Published on 12, July, 2020
Hi, Thanks for letting me join your forum.
I have a ten year old. I don't know where to begin really.
Iv managed to get her referral/diagnoses bought forward to the spring due to stressful circumstances making everything worse.
Flower (not real name) has always shown signs of being on the spectrum but no one would listen.
She never played with her toys or joined in if you played with her. Would sit in her pushchair and go for hours without doing or saying much.
Its been and is continuing to be eye opening for me. Flower hasn't been to school since last spring, well only part time.
Luckily Iv found a school that has a higher level of children with diagnoses and cater for everyone very well.
They are being great and Im hoping to get her going back from next week starting at later time.
Her rages really effect me and recently Iv been kicked a lot. Flower fiddles with things and breaks them, Iv also been told she cannot be left in a corridor at school on her own and says lots of inappropriate stuff. Also still not much eye contact. I cannot get her out of her bedroom at the moment or bed. I did manage to get her into the shower last week which I really praised her for.
We have gone through a very unsettled year with me breaking my marriage up that was abusive. That has not helped as my ex is very image conscious and cannot deal with our daughters communication and anxiety in a mature way.
Im stuck in the house at the mo and cannot work as Flowers at home.
I would love some tips on communication and will look on the website for some.
Im also going to look at some books.
Iv been in touch with Derbyshire Autism Services today and Im hoping they will come back to me.
A big hello to you all
Hartleysmum (that's the dog)
You are an Unrecognised Unpaid Family Carer of Last Resort. The Fact that your daughter's school say's she cannot be left in a corridor on her own say's it all. Somebody must fund her care. This will need obviously need somebody to supervise your daughter out of class for her protection in the first instance.
I suggest that you see your GP with your daughter ASAP and explain you need your daughter to see a specialist to confirm that she needs help from a carer at the school as a priority, and that yourself as a carer need some respite from the local authority. This is I believe is a week where Carers UK are trying to get all Local authorities to give carers such as yourself a statement of your needs as a Carer. (Google Carers UK). Your school has a budget every spring That is too long to wait to get her recognised, as you should get help from your local authority.now. before she moves to secondary schooling where you will have to start all over again, always off budget.
As for a handicapped most probably autistic swearing profanities. This I will say is Normal. Work on the assumption that her classmates taught her those words, because they will know she repeats them and repeats them many times. This is autistic behavior and she repeats them also because of the shocked reaction she gets from adults. It would certainly give some of the tykes I have known a laugh at your daughters expense, who probably does not know the meaning of the words only the reaction they achieve.. On a well known Estate I was working on 40 years ago, I once in passing rebuked a 10 or 11 year old child with a baby in a Pram in her charge teaching it to say "F. Off" over and over again, for when others stuck their head in the pram to see the baby, only to get a trained response from the child as its first words. I presume your daughter has been taught whatever, that is what some kids do.
It is good that you are trying to raise awareness of carers but most parents don't really consider them selves "unpaid carers of last resort" in some cases this is true but most parents here are just looking for guidance. Also carers week was 11-17th of June
My reading of the request for lots of information; was that NAS50003 was an Unrecognised Unpaid Family Carer of Last Resort in the same manner as others who write here for information, who can be helped by respondents in the same boat, so to speak. as perhaps even such as yourself who may have spent half their lifetime without either themselves, or others recognising that they themselves are somewhere on the AS, but importantly are not carers of an autistic person, as We are, my wife being a life member of the NAS for over 30 years, and we are still up against getting the powers that be to fund their responsibilities.
I will try and Paste below here part of my son's Solicitor's e-mail to our local Council's solicitor on her desk This Very Morning. I have not included names etc as it may yet go to the Ombudsman.
In the meantime you give misleading information IN YOUR EFFORTS TO DERIDE WHAT I HAVE WRITTEN THIS FRIDAY NOVEMBER 27th IS THE CULMINATION OF A WEEK LEADING UP TO CARERS RIGHTS DAY
Hopefully as your daughter grows older, she may require less and less input from yourself, as she makes sense of her world. You obviously have a lot of stress put on yourself. While your daughter and 6 year old son are at school, hopefully you get a break for yourself and baby of about 35 hrs a week, This still leaves 133 hrs care for your daughter's needs that are up to you alone being able to provide them.
As some of the writers to this Forum indicate the help they may have needed has been without input from a carer.
I can only suggest that; as so much depends on you, see your G.P. about your anxiety. and explain your situation. and ask if you need to get help from the Council Children's Social services. Your daughter as others who write here, have a lifelong disability. What you don't want is for your health to break down, as ours did.
