Delayed shock?

[Box-Of-Frogs]

My DS Owen (4) was diagnosed with an ASD back in the summer. At the time I shrugged my shoulders, told myself I had Owen before his dx and I still had the same wonderful little boy after it. September saw the start of school and with it various meetings on how to best meet Owens needs. It is now apparant that things aren't going too well and I've been advised by the school to start the whole request for a statement etc etc thingy. If I'm honest I didn't realise how different Owen is compared to his peers until he started school and now all I can seem to do is sit with my head in my hands wondering what the future holds. I'm finding that as Owen gets older, people have started to notice him and his unusual ways. This makes me feel venturing into the outside world isn't something I look forward to doing.

 

Does anyone know why have I suddenly started to feel so bothered and upset so long after Owens diagnosis? I expected to feel this way then and feel better now!

 

I love him so dearly. Can anybody help?

[elun1]

<'> Hi

It takes a long time to take in the diagnosis. I must admit that at the time it knocked me for 6 and I've come to terms with it gradually but there are still days when it feels like we've just found out (my ds was diagnosed 3 yrs ago when he was 2) He is at the severe end of the spectrum and I worry alot about what the future holds. I think you go through stages with it really and you're right about the delayed shock thing I think. It's such a lot to come to terms with that I think you take it in quite gradually to sort of protect yourself.

Sorry you going through such a difficult time

Elunxxxx <'>

[Flora]

First of all there is a delayed reaction. but my theory is that as parents we accept our kids no matter what; we love them unconditionally and have an inbuilt belief that they are entitled to as much as any other person. The dx doesn't change that, apart from if anything, compounds those feelings. The negative aspect comes into play as soon as we see that the world in general doesn't feel the same. If we could live in a nucleus of people who understand and accept there is nothing to grieve for; tragically we find ourselves constantly fighting for understanding and acceptance, along with the seemingly never ending fight for the same rights as everyone else. It's the feelings that ensue that causes us grief. sorry if this doesn't make sense!

 

Have a hug <'>

 

Flora XX

[badonkadonk]

I think delayed shock sums it up, it's like acceptance, accepting that your son is different because he is, and there is nothing wrong with that. Different doesn't mean less of a human being.

 

I experienced a little bit of what you're going through earlier in the year. I got diagosed with Aspergers Syndrome last December aged 22 and at the time I was just so relieved to be told that I wasn't going mentally insane that I didn't really get to grips with how I was actually feeling.

 

All in all I am positive about the diagnosis. In a lot of ways I prefer being Aspergers because it's who I am and it's the only way I know. To me, all the things Non-AS people do are weird and 'different' so it's not like I'd be rushing to push a button if someone told me it would make me Non-AS. I would never press it. However I have 'down' days just like everyone else and at times I do wish I didn't have such strong reactions to things. Earlier in the year I was feeling really blue over the period of a couple of weeks and I just couldn't put my finger on it, eventually I sought a cuddle from my mum and it was then that I said "it's never going to change is it". Accepting the fact that I'm never going to find going to a supermarket that much easier to cope with and that I'm always going to find socialising a bit of a nightmare, that I'm never not going to be bothered by noises etc. These things took time to accept. I would love to be able to sit down on a Saturday night with everyone to watch the tv and not be bothered by anything, but I just got to accept the fact that, that is probably never going to happen.

 

What has happened though is through learning about AS and through communicating (as hard as it is) to my family about what makes me tick and what makes me meltdown, I am actually more able now to sit in the living room and watch the tv than I've ever been. For most of my teenage years I spent my weekends in my bedroom refusing to watch tv downstairs. I was labelled as rude and unloving of my family and the black sheep because, seemingly, I never wanted to spend time with any of them when the reality was I knew being around them made me mad but didn't know why. Now I know it's not them, it's little things they do, noises on the tv, the way I feel. I am so glad and thankful for the diagnosis most of the time that I can't imagine my life without it. I have a much better quality of life now I know about AS, and have started to learn about myself, than I did before and I cannot urge you more to just keep reading and researching and finding out because understanding is the biggest thing that can help the relationship between you and your son and the quality of life that both of you have.

