Do you grieve for your child?

[LizK]

Post inspired by various conversations I've had recently.

 

Listened to a mum a few days back who was saying she found it completely offensive when after her daughter was diagnosed with ASD to be given a leaflet about 'grieving for the child you've lost' because her daughter was great despite ASD and nothing to grieve about. I mentioned a few weeks back to friends (have NT kids) that I seem to cry more over DS1 and feel guilty about feeling like that and one said that there must be a part of me that is grieving the loss of the child I thought I was going to have but I truly don't think I am. Maybe I am in some sort of denial as others I know are grieving in a way so it was interesting to hear the lady yesterday say the same.

 

I just genuinely don't have a mental image of the child I ought to have had or feel a sense of loss for something I've not got. Adam has always been like this from being a tiny baby, this is him. The good, the bads, the ups and the downs. I don't feel a sense of loss or injustice. I know I am fortunate to have never suffered the heartache of seeing a child regress which must be heartbreaking. What I think I do grieve for at times is the life we could have had otherwise, the constant nature of autism always being there with no respite or break. It can be so tiring. Sometimes I just want to blend in and for my family to be like everyone else and do the things that typical families do without worrying about change, noise, anxiety, possible tantrums, people staring or my son looking or acting different. Most of the time it's fine and I don't care but occasionally I do wonder what life would be like if he wasn't autistic though I can't for a moment imagine a life or an Adam who isn't autistic.

 

I think virtually everyone I know with an autistic child has dealt with it in a different way from utter acceptance to complete anger and raging against it all. Like everything people must cope in different ways but there seems to be an accepted belief that you must be grieving your lost child when maybe the loss is something different. Things haven't turned out how I imagined it would be when newly pregnant with my first child. Life can be difficult but then life is also difficult for some of my friends with NT children for other reasons that they didn't anticipate. Not got the monopoly on that with autism! I guess none of us really know how life will turn out for us

 

Lx

[Brook]

I have thought about this many a time when I've read in a book about going through a grieving

process after dx.

 

But like you Liz, I really dont feel I've grieved or the need to grieve, if they mean do you

sometimes get upset because your child cannot always participate in things that NT kids find

so easy, then hand on heart I would definitely say 'yes', but grieving 'no'.

 

I never really thought about what my child would be like when I was pregnant, all I used

to wonder is what the baby would look like! I have nothing to grieve because the child that

your supposedly grieving for doesn't exist, how can you grieve for something that doesn't

exist?? .

 

I love my boy more than anything on earth and yes I do get days when I cry seeing him

stressed out from his difficulties, but grieving has never entered into it.

 

Brook

[Bagpuss]

I'm unsure if I "grieved" for our dd's. There was no regression, they are who they are, and always have been. I suppose I do ponder on the "what if's"...........for me the biggest fear is the future, and all our youngest dd will not experience....... I grieve for that.

Edited December 15, 2006 by Bagpuss

[oxgirl]

I do feel a grief of sorts, but it is not for the child I think my son should have been, more for the things that he doesn't have and can never have, if you see what I mean. When I sit in the car park at school waiting for him to finish and I see the NT kids spilling out in groups, laughing and chatting and messing about and making plans to go here and there, that's when I grieve, because my son can't have that too. I don't wish he was a different person, I just wish he could have some of the things that other kids have. <'>

 

~ Mel ~

[cmuir]

Hi

 

Oxgirl, I think you've summed up my thoughts perfectly!

 

I have to admit that I do feel a sense of grief, but like you, not because I had a mental picture or expectation of what my 'perfect' child was going to or should be like ... Grief (sadness) because my son IS treated differently by ignorance people who know nothing about ASDs.

 

I worry myself sick what lies ahead because so far life has been full of hurdles - seem to resolve one and another crops up.

 

I'm not in the least bit ashamed of my son, in fact, I'm quite the opposite!

 

Like I say, he's go a lot more than most to cope with and for that I do feel sadness. That said, I think that the love I feel for him is far greater because I feel fiercely protective of him. He means the world to me - just wish more than anything that he and we weren't faced with the difficulties that we've (and are yet to) face.

 

Autism is an invisible disability and I think most people don't register it as being a disability. On countless occasions, you see children in wheelchairs or Down Syndrome children almost automatically being given understanding. However, Robert gets none and that's what I find hard to take. I can therefore fully understand why some people feel a sense of grief and long for normality.

 

Hope that makes sense.

 

Caroline.

