My family are ignorant in Denial

[Guest hallyscomet]

Hi

At the age of two my son was admitted to hospital this was the onset of Autism for him he was diagnosed with Autism at the age of 4 by the time he was five they were saying he is Severley disabled by ADHD, that was fine I had the best doctors and therapists assisting him. By the time my son was 12 he was diagnosed with Aspergers they changed his medication and he was fine again. Then he had the MMR booster at 15 and was all down hill for 2 years ruining year 9 10 & 11. Through the help of his wonderful doctor and Psychologist and communicating with Teachers he is slowly getting there. The doctor was telling me it was Autism again and advised me to go to the Autism Association for help and support. As well as dealing with this to add salt to the wounds my husband left and moved in with another woman as soon as my son was diagnosed at the age of 4 1/2 my daugnter was almost three.

 

WHAT BUGS ME WITH ALL OF THIS is that my family haven't been there for me once, it is as if they were getting on with their own lives and just didn't want to know. This is my sister, brother and father & step mother. My mother only talks to me on the phone. She never invites us to her home she may visit us 1x a year only through some persistance of me. I think they all have AUTISM AND JUST CANT HANDLE IT..... IT MAKES ME FEEL LIKE SCREAMING. I have been seeing a counsellor to talk about it, and she can see the pain I have been through and relate to me about it. My family. NO WAY!!!

 

The rift with my sister started because she completely controls everything my mother does. Like she is alway competing to be no. 1 had the cheek to say my mother didn't like coming to my home because she felt uncomfortable. ((Reality check please. my response... I was unable to afford to fuss over my mum, like my sister because I was a single mum and spending a fortune on medication for my son and all the bills that all single parents face with no support.))

 

My daughter now 15 feels angry with them also. I remember saying a few words to my mother about my sister and my mother went straight to her causing a rift, and my sisters daughter who has just completed University and done a Science Degree in Psychology rang me up and told me to take responsibility for my life. As if I am not all ready. Thinks she has the right and authority to ring me up like that since she has a ###### degree. It ****** me off....... Her motivation was because I rang my sisters ex husband as I needed to find work experience for my son I rang at least 50 computer companies and they all said no. So I rang my ex brother in law as he works in the field of computers as he knows about my sons condition asking for some suggestions on what I could do. This is when I received the phone call from my neice telling me to stop calling her family and to take responsibility for my own life. (Please explain!!!) I am just trying to help my severley disabled child. I told her never to come near my family again...

 

Can anyone give me some advise as to why my family are so ignorant, it is as if they think I am making the whole thing about my son up. Regardless of the fact that I have pages and pages of assessments etc proving so.

 

Helllllllllpppppppppp.... Please

 

Hailey

Edited November 2, 2005 by Elefan

[nellie]

Hailey, <'>

 

I think most people on this forum can relate to what you have just said, I certainly can.

 

I've had this problem for 27 years, 8 years ago when my eldest was 19 I changed my attitude. I discovered you can't change anyone else, only yourself. In time I gained the confidence to say it doesn't matter, I accept that they don't understand, I accept the way they are, for they know no better.

 

It's tough, especially if you're close to your family and you want their love and support. When they don't acknowledge what you're going through or how you are feeling, it is like a rejection and it bleeding well hurts. I'm sorry, I wish it didn't.

 

Nellie <'> <'>

[Suze]

Hailey <'> , there are members of my family too who never ask , enquire, or discuss my sons problems with me. One had the cheek to say they wished their child could have 1.1 support in class like mine does, (bet they don,t want the heap of problems that go with it ).I hope the counselling helps, remember to have some time for yourself , try not to let Autism and your family swamp YOU.Take care Suzex

[bid]

Hailey <'>

 

I posted something along similar lines in the Help and Advice section just last night

 

I know it's not healthy for me, but at the moment I keep going over and over all the 11 years worth of comments and complete lack of support

 

Perhaps it is a sophisticated form of denial on their part??

 

I don't know, and I wish I could offer you something more than my empathy and sympathy <'>

 

Bid

[Jadensmum]

I can sort of relate to this as although I am very close to my mum....my dad, brothers and sister have always been in denial I think, either that or they just don't want to know about J.