 

Now comes the tough bit and I really am sorry if this upsets you, but hopefully at some stage you might be able to see the positives in what I'm saying because I know how hard it is to see the positive in anything when you're coping with feeling down/depression. The thing is, you gotta get your head out of your hands and ultimately get on with it. As harsh as that is. I'm not saying you have no right to feel down, you have every right, but you can only feel down for so long before it starts affecting you and your son's future. At the end of the day there is nothing else you can do. His differences are never going to go away so you can either spend the rest of your life stressing about it and thinking 'why me, why him' as I'm sure we all do at some point, or you can accept and start trying to understanding and move forward positively.

 

I have a big thing about dying, I know a lot of people with AS do because sometimes we are unable to ignore the bigger picture and focus on the little pictures around us instead. Sometimes I'm like, what's the point in living? Only going to die anyway. Or I get so upset and anxious and strangled by the thought of dying that I spend all day worrying about something that I can't change. I'm gonna die, we're all going to die, there is absolutely no point wasting time and energy over it. The negative aspects of my AS are never going to go away, I can manage them easier and learn ways to understand my needs but ultimately those negative aspects are going to be there in some degree or another. So what's the point in me moaning about being born an Aspie? I'm just going to ruin my life and not take advantage of having being given this chance at life anyway.

 

It's like you said, Owen was a great kid before the diagnosis and he hasn't changed. It's important to remember that Owen hasn't 'got' something. He isn't ill, he isn't infected or diseased. Autism is often referred to as something you 'have' because often it's hard to describe it in any other way but it really isn't something you have it's something you are. The name Autism is only a label given to the common traits that most people who are Autistic display. Essentially Autism as a thing or whole doesn't exist, it's just a term for all the traits that make some people different. Same as Aspergers. I don't have anything I am something.

 

So everytime you start thinking negative about ASDs and everytime another setback or thing he finds difficult occurs you gotta try and remember the positives and look at your kid and see him as just your child, that's all he is, he's just a kid who does things differently. By thinking positively and making sure you are doing everything possible to aid your understanding of ASDs then you have a great chance at a happy life. The alternative is to stay sat with your head in your hands and that doesn't really make a whole lot of sense.

 

I hope this helps a little and you can see what I'm trying to say. I'm not a nasty person but sometimes tough love is the only option <'> I do appreciate that it isn't what anyone ever wants to hear though, me included!

 

Talk to the school, do some research into local support groups or associations. Look into statements on this forum, there is a wealth of information and experienced mums and dads Take a look at the National Autistic Society website and see what books they have available, there will be books for both you and your son. This isn't something you have to do, but I personally reccomend it, tell your son as soon as you feel like he will understand. You don't want him to have to live his life in the dark and then go through this whole acceptance/understanding thing years down the line. If you do you're restricting his chance as well of having a happier life. Talk to close family, and friends, if you want and get them to read the literature you will read because the more people that understand the easier it will become. But you must approach it in a positive way for it to work!

 

Anyway, that's enough from me now, sorry about the length as per usual. I hope things get a little brighter for you.

 

Emily

xxx

[UltraMum]

Have you read Welcome to Holland? Sums it up well on my view ...

 

http://www.nas.com/downsyn/holland.html

 

Better get the tissues out though

[Bullet]

I can completely understand. Most of the time Ds1 is just him, him being ASD does not change who he is. But when I can see him with other children and see the difference then it hits home. It was our friend's two year old's birthday last week and I asked them if he understood it was a special day. They replied that he did and there would be something seriously wrong with him if he didn't, with all the presents and people coming round. Ds1 was three in July and had no understanding then that it was a special day, showed no understanding when his younger brother turned one back in September and appears to have no understanding about Christmas.