When younger, My son was just one of our family of 6 kids. That is why we did not let him go residential as some official advised, being a carer just creeps up on you.
Don't forget This Friday; contact Carers, UK for advice as to your possible rights as a carer, even if you don't think you are one.
Good luck for You and your Family.
Firstly at no point have I doubted your sons need for a carer second as stated in some cases your comments are completely accurate. My comments purely related to applying the term to multiple other parents who have given no indication of being in a similar situation. You are obviously a devoted parent. I have spent the last 22 years caring for my children eldest had alot of health problems which luckily have now been rectified, 8 year old has asd and only sleeps 3-5 hours a night I am the only adult at home who can deal with her ( dad drives lorry can't miss sleep as it would be dangerous ) we also have a 6 year old and an 11 month old. I am physically disabled and suffer anxiety my point is that I don't consider my self a last resort, should people get more help when it is needed? YES they should but should all parents consider themselves a last resort? NO
I note that your son required more feeds than the average child and lost more than the average 10% of body weight as a baby I also had this with 3 of my children who were all born between 4lb 6Oz and 4lb 10Oz the worst of these was my daughter who dropped from 4lb 10 to 3lb 2 she required feeding hourly for several months at no point did I even consider myself a carer just simply got on with it as I'm her mum.
I do not diminish the struggles you have and are still facing you obviously deserve help and by rights should have received it you like others have been failed by the system.
I merely point out that not all parents are in a situation like yours and that your term to some may come across the wrong way no matter how well intended it was
Good luck getting your son the help he deserves
Of Course caring for your child is a natural. This we have done since my son's Birth 35+ years ago. This has been at the expense of my business as my son has needed two Carers 24x7 from an early date, I enclose a copy of the earliest record of his disability from the first couple of weeks of his life.
As he was with his brothers and sisters he was not packed off to Council funded Care when he was diagnosed as autistic at the age of 3.5 years, but he attended daily with his residential peers the same very good school, but now closed down and amalgamated within a normal school.
Social services Officer stated during a meeting on transferring to adult services at age of 15 years. I was threatening her as I had stated my sons Care needs. We immediately left that meeting. Never argue just leave without speaking!
At age17, two years before leaving school, we requested the Final two years be residential to prepare for subsequent residential training. This had been promised at any time at age 3.5 years - a place was allocated, but the Council refused. It was now a different Council Boundary.
Another Officer a sociologist at a meeting where I said I will appeal the council's decision, said "no you won’t"- She sat on her decision for 18 months to prevent an appeal. The decision worthless by then.
The Ombudsman early on said to me on the telephone "You cannot appeal a non decision". It was then Common practice Nation wide, by councils Now stopped they now have two weeks to decide.
Meanwhile, I had the Council''s Director of Education write and say he needed a letter from their specialist doctor stating the need for this specialist Residential education as a reason to not to decide.
Guess what? He had the letter from the very beginning and “Found” it 18 months later.
Meanwhile during the two years I arranged a training place for my son - To start at a"Mind" Training centre with grants etc. to start at 1/2 day gradually over a year to start full time residential if possible.
Guess what? The First Officer noted above sent a letter saying how dangerous it would be under Health and Safety and kyboshed the lot.
Thus they got rid of my son off their records, to come home with nothing to do at 19 years of age, and then forgotten about, as he was off the Council records according to an his NHS Adult services Nurse.
Because, We all had a complete Breakdown. We could not cope with him any more after 4 years without help. I had to beg the social services via our GP to help, They allowed him ½ day a week. This had to be increased gradually to 5 days per week, totaling 35 hours . However we always had to be ready at a moment’s notice go in a car anywhere and rescue a situation, removing him, as every placement he had failed. He was a package to put somewhere, and we had run out of places.
Eventually in late 2012 , I used the Direct Payments (Wales) Act to get funding for two carers taking him out and about for two years, but this eventually failed and the Husband and wife Carer resigned. Before I could recruit any more carers the Council on the say so of a leaving Social worker pulled the plug on the money. February 2015 leaving EP at home full time again.
For the last 3.7 years. Despite meeting after meeting, This Funding is the duty of the council under the social services act, except we have been forced into this full time, as his Loving Unpaid Parent Carers of Last Resort. I hope this Phrase annoys them. So far they have dodged about 100K and I have not been able to continue with a business enterprise, this has been a considerable loss to me.
Thanks for the reply, wish you had made clear carers rights week as this is different event from the awareness one I mentioned. And I do agree to some extent parents are unpaid carers, I was just always raised to believe that is being a parent. It is your phrasing of " unpaid carers of last resort " that gets me, in some cases I agree people do need help but not everyone sees it as last resort having to care for your own child. Just an opinion