Jump to content
Give me a clue

How many people out there have no help from family/friends etc.?

Recommended Posts

Hi,

 

Having just returned fom another attempt at taking ds (aged 8) out for a few hours it has yet again resulted in me bursting into tears/ Ds running riot & causing mayhem. We thought a trip to the local airport to see all the planes would be fun for him but instead we are probably banned for life from ever entering there again :lol:

 

Because we have no help whatsoever we never get a break and sometimes you have to go out as a family or at least attempt to, for the sake of my other 2 kids (NT).

 

As I am feeling sorry for myself, I just wondered how many of you never get any help from family or friends at all. My hubby and I are at breaking point with it all. Does anyone know of respite care available and how to go about getting it?

 

Thanks

Mich :(

Share this post


Link to post
Share on other sites

i have no help mostly,im on my own has husband and i couldnt get on.my friend now and again will have one of my twins but thats normally the well behaved twin so i still have to contend with four.im not looking forward to twins starting school september has il have all 5 to get back from school run,ds2 is at his worst at that time of day.i to am thinking about respite but not sure how i go about it?

Share this post


Link to post
Share on other sites

Hi Mich,

 

>:D<<'> Sorry you had such a bad time going out.

 

You could try getting a referral (you can refer yourself) to Social Services and you should be able to get some help. Be warned though, the waiting list is usually quite long. I referred myself and my son (age 7 AS/ADHD) to SS and have finally be given 4 hours a week (wow!) respite care. I had to wait about 1 year :( .

 

I really hope you manage to get some help. I know there are other organisations who give respite (try Crossroads).

 

Loulou x

Share this post


Link to post
Share on other sites

I get no help from friends and family and I'm raising my son alone. I applied for respite care to SS, I just called them and said I wanted my needs as carer to be assessed.

They came to make an assessment and never replied (it was months ago).

Have you tried a local support group? They organise outings in the holidays and usually one finds some help there. At the AS support groups I have met other parents in a similar situation and they have helped me sometimes.

 

Good luck!

>:D<<'> Curra

Share this post


Link to post
Share on other sites

Yep, holding my hand wayyy up in the sky for this one.

I have zero help from family and friends b/c they just treat him as an NT child and expect him to behave as such! Uhhh Duh! :blink:

 

As for help, try contacting the Health and Disability Team at your local Social Services. They sort out respite and breaks all year round.

Share this post


Link to post
Share on other sites

I'm afraid we are pretty much in the same boat. Family and friends arn't as close as they once were....us? them? who knows, got tired of trying to figure it out. Family members we were exceptionally close to...well, the relationships have come under strain and in some cases we no longer have regular contact. Caused us huge pain over the years. Left us feeling totally alone and isolated and with no one to turn to. We are also living in an area neither DH or I originate from, so have no local support network of friends. The one positive relationship we have is with my mum, who is there for us, although she does go abroad for months at a time. DH & I now do things seperately if we can with our kids. Otherwise the eldest two who are NT just constantly miss out...and believe me we spent years trying to make it work by going out as a family. Many, many tears (from us), and many, many tantrums (from our youngest dd (5 ASD). I've got to say I found SS great, so can't knock them. They were really supportive. Have included link you may find helpful

 

http://www.direct.gov.uk/CaringForSomeone/fs/en

 

It is really tough sometimes, and I so envy those I see with a loving supportive family around them, but hang in there, it can get better >:D<<'> >:D<<'>

Share this post


Link to post
Share on other sites

My mum and dad were/are very helpful but are now 4hrs drive away and we don't really know any one here yet. I am struggling too and seem to end up in tears alot. I hope you get the help you need soon. Take care >:D<<'> .

Share this post


Link to post
Share on other sites

Hi,

 

Thanks for the tips/moral support. I think we will have to go out separately more! DS never wants to go out anyway so is it really worth all the stress!! It's just that we try and do some things together, as hubby is away a lot and we rarely get time together so we tend to be overly optimistic about how a trip out will go.