[Elanor]

I really do understand this - it is normal, and you will feel better. Starting school is a whole new ball game, and you have a lot of challenges ahead of you - perhaps its the realisation of this, and the comparison between your son and other children, that's really brought things to a head for you. Give it time.

 

Elanor

[oxgirl]

I agree with everyone else, what you're feeling is totally normal, if painful. Give yourself some time and be good to yourself and you will feel better as time goes on.

 

When I feel bad about the things other children have that my lad doesn't, I try to remind myself of all the things that it is good he doesn't have, if you see what I mean; he hasn't got a mean bone in his body, he's not going to be out earning himself an ASBO, he's not a bully, he isn't out smashing windows and stealing cars and he's not going to get himself into all sorts of other trouble just to impress his friends, and the list goes on. He's a loving, sweet kid with a lot of positive things going for him and I can think of many kids without his problems who aren't half as sweet natured as him.

 

Look after yourself. <'> <'>

 

~ Mel ~

[cmuir]

Hi

 

My son is nearly 5 and we got a diagnosis back in May (7 months ago). Interesting what you were saying about not wanting to venture out. I feel exactly the same way! I also feel a sense of grief, wishing that this wasn't happening to us, wishing that we could do normal things like others do, etc. That sense of grief hasn't faded as yet. I still find myself driving to work after dropping Robert off at school and crying. I worry myself sick every minute of every day wondering what lies ahead of us, am I going to get a phonecall from school, is Robert okay, etc. This isn't going to sound very positive, but my feeling is that we seem to resolve one issue and another one raises it's head. It just seems like a real rollercoaster. I guess the whole process is about trying to get through this the best way that we can and taking one day (not looking too far ahead) at a time.

 

Best wishes.

 

Caroline.

[curra]

Hi BoF,

 

What you are feeling is a common experience to parents after a dx. I have felt it myself (I still do sometimes 2 years after my son's dx) and I have read what other parents have been feeling too. It is a natural feeling because you love your child and the more you love them the more intense is the sense of "loss" when we notice day by day that they are not going to be like we expected them to be. This is not the same as the typical disappointment that some parents feel when they expected their children to be just like them and they turned out to be very different people. Our "mourning" is because whenever we see that they are different from other children we fear deep down that life can be very tough for them, during childhood and more so in adulthood. Worrying about it is the natural thing to do, but in time I think that we all start to realise that the best way to help our children is to stay strong. After the mourning process (for the child we dreamed of ) comes the realisation that this is the child that I have and this is the way that he/she is , but it doesn't come all at once, it comes and goes until we can slowly start seeing the world through their eyes and we realise that the way they are is wonderful. We need to stay strong to help them through every stage because humans tend to think in "packs" and people who are different are easy targets of bullying, snubbing, walking over them etc.

It takes time, but you will feel better.

 

Hugs <'>

Curra

[helenl53]

Hi BOF

 

What you are feeling is perfectly normal. If we lived in a world where there was tolerance and understanding, we wouldn't feel this way but sadly, this is the world we live in.

 

Take all the support you can get and enjoy Owen for all the lovely things that he does and says.

 

You know where I am if you need to chat.

 

Love

 

Helen

[noogsy]

aw.. isn't holland perfect...i do think it is a kind of bereavement process and parent s can be angry,unbelieving of what is being said.then flat on your backside because the rug has been pulled from under you.then eventually accpetance.it is so difficult and complete depends on the parents .some people can end up depressed with struggling with schools,specialists,doctors,SS,paperwork,letters,appointments...

everysingle person has a different experience......when my little boy was seen by our gp when i thought at first the was something wrong with louis,he said what a shame for you ,you are going to have a long hard journey???.i didn't know what he meant i was sorry for my child....i now know what he meant....at the end of the day a have beautiful child...who is loved although we have to fight for every single thing he needs...hope i have helped... love noogsy

[butterfingersbimbo]

sending you a great big hug <'> <'> i think the hardest thing i found was when your child is with other kids and you realise how different they really are.....when you have had them at home you become so used to their little ways that they become "normal"......

