Nic m

fab news

Mumble I am not on here much and just noticed this thread.........hang in there. I am thinking of you xx N x

Mumble Its the best thing about it for me I love knowing my sister will be harumphing about me at the top of the leader board, then she calls me to ask how I did it ............and I have to say wait till I ask your Niece lol. N x

Hi trekster My daughter cannot take medication with any of the benzoates in them either and removing it from her diet on the whole has improved her health a great deal. pain relief in tablet form has been what has worked for us. I don't know if they contain milk sorry. My GP and the pharmacy are very good. If my GP prescribes something for her that is no use the pharmacy checks it and calls the GP and tells him what can be used. We have been lucky lately as now that her diet has changed her health has improved a lot. For her hypermobility pain we use a natural remedy, as it is soothing and was something we used before we knew the benzoates were affecting her and we preferred to avoid pain medication if we could. Good Luck with your quest in finding the correct medicine.

Baddad I have a facebook account and it seems to be a wee bit easier to control than other sites. My partner has an account too and even though I have him on my page only those he is friends with can see any comments he makes on my page. the privacy settings are really good for deciding who can see what. I have another internet page that my daughter wanted and I went onto it for the purpose of monitoring her page.........she hardly bothers with it, and I love it. I think they are great tools if used properly. Me and my sisters and partner and the children all compete on certain games and it really suits us. Good Luck with it, the funny thing is I am not into computer games but love the way the online games work with keeping us all in touch with each other. If my sister is up late through the night it makes me chuckle to see her beating my score and then If I am stuck I cheat........(yes I do ) and get my daughter to beat her score for me which makes us all laugh:D It has helped build a stronger relationship between my daughter and my sister. N x

happy birthday:D

Karen, Hi I applied for DLA a few years ago before my daughter was even diagnosed with anything, although she did have hospital appts for her bowels. I was refused, I did appeal, and although daunting, it was worth it. At the review stage the award was for high rate care, low rate mobility, with a view to it being high rate when it was time to apply again. I did not re apply as everything was improving, how wrong i was. I am still deciding whether to apply again. You are correct that it is not down to how you filled in the form, I filled in my own form and at the time this was my job for others, I also had support from very senior staff as well and it was still turned down! But.....at the review meeting, when I was asked questions, my ability to answer questions without looking at my notes, and my obvious distress at talking about my child's needs did make a difference. I did point out to them that it felt like begging, but it was more about the recognition of how much support that drove me on. Karen, I don't know if you have done this but it may help to get your needs assessed. As a carer you have the right to ask your local social services to assess your needs. This is always worth doing, it is not something I think is routinely offered but it is available. Even if they can not meet your needs, to have your needs recognised is worth it for this kind of thing. Good Luck, Nic x

Mumble, thank you so much for replying, i have read your latest posts and know you are having a difficult time, so i am very thankful for your input. The latest update is that my daughter has gone to live with her Dad for a fortnight, it is something i am unsure about, but i think she needs to see that with bedtimes etc he thinks the same as me. She usually stays on a Friday night and gets to stay up late, but i think seeing that her Dad also thinks there has to be routine will be beneficial, and i think she needs to live it to understand it. School refusal is down to being stressed and i am working with the school on that one and have spent the morning speaking with the school and her advocate to arrange a meeting to discuss how they can help out. Thankfully her Dad is doing a lot more and seeing her distress so he will back me on this, (only now though because it is impacting on his life, but better late than never). My GP is fantastic and is always willing to help, even to the point, a few months ago her joints were really bad and the school wanted to send her home saying her hands were broken! It took my GP 20minutes to convince her that it was her hyper mobility and the weather causing the swelling. He is very patient even when faced with a 12 year old asking how would he know lol. The problem with other people even her Dad not understanding her AS means they have always thought i didn't discipline her, when in actual fact i have always been strict but choose not to cause a scene in front of others. If my daughter was distressed when she was younger i would take her home. I knew from a very young age that she had AS and acted accordingly. Others though just saw the meltdowns and difficulties as spoiled behaviour, even now with her diagnosis it is still a struggle but i am sure everyone here knows that scenario. The transition to secondary school has added a great deal of pressure and added to that yes the hormones and its a difficult time. Again though it is school life being the pressure and homelife taking the brunt. I hope now that things will start to change, as i really don't think she can cope with much more and this is my biggest worry. But, my resolve remains the same that in order for it to work she has to know that i will not tolerate the awful behaviour and abuse she is giving me. The part i think that is hardest is realising she doesn't have an off switch, if that makes sense? She wil test the boundaries and never settles for the response when she is in this state she just keeps going and going to danger levels. She never accepts that i am her Mum so she has to abide by my rules, and always has to take the long road of realisation. Mumble, i don't know if i had said this before but what you are achieving gives me hope. When my daughter was diagnosed The Dr said that my daughter was capable of almost anything, she had a very quick mind and as long as i kept her as stress free as possible she could achieve whatever she wanted. This has always given me hope, he said she would be a very productive adult with a lot to offer, but to keep in mind her stress levels were her biggest inhibitors, more so than any sequence or rhyming or repetition that she struggles with. She is keeping up with her peers and with a limited support will do well. You, and all that you are achieving and the fact you share your struggles gives me hope. So thank you again Take care, Nic x

