I have a 15 year old step daughter who came to live with her father and i after her mother could no longer cope with her behaviour. She was diagnosed with ADHD at 7 for which she is medicated. After moving in with us i became concerned that her problems were not all related to her ADHD and after five months got a dual diagnosis of Aspergers also. Gemma has 2 step sisters aged 14 and 15 and 2 birth sisters aged 12 and i am expecting another child so we have a very busy home life which seems to revolve around gemma and dealing with behaviours and constantly negotiating daily tasks. I feel that i have got into a very negative spiral with her and dont seem to be able to modify her behaviour to make it acceptable for us all to live with nothing makes any difference she will not do homework will not flush toilet, wash hands or do any personal hygiene without making a fuss, she has primary nightime enuersis and is wet every night and doesnt seem bothered at all about this and lays in wet sheets. My main problem though is that she is becoming verbally and occasionally physically confrontational with me, i have tried to talk with her about this i am really the only person she will try and communicate with but it is a struggle it turns out that she is angry with me and her father for making her stay at her mums one night a week. She is unbearable at her mothers and we often have her mum on the phone in tears as she is being hurtful swearing and occasionally hitting and kicking her this is having a negative effect on the whole family and gemma says she will only behave for me but i cant be there all the time i need a rest and she needs to maintain the contact with her mum. Im worn out and not sure how much longer i can continue looking after her but if i dont then the only option is foster care
Firstly well done for coping so far. And my hat off to you for managing to get a dual diagnosis. That in itself is often difficult.
Is there any other type of 'respite' care that can be offered other than her staying at her mothers?
I am just wondering because, in an ideal world, we set up these visitational rights etc for the benefit of everyone involved. But for someone on the spectrum these changes may be really throwing her out, and it doesn't sound like your step daughter or her birth mum is getting anything out of it.
I have heard of a good behavioural strategty that is aimed at those with ADHD called 1-2-3 magic. I have heard good things about it. Try to find out about this behavioural system and who can give you advice on how it works. It is something that is appropriate for all the children to use so you won't have different programmes for different kids.
Have you been in touch with social services to see what support there is out there. It isn't fair that you are being pushed to breaking point, but you really are not the only one (if that helps!).
Is there a possibility that there is some Oppositional Behaviour going on as well? What professionals are involved with your step daughter at the moment and have you raised your concerns with them.
Do you think you know enough about ADHD and Aspergers to be able to give advise to the other siblings. For example your step daughter needs to know her boundaries, but the other siblings also need information about ADHD and Aspergers so that they are not pushing her buttons as well.
If there are issues around intrusion/privacy/destroying other childrens things etc it might be that each child needs a lock and key to their bedroom. This will help keep everyones private area 'private' and that includes your step daughter as well. The other siblings may be doing things that are raising her anxiety levels and causing her to lash out.
Are you involved in any parent support groups. I have found these very useful because they usually involve the kids doing something social together and the parents meet in a different room and have a couple of hours peace, or just talk and have coffee, or swop information. I have seen parents come in with a laptop and try to get some work done because they can't get anything done at home!
In the UK there are buddying and mentoring schemes run by social services whereby an older child could go to the cinema (for example) and a 'buddy' would accompany her. This would give you some space and allow her to be more independent.
But I think you need to lay it on the line with the professionals involved that you are at breaking point.
Had to rush out to do the school run!
Regarding the nightime wetting. My understanding is that at nightime the brain secrets a certain hormone that reduces the amount of urine the body produces and therefore that is why we tend not to wet the bed. Have you talked with the GP about this? I don't know if there is any medication that can help with this. But on a lighter note, my husband (who doesn't have anything wrong with him), has wet the bed a number of times since we have been married!
I have an older sister with learning difficulties. But she is capable enough to live on her own and she has a full time job. She would wet herself. Sometimes out in public with me. She wasn't embarrassed about it either. We did manage to reduce it by changing what she was drinking (less tea, coffee, citrus fruit juice). They also introduced a strategy of her going to the toilet about 15 mins before she had to go out of the house, and then going a second time just before she went out. Apparently she had difficulty completely emptying her bladder. Anyway, raise the problem and see what they suggest. My sister also doesn't really care about personal hygiene, and we do have to chase her up on that frequently. Children and adults with autism/aspergers don't always seen the outcome of their behaviour. For example, I heard a story of a university student who had been told to change her bedding every week, which she did. After a couple of weeks she got herself very anxious and upset because she didn't have any new sheets left. But no-one had told her that she had to take the dirty sheets to the laundry, or had shown her how to use a washing machine. So you need to explain the whole process through from beginning to end so that they understand. Don't assume they will make the connection because they won't.
