I have been doing a lot of thinking lately, about Amy and either a need for some much needed manners or that our ideas about boarding school might come to fruition sooner than we anticipated. Academically she's doing fine, albeit with a large amount of support, a good school and an inquisitive mind. But this week, and not for the first time, I have noticed how poor her social skills really are when her "BFF" has been for a sleep-over. The friend is adorable; she's patient, softly spoken and a well mannered ten year old who has, without a doubt. got a very bright future ahead. I keep hoping the friend will have some kind of influence on Amy but it doesn't seem to be the case. Amy speaks to her friend terribly; she's rude to her, abrupt with her and has absolutely no patience yet the friend comes back for more, much to my gratitude, and surprise.
And so I found myself scouring the Internet recently for a) special needs boarding schools in the north of England, and b) boarding schools for autistic children, again in the north of England. The results were pitiful. There are some of course but the fees are so astronomical that we would have to take out a small mortgage to get her through the next five years of her life. We're talking around £15-20k per annum. I appreciate they may be worth it, but on a farmer's wage it isn't easy. But what I do know is that she needs something to help her with the extremely poor social skills she appears to have. It is something I will be speaking to the school about in the near future as I am sure they will help me, but for my sake as well as Amy's, the respite of a boarding school will probably do us both good. Autism isn't an easy condition to cope with; one day she will be my best friend, giggling with me, wanting to spend time with me, and the next day she will hate me; her rudeness pushes me to the limits and with my new found grumpiness (not just in the morning as the Farmer would point out) which is due to my new medication according to the consultant, it doesn't bode well for a happy atmosphere. But I can't help thinking as I'm sure other parents of children with special needs and autism will too, that to have to fork out £20k to send our child to boarding school because they need a greater support than is currently on offer is absolutely scandalous.
It seems so wrong in a modern society that you have to pay out for the support that should be everybody's by right. I wish I could offer a solution!
ReplyDeleteFirstly, if she has a statement you don't have to pay, the LEA and social services pay. But of course you first have to persuade them that a residential school is actually needed and that can be the hard part, especially where a child is coping in a current school. Specialist residential schools will not even assess a child until that promise of funding is already in place and parents aren't allowed to pay (the cost is nearer £100k per annum for residential, btw)
ReplyDeleteAs a parent you need to look at everything that is available locally and make a strong case about why it doesn't meet her future needs.If you don't already have a social worker you need to get one.
I'm a great believer in specialist education, but as you say it is in short supply, so your case would have to be very strong. Sorry if that sounds negative, but it is the reality.
Cx
here we have medicaid that will pay for certain services, luckily or we can petition the county for money...just sat on one of those meetings yesterday...it is a pain to have to justify but...do you have mentoring services available...i do intensive in home therapy/counseling and i spend quite some times on social skill development...
ReplyDeleteCathy - I'm not easily shocked but you shocked me with £100k - the ones I looked at are in the north and seem to range between 15-20k. Thanks for all your advice, I really appreciate it. I'm going to look into the social worker too.
ReplyDeleteWhen I said £100k I'm talking about specialist ASD provision, probably for more challenging kids than yours. But my son 2's specialist (NAS) day provision was over £30k a year when he started there 12 years ago. Must be quite a lot more now. In comparison a place at an LEA general special school at that time cost around £19k, I was told. I hope I haven't scared you, but there are given procedures for getting such a school place, because legally the school HAS to be named on the statement and if it's a resi place SS have to pay part of the fees, so she will need to have her needs assessed and agreed by them too. (She does have a statement, yes?)
ReplyDeleteCxx
It IS scandelous but then so is the whole education system here. Greg and I were forced to put Kay into a private secondary school because the only other option was a run-down, poorly-performing inner London comprehensive where less than a quarter of the kids passed their GCSEs and many had police records. We already knew at age 11 that Kay was bright and, although we only lived half a mile from another better-performing comprehensive, we were "outside" their catchment area. To be "inside" the catchment we would have had to buy a house worth £750,000 or more and we simply did not have that kind of money. So paying for 7 years of private school was a lot cheaper. It means that I am now reaching my retirement with no savings. It does make me angry,that the state could not provide a decent school for us and that we had to pay so much, but to see Kay established and doing what she always dreamed of, more than compensates for that.