Hi Robbie, I have no words of advice, my nephew will be 18 and is also struggling, but he does now attend a disability group and he is making friends there. He doesn't want anyone to know he attends, but it is helping a wee bit. I hope you get some help soon. Nx

Nellie, My thoughts when i was struggling to get the professionals to recognise my daughters needs were. How do i get them to see what i see? I think a lot of parents start looking at these sites before diagnosis, and when they are at crisis point in needing the diagnosis to get support, so perhaps the ideas of diaries and video evidence etc may be useful. Also, who can i ask for advice? I also think some parents will be frightened of social work input and may be afraid to ask questions about their input/involvement but may appreciate knowing what to expect. I also worried was it something i did when i was pregnant or am i to blame? I think a few parents will wonder that, if they have no information or previous knowledge. I think this is a really great idea. Nic x

thank you J's mum i feel better already knowing this. I am tidying the mess left after the tornado and feel as if we both need this break. I just need to remember that although this behaviour is not acceptable, that there are reasons behind it. thank you. N x

Clare, thank you, I am thankful for you kind words. My daughter's father has come through! He is taking her for a fortnight to give us both a break. He has been good today and as much as i am upset at this, it is needed. The sadness at seeing her distress and knowing i am at a loss at the moment is quite overwhelming. But, tomorrow is another day and thankfully her Dad is helping. Her advocate called today and she is going to help too. Hopefully things will improve soon. Thank you N x

thank you, Ladies. I am just tired i think, usually comments go over the top of my head, but just lately i am in no mood to be judged or have my daughters needs doubted. I am sitting at the computer as my daughter is watching the tv refusing to go to school. I am going to drop her off soon at her grandad's house (her dad's family) and see how they deal with a child refusing to go to school, swearing and being abusive. All of this i am fed up with, i no longer wish to excuse this behaviour, and although i am aware her life is tough now i dont think i am doing her any favours by allowing this. Her Dad does not get attitude because he doesn't really engage. My sister, well i will just keep her at arms length just now and keep going with my plan. Thank you again, Its nice to know that I am not the only one. Joanne, my family are aware of her AS diagnosis and for the most part are supportive, i guess my reality is that genuine support and understanding only really lasts from a few people. I think a lot of people get support fatigue or something and i understand this, im fed up just now and i have to deal with it. So again thank you and hang in there N x

Right now life has been difficult in my household. My daughter is finding secondary school quite tough, and i have decided to make a lot of changes again regarding work. I am doing this to help my daughter and make things easier for us both. However my sister has really upset me as has my daughters father. My daughter has had several chest infections lately and has also had very painful swollen joints this winter, all of this has added to the stress she is under and i feel the length of time she is taking to recover from them may in part be down to how stressed she is. Anyway, my sister said to me yesterday that what my daughter is going through is no different from any other child starting secondary school! I know this is difficult for lots of children and i am not dismissing that and was also not looking for sympathy. I am giving up my shop to open a stall at weekends because i am not managing to do everything that needs to be done. My sister seems annoyed at me for this, but i don't really care how money comes into my houshold, i just want things to be easier for me and my daughter. So when she asked about this i explained the kind of issues i was dealing with, and this was her response, along with , well just find ways of helping her then! Tonight another major eruption happened in my house and because i have been quite strict over the last few months about bedtimes, and routines etc in order to help my daughter cope, well she didn't like it, but that is nothing new and she texted her Dad to come and get her (without my knowledge) he came suggested that perhaps i should just appease her and also said well you are 10 years too late in disciplining her! I sent a very long text to her Dad explaining how angry i was at his response and that i need a united front to combat this very difficult period in our daughters life, i got no response. My sister, well i don't know how to respond to her attitude. I wonder is it even worth trying to change minds/attitudes within my family? I usually say very little to them and really don't ask my daughters father to do much beyond the basics, but I am upset at how they have both responded I don't bang on about my daughter's needs and really don't look for sympathy but i am tired just now because of all that i am doing getting the business sorted while dealing with my daughter's needs and really felt the sting of their attitudes. As you can see from the length of this post i am not being concise and to the point either just now. So my question is, Is it worth worrying about this attitude, because i don't ever see it changing? Thanks for listening x Nic x