 

I think similarly, friends that we did have tend not to want to visit us/invite us to their house as they know what to expect from past experiences. I have no contact at all with my parents and hubby's are not physically able to help so I guess you just have to get on with it. It feels that we are so isolated.

 

Every once in a while it all gets too much but it certainly is a real boost having such sympathetic people on here who really understand the situation and who have such empathy.

 

Thanks

Mich :D

Share this post


Link to post
Share on other sites

Hi Giveusaclue,

 

Sounds like you had a hard time.

 

I know how difficult it is too. We're lucky in one way that my parents look after our children when we are in work (both hubby and myself work full-time) - but because they have them when we are in work there is no way I could ask for them to babysit for 'us' if you know what I mean.

 

My husbands parents have both passed away - he has no family at all as he was an only child and I have one brother who I doesn't speak to me yet alone babysit. As for friends we have a few close friends but I would never dream of asking them to babysit - no-one knows apart from my parents that my daughter's been diagnosed ASD - and most of them think she's badly behaved.

 

Sometimes I'm grateful that I work so that I get out of it for a few hours - but my job is extremely stressful and loads of pressure/deadlines and very often going to work after a meltdown doesn't help as I need to concentrate but find it difficult to hold back the tears.

 

I feel my little 3yr old goes without so much but there is nothing we can do about it - I just hope when she gets older she'll understand and not blame her sister.

 

Take care,

Jb

Share this post


Link to post
Share on other sites

My MIL is now 84 and too old to take care of either of our two - plus she has little underdstanding of their condition. I am now the main carer for my Mum so she's out of the respite frame. I am an only child and Terry never sees his family. My eldest is our respite but mostly he takes care of our Middle Son. Terry and I managed our first night out for a year when Matt slept over at Boys Brigade last month, even then David was home alone so I kept ringing home. We also home educate so there is never any free time for us. Mostly we just get on with it and I try hard not to think about how it might be because it leaves me feeling :crying:

 

Our SS actually states on their website that they do not offer services to children with AS or HFS :angry: as they do not come under the remit of Children with Disabilities

 

Oracle

Edited by oracle

Share this post


Link to post
Share on other sites

The way both myself and my Hubby were dragged up I wouldn't want them to look after my kids. Mind you they wouldn't anyway. I remember my mum saying "don't ever ask me to babysit, I've had enough looking after you lot" she said it often and it stuck in my head, I was only a child at the time.

 

So no we don't have any help at all, in fact we no longer have friends either. I spend a lot of time looking after my 4 kids, 2 with AS, on my own as Hubby works away in France.

 

It's hard work ain't it?

Share this post


Link to post
Share on other sites

Yup, same here. No family living near by, and although my parents and in-laws are only an hour away they keep well clear. Sisters, brothers, friends just don't get it.

 

We get support from SS by means of Direct Payments, but even so it is not enough and we never get to go out together or get much respite at all. We just manage to hang on in there (barely at times).

 

It ###### me off when the GP or whoever say, well can't you get the grandparents to take them for a day? Can I have a compulsory prescription for that, please!!!

Share this post


Link to post
Share on other sites

I have no family to call on and most of my friends also have children with Autism.Although I have some SS input,it isn't going well because they are telling me that the care has to be in my house and I want him to go out and about.xx

Share this post


Link to post
Share on other sites
It ###### me off when the GP or whoever say, well can't you get the grandparents to take them for a day? Can I have a compulsory prescription for that, please!!!

 

Me too! What planet are they on??

 

The GP asked whether my parents or inlaws could come and help when my son was born. I've never had a mum to help - she died when I was 15 and my dad has mostly been a long distance away in a different country. In laws will help occasionally but only on their terms. They loved L when she was a baby and little girl as she was very pretty and they could show her off. Now they're terrified of her. We have cajoled them into allowing us the odd weekend away so I suppose we're lucky.

 

Mostly we muddle along without help.