ReplyDeleteJust a thought - if Amy went to a boarding school, would you then be able to return to work to fund it?
I think you should fully investigate these schools by way of a personal surprise visit to see if the environment is right for Amy. You've said it yourself, you live with peace and beauty around you. Many things affect a child's behavior and social skills.
ReplyDeleteYou mentioned your medication is making you less than your best throughout your day. Lesson time starts at home. Explain this to Amy and let her know how you are going to do your best to get above it. It'll be a struggle at times but awareness is the first step.
Amy may want to share her own awareness of things she's going through or about to. She's on the cusp of teenage hormones. Talk about a fun house ride for the parents, you'll be wrong or stupid to her for about 10 years. Kids learn poor behavior first from their classmates, don't ask me why, it's an obnoxious mystery.
Show and encourage kindness, it does take deep breaths and patience to do this at times.
I agree with Steve. It is frustrating to see how expensive that extra help can be. Who knows, maybe a year of the boarding school could be enough to get her starting some better habits, that could be reinforced by you the rest of the time. That is a complete uneducated suggestion. But I have learned that with my kids, sometimes they need an outsider to be objective and teach how and what needs to be taught.
ReplyDeleteGood luck! I like your advice Sheila.. I think we could all apply that with our kids. The first step to change is indeed acknowledgment of the problem.
you probably have already, but have you contacted your local autism outreach? they may be able to point you in the right direction. hope you find the help you need x
ReplyDelete"one day she will be my best friend, giggling with me, wanting to spend time with me, and the next day she will hate me"
ReplyDeleteThat line made me smile CJ, I am fortunate enough to never have needed a great knowledge of Autism (tho the My Love manages a residential home for severely violent Autistic adults so do have a small insight into adult problems) ~ but that line alone could have been written about almost any child of Amy's age on the planet :)
I hope that you are able to find the support and help you need for both you and Amy x
Finding a social worker is a good first move. It may be worth finding out what services there are in your area such as Relief for Carers, short and longer term Respite Care asking school, LEA, Social and Health Services + voluntary bodies. Hopefully you can get advice on short term help +long term decisions.
ReplyDeleteIf Amy has a Statement I believe you have a right to ask for reassessment so long as it is more than six months since her statement or last assessment. At the assessment her changing needs and their effect on you can be highlighted. You need to make a very strong case, enlist all relevant help, it could take quite a while.
Your own health and input from GP is very relevant.
You are doing brilliantly and need every bit of support you can get.
Keep on blogging. Val
Cathy - Thanks, yes she does have a statement and receives 28 per week of support; there are various aspectssof which the school are currently trying to improve with her. No you haven't put me off but it does make the process a lot more daunting.
ReplyDeleteAddy - I am self employed with the farm and I could do a lot more around the place, other than that I'm not sure how the system works for tax purposes.
I am planning to talk to various organisations when Amy goes back to school; social services, Amy's school, autism centres. It is quite difficult right now for me to get to places as I am unable to drive and where I live it is too far from anywhere that offers such services. We have no public transport either. So many things to think about.
You are blowing me away with your advice and helpful comments, suggestions are what I am looking for; thank you for your support.
CJ xx
It is so hard, isn't it? I would definitely approach the school - you seem to have found a great one. Ours, despite its 'Autism Aware' status, has been pitiful. If I don't push, nothing happens.
ReplyDeleteSo yes, talk to them. Get all the advice and support that you can. Explore all the options. There will be a way to do whatever it is that is best for Amy, and you, and your family.
((hugs))
Is Botton Hall residential?
