and how to behave. It's unwritten but involves some discussion about what each child is capable of. It's about everyone doing their best as far as they are able. Everyone who doesn't make the grade gets a withdrawal of prileges of some kind. I think it helps the others to see that some behaviour is unacceptable no matter who you are.

 

I would ignore the squeal and focus on rewarding good behaviour. If you do respond children will push those buttons again and again.

[Diane]

Hi Joybed,

 

You need to find time to spend time with your daughter doing something she is interested in that does not involve the boys in anyway.

 

You could try and arrange a special time once a week and then anything else that happens is a bonus.

 

My daughter ended up having councelling from CAMHS as we did not recognise fully the effect that living in a home with sibling who is on the spectrum was having on her.

 

It was hard teaching our son that our daughter needed time with just her mum it was a long haul but now I just say to him girly time and he understands.

 

Our daughter is happy and coping and not afraid to express her frustration to us about her brother. Life is much better all round because of this.

[joybed]

HI all and thanks for your replies. Lydia allready goes swimming but unfortunately i have to take Piers with me as well as I don,t have childcare. He sits on the balcony with me while she swims. She is joining rainbows as a lot of her friends go and she really wants to. The problem is she is extremely shy and very clingy. she tried dancing but refused to go after the dance teacher asked parents in to watch, she couldn,t cope with being watched and was meant to be in the show, she got very upset and flatly refused to go anymore. She goes to film club but Piers goes also, wanted to do another club but wouldn,t without me. She is very clingy and follows me around the house, if I leave the room she calls me and becomes upset if I don,t answer immediately. At parties she sits on my knee and rarely joins in until the very end, she is very shy with even people she knows well, neighbours, family etc. DH is also very shy and not a social person at all, I am shy until I get to know someone but am also very social and outgoing when comfortable.

She does have some AS traits she speaks in a monotone and is quite formal and pedantic. She has a good circle of friends but will often totally ignore them if she doesn,t want to speak or if she sees them out of school. She likes routine and has little rituals she carries out. Her eye contact at times is very poor. She is very sound sensitive at a firework display she will be the one grabbing my hands to cover her ears and will be physically shaking, where as the boys just become very loud and giggle innapropriately.

On the whole though she is doing very well at school, is a popular member of the class and joins in well with persuasion. School staff don,t have any concerns about her. I think most of her problems are down to the fact she is so painfully shy and needs much persuasion to be independent, (she asks me to do the simplest of things for her, she will shout me to pass toilet paper which is right next to her, of course i don,t). I also think she really struggles to cope with her brothers and the amount of general chaos in the house.

I try hard to give the children independent time but this is difficult as DH works a lot and i am often alone with the children. They all have seperate story time at bedtime which Piers sticks to but Lydia listens to her story and then comes to Piers room to listen also, Piers doesn,t have a problem with this thankfully. She needs constant love and reassurance which I think she gets in abundance but also anyhting i do with either child will be interrupted by some minor catastrophe, I am often having a 3 way conservation, (none of the children have any concept of turn taking) while trying to prepare a meal. I am off work at the moment so have a little more time with them and generally feel more chilled in myself.

I think her confidence and independence needs boosting but how do you do this in a child that constantly clings to your leg sucking her thumb. I try to encourage her to go and mix but feel like I am pushing her away as she clearly doesn,t want to. At home she is confident and bossy and can hold her own in a fight i just wish she was more like this outside, but obviously in a polite way. Sorry for the long post again.

[Sally44]

Personally, as you have another child with an ASD, and as you have mentioned some traits that your daughter has. Would it be wise to ask for an assessment, especially by a SALT that has experience of ASDs. You may find that her 'shyness' is down to lack of social skills, or social communication difficulties. You say she has poor eye contact, and a monotone voice. You mention she has problems at parties and social get togethers and remains clingy. You also say she is not consistent with her peers ie. ignoring them when she doesn't want or need them. Of course all children can do that to some extent. But the other things you mention do make me wonder.

There was a post in one of the forums (can't remember which one), about girls with ASD and how they are often not diagnosed because their language and social skills are better than boys with the same diagnosis. Obviously I am no professional. But if there are real difficulties she might benefit from some very simple supports that school could put into place.

[joybed]

Sally thankyou for your reply. I agree with everything you are saying and have thought it myself but do not feel ready just yet to ask for an assessment for another child. It took a long time for everyone to recognise Piers problems and during this time i was made to feel like a pushy paranoid parent by school and health professionals, and at times was concerned munchausens by proxy might be mentioned. Also DH has reallly struggled to come to terms with the fact we have another child with ASD and has made comments such as it is only Lydia that keeps me going thank goodness their is nothing wrong with her. Aparently she is the only thing keeping him going or life wouldn,t be worth living. Yes he is suffering from depression and I am trying to persuade him to get help but he doesn,t want to know.

I treat lydia in mostly the same way as i treat the boys, she has a visual timetable just like Piers and I work hard to build her confidence. For the time being all I feel able to do is watch how things pan out. Maybe I am being weak but DH is still in shock from Piers assessment etc and I can,t put added strain on him at this time.

[Sally44]

Maybe it would be helplful to speak with one of the professionals that you have contact with and just say what you have said here that you have have noticed your daughters voice tone and lack of social skills, but feel unable at this stage to take it any further because you are still reeling from your recent diagnosis, but would just like to talk it through with them.

The difficulties you mention sound like the area the Speech and Language Therapist would be involved in. If she is doing okay academically at school, she might only need some help with social interaction. And of course it is quite possible to have traits but not enough of them to get a full diagnosis. But a SALT could do an indepth assessment and check her expressive and receptive language skills. There is also a good on-going monitoring system called SCERTS which all your children might benefit from.