 

K x

Share this post


Link to post
Share on other sites
Me too! What planet are they on??

Mostly we muddle along without help.

 

K x

 

Same here they just would not be able to cope and my friends have never really offered!!!! to difficult i guess

Share this post


Link to post
Share on other sites

There's mainly me and hubby as well. His parent's are deceased and i'm happly astrainged (sp) from my family :D . But before that happened, my "mother" couldn't accept that the problems were genetic as it would mean that there was something actually wrong with her 'family'.

 

And hubby and i are both kinda anti- social so we not big on the "friends" front. The way i feel is that sometimes the ppl you met over the computer are more of a family then my actual family.

Share this post


Link to post
Share on other sites

nope i dont get any help at all love, im disabled too, was told theres no help in my area for children with aspergers.....ss wont help but im fighting ....good luck love , hope you can find some .....i know how hard it is, dont give up!!!!

big hugs,

paula :wacko:

Share this post


Link to post
Share on other sites

We have two possibly 3 asd children, we have one set of grandparents who are horrible ,treat kids differently, treat them like naughty children and laugh at them cos they cant dress themselves or hold a knife and fork due to dyspraxia. they have never once offered to take our children out, so no we have no family to support us. i have 2 great friends one lives however in austrailia most of the time. the other i couldnt do without her children have some similar difficulties and our kids are best friends and we see each other every day. other family members have not bothered since we got a diagnosis. hubby works all week and i work weekends so we dont even get a meal together. so yes we dont get much support. we go to an autistic playgroup and have made some great friends there as they are in the same boat. we were offered by social services a family support worker to give advice on parenting and services mmmmh dead useful.

so not only do we have to fight for diagnosis, fight for education and fight for services we have little family support and very little time to make new friends. social life is non exsitance.

Share this post


Link to post
Share on other sites

Couple of other respite options-NAS provide activities in some areas you could try the NAS website.In our area there is an out and about scheme where children get to go out and do activities that would be a challenge for the family Eg bowling and family can have a break on Sat .It does seam hit and miss whether there is anything in your area. >:D<<'> >:D<<'> Karen

Share this post


Link to post
Share on other sites

im a single mum-and dont get alot of help from family .

my parents are too old and my sis got the same problems with her son.

i do have a lady take my son out 2 hours a week -when she can fit us in-through social services disabled team.

 

now hes turned 5 he can join friends for lesuire -so he will be going out a day a week ect,,,, over summer hols-local charity for disabled children -aim to include them in social activites.

Share this post


Link to post
Share on other sites

i'm another in the same boat,only people who even offer to help with DD to give me a break are my older DD's,i'm a single mum amd DD's father thinks coming to see her for an hour on sunday is him doing his fatherly duty!!!to be honest he wouldn't have a clue where to start anyway!! I don't like asking my other girls too often because they've got their own lives to lead(ages 21,18,15)so it can be really hard work!!

Share this post


Link to post
Share on other sites

this is amzing, i have been in floods today, why are my family not helpful, they think they are but at the same time noone will actually ever help how i need help, they offer to baby sit but never will, in fact i find it desperatly upsetting at the moment how all the family dont get it, what the difficulties are and probably think i make it all up, then the only other peopl i see are the health professionals who tell me how autistic the kids are and how i should have support and respite and allsorts. and then there are no friends, today i feel i am stuck on this strange island completly isolated and all this life going on around me.

and blah blah blah. sorry ive just had it today. i dont know where i go from here today. i feel very depressed. i only want a bit of a life in a place that i feel comfortable with just a couple of people around me who understand it all..

Share this post


Link to post
Share on other sites

sadly I know how many of you guys are feeling also, families come in all shapes and sizes and just dont seem to be able to cope with some stuff. I have an identical twin, growing up we were inseperable, thought we couldnt live without each other, but since diganosis we have barely shared a word in person or on the phone, we recently shared a birthday and only communicated by post and email, anything has become unbearable? I dont know if its the autism or something else but it feels mean from where I am standing, my mother lives in Oz and father is buried there, as do most of my family so no real help from them, my ex hubbie and his family also remote.