Another point about the bed wetting. Does she have any sensory issues at all. The reason I ask is that 'understanding when you need the toilet' is also a sensory thing. Some children/adults with autim/aspergers do not 'feel the sensation' of needing the toilet or needing to eat or drink. Or they are hypersensitive and always seem to need the toilet, always seem hungry always seem thirsty (or they fluctuate between the two).
If you do try the 1-2-3 magic, get the birth mum in on the training because consistency is crucial.
If you need a break can her dad take her out, or you go out with the other kids and he stays at home with her? It quite frequently happens that I am with my son (who has autism) and my daughter goes with her dad. If we all go out together sometimes it works, but usually he has a tantrum about something and it threatens to ruin the day for everyone. When that happens I tend to stay with him (I have more patience!) and I tell my husband to continue with my daughter, so that at least she doesn't have her day ruined. Don't try to do the 'whole family out together thing' if it really doesn't work, it will just raise your stress levels and give everyone grief.
Thank you so much for spending the time to answer me and in such depth it is incredible helpful and also reassuring to know that other people have the same problems and we are not alone with this. Things have changed since yesterday even! We decided last night that we would stop visits to her mothers as it was too stressful for all of us so we are hoping that we will see a big improvement in behaviour and in the mean time my father has offered to have gemma for tea once a fortnight so michael and i get one evening to be together. We have social services involved and child mental health but we just keep getting fobbed off and told were doing a really good job! It doesnt feel like it. We have been offered respite care after me packing my bags and walking out but this is going to take months to sort out as they have no one in our area and have to recruit.
As for bed wetting gemma has been on several different meds and none have helped and the bed wetting clinic have said they can no longer help as it is psychological so we have an appointment at the Gps next week as we are not happy with this. You were also right gemma has very dulled senses this causing issues other than not caring about laying in urine soaked sheets she seeks sensory thrills which can lead to dangerous situations such as climbing out of her bedroom window onto a pitched roof and such like dangerous behaviour. I would love to be able to go to support groups but we live in a rural area and not much is avaliable.
Its quite interesting that you know about family days out the older girls know it will end in disaster before we have even left the house if there isnt a problem with one of the girls their father and i argue because of the stress of it all and just trying to keep eveyone happy we have decided to no longer do it.
Im going to look up the 1-2-3 magic it sounds hopeful.
I have another question if thats ok?
Gemma steals from everyone she steals food from the cupboards money from my purse things from her sisters, school, family and friends houses and shoplifts ( she no longer gets the opportunity for this as she isnt allowed out unsupervised). I dont know what to do as nothing seems to stop her.
I think that question is one to pass over to a clinical psychologist or similar. Sometimes children on the spectrum just don't understand these rules and that something belongs to someone else, or belongs to the shop until you buy it. I have just got back from a shopping trip with my son and it always ends the same way. Before we got out I tell them that I do not have money to buy him any toys. He can look at the toys, but he must not ask me to buy them. He always agrees and promises, but as soon as we are in the store the persistant pestering starts. Then he starts getting upset and telling me that I am rubbish etc or that I lied to him. I don't want to have a full blown tantrum in the middle of the supermarket, so I'm just trying to get it done as quick as possible. I gave him three warnings, and he is now upstairs in his room because he didn't stop pestering me. Arghhhhhh!!!
As far as providing services goes I think you have to lay it on the line. If you continue to cope you won't get help. If the respite care doesn't appear some time soon, then you can always call their bluff about fostering. Then, from a budget point of view, it is cheaper for them to provide respite care than for them to have to keep your step daughter in a childrens home or in foster care. It's horrible that you get to that stage but it is the only thing that seems to make them understand that you are at the end of your tether.
A good idea that other family members are helping out. If you can get a few people on board, who will have her maybe once a fortnight.
Also try to find out about mentoring/buddying. But I think you need some input regarding the stealing etc before she goes out with anyone, otherwise you'll just get a phone call from the police because she's been caught shop lifting!
For the sensory stuff I would involve an OT who has experience of autism and sensory integration issues. Apart from that keep all windows/doors locked and don't let her see where you keep the keys.