And I know it is a hard time. And everyone deals with it in their own way. My own husband was off sick for over 6 months with stress and anxiety, which he says was down to his work. But in reality it wasn't just work, it was trying to balance home and work which with an ASD child is difficult on the best of days.

You might all benefit from joining a parent support group. I found one that meets once a fortnight at a local community college. The children get to play in the gym on the bouncy castle and trampoline and gym equipment and the parents meet for coffe and cakes. Seeing other parents and also other children was a big help to me because you can get an awful lot of advice from them which is relevant to your local area, and you also see all the different children and see how the older ones are developing. Because our children will also grow and develop. If you consider how severely autistic some children like Donna Williams were and how they have turned out, it gives us a real positive outcome. Afterall our children don't come with a manual. And in reality it took me from when school raised concerns at 4.5 years to now age 8.5 years to actually feel in a comfortable place with his diagnosis, his progress, his schooling etc.

You have to pace yourself for the long term and make sure you take time out for yourself and your partner because it is emotionally draining when you have to keep pushing until you get the support and provision your child needs.

Encourage your husband to go to the doctors. I had post natal depression with both my children. The first one I didn't even know what it was and just kept on until it eventually went of its own accord. With my son I did take medication for around 9 months. It did help me and I got me over it far quicker than the first time. It also helped me deal with the situations that were happening at the time because fortunately the medication made me 'not care' what people were thinking or saying. I personally do not see the point of limping on struggling when something can help. But that is me, and my own husband is also totally against medication. I would happily drop a couple of pills on most evenings along with a glass of wine.

[Sally44]

Regarding being pushy and paranoid. Yes I've come across that too.

I first raised concerns with my son at age 3 when he was spinning alot, repeating what I said back to me, didn't appear to understand English, spoke with an American accent, mixed up pronouns, give totally unrelated answers to questions, had no social skills at all, screaming when people looked at him or touched him etc. And on both occasions the Health Visitor and my GP said that these behaviours were 'normal' and not to worry.

I considered holding him back a year from school because I knew he could not cope - but decided against it because he could not cope at nursery either. School called me in for a 'chat' after 6 months and asked for my consent to refer him to the SALT - the rest is history. I felt very angry for a long time that we had wasted so much time starting the process much later. He was finally diagnosed at 6.5 years and he got his Statement aged 8. And believe me I pushed and fought to get everything through as fast as I could, so I can totally understand parents getting a diagnosis much later on, especially if their child has Aspergers.

My son should have been diagnosed at age 3 and should have started at an appropriate school provision instead of struggling mainstream for years.

He now goes to an Enhanced Resource school which is mixture of mainstream children and SEN children. The school has a specialsm in ASDs. The way I see it I have two more years of putting my feet up, before we start again with Secondary School.

I don't know if anyone has mentioned to you the seminars that the National Autistic Society and the Parent Partnership do. These are called Help Seminars - for the parents of newly diagnosed children. They also have Special Educational Needs Seminars where they explain the SEN process ie. School Action, School Action Plus, Statementing etc. Those are very useful because it is a maze of bureaucracy out there.

[joybed]

Hi Sally thankyou so much for your kind words and excellent advice at this time. I do attend a support group and have done since Marcus diagnosis 8 years ago. I find it very helpful however my husband does not he says we have enough of our own problems and has no interest in discussing other peoples. He has read the odd bit of information but says it is not helpful and just depresses him further. He is supportive in his own way but very much burys his head in the sand.

He expressed concern regarding Lydia this morning. He was left to look after the children last night as I had a night off (went to see Take That yippeee). He picked them up from school and took them out for food. I had arranged for Lydia to go to rainbows, all her friends go and she wanted to go. As the time approached he said she got noticeably quieter and then said she didn,t want to go. He explained to her who would be there and she reluctantly went. He said when they got there he felt really mean as he had to practically drag her from the car and she needed to be carried in. as he attempted to put her down she clung to him like a koala and was reluctant to let go and was sucking her thumb as usual. He said her friends were talking to her and she blanked them. When he picked her up she said she enjoyed it but didn,t know what to do as she didn,t know any of the songs and didn,t know what to do. She said she will go again but doesn,t want the unifrom as it is the wrong colour and trousers (Lydia won,t wear trousers she says only boys wear trousers). She refused to go to a dance class because the uniform was black and not her favourite pink. DH has taken the view that she is too shy and needs pushing to do things so she grows out of it.

As i said she is popular at school and has lots of friends but has also been the victim of I will only play with you because you have a chocolate flavoured lip balm, then the following day didn,t have it girls didn,t want to know her. My concern is if she continues ignoring people her friends are going to lose interest and move on. At a party recently her best friend (supposedly) and her never even spoke Lydia was too shy to approach her and when another friend approached her to play she refused and only went when i sat very close and played also, the minute i moved she stopped playing. I am really not sure if this is just extreme shyness and lack of confidence. I am sure she does understand us.

She is very clever but has started to mess about whilst reading, she was so bad the other night i packed away the game we were playing and tried to talk to her she became very cheeky and refused to acknowledge she had done anything wrong. She lost out on her bedtime story as a penalty for bad behaviour, however when I came out of Piers room she was stood there and said she didn,t care as she had still had a story because she heard Piers. I ignored the comment and put her to bed and spoke about why she had missed her story but all she said was she hadn,t really and continued to be cheeky. I don,t know if she is just attention seeking. She was in a mood last night because i had gone to take that without her.

She also hardly sleeps. Today they are on a school trip, she was excited but wanted me to go. I try to keep home and school seperate for the boys as i find it confuses them if i go into school as i shouldn,t be there IYSWIM , she was upset but accepted this. I don,t know if she is just attention seeking. Why does this parenting stuff have to be so hard.