Share this post


Link to post
Share on other sites

lotty, you are not isolated because we are here. We do understand it all. someone has already mentioned that it feels like this forum is a family.

 

If the professionals are saying you need respite and care etc, ask them how. Get them to make referrals, to give you contacts, names and numbers. And again, if people offer to babysit, make them put their money where their mouth is. Not easy, I know, because I myself am a very private person and I hate having to ask others.

 

We're here, Lotty.

 

Lizzie xx

Share this post


Link to post
Share on other sites
this is amzing, i have been in floods today, why are my family not helpful, they think they are but at the same time noone will actually ever help how i need help, they offer to baby sit but never will, in fact i find it desperatly upsetting at the moment how all the family dont get it, what the difficulties are and probably think i make it all up, then the only other peopl i see are the health professionals who tell me how autistic the kids are and how i should have support and respite and allsorts. and then there are no friends, today i feel i am stuck on this strange island completly isolated and all this life going on around me.

and blah blah blah. sorry ive just had it today. i dont know where i go from here today. i feel very depressed. i only want a bit of a life in a place that i feel comfortable with just a couple of people around me who understand it all..

 

Sums up how I feel somedays too :( Hang in there hun >:D<<'> >:D<<'> After reading many of the replies on this thread I'm left wondering what is it with family and friends...it seems such a common occurance :( Is it an inability to understand, fear on their part which makes them withdraw, do we someone change as a person or family so relationships falter, do we somehow push people away without realising it?? I gave up trying to fathom my own family and friends out :wacko:

 

Quote from a book I read when my dd was first dx, found it invaluable,

 

"It is normal to be afraid and to feel alone . Just for today remember that you are not alone; others have walked the road you are on now. Even though they don't know you, their love is with you"

 

Changed by a child ~ companion notes for parents of a child with a disability Written by Barbara Gill

 

Huge >:D<<'> >:D<<'> >:D<<'> to all ...thank god for the forum :D

Edited by Bagpuss

Share this post


Link to post
Share on other sites

I dont qualify for shared care and repite either. mY mum died 2 years ago and she was my best friend as well as my mum so is very much missed - she was fantast ic with little p.

Hubbys parents are disabled and not able to help. Hes from a big family 7 kids but non of them have a clue my new sister in law is lovely but rarely offers they work shifts and now her son is going to be a dad thats where her loyalties lie.

My eldest helps a bit but whaen she goes to uni I really worry what we will do!

 

Social services do not what to knwo about disabled kids in my area and sure start are obsessed with the disadvantaged- we live out of the zone

Share this post


Link to post
Share on other sites

I have family and friends but at times it feels like I am alone in the sense that they may offer occasionally when things have hit rock bottom to have children for few hours or an overnight visit but it's never really worth it in the end. And I have noone to talk to about problems apart from friends who are going through similar with children with special needs.

 

My mum lost it with son the other day and ended up smacking him because he was being defiant and would net get in my car then my sister was shouting and screaming a thim the other morning it ended both times with me arguing and getting upset. I know I need to give up on their support because they don't know how to cope and the only way they cope is by getting angry with him.

 

Social Services want a family conference to try to get family to help but I know it's a bad idea as they all have enough of their own problems. Their dad who i'm not with anymore is unpredictable and has them when he wants which annoys me but if that's the only way my children get to see him and I get a break then I have to go with it despite social services putting in support packages for him and paying him to have them on a regular basis.

 

Social Service are now helping but I think this is mainly due to lots of letters of complaint and almost cracking up and son being out of education.

 

Now he's back in education at 1 hour a day although i'm still not sure if it will be evry day of the week yet i'm hoping they wont discontinue the respite worker that we have.