Edited December 15, 2006 by cmuir

[noogsy]

i suppose i do grieve, i grieve for my big son whos life was intorable at school.i grieve for my family who have had millions of problems including suicides.my family has been blighted by asd and adhd.my dads side of the family has issues.and now we have five children diagnosed with asd and adhd within our large family...i do grieve for our family to be.my childrens,children.my grand children will they have this burden... oh yes i have thought about it....love noogsy

[UltraMum]

I do feel a grief of sorts, but it is not for the child I think my son should have been, more for the things that he doesn't have and can never have, if you see what I mean. When I sit in the car park at school waiting for him to finish and I see the NT kids spilling out in groups, laughing and chatting and messing about and making plans to go here and there, that's when I grieve, because my son can't have that too. I don't wish he was a different person, I just wish he could have some of the things that other kids have. <'>

 

~ Mel ~

 

That echoes my feelings as well

[bid]

I did go through a grieving process of sorts, because for the first 5 years I didn't realise anything was different, although I did have concerns over specific things. I can vividly remember sitting and crying and crying because I just wanted him to be a little baby again when I had been able to keep him 'safe'...

 

I think every parent reacts in an individual way, all of which are legitimate. I don't think it's helpful to have it suggested that we 'should' be grieving, but I think it is equally unhelpful if other people are made to feel guilty if they do grieve, if that makes sense!

 

I know I went into complete and utter denial for a year after my son was initially diagnosed with Dyspraxia, not reading anything about it or finding anything out (which is very unlike me, as my first stop is always a book with anything new in my life).

 

I think the most helpful thing I ever read was actually in 'Toddler Taming', in the brief chapter on children with special needs...the author basically said that what parents need is acceptance of their reactions, whatever they might be, rather than well-meaning advice, etc...

 

Don't know if any of that is helpful...now my son is basically grown up, I have had the time to move through a lot of things, and today I look at him and think he is one cool dude!

 

Huge hugs to all of you who are at the 'beginning' as it were <'> <'>

 

Bidx

Edited December 15, 2006 by bid

[V1971]

I do feel a grief of sorts, but it is not for the child I think my son should have been, more for the things that he doesn't have and can never have, if you see what I mean. When I sit in the car park at school waiting for him to finish and I see the NT kids spilling out in groups, laughing and chatting and messing about and making plans to go here and there, that's when I grieve, because my son can't have that too. I don't wish he was a different person, I just wish he could have some of the things that other kids have.

 

Amen {{HUGS}}

[jlp]

I feel angry sometimes at the lack of understanding that there is and always will be for my son when other children with more obvious disabilities are more accepted.

 

Always people only ever see him as angry and aggressive never his gorgous, lovely side.

[loulou]

Hi,

 

Mel . You hit the nail on the head there, hope you don't mind if i print off your reply and frame it! It's something that i would like to show some of my "friends" and family who just don't get it.

 

I would never want to change Kai because he is fabulous, but i do sometimes find myself thinking what my life would be like if he were NT. Is that a bad thing or just a natural thought?

 

I also feel sad for him because life is so difficult and confusing for him. All i want is for him to be happy, which seems impossible in the NT world.

 

Loulou xx

[elun1]

Yes it's a kind of grief for a life which doesn't include so many problems because of autism. It's not for some 'perfect child' though as I could never really imagine them as children or adults when I was pregnant. I did sometimes wonder what sort of babies they'd be but they looked completely different to my imaginings; far more beautiful! I find I worry terribly about the future, my ds is at the severe end of the spectrum. He will definitely always need care and I dread to think about when I'm not here to care for him and if I could change that worry I would. But I love him as a person and always will.

Elunxx

[minerva]

Well as much as I am probably going to get slated for this.....I'm gonna say it anyway

 

When things are at their lowest point which has been quite frequently over the years, I have found myself envying mothers who lose their child.

 

Sounds really harsh I know but at the time it seems logical. Its just that when you lose someone you are allowed to greive, you are expected to be miserable and everyone understands or at least tries to understand what you are going through. Also its something you have no choice over, it just happens and you deal with it & then slowly you start to move on with your life for your other children or family.

 

I know that if anyone here has lost a child they will probably think I am completely off my rocker and I have to point out that when I am not at my lowest even I think i'm kinda nuts so please dont shout at me!!!

 

But!!! Fo me sometimes it feels like the pain is never ending, there is no date to when the pain will stop, it could take years yet. Nobody understands, nor do they want to understand how it feels and at best you'll hear things like "well at least he's got his health"

 

When people say things like that it makes me feel like I cant be unhappy/upset/greive or whatever feeling I want to feel at that time!