ReplyDeleteYes it's me again! Just another thought or two. The NAS has a good parent helpline, they should be able to talk you through the procedures and also give you more info on what actually is available in your area. I'm much more wary about local parent partnership organisations, as they are usually funded by the LEA and therefore not entirely impartial. The statement will need to be rewritten anyway if she were to go to residential, it would need to cover things like the 24 hour curriculum, which is one of the buzz words you need to throw at everyone. Push the fact that you have health needs and can't drive, therefore limiting Amy's opportunities for social integration and leisure activities. Start keeping a diary of behavioural issues.
ReplyDeleteHave you thought about a regular private school with flexible boarding? Maybe more locally?
ReplyDeleteMy daughter gets very good support, play therapy and extra help with social skills at hers and it really has made a difference. She's much better at talking 'to' people rather than at them. And she's had extra work put into learning 'people skills' and not being quite so blunt - her teachers worked wonders last year! The smaller classes also mean that she can concentrate better as she has issues with noise.
Her school does flexible boarding which means you can do weekly, monthly or just the odd evening. Many have special SEN departments and are brilliant. It's worth checking out x
I'm not well versed on autism but I have had a great deal of experience providing care for someone you also live with. My ex required a great deal of assistance, I attempted to take care of as much of it as possible. The problem turned into me not knowing what was a need and what was a want so I did more than I probably should. As a result I neglected to take care of myself effectively and this cause some major issues. I also have a sister with some mental illness that requires a great deal of patients.
ReplyDeleteThe one thing I can definitely tell you it that you have to take care of yourself first. You cannot take care of someone else if you can't take care of yourself first. I know it's difficult to put yourself sometimes but if caring for another starts wearing you down there is no bouncing back or catching up. I had to move out from my ex after 11 years because trying to help her I let my health decline to a point where I needed help and it was too much of a burden for us to continue living together.
The good news is me and the ex are still best friends and stay in close contact. She is also very well connected in the disability community here in the US and works for the Department of Education at a very high level. I know there is not much from here that would help you there but I will check with her to see if there is some information available that might be universal in helping.
The most important thing is you need more of a support system than you have so that you can have time to take care of yourself and your family. There is an issue around the world with people getting sufficient supports when there are additional needs in a family. For now I wish you the best of luck and I will find out if there is any information that might be of any assistance for you.
Kelly
Cathy - Thanks again!
ReplyDeleteLiz - Yes, I looked into a private boarding school in the area last year before she started middle school but it wasn't to be. Unfortunately, they weren't forthcoming and were unprepared to offer enough support. It wasn't the right place for Amy.
Mrs Nesbitt - Botton is a village for people with special needs, I don't know a great deal about it but it is a possibility for when Amy is older - 18 ish.
Thank you for your comments, CJ xx
erm, just wondering why you think a boarding school will help? not being rude just curious!
ReplyDeleteI don't have any words of wisdom but I think the people above have some great ideas. Just wanted to say that the whole situation and lack of support sucks and that I'm thinking of you and sending huge hugs your way!!! xx
ReplyDeleteCrystal,
ReplyDeleteBy no means am I underestimating what you are going through with a daughter with autism, however, I must say some of these things are quite normal. Well maybe not normal, but things I did when I was that age. One day I loved my dad, the next day I hated him for not letting me take the car. I threw temper tantrums and hissy fits all the time, only in my twenties did I realize this behaviour was unacceptable, my dad never said a thing to me, like he expected it or something. Now the fried thing, I think you need to have a stern convo with her about, about the importance of having dear friends in your life and treating them well.
I'm sorry I feel like i am telling you how to parent, and I don't want to do that, just giving you my experience. I am not a mother, so I have no right to tell you anything!
It IS madness and it is the same the world over, sigh. I hope it works out for you. Jen
ReplyDeletesadly money talks in this world and if u cant pay they are not interested,sad...
ReplyDeleteI've just spent a week with my grandsons while on holiday.
ReplyDeleteI was thinking it would be my autistic one that might be difficult but it turned out to be his younger brother ( without the problem) who was the most trying. He is almost 12 yrs old and I really think that it is a difficult age with or without problems.