Share this post


Link to post
Share on other sites

I don't have any local support at all. However, I'm lucky in that my mum will come and stay regularly and that gives me a break, or the opportunity to do things with each of my children individually. She lives on the Isle of Wight so it all has to be planned; but there have been occasions when I've really needed some help with something and my mum has dropped everything to come over. She can get from her house to my house in less than 3 hours so it's not so bad. The only down side to that is that she stays with us, and while most of the time it's lovely, it does bring it's own brand of stress! The ideal situation would be if she lived down the road.

 

I honestly don't know how I could have coped without the help from my mum, and I really feel for those of you who don't have that. It took a long time for her to understand William's difficulties, and even longer for her to acknowledge that Luke even has difficulties; but she is a very indulgent, organised, loving grannie and totally indepespensible! I realise how lucky I am, and just wish you all had the same.

 

Lauren

Share this post


Link to post
Share on other sites

My husband and I care for 2 sons both receiving highest level of DLA plus his elderly Aunt with terminal cancer and receiving highest level of attendance allowance without help. The OT from SS asked who else helped out when she came to assess for a disabled facilities grant and there was a stunned silence when we informed her nobody. The same from the PCT nurses who occasionally turn up to assess Husband's Aunt. Husband hasn't any relatives, my family all live too far away to help, and as for friends, they all went missing when life became difficult.

 

As Oracle says A is now educated in the home so it is a full time 24 hour a day job. There are days when I'm too exhausted to think and days or nights out for husband and me on our own are definitely something that is too far in the past to remember.

Share this post


Link to post
Share on other sites

It's interesting that I was only just complaining to my husband about how rubbish my family are when it comes to helping out. You'd think having lots of sisters (one who's a consultant child psychiatrist!) would have been of some use, but I'm afraid that hands-on help has been very scarce.

 

In fairness, I think that because I give a very good impression of coping and don't ask for help probably has had an effect. Further, because I am so tied up with my immediate family I am not in a position to help them out much either.

 

So saying, the occasional invite would not go amiss!

 

Barefoot

Share this post


Link to post
Share on other sites
Guest hallyscomet

Hi Mich >:D<<'> >:D<<'>

 

Why not join the rant :lol::lol::lol::notworthy::notworthy:

 

Reading your post brought back a lot of memories about how it was. My son was diagnosed and in the next breath I was separated from my husband, thrown into a support group after two years of the merry go round of assessments to be told by a woman discribing her child and mine to a T that he was Autistic, you could have pick me up off the floor. My sons Paediatrician tried to just cover it up and only said it was ADHD as he spoke to my husband for 40 mins on the phone after his assessment and he had the gall to tell this doctor about our split before I got to hear about it.

 

By choice I chose to step back from my family and friends as I always went away feeling sad as I could see their eyes were on my son, even in social situations like a music group I felt my son was discrimminated against and they didnt know he had a disability. It wasnt until my boy turned 12 that our Paediatrician had the courage to tell me the truth as my son became non verbal all of a sudden, or he would talk but just a lot of babble came out. He started calling it Aspergers but as time went on he was calling it Autism Spectrum disorder.

 

My mum has been a wonderful support by phone, but she hates seeing us suffer, and she has seen us go through some times where I felt like crawling in a corner and crying for a month. As it can be painful watching your child be treated as 'different'

 

I CHOSE to 'GET UP" AND STOP CALLING MYSELF A VICTIM, I booked myself into Personal Development Courses that built up my self esteem. Read books, became actively involved in workshops and involved my son in Early Intervention from the age of 5. You just have to stop worrying about family, and believe in yourself, that you can do it. My family unit is small but it is strong, and there is a lot of love there.

 

Just have to keep believing in the good of it all, like the Poem "Welcome to Holland" it is a beautiful place.

Yes I get frustrated sometimes and have pangs of regret and the life I used to have in Paris, but I have found my hobbies and spiritual interests and friends far greater than a family that are too ignorant to care or love what we have.

 

I feel my family are embarrassed, and just dont know how to relate to my boy, thats their loss. We are doing fine without them, I filled up the void with many other things, and I can say, I am a very happy person.

