Can't take anymore

Wow, How wonderful is this to find people that have been through the same thing as me. My daughter is nearly 18, she has a 5 month old baby, who is totally adorable, & every day brings a new challenge. Faye went to a school with a specialised unit, she was one of only 2 girls there. She is high functioning so her awareness of being 'different' was a nightmare for her. She started to beg to go to a 'normal' school in year 9, but I was advised it would be like taking a lamb to the slaughter. In year 10, the school in their wisdom moved her into different sets as she was doing so well!!! Not after that, after moving her from her friend, Reece, she completely stopped working, then refused to go to school at all. I asked several times for her to rejoin old set, but that was too difficult apparently, so she left school with little exams. My husband works away, he met Faye when she was 13, that has been a rollercoaster of a ride!

Do you think Aspie girls struggle more than the boys, I am not sure I have worded that quite right, I am just glad to find this forum of understanding

Hi

We have been through many of your experiences in 'ourhouse'. I thought it would be a comfort to know that there can be positive outcomes with the correct help. My son who has ASD experienced similar problems in primary school. The most important piece of advise I can give you is to keep communicating with your daughter, give her time to say what upsets her and ask her opinion on how you can help her solve them. You will be doing this several times a day for a very long time. It will get easier and the problems can be helped and resolved. As a parent we expect the best for our children and why not, different they may be however as a member of society we should all be accepted. The next time the school phone to ask you to pick your daughter up try saying that indeed you will come in to discuss the problem however by removing her froms school only results in temporary relief for both them and your daughter. Arrange with the school, headteacher, ed pysch. and behaviour support unit to meet and discuss issues. Telephone a service called enquire and ask them to go with you to this meeting. Discuss with your daughter what is happening and ask if she would like to come to the meeting. Arrange through this contact the best way forward her your daughter. Remember commmunicate with her and say to her that withdraeing from school is not an option, explain to her that if you can get her help with her anxities then she will start to feel better. Ask her if she can think of a strategy that will help (my son writes down his feelings and worries). Get another refferal to clinical psychology who can help her deal with her anxieties.I suppose what I am trying to say is that there can be light at the end of the tunnel, my son with alll the support mentioned has now completed 6th year at high school, obtained 5 Highers at B grades and has gained entry to university this summer. His school said at the age of 9 years that they did not think he could sit exams and would probably not complete high school. He has written a short essay about his reflection of autism, if you think you or your daughter would like to read this please get in touch and I will forward it to you, He is happy to share this to help others.

Thank you all for your support, encouragement and information.

Jim. Thank you for the links. I'd not heard of the Parent to parent support before and its certainly something I will look into, just to know someone else is there to listen would be a great help.

Mhairi. She did have a friend at her mainstream school who she spoke to about her problems, but that 'friend' then told everyone else about her problems and they proceeded to put it all over Twitter and take the mickey out of her, not to mention me too. I knew kids could be horrible but that was beyond belief. Anyway, its made her find it hard to trust anyone now, so she'll only talk to me or the psychiatrist (am waiting for an appointment) which i can totally understand. I think, and Daisygirl kinda confirmed it, they just can't seem to say what the problem is, all she knows is that she's scared and doesn't know why. I know what you mean about looking after ourselves though, I was desperatly trying to loose weight but have just given up, I can't be doing with worrying about what I eat as well, I dont have the time or the energy. Thanks for your support

Daisygirl. I'm going to show your post to my husband in the hope that he will finally understand that its a disability and she can't just "get a grip" as he puts it. I've suffered anxiety myself over different things so I understand how debilating it can be, he seems to think that if I just push her into things she'll have to "face it" and "deal with it" I can't make him understand that pushing her will only make it worse. Perhaps if he reads it from someone else who not only has the anxiety but Aspergers too he might just get it.
Thank you so very much for proving that what I've been trying to say for the past two years is right, not being an Aspie myself its hard to understand sometimes but, like I said i've had the anxiety so I can relate to that far more than my husband ever will.

She seems a bit better today and did manage one lesson yesterday which I was proud of. She's going into school this afternoon and seems okay with that, I know then things will be fine until lunch time Sunday when the worry of Monday morning will start to kick in, she might be alright, I just dont know now. Time will tell.
Thanks again xxx

What you daughter is experiencing sounds exactly what I went through. It started when I was around 9 or 10 years old . I just hated school and the very throught resulted in extreme anxiety. I wanted to kill myself rather than go. I went to different schools, but it made no ultimate difference. I could not explain what the problem was to my parents or teachers. This went on until I was 14, when finally my parents took me out of school and home schooled me.