I think both their social skills seemed in need of attention and wonder it siblings of autistic children do suffer too by being exposed to so many difficulties.
It is an extortionate amount of money to have to pay for boarding school. Surely there must be another way.......
I think that only the very rich could afford that kind of money and that would rule out our family.
Good luck with your search.
Maggie X
Nuts in May
a - There are various reasons why boarding school will help Amy; apart from the fact she is very keen on going which is half the battle, a 24 hour curriculum (as Cathy says) will do her the world of good and most probably help her improve many aspects of her life. It will also give me respite which is, sadly, what I am in need of due to my own illness of epilepsy. If boarding school doesn't work out for Amy then I will bring her home, but it is an option we are looking at seriously.
ReplyDeleteQueen - I was a pain in the arse when I was in my teens but of course I'm an angel now! Just telling Amy in a firm voice doesn't solve the problem; explanations occasionally do, but a lot of time and patience usually helps a lot.
Maggie - I thought that myself; we aren't rich and couldn't afford ridiulous costs as £100k a yr (as Cathy points out) but if the government were prepared to pay that then I would be happy to let them.
Thank you for your comments, CJ xx
I can understand your reasons and it does suck that the system provides so little help. Really hope this works out for you all. xx
ReplyDeleteI wonder if you're getting a few hormones in there along with the autism? At 10 my youngest suddenly started having all kinds of mood swings and tetchiness - now much better (though not gone). You may find things smooth out a bit over the next year without the ruinous boarding school! Hope so anyway xx
ReplyDeleteYou need to be prepared for a long stressful battle as to you its about Amy's future to the LA its about money. Parents even use specialist solicitors these days.
ReplyDeleteCasdok - thanks! I realise there's a lot to
ReplyDeleteThink about and I'm preparing myself for the
Battle. Please stay with me, your help is
Invaluable.
Dulwich Divorcee - I definitely think hormones
Are included right now!
Thanks again for your continued support.
CJ xx
Always here for you x
ReplyDeleteI totally understand! Brandon had such a hard time making friends growing up and I remember a couple good prospects who, after all the complaining that he wanted a friend, would end up being treated terribly! He only wanted to do, what he wanted to do. Asperger kid set in his relentless way with his 'tunnel vision' as I called it. If he wanted to watch sci-fi or play WOW computer game; there was no compromise. It would drive me crazy!
ReplyDeleteEven though he is doing so much better in the the last 4 years, he still can be unbearable if he's been glued to the computer all day while I'm at work. Talk about Rude.. and all because he thinks those games are everything and that the people he plays with are really his friends. Ugh... I seriously consider the college dorm this year, if it wasn't more money a month for a dumpy little dorm room, as my house mortgage. It's crazy!
Thanks for sharing! You always make me feel better! :-)
Good Luck & Hang in there!
Coreen
i meet many people in the land of home ed who work their way here because various state options (and some private ones) don't add up for the health of their child or the well being of the family.
ReplyDeletethere are always options, although i know sometimes you have to make them appear. those options are not always simplistic ones like school vs home. there are many imaginative educational solutions.
one approach many educators share is thinking 'what education do i want for my child' then they go round building it up. that may be a mix, like a bit of state, a bit of private, a bit of home, a bit of residential. it can be done.
as cathy & casdok indicate: clear thinking, strong lines of reasoning, fixing on long-term goals with unshakeable determination, plus an ability to remain calm in all stressful encounters with officialdom.
then the rest is easy ;-)
Velvet - I'm glad Amy's not the only one! I sometimes feel very alone until I remember how many other parents encounter the same difficulties.
ReplyDeleteGrit - Your support is very welcome. This isn't going to be easy but I know I have lots of helpful suggestions and a lot more hopefully to come. I have to be calm these days and try my best not to let myself get into stressful situations due to my epilepsy - it can be brought on by stress - which is why I need to stay one step ahead of the authorities. Whether that will be reality I don't know at this stage, but I'm gonna try my damndest not to let them beat me.
Thank you again, CJ xx