 

At the end of the day, I love my children to bits and if I had my life to live over, I wouldnt change a thing. My Aspie boy has taught me so much, and I treasure that. Yes I have had my ups and downs, it isnt always easy, but I am happy. Sorry about the essay :lol: You have to keep believing in yourself, and we are always blessed with a new day, and lots of little blessings we need to keep our eyes open to. :pray:

 

H. :)>:D<<'>

Share this post


Link to post
Share on other sites
lotty, you are not isolated because we are here. We do understand it all. someone has already mentioned that it feels like this forum is a family.

 

If the professionals are saying you need respite and care etc, ask them how. Get them to make referrals, to give you contacts, names and numbers. And again, if people offer to babysit, make them put their money where their mouth is. Not easy, I know, because I myself am a very private person and I hate having to ask others.

 

We're here, Lotty.

 

Lizzie xx

 

Oh thankyou, today i feel like moving far away then at least i would know that was a good enough reason not to have family help.

it does make me feel better that its not just me >:D<<'>

Share this post


Link to post
Share on other sites
this is amzing, i have been in floods today, why are my family not helpful, they think they are but at the same time noone will actually ever help how i need help, they offer to baby sit but never will, in fact i find it desperatly upsetting at the moment how all the family dont get it, what the difficulties are and probably think i make it all up, then the only other peopl i see are the health professionals who tell me how autistic the kids are and how i should have support and respite and allsorts. and then there are no friends, today i feel i am stuck on this strange island completly isolated and all this life going on around me.

and blah blah blah. sorry ive just had it today. i dont know where i go from here today. i feel very depressed. i only want a bit of a life in a place that i feel comfortable with just a couple of people around me who understand it all..

 

Hi Lotty, I'm feeling exactly the same as you at the moment, I know that's no help to you or me, but it's good to talk about it at least! :wacko:

It is so isolating sometimes, isn't it. It makes it worse sometimes when people are there but they just don't seem to see it or understand the problems. My DH's parents seem to think all my son's problems are a figment of my imagination, they don't seem to have any idea of how it really is, it's so frustrating isn't it :wallbash: They don't live near us so don't see him that often and so they don't know about all the little day-to-day problems that make life so depressing sometimes and when I try to make them understand they just get annoyed with me because they think I'm moaning!!

Chin up, at least WE understand you and can listen. >:D<<'>

 

~ Mel ~

Share this post


Link to post
Share on other sites

We don't get a lot of help from family or friends either - I find that only other parents with ASD children know what it's like.

 

We still get - they play you up; you have them spoilt;I wouldn't let her do that and all the rest.

 

Mum took my 2 out after school for an ice cream as we had to go meet next years teacher (at our request may I add). She had them for an hour and said it was terrible ( well AS daughter was terrible). They don't normally see her on school days as we usually have to come straight home and "chill". I said mum that is what it is like evryday for me.

 

My 4 year old just constantly reacts to Rachael's sometimes unreasonable behaviour - everyone thinks she is naughty, but she is constantly under pressure by Rachael.

 

Today we had to go for new carpet (school is already finished here in N.I.). my husbahd is off this week (but that quite ofetn adds to the problems). We were trying to pick carpet, while she was tearing full speed around the carpet shop - trying to climb on rolls, wanting her shoes and socks off to feel the carpet and so on. I had to go to one more shop when we came out - and she totally freaked out :tearful:

 

Right now I feel like crying my eyes out - what will my mother say "they get away wtih too much" :crying:

Share this post


Link to post
Share on other sites

i too get no help at all all my mum says is hes doing it for attention or you take too much notice of him i tend not to tell her too much then every now and again i will let her know just what he has been doing but we dont see her much anyway mil is jus the same a flying visit every couple of months my two sisters dont want to know and hubbys sister lives too far away and hasnt got a clue about us . i dont have any friends but i really wish somebody would take him out for a few hours now and again.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...