 

Also sometimes I think that maybe I should give in & let them send him to the EBD school because at least then he'll have home to look forward to whereas now he has nothing. Therefore it sometimes feels like maybe its all my fault.

 

so I guess that deep down I do greive and Mel put it into much better words than me!

 

Nicke

[Mother in Need]

Minerva, I think that was an incredibly courageous thing of you to say. Admitting to yourself that that is how you feel sometime is one thing, but admitting it out openly another.

 

I don't know if my feelings have anything to do with grieving, but I too think so often about how life would be without an autistic child, not only for me, but mostly for my other two chidren. This morning, my youngest asked me that if I had to choose between him and his brother (AS), if one of them had to die and I had to choose, who would I chose.... ofcourse I reassured them both that that would never happen, and I loved them both just as much, etc etc, but my 9 your old stated clearly that I would always chose for his brother to live (his feeling is understandable as it seems like I am always there for his brother but so little for him, poor soul). However, my own feelings are actually quite clear on that, if I had to loose one of my 3 boys, I wished it was my AS son, not because I don't love him like the others, I really do, but because then his brothers would have a decent life too and I would have a future myself....is this selfish? Uncaring? Are these feelings unusual? Or am I simply not coping too well to be thinking this way? Don't worry, I would never do anything to my boys, it is just that those thoughts do cross my mind, those what if's, esp when I feel matters are way too much for me and I am slowly ground down.

[asereht]

...now my son is basically grown up, I have had the time to move through a lot of things, and today I look at him and think he is one cool dude!

 

Huge hugs to all of you who are at the 'beginning' as it were <'> <'>

 

Bidx

 

 

Thats the way I feel now too. I have been through a lot with K and for now at least I feel I have come out the other side.

I grieved too but mainly because we didn't get a dx for him until he was 13 yrs old (not for the want of trying).I think what I grieved about was lost time,lack of help, and guilt for letting him be labeled as a naughty or bad child plus years of bad experiences in school.

 

For those going through that now my heart goes out to you. I went through a very bad time with K at the beginning of adolesence but now I have a fine strapping young lad of just about 16 (next month) and I would like to say that we get on really well and I am so proud of him for all he has achieved this past year.

 

There is light at the end of this tunnel.

I don't find time to post much now but always check in now and again.

Take care all. <'>

[minerva]

There is light at the end of this tunnel.

 

 

In my case I usually find it's a train

[Frangipani]

Hi everyone,

 

I can relate to all your feelings above. The question that was raised by Liz do you 'grieve the child you wish you could have had' The first book I read made that same comment that Liz quoted above 'grief for the loss of the child you could have had' well all I can say is "toss it out"!!! Does that comment make you feel positive for the future........ your childs diagnosis in the early days is not set in concrete, thats why I resent this.

 

My son is now 19, I watched my boy over the years and observed his ups and downs and difficulties. I just want to assure you, no matter how bad it looks, it gets better.

 

What kept me going all these years? I would say it was looking at that smile in my boys eyes, it was infectious, he was totally oblivious to his disabilities. I have to say, he is worth his weight in gold. I tell him every day even when he is causing me grey hairs; he is awesome, he is the best son in the world, and it is true.

 

If I could live life over and send him back for another, I wouldn't think twice about it. I have grown to admire him and realise he is not his disabilities he is a unique person with many talents that is just different to NT kids. I think despite his medical nature, inside I kept believing good will come to him.....For instance, his Paediatricians famous words whenever he would see him; he would assure me age will improve your boy and he would look at my son with admiration and through fisty cuffs in the air at him and say to him, 'you're awesome, and you're bad, meaning wicked attitude, my son just loved this doctor, and we would always walk out of there feeling HOPE. He always said life will be good to your boy, things will get easier with age. He say by his teens and early twenties he would grow out of a lot of his disabilites.

 

He hasnt yet at 19 but I have to say times when I felt despaired I kept remembering these comments and telling my boy he is the best son in the whole world. I am greeted by him everyday telling me I am the best mum in the whole world. That makes my day. I call him my gentle giant, he now stands 6ft 2 and calls me shortie.