 

welcome to the boards, love the name!!!

[madmooch]

sending you a great big hug <'> <'> i think the hardest thing i found was when your child is with other kids and you realise how different they really are.....when you have had them at home you become so used to their little ways that they become "normal"......

 

welcome to the boards, love the name!!!

Thats so true - when it's your child you dont see their quirky ways as being abnormal it's when other poeple start pointing things out to you, you start to realise he is very different and "oh yes he does do that"

The grief gets easier but never goes away - not while society treats us the way they do anyway.

 

<'> <'> <'> <'> Box of Frogs <'> <'> <'>

 

Clare

[Box-Of-Frogs]

I'd like to say a huge thank you to each and every one of you for your great replies! Isn't it amazing that, no matter how bleak things appear, knowing others have been there, seen it etc and are still ok can make such a massive difference to how you feel about the situation and can actually make the future appear less daunting! I'm so grateful to you all! Life just might not be so bleak after all.

 

 

Now! About the statementing process.............................................

[helenl53]

You go girl and kick some booty at the Local Authority - you have some battle scarred veterans around to help LOL.

 

Love

 

Helen

[LizK]

When Adam was first diagnosed I have to admit I felt elated. It was no surprise, we'd waited 18 mths to get a diagnosis and for us a diagnosis meant he'd get autistic-specific support at school, we could go on Earlybird and we finally could move on knowing that he was autistic. That was just over a year ago. The last year has been a real roller coaster ride. I think my relief and elation did turn into some sort of grief, not grief for the child I'd 'lost', I've never really felt I've been missing something but more for the life we were all living as a result of his autism and just how different things were going to be. He started school after Easter and that was a really rocky road to begin with. We were going through the whole statementing process then too. My emotions were up and down and I find I cry more now than I ever used to. Sometimes he is like any other child yet sometimes he's so different it's like a slap in the face especially when you see him struggling. At the moment he's having a really settled patch at school and coming on so well and I think it's important to hold onto these good times for when things do get rocky.

 

Lx

[reuby2]

Hi, I'm going throught he same thing now really and it is a year since my son was diagnosed as being on the autistic spectrum. I thought i was coping fine, had a positive attitude that we could do this and that nothing had changed, always try to support and encourage him, not take offence when he is rude or angry, but really earlier this year i fell into depression, i was already being treated for anxiety but i just couldn't cope.

I keep trying to bounce back and be strong with myself but i am just realising that i can't just ignore the situation and that it is hard as a family.We sometimes feel prisoners to him as we can't go out without a huge fuss and he doesn't enjoy things that we would like to do, so it's easier to just not do them.I think i was/am also in denial, thinking that it isn't asd really and that he would grow out of it but in fact it is showing more now.

I am just starting to post again today as i feel i need to be in contact with other parents, to know i am not alone and to find ways of coping and adjusting. Chin up chuck , <'>

Edited December 17, 2006 by reuby2

[loupin]

I go up and down my son has been diagnosed asd for 18mnths and diagnosed with a learning dis and communication disorder for 12mnths. One week i think to hell with the world they are all strange and it doesn't matter if my son is different but on other days i go to school and hear the conversations the other boys are having with their mums and feel gutted. I watch them play football and have sleep overs and i feel really sad. But i know that when my son tells me he loves me he really means it likewise the little kisses i get for doing the simplest thing like making his favourite tea and then i think i'm the lucky one!

Its definately a strange rollercoster of emotions!

[claire33]

Hi all

 

i think about it constantly, more so when i see other kids having a conversation and playing outside together, i think if you let it could quite easily drive you insane.

What i would give to have a conversation without having to explain what i mean all the time or just nip out to the shop without pre warning him 5 times.

I would really like something or someone to blame for it so i could take out my frustrations on them even though thats not going to happen.

I think i will always feel this way as long as my boy has difficultys which i cant do anything about.

i think the hardest thing for me is accepting it and im not ready to do that yet.