Anyone else feel like this?

[butterflycake]

Some mornings i feel like not getting out of bed as from the moment i get up i cant get Autism out of my head and why did my son get it. Im so sick of seeing kids born the same time as him walking and talking and interacting and my son cant. I cant help feeling bitter. Does anyone else feel the same and how many years will it take me to be ok because at the minute, myself and family members both think im never going to be the same again.

[Sarah666]

Some mornings i feel like not getting out of bed as from the moment i get up i cant get Autism out of my head and why did my son get it. Im so sick of seeing kids born the same time as him walking and talking and interacting and my son cant. I cant help feeling bitter. Does anyone else feel the same and how many years will it take me to be ok because at the minute, myself and family members both think im never going to be the same again.

 

Hi butterflycake

 

I fully sympathise with what you are going through. I too am constantly seeing other children the same age as J , and the difference between them is so obvious.

 

We still dont have a diagnoisis on paper, although the psychiatrist has indicated that J has ADHD with autistic tendencies (whatever that means ) At the moment we are going through a really bad time, I dont know if its because its just been Xmas and a new term at school, but J seems to be so so angry and stressed all the time, and its having an impact on the whole family. I feel like going to bed and not getting up for a very long time .

 

I understand you feeling bitter, because I do too. I feel like a spoiled kid, tantruming about how its not fair on us all, and then I feel guilty for feeling like that

 

Im sorry I cant give you any help with how long you are going to feel this way. I often wonder the same thing myself.

 

I do know, tho, that there are a lot of people here, who have been in the same place you and I are at the moment, and Im sure that there will be some great replies with offers of help.

 

Take care butterfly

 

love Sarah xx

 

<'> <'>

[reuby2]

No advice but sending lots of <'> <'> <'>

[cmuir]

Hi

 

My son whose 5 was diagnosed back in May last year with AS. I still feel exactly as you do. I envy people with NT children, who can do normal things without giving it a second thought. I really feel bitter because I think an invisible disability is one of the worst to have. If you have a child in a wheelchair, they get almost an automatic sympathy vote. If you have a child with AS or Autism, you don't get sympathy - you get people looking down their noses assuming that you're a useless parent and that the child is simply naughty. That may be cynical, but that's how I see things just now. It didn't help having a clinical psychologist from CAMHS coming to my house yesterday telling me that my anxiety is the cause of most of the difficulties! I explaining that my anxiety happens because of experience eg my son attemping to run on the road in front of an oncoming car, holding a knife at his neck, a fork in my face, etc etc!!!

 

I don't resent Robert at all - I love him dearly, but I do wish that he didn't have AS because of the difficulties that we face on almost a daily basis.

 

Sometimes I feel like I want to crawl under a stone and not come out. Life isn't like that. It's very much about not looking too far ahead, taking one day at a time, learning to be thick skinned, and protecting and looking after the interests of my son and family.

 

I know that's not a very positive response, however, you're not alone. We all have really difficult periods. I hope that in time things get easier.

 

Best wishes

 

Caroline

[oxgirl]

Hi Butterflycake, sorry you're feeling like this. <'>

 

Don't despair though, it's not always going to be constant and non-stop like this. For me it tends to go in waves and I go through phases of feeling just like you describe, but then inbetween these times there are other times when feelings of acceptance and peace of mind can dominate.

 

At the moment I am obsessed with my lad's lack of friends. Like you say, I wake up in the morning and it's on my mind and it's with me all day unless I try very hard to distract myself with other things, otherwise it's like a broken record going round in my head, 'he hasn't got a single friend, he hasn't got a single friend' and I want to scream and shout! What I suppose I'm trying to get at is, that you need to find something else to fill your mind with and to take up your time, maybe something for YOU that can distract you. I'm not saying that will make your feelings go away, but let's face it, our childrens' autism isn't going to go away either, it's just a matter of coming to terms with it and making peace with it and not tormenting yourself with it.