 

Support groups along the way were my best allies. Whenever I felt alone and weary and negative, they quickly put a hand out to help me up, to keep believing to not give up. I took anything I could get my hands on about my child from these support groups and gave information to his teachers as they really didnt get educated in how to teach our children, so the tips in the leaflets for teachers were always greatly appreciated, and we had meetings regularly with his teachers, even by phone to stay focused. Just a few examples of tips for the teachers on the leaflets were: Child placed at the front of the class. Put my boy with the brightest child in the class as this child will assist my child and overlook his disabilites. Buy a ruler and place a red sticker on it, this was a code between my son and the teacher, if my son was behaving inappropriately the teacher would quietly come over and point at the dot, which meant to my son, quietly, focus, or go outside if you need to have a break for 5 mins, they had a chair outside he could sit on and listen to some music. This is what the support group leaflet advised. This paid off, the bright students today accept my boy warts and all. They communicate with him on the internet. They invite him over to their homes and are amazed at some of his computer skills. They bounce off each other. He feels good around these boys, some have gone onto college and Uni, but they have remained friends. I know he has setbacks stops and starts and withdrawals but I have learned to take my hands off the steering wheel and trust now to let him gradually take control, whatever that might be.

 

All I can say now is that it is all good. Sometimes I look at my son while he is sleeping and see that loving cheeky little child like it was just yesterday and I love him to bits. He's cool, he wont give up, he will find his niche one day. If I have anything to say or do about of it. Thats my boy

 

I like what Bid said as she like me can look back to the early days, to those mums in the beginning, and it can feel overwhelming, but look where we have come too. So dont despair. Toss out that saying the "child you wished you had'. I have that child. I am sure many parents of older ASD kids would agree with us 100%.

 

Gosh, I was only going to say a few words hope this helps. <'>

 

 

Hailey <'>

Edited December 16, 2006 by Frangipani

[elun1]

Hi Hailey

It's lovely to hear all those brilliant and positive things about your boy. The thing is though my ds has been diagnosed at the severe end of the spectrum and I can't ever see him outgrowing his difficulties in any significant or lasting way. You could see if you met him he could never exist in a mainstream environment and access anything meaningful from the curriculum whatever strategies the teacher applied. (I'm a primary teacher and have successfully integrated children with AS and HFA) but children with SLD along with their autism would never really cope. He also has SID and rocks jumps and stims every waking moment. He is incontinent and has severe behavioral difficulties and sleeps for approx 4 - 6 hrs each night. He needs to be carefully supervised every minute he is awake. I hate to sound so negative, I really really do and yes there has been progress since he was diagnosed at age 2 (he's 5 now) He is using echolalia in a more appropriate and meaningful way and at times he loves to be held and rocked.

It's wonderful to hear positive things, I really do mean that but sometimes I do grieve for a different future my son may have had

xxxxxxxx

[Frangipani]

Hi Hailey

It's lovely to hear all those brilliant and positive things about your boy. The thing is though my ds has been diagnosed at the severe end of the spectrum and I can't ever see him outgrowing his difficulties in any significant or lasting way. You could see if you met him he could never exist in a mainstream environment and access anything meaningful from the curriculum whatever strategies the teacher applied. (I'm a primary teacher and have successfully integrated children with AS and HFA) but children with SLD along with their autism would never really cope. He also has SID and rocks jumps and stims every waking moment. He is incontinent and has severe behavioral difficulties and sleeps for approx 4 - 6 hrs each night. He needs to be carefully supervised every minute he is awake. I hate to sound so negative, I really really do and yes there has been progress since he was diagnosed at age 2 (he's 5 now) He is using echolalia in a more appropriate and meaningful way and at times he loves to be held and rocked.

It's wonderful to hear positive things, I really do mean that but sometimes I do grieve for a different future my son may have had

xxxxxxxx

 

Hi,

I could say that was what they said about my boy at that age. He also was diagnosed on the severe end. To me fluctuated from Low to HFA, by no means is my son coping like most HFA kids.... he has to take a lot of medication 'just to be normal'. Special ed was what I was told was his limit prior to meds. He had a complete breakdown at 15 and had to pull out of school. When I look back at the age of two - five - eight I swear I was told he would never be doing some of the things he is doing today. He certainly has his setbacks, we have basically learned to adjust and accept him as he is. As I look over the assessments over the years you would also think whoa, I am amazed at how he is functioning. I could say my son was a lot lot worse than some of the things you described, back then. Take his meds away and I would say he is still like that.

 

But I guess I just wanted to say I dont grieve for what he could have been. It doesnt do you any good to think like that. Thats basically how I feel and how I was trying to express my feelings when I read some of those books and looked at my childs reports and behaviours back then. As my sons doctor says by the time our kids are 19 or 25 a lot of these difficulties will dissappear. Not fully, but it wont be as hard as it were when they were say 4 - 15 years old. A certain personality starts to surface and I delight in that. Care to think like that.

 

Hope that make sense.

 

Hailey xx

[minerva]

Hi Hailey,

 

You were very lucky in that you had a supportive Dr that you both got along with. That in itself has got to help you feel more positive.