Look after yourself too

Hi Karen, you are not alone, and i think baddad's advice is a great idea i shall do that myself i think write a list of positives, i am just about to embark on DLA forms again. This was part of my job years ago to help others fill these forms in, so i was prepared for the upset, or so i thought! I cried for the 3 days it took me to fill in the forms, and i have been upset at having to face the reality again that my clever wonderful girl requires a great deal more support than you would expect at her age. I did not reapply the last time as there had been so many improvements in our lives, but starting secondary and all the stress that that has brought has meant my input is needed as much as ever. Be extra kind to yourself, and know that you are doing a great job in helping your son develop if his workers struggle to see why you would apply. Make sure you photocopy the forms and get someone to read over them in case you have still not written everything. I am generally an optimist and try always to find a positive in everything, but those forms really make you realise things that are upsetting, so you are not alone. Take care, Nicola x

Hi Nellie It has been a while since i have been on, and when i have not posted i have popped in to read and have felt like commenting but have struggled too. Lately things have been difficult with my daughter and it has helped me to read various posts on here to remind myself that i am not alone in my struggles but i have not wished to post because i do feel the difference to when i first discovered this place. I had thought a year ago that it was maybe my thinking that had changed but a few times just when i was ready to post that i seemed to come on at times of great friction. I hold this forum with great affection because it helped me a great deal when i was in the midst of diagnosis and struggling with my daughters health needs while battling with the school system. I have come on to read a lot more of late and perhaps it will be a turning point with others too, if they realise they are not alone in this thinking. Thank you Nicola

Hi Sammykin, my daughter would never manage to walk the 2 miles to school so i know where you are coming from. my daughter has hypermobility and this means her joints are more bendy and flexible than most, this causes her pain and also does make her a bit more clumsy, she is very long and gangly at the minute as she is growing again lol. Anyway it may be worth looking into this in case this is a reason as well as dyspraxia, i think they are both quite common in AS. take care N x

Karen, hi, i just wanted to tell you that my daughter is in mainstream secondary school with no support and so far so good! I have written before of our difficulties with her first primary school and the improvements that happened when i moved her from there were amazing. She is now about 6 weeks into secondary school and she is doing well, the school are very good and the staff have been more than willing to speak with me as a parent and have reassured me they will do what they can to support my daughter. It is a very well run school, and at the moment i have an advocate liaising with the school making sure my daughters needs are not ignored while they await yet again the system acknowledging her diagnosis and her other medical needs. There have been a few moments where her literal interpretation of certain situations have got her into trouble (nothing major) but in all honesty these situations have helped highlight to the staff how subtle my daughter can present, and it has been taken on board. I spoke with the senior staff of this school 2 years before moving her there and they have been true to their word so far. As long as things continue on this path i will be a very happy parent. My nephew attended a mainstream school with limited supports and coped well (there were incidents along the way but not anything that was not dealt with and my sister was happy with the school). Good luck with your search and i hope you find what you need. It is amazing the difference a good school enviroment makes. N x

Don't know what to say except, take care and i hope things are a bit calmer today and that help is now being offered. N x

hope everything goes positively today. N x

take care, it is a very mixed bag of feelings at this time. N x

Mumble, hi, this is a popular topic of conversation in my family. My daughter has a high pain threshold, when things are going well, but not so great when she is upset or unwell. Mostly though she can cope with most things, and i always look out for things, and it is often when she is going to bed the pain of something can start to filter in, if that makes sense? I think when she has other things to think of, she can somehow block it? I on the otherhand would cry at a paper cut or yelp if i bumped into something, i am at one end of the threshold and she at another. Two of my sisters have the tolerence that my daughter has, to the point one of my sisters did not think childbirth was sore!!!!!!!!! My daughter recently got her legs waxed (she had started to shave her legs, and was not doing well with it) and me being a big scaredy cat was convinced she would back out at the first strip, no! she could not believe i thought it was sore! i take painkillers before getting my eyebrows done lol. So there you go. the pain scale, i think no 10 would be a broken bone or a very bad migraine, or the point when you cant take anymore, i think my no5 would be when i have to reach for painkillers if that helps. Nicola x

Sarah, hi my daughter at this age loved dressing up and her dolls (rosie and jim) her tea set, her building blocks and painting and colouring. We have just got the old photos out recently and it was nice to look back. books were a big favourite too. tell the time ones, bath ones nice rhyming ones. If she plays with her toaster and things perhaps ones of the posting box things with the shape sorter? When i worked in nurseries there was a great education toy that was wooden and had lots of doors to open, with different textures and spinny things on it. the kids loved it. Hope you find something N x

great stuff, it really gives you a boost . N x