 

My son's dad left when I was 7 months pregnant and left me with a busy pub to run. I worked 7 days per week,cooking, cleaning, bar etc and worked right up until the day before J was born and went back to work the day after

 

I didn't get one offer of help from any of them. All I got told was "You're strong - you'll be fine"

 

I had to carry on working until I got rid of the pub - which nearly sent me insane in the process - aswell as J being diagnosed with Epilepsy and it was obvious (looking back) that he also had Autism.

 

Since he has been diagnosed, not one of these relatives asks about J or how he is doing - even though I see them quite often. My dad is very "old school" and I don't think he believes that Autism exists But to be quite honest I now can't be bothered to educate him on the subject.

 

I think a lot of the problem was and is (apart from the fact we weren't particularly close in the first place) that I felt I had to be strong and failing wasn't an option and this is what everyone saw. Therefore, they thought I was coping perfectly well as I am the "strongest and most independant of the lot" and they didn't need to offer their help.

 

I think my dad thinks I am just like him - keep quiet and get on with it - which I am to a certain extent (although I am a much nicer person )

 

Ooh look at all these issues surfacing - I could go on forever!!

 

I think Nellie is right you can't change other people.

 

<'> <'>

 

Denisex

[oracle]

My Dad always used to say that you can chose your friends but you can not chose your family and for better or for worse we are stuck with them. I think that he was correct.

 

As an only child I do not have a problem with siblings and although my Mother can be trying (VERY) she does her best to understand. Hands on support is out of the question as she is not in the best of health. I now look after her on a daily basis. Time out is something we never have. Hubby's Mum is 84 deaf and rarely visits because she can not climb the stairs. Hubby also has 10 brothers and sisters but most were adults before he was even born with families of their own. However he does have a sister who he was very close to but she now lives away. This however does not stop her from displaying blatant favouritism towards his daughter from his first marriage. Matthew will receive a small token gift at Christmas while his Sister wears the very expensive jewellery bought for her by her aunt.This upsets me a great deal but hubby can not understand why. My Step Daughter leaves me looking like Cruella Devil. She is more concerned with 'me' time with her Dad than anything else to the cost of everything else - but then he is her Dad.

 

I actually receive more support from my very elderly relatives who have accepted David and Matthew warts and all. Being in their 80's they are all to old and frail to give hands on support but they do it in different ways. They often ring and ask about the boys, they are all very 'into' my campaigning and I know if ever I need to talk they are there to listen.

 

Apart from that we are very much on our own and sometimes I feel that we are lucky

 

Carole

Edited November 2, 2005 by carole

[reuby2]

Hi,

I just wanted to say that I understand how you feel.I also have problems with my family and their attitudes towards my son. I have come to the conclusion (after many years) that I can't change them.I get so angry because it hurts me so much but i have learn't (and am still) that I have had to let go of my assumptions e.g That my mother should offer support, my brother should want to see his only nephew and understand that they have there own problems and reasons why they are unable to give me what I need. I have tried to forgive them their failings towards me (although they would never think they have done anything wrong) and instead looked towards other places for my support.I have only just joined this site but already have found so much help.I know that we expect our family to be there for us and to be fair, but unfortunately not everone's family are.

Take time to appreciate yourself and don't keep trying to make them what they should be (like i did) but acknowledge their failings, otherwise you will constantly be hurting yourself.You need people who can support you, who understand and who care.

Keep going you are doing great!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

P.s If your sister is No1 let her be it.My brother has always been No1, can do no wrong.I argued for years because of the difference in the way we were treated ,now i just let them get on with it!!!!!!!!!!!!!!!!

Regarding your niece with the pychology degree........There is a huge difference between knowing something on paper and experiencing it in real life !!!!!

[oracle]

Regarding your niece with the pychology degree........There is a huge difference between knowing something on paper and experiencing it in real life !!!!!