 

We arent so lucky, My son has no Dr at all, some come & go through the solicitors to get reports for us to use against the LEA & they are lovely but they only do their report & then they're gone.

 

The LEA Dr is a complete numpty for want of a better word, and has even removed us from his list so that we had to rerefer ourselves through the GP. He isn't interested in us in anyway, only in helping the LEA get what they want.

 

It also sounds like you had a supportive school, whereas my son has now been out of education for 3 years and 4 months and no end is in sight. We dont even have a tribunal date.

 

Its a whole lot harder to think positively when nothing around you is positive

 

I do hope that I get to the point where I think it was all worth it, but for now it seems a very long way off if it ever is coming at all.

 

Thanks for trying though

 

Nicke

[Lynden]

I dont think I've ever grieved for the child Logan could have been because like Adam - he's always been what he is. I think if you had a child who had regressed it might be completely different though?

 

I do feel sad for him though, for the things he'll miss out on in life, and I sometimes feel sad for Leona because she'll never have that real sibling connection that a lot of people have. I guess it has made her much more accepting though and she has a fantastic nature, but then she probably would have had anyway.

 

I guess sometimes I feel sad when my friends talk about their kids growing up a bit and being able to just go off and leave them in the house for an afternoon to do their own thing as a couple again - Chris and I will probably never have that kind of freedom.

 

But grieving for the child I could have had, no. Not for me, for him maybe, but not for me.

 

Lynne x

[oxgirl]

hope you don't mind if i print off your reply and frame it! It's something that i would like to show some of my "friends" and family who just don't get it.

 

I'm very flattered Loulou, go ahead and quote me, I'll let you know later what my royalty fees will be!!

 

~ Mel ~

[LizK]

Thank you everyone for your interesting and moving replies <'> I think a few mentioned about prospective grief for the future they might not have or things they might not experience and I can relate to those feelings of sadness. This week a child from my son's class came home for tea and seeing the difference between him and my son was like a slap in the face once again . Adam is doing really well but even so on one level they were world's apart and I had a wistful moment wondering what if. I think I get used to Adam's little ways and that's my normal so it's quite a shock to see what other four and five year olds are really up to !

 

I hope my post didn't come over as there being one way that is better to grieve or come to terms than an other , it was more than there seemed to be this accepted belief you were grieving for a lost child rather and I wondered if I was in some massive denial for never having experienced this but reading the replies has reassured me some what!!! Grief about the future or how different life is for you or your other children or for what your autistic child is going to have to experience is a different grief I think.

 

Thanks everyone <'>

 

Liz x

[nellie]

Hi,

 

I have two sons, the eldest 28 and the youngest 26. My eldest son has learning difficulties, he was diagnosed autistic at 19. He's been happy in residential care since the age of 19, I think he will always need support but you never know, he might surprise us all one day! He works two days a week as a volunteer at a National Trust Garden with help from his support worker, he loves it and believe me, he works hard!

 

My youngest son was diagnosed with AS a couple of years ago. He had a complete breakdown when he was 20, he's still out of work but we're hoping that will change in the near future. We try not to push him but go at his pace. His celebrated his 26th birthday last week with 10 of his friends, a pizza at home followed by Laser Quest, they all returned to carry on the celebration at home. He went to the pub a few nights later with some friends, he's not been able to do that for a long time.

 

I'm not going to pretend it's been an easy life, it's been tough, very tough at times. It does get easier, well it has for us. There was a time when I couldn't bear to think of the future, it was easier to keep going if I didn't think about it too much. Now? I wouldn't swop my 'boys', they are wonderful young men, I'm a very proud mum. To answer your question. No, I don't grieve for the children I might have had, I love their differences!

 

My heart goes out to all parents who struggle to cope on a daily basis, usually without any help. I hope you all find a light at the end of the tunnel.

 

This was posted on the forum a couple of years ago. I hope some can find some help from it.

 

Don't Mourn for Us

http://www.asd-forum.org.uk/forum/index.php?showtopic=143

 

 

Nellie <'> <'>

[board]

my dd7 wont be my dd with out her aspergers if you know what i mean i feel so lucky to have her

[butterfingersbimbo]

very interesting topic!!!

 

i have felt sad for el, for the way she has been treated in the past and the way she will be treated in the future...but although i have felt so overwhelmed at times, i don't think i have ever "grieved".....before her dx, and before successful medication life was very hard sometimes. But now i look at her and know that she is my world......

 

minerva, big big hugs to you chic, <'> <'> <'>

and MIN too!!! <'> <'> <'>