If she seeks all kinds of movement sensation, have you tried a trampoline? For inside the house you could have a small exercise trampette.
If she has alot of sensory issues a book by Olga Bogdashina called Sensory and Perceptual Differences in Autism and Aspergers has a questionnaire at the back that you can complete to get a profile of your daughters sensory issues. This checklist is used in our City by the autism outreach department and they ask parents to complete it. I have done this for my son and have found that he has sensory difficulties in all of his senses, but his main problem areas are auditory and tactile. For your stepdaughter it might turn out to be proprioceptive or vestibular senses that are worst affected. But once you know that then their behaviour begins to make sense and you can then find ways to address it.
I wish i had somewhere near your knowledge. Its so terrible that the help is out there but it all comes down to money and budgets. Gemma was seeing an OT and we did fill in a questionaire that highlighted her tactile, visual, smell, and taste senses being hypo if thats the right one for under sensitive, once she ate 300g of rock salt in a week i had to have her sodium levels checked twice then a month later she did the same i think i will give it another 6 months and i will have to have a locked kitchen cupboard its not that i want to live like that but it appears to becoming necessary.
She constantly appears to be seeking thrills we have tried to help her with this and she now goes to one inclusive sports club with one to one support and also riding for the disabled once a week which she loves also a social club for young adults with social difficulties when michael and i took her for the first time he was teriffied and felt that it was not the place for gemma how wrong he was its her favorite night of the week and she just fits in and i have never seen her so happy and not once has she got into any trouble.
I really feel for you over the shopping thing with your son i have witnessed gemma in full tantrum in tesco before she came to live with us i actually heard her before i saw her, so i was lucky to be in the position to have never bought her anything and have told her i never will and she seems to accept the that i dont even let her pick any food to go in the trolley we go with the list and that is it. She does have tantrums out with me but im pretty good at picking up the vibes its about to happen and have also gone back to alot of my parenting skills i used with my girls when they were alot younger like 15,10,and 5 minute warnigs before we have to stop doing something she is enjoying but i do get strange looks when a perfectly normal teenager starts screaming like a toddler refusing to move or kicking but that really doesnt bother me as the people around me are strangers who i probably wont see again, what is more difficult to deal with is inappropiate sexual conversations in crowded places such as waiting rooms i learnt very quickly there is no changing subject so we have to leave and let the receptionist know on the way out were in the car park!
Its just all so new to me and we have only been married since last october and Michael is away alot with his job so i have to cope alone. I am worried about having another child and how i will cope but i have no choice i just have to. My only concern that if he also has a disability as two of our other daughters are on the spectrum but just with very mild problems is that we wont get the support. Our eldest daughter the other day commented on how tight money seemed in the house and i replied we may be poor financially but were rich in children and thats what i have always wanted she left the room smiling!
I think anyone with a child on the spectrum can look around their family members and see traits in themselves and others. I had a discussions with SueNYC about sensory differences we both have which was interesting. That was something I never considered was autistic until I saw Olga Bogashina, and afterwards I thought 'well if that's what autism is then my son has got it'.
You talk about 'seeking thrills'. Not is not really what it is. It is about information receiving/interpreting and responding. I would certainly recommend getting her book and doing a profile on your stepdaughter.
When I saw Olga, she herself talking about an incident with her son (her son is autistic and her daughter is Aspergers). Her son was non-verbal until age 9. He is now bi-lingual. He has many sensory problems, and she tries to get him used to certain environments by taking him on shopping trips etc. Anyway, on one such visit, around Christmas time, she said she knew she had made a mistake as soon as they entered the store. It was absolutely packed with people. There were christmas decorations, flashing lights, music, people dressed in costumes etc. Then someone reached over her son, from behind, to get something off the shelf, and accidently bumped him. That was the last straw for her son. He had a meltdown and started lashing/hitting/kicking etc. Olga said, the only thing she could do was get between her son and anyone else. She ended up taking the brunt of his physical assault. She managed to get the two of them outside the supermarket. Afterwards, her son was so upset and apologetic because he had hurt his mother. She was also in tears about it. But it is not their fault, that is what she was trying to get across. And once you understand how they are perceiving their environment, it makes sense, and you can navigate better through social/environmental situations. That doesn't mean you can always remove difficulties for them. But you can recognise them as they arise and therefore prepare for them, and also get them to experience these environments in a more controlled way so that they can de-sensitize and also learn how to cope.
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