 

I know that this time next year I won't be having the same feelings about my son that I am now, and things will also change for you and your son, things will happen that will make you feel more positive. There is a light at the end of the tunnel.

 

Good luck, I hope you start to feel a bit less weighed down with it really soon. <'> <'>

 

~ Mel ~

[Bagpuss]

Butterflycake <'> <'> Give yourself time, who knows if you will ever feel the same again. Traumatic events all leave their mark on us, change us, shape us, make us what we are. I agree with Mel, in that I too have times when I feel very low, and other times when I feel I have some peace. Not sure if its acceptance, but there are days in which I feel I can move on, and other days when I feel I'm drowning in autism and muscular dystrophy, and can't see any light at the end of the tunnel. Talk, talk, talk, to those around you, be open about how you feel (something I regret not being), gather support from where you can......I've found our local support groups to be a great help, try and do something just for you....things you find enjoyable, also take time out for you and your other half if thats possible, always, always remember you are not alone. Take good care of yourself <'> <'> <'>

[V1971]

I could have writeen that myself, I feel exactly the same. I love my son dearly but life is hard and when I see my friends enjoying days out, park, zoo, etc. I feel envious and sad because my son is missing out so much. It is hard! {{HUGS}}

[dooday24]

i thought id feel like that but i think because i have worked with adults with learning difficulties 4 12 yrs and my friends child has asd. i just felt relief that somebody finally listened 2 me and also reece nearly died as a baby. i just feel honoured 2 be his mum, i do feel at times it would be lovely 2 just do things on the spur of the moment which u cant do with reece and also going out as a family can be a disaster at times. and also i get guilty as i dont spend enough time with shannon. but i know i will do the best i can 4 both my children even at times i would like the ground 2 swallow me up!! good luck lv donnax

[jlp]

As others have said it comes in waves for me. Sometimes I am eaten up with worry and it's rattling around my head constantly, my current worry is G is being assessed for a statement ans whether we should move him to the local asd unit and that seems to be ALL I think about and I can't get to sleep for thinking.

 

Other times I'm ok, mostly fine and getting on with life.

 

As other people have said I do feel bitter and sad and eaten up with anger at the people who look at us (him) with disdain when he acts up when out, the same people would probably be very sympathetic if he was in a wheelchair or looked different. But as time goes on I'm caring less and less about what other people think - that has come very hard to me as I care far too much about what other people think.

[forbsay]

Hi

 

It comes in waves with me to. I still compare my son to other children ( he is now 6.5 yrs old and he was diagnosed when he was 2.5 yrs old). It is hard at times but you are not alone. When our kids acheive something that has taken along time - the feeling is brilliant.............

 

My son has come along way and as one of my friends once said "don't look at all the negative things -look at all the positive and negative things together as a complete picture and i have got to say i think it makes sense.

 

Take care

 

Forbsay

[loupin]

Somebody once told me that special children are only given to special people! I was also told that we are the lucky ones because when our children achieve the smallest things we can feel a sense of joy and pride that no one else can possibly know. Most people take everyday tasks for granted but we are so lucky because we see the everyday tasks as special.

I struggle with my feelings and would like to hide in bed sometimes. This site has been an absoulute rock!! Also i went to a support group for a while which was fab!

You are not alone in how you feel. <'> <'>

[Kathrynh]

I know just how you feel. It never seems to go away and it dominates your life. Not helped by well meaning friends who will say "oh my son does that some times" I just want to scream at them yes but your son does not do that all the time. Its not surprising so many parents of autistic children suffer from depression. I've always been a positive person but now I struggle to stay that way. Despite that I love him totally and I feel lucky to have him. At the age of 40 I lost my first child when she was born very prematurely. I never thought I would be a mum and then B came along. It was such a relief to have a healthy little boy and I will always feel so lucky to have had him but so often I just want to cry for him when I think of all the things he is missing out on and all the things I wanted to do with him. None of this is any help to you but it helps me to know that there are people who know how I feel.