I keep telling myself that now that my Step Daughter is studing for a Psychology Degree - but it's not always easy to remember that and be calm when someone thinks they know it all six weeks in a degree course

 

Carole

Edited November 2, 2005 by carole

[Flora]

I think it's a mixture of denial and just plane ignorance. People in my family who I know love and care for me and the boys can at times be hugely irritating with their comments and 'advice'. I reckon it's only been the past 6 months that my mum has finally come to understand the problems and the pain we go through; I think though her previous lack of understanding was more to do with fear and denial. However, there are other people I have contact with who just don't want to understand; as far as they are concerned they see two boys who look normal, often act normal, but are sometimes just very badly behaved and hyper (that's what they see, that's not the way it actually is). I have made efforts to explain it to them, but it's impossible to describe because it's to do with daily living, it's no one thing that can be seen (like cerebral palsey and a child in a wheel chair). I'm not sure how to deal with it, I'd like to ingore it but it's hard because I'm not that sort of person (if someone doesn't get it I want to make them get it! ), it's also hard to take it lying down if someone calls your child selfish!!. Hopefully eventually I'll be able to take a leaf out of other books here and just turn the other cheek

[Guest hallyscomet]

Hi

Thank you for you replies. you realise that you are not alone, and that others have the same frustrations with relatives. It is lovely to come here and feel safe to say way your feel, and to see so many of you take the time to come forward and acknowledge how you feel. Its a great support.

 

 

Anyway I am going to take myself out to day and have a good day and remember to do something special for myself. I hope you do too!!! <'>

 

Keep smiling as I intend to....

 

Thanks

Hailey

Edited July 18, 2006 by hallyscomet

[katysmum]

hi

I can relate to this too. I have a large family and I no longer have contact with any of them, apart from one sister in a different country.

At first, after diagnosis of as, my mum suggested tranquilisers as a cure for it!! ignorance is bliss eh?

Since then the rumour mill has gone into overdrive and the latest news is that there is nothing wrong with Katy and we have made it all up!! After all, she looks "normal".

Maybe this is just being in denial, but it sure doesn't help.

sharon

[Kathryn]

Hailey,

 

Wow, you have a lot to deal with - it must have come as a complete shock to get this news about your family, to say the least. I think you're right, you have to get on with the present find creative ways to enjoy life and and not let the past drag you down. We are not responsible for our parents' mistakes and problems.

 

K

[Guest hallyscomet]

Hi Kathryn,

 

Yes it was a shock.. I just feel numb now.... coming to this forum is at least getting my mind off it.

 

Hailey

[treetree]

hi i know excatly what you are going throgh my sister in law/mother in law are excatly the same and you judt feel like slapping a stinky fish round there chops and saying hello anyone in ther e anyway my name is Teresa and im a mum with 3 kids ,lauren 10, alicia 5, brad 1, tOMORROW im going to have my daughter reassed at the child development center and im petrified ,she was suspected of having aspergus and pdla in april this year scince then they were going to moniter her on thursday morns at school and at home but this six weeks hols she has been an absolute nightmare ,she does the norm,routines has to be first ,goes in to her own world,got no sense of danger ,covers ears up when lorrys , buses go buy and sits on the floor refusing to move she throws tantrums gets frustrated loves to spin things doesnt here me when i call her but she has passed her hearing test she was a late developer at walking crawling speaking only happened after 18 mnths old ,has no concentration ,she carnt read between fact/fiction ,has obssesions,will only eat certian foods ,has trouble going to loo for phoos god the list goes on and on i had big almighty fight with sisterin law because she said nothing wrong with her and she not thick ,iknow she not thick in fact she highly intelligent and has a great iq and a very good passion for music and singing ,painting ect ijust feel as thou im on my own and get no support off anyone except my two good friends jayne and marie who can see i need help support . I do live with my partnerof 13 yrs and sometimes yes he does help but not enough i needed him to come with me tomorrow and he said he would only now he said forgot all about it and carnt get time off ,i realy peed off with him and told him to find out what more important the family or work i think i was very harsh but its only cause i petrified anyway thanks for listning , but i think he in denial something a missi dont know if you have read my other posts but this past 6 months have been a night mare and im starting to see a light only a small one mind you but it will get better just ignore them you know your child better than anyone as the child asses ment lady said to me today so heres a big <'> <'> to you from me teresa

[Guest hallyscomet]

Hi Theresa,

 

