The Grieving Process

[Julieanne]

Was talking to my husband about our son ( who is 8, mental age of around 3, severly autistic)

 

and we said about the whole grieving process, where you wish you could do things with him like we can with our eldest son, and how we feel we are missing out even though our son has no clue and is absorbed in a world of tweenies, water hoses and washing machines ( bless!)

 

It can take time to come to terms with not being able to do this & that with him, as he simply wouldnt cope, wouldnt understand, wouldnt enjoy and then having guilt when doing it with eldest, even though i know my youngest is happy doing ''his'' own thing.

 

we do involve him in lots but some things are simply too stressful for him to deal with and he gets so wound up, i dont want to put him through the trauma of it all.

 

i do find myself getting choked up as yesterday, my hub took eldest body boarding at the beach and he couldnt take youngest, as he has no sense of danger etc and would run off and it would be a absolute nightmare of worry and stress for everyone, and it does make you think that even after nearly 9 years you think you have come to terms with having a disabled child, it can hit you at odd moments. also its understanding that my son isnt missing out as he is happy and always smiling, but it is how you feel as a parent, it seems to get to us more, than it would ever affect our son.

 

Hope this makes sense and i wondered if anyone else felt this too?

 

love Julieanne x

[forbsay]

Totally know where you are coming from. My son was diagnosed with autism at the age of 2.5 years old and he is now 8.

 

Take care

 

Forbsay

[warrenpenalver]

There is plenty online about the traditional "stages of grieving" which may be useful. I guess in your case its acceptance and adjustment of expectations when compared to your other child. I guess some of it is forcing a positive thinking style, for example rather than being upset that he cant do x or y compared to kids his age, why not expect nothing then when he does achieve something (regardless of when it can be used as a positive thing because hes had an achievement.

[bid]

I read somewhere that with a child with special needs, parents never 'finish' the grieving process, but as time goes on they spend more and more time in the 'acceptance' phase of the grieving process.

 

Bid

Edited August 13, 2008 by bid

[KateBall]

my ds recently diagnosed asd (but we knew it from early on) is high functioning but I also recognize your feelings. Things we would like to do with ds or would like him to do. For the most part he seems happy but he has self esteem and anger issues. I know I grieve for him. But I try and stop myself and do realise that the asd gives him very many positive characteristics as well as negative ones.

[oxgirl]

Hi Julieanne,

 

I recognize your feelings as well. I don't know what it's like to have two children, one ASD and one not, it must be difficult to be seeing that contrast between them constantly and wishing things could be different for your ASD lad. I only have one child, so really have nothing to compare him with, iyswim, but I do often feel sad when we can't do 'normal' stuff with him. I guess the only advice I can give to you in your situation is to try and enjoy both your sons in their own separate ways, they each are as valuble and special as each other, just in different ways. <'>

 

~ Mel ~

[Jadensmum]

I read somewhere that with a child with special needs, parents never 'finish' the grieving process, but as time goes on they spend more and more time in the 'acceptance' phase of the grieving process.

 

Bid

 

I totally agree, infact I was going to start a discussion on this on another forum yesterday as I have been thinking about it a lot recently.

 

I feel like the grieving process is a vicous circle at the moment for me personally, I go through phases of anger, denial and acceptance over and over again. Although I love my son to bits and I would do anything for him I can't help grieving for the child he could have been if he didn't have Autism.

 

My son is now 6 and severely autistic. I also have a 9 month old and he is already doing things my other son never did at his age and some he still doesn't do now.

 

<'>

[bid]

I think the reason we stay in the 'acceptance' phase rather than finding complete closure is because children with special needs are so vulnerable: things can and do go wrong, etc.

 

I know that certainly I am always sub-consciously waiting for the next crisis...

 

But it really does get easier, I promise. When he was little, I would often find myself walking down the street with tears running down my face...very rarely happens these days now he's an adult.

 

Bid <'>

[elun1]

<'> <'> My youngest ds sounds very similar to yours - he is 7 but mentally is around 2. His diagnosis is severe autism, epilepsy etc! I don't think you ever do really get over it personally. However it's certainly true that I'm more used to it and I cry less and laugh more (generally, although little things can start me off!) Life is difficult day to day as my eldest was recently diagnosed with Aspergers and the boys although both autistic could not be more different. Day to day I am coping better and less time worrying but I still get very anxious when I think about the future. I try not to but sometimes I can't help it. On the positive side I appreciate the small achievements more than I did - it is a massive thrill for me when little one says a new word or sleeps through the night. He is showing so much more pleasure in every day things lately and I genuinely enjoy his company (except when he is tantrumming!!) I'