The result of keeping me in school, where every day was a mass of fear, anxiety and stress, was that I learned nothing. To this day I cannot remember ANYTHING that I was taught in high school classes, I can't even remember being in the classes becasue I was in so much anxiety. I say this not to upset you in any way but to suggest that taking your daughter out of school may be better for her in the long term.

I know it very much depends on your circumstances and your daughter's abilities academically, but GCSEs aren't the most important thing, your daughter's ability to cope with stress and anxiety is. I could not even begin to try and cope with stress until the threat of going to school was lifted. Then I began to settle down, relax a little. I did external exams in the subjects I was good at later on(there is a home schooling network you can get information from). I gained confidence, did Open University courses (this is harder now for those in England because of the changes, but is still an option if your daughter is at that ability level).

I stress, this all depends on your own particular circumstances, and your and you daughter's experiences may not be the same as mine. As an adult female Aspie, I would say for Aspergirls the main important thing for the future is confidence,the ability to deal with the stresses of living in an NT world, and a good support network. I developed slowly, and I just wasn't ready for exams etc. at the time they came along, I had to wait until I was ready otherwise it was a disaster. When I was ready it was a success. I think Aspies can't be pushed, especially when they are sufferring anxiety, they need time to get ready for each challenge.

I am just trying to say, don't let what the NT world is doing be the guide for your Aspergirl, she may need to take things at her own rate.

I hope you and your daughter find a way through this. I really feel for her and wish you both the very very best.

Hi

Sounds like you have been to hell and back all of you.

I can relate a little to what you are going through as I think we are in the initial stages of your journey where our 10 yr old says things like he would rather die than go to school and "I wish I could rewind my life so I could kill myself as a baby".  Horrible to hear as a Mum but I also know he has no proportion in terms of the language he uses or empathy to know how horrific it is for me to here.  He has had time off school due to anxiety and we are gradually easing him back in with a struggle at times.  As you say, once the pattern is there it does get repeated and something just seems to trigger it off again and take them back to that place, time, emotional process.

Do you have an Ed Psych that could offer some suggestions, strategies to try or the Paedatrician.  I am sure you have tried and thought of these but here goes anyway - reduced or minimal hours until she starts to recover/calm, accompanying her to school, putting GCSE's off for a year or reducing the amount of subjects being taken, a short holiday.  I am just thinking randomly as I want to offer you some support at such a difficult time as I am sure others will.  Is there anyone she confides in that may be able to get to the core of the anxiety so you can help her with it?

It is very tough when those closest do not understand.  I deal with this in viewing it as they are unable to, they are scared of what they do not understand and it overwhelms them.  They do not mean to hurt you, they just do not have the capability or strength that you have to face up to it and support your daughter whatever it takes. 

Do your best to keep yourself well, plenty of sleep, eat well and get out and about even if for a short time.  This is the pot calling the kettle black as I know this is what I should be doing when I get overwhelmed with everything, but the adrenalin kicks in and you easily forget to look after yourself.  You will be stronger for it though and be able to think more clearly to find a way through.  Health for you both is the most important priority.

Are you part of an NAS Support Group/Branch?  They can be very helpful in giving ideas.

Sounds like you are a fantastic Mum doing your best for your daughter. 

Stay strong.

Hi ebony,

Really sorry to see how you are feeling. I don't think there's anything selfish in feeling overwhelmed, especially with everything you, your daughter and your Dad is facing.

It's sounds like you and your daughter have done a huge amount and if you're getting so little recognition then it's bound to take an increasing toil on you.

Your experience hasn't been something I've gone through, so I wouldn't want to suggest what may be best, hopefully other parents and people on the spectrum can share their knowledge.

In the short term I'd really like to suggest a couple of services we run. We know getting through may be difficult, and you may have already tried them, but if you haven't they could at least provide some practical advice, reassurance and support.

Our Parent to Parent service allows parents to chat on the phone with people who have been through similar situations. People who may be much more understanding of what you and your daughter is facing than members of your family.

You can call in and arrange for someone to call back to discuss your situation -
http://www.autism.org.uk/our-services/advice-and-information-services/parent-to-parent-service.aspx

On a more practical level there is our Education Rights Service - it may not be exactly right but I think it could be worth speaking to them to see what steps they suggest to find help. Here's the page where you can read more -
http://www.autism.org.uk/Our-services/Advice-and-information-services/Education-rights-service.aspx

And this may be more of a stretch but some of our pages about autism may be worth printing off and showing to your Dad. I'm sorry if that sounds twee and obvious but here's the link just if some of the information may help him be more understanding.
http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction.aspx

I hope some of the above can be helpful, don't know if it's any comfort but all of us here do care about what you're facing.