Dont be afraid of the outcome of the assessment, whatever it is say to yourself "I'll Handle it" and you will. You can always come here if you need some advice or just to talk and get it off your chest. Once my childs assessment was done it was a big relief, my son was exactly like your, it is a processing problem thats why your child doesn't acknowledge what you say. In a normal child the conversation you have with them go from say A: to B: then they answer you, with our children when you talk to the the message stays at A: and doesn't get to B: being processed by the brain. What happens is that an enzyme eats up the message so it just doesn't get through. My son was put on Ritalin and then Catapres as well. After this I asked him a question as we were driving in the car, I said do you see those children getting on the school bus, and for the first time he answered me and said yes, but then he replied did you see the doggy too mummy. I had tears in my eyes as I knew the medication was working. Prior to this I was taking him to speech therapy, Occupational therapy, diet food and allergy, put him on the elimination diet. These were important, but didn't make any changes to him. The doctor said it was like connecting up a loose wire and now he could communicate. He needed to take the Catapres because there was still a lot of the Autism stuff interfering, but when he started taking this he appeared like a normal child for the first time since he was two years old. He was fine before the age of two, thats when I noticed the changes in him. I believed the MMR injection caused all these changes in my son. If you read my post in Gen Disc about my son now 18 who had a reaction to MMR you will see some children cannot cope with the metals like mercury in injections.

 

Let me know how you get on, if you have any questions hopefully I will be able to help. Many others will also, thats what is so good about this website, they are so caring.

 

Keep a smile on your dial, and take yourself out and have a great day, don't let people judge you - those that don't know your son as well as you and your Doctor. find one that is the best because this will be a lifelong relationship perhaps. My son has been seeing his since the age of 18 months. He was the one that took me off the merry-go-round of confusion and diagnosed my son. From that day on listen read and read and be confident, you can do it. <'> <'> <'>

 

Love

Hailey

[treetree]

this is what happened today and im sat here with a can of larger more relaxed than i have been for along time well they came my heart was bumping nervouse as hell and they were great one lady stayed and played with alicia whilst the other ladyspoke to me in the kitchen she went through the questionair i had to fill in from birth to present and said to me i had a lot to deal with and yes there was problemsi told her i had been on this forum and i should just give her the link because evreything on here describes alicia to a tea but also what i had done the other night and why i didnt think about it before was to record alicia lining up all her misters and moving from room to room to having a reaction to some one knocking them over to what she did and how she reacted and my advice to anyone is to do this as it shows them in a diffrent light to what they might see for 45 mins to an hour the woman who was watching alicia said it was amazing as to what she had seen whilst playing with her was totally diffrewnt to what she had just seen,They also asked me to see what her reaction would be to turning the tv off and she got angry and told them to turn it back on they dropped somthing loud to see what she did with the noises as she covers her ears ,now im totatally relax and feel like a weight has been lifted of my shoulders but they said there was somthing not right and they will let me know next week with the results and to take someone with me as its a lot to take in so well see what happens have told my partner about what has been said and hes changing his day off to come along and support me

[Kathryn]

Teresa,

 

You sound relieved! It sounds as though the assessment was very thorough and that they were able to get a true picture of your daughter. Well done for doing the recording.

 

Try to relax now till next week.

 

K x

[treetree]

today i woke up fresh as a daisy happiest ive been for a long time and feel as thou a big weight has been lifted of my shoulders going out tonight for a drink with the girls so gonna let my hair down and get drunk tipsy for a change lol

[Guest hallyscomet]

Hi Theresa

 

Thats great news you seem relieved. I'm pleased your hubby is going with you, its helps to keep them in the loop, and makes it easier for them to understand.

 

Cheers

 

Hailey

Edited November 5, 2005 by hallyscomet

[treetree]

went out thought it was brill no headach at all will let you know what happens thurs thanks teresa

[gvce]

i know how that feels - everyone thinks C is normal and wouldnt hear any different - they just think me, the teachers, the sen and the doctor are talking cr*p!

[treetree]

best bit about this thou my mother in law doesnt believe me and came for the assesment back in sept (i only let her come to open her eyes)and driving home ha got to laugh now because she hadnt put the child loc on in the car alicia opened the car door while we driving home good job id got fast reflexes and was talking to her the other day regaurding alicia getting her diagnosis and she told me after all this time that she puts thngs in line s when she was younger can you believe it i sy its on there side not mine

[Guest hallyscomet]

Hi Theresa,

 

Keep that child lock on, these kids tend to run like Forest Gump, read Carole's funny story about her child that got out. I put mine in, in the end.

 

Thanks for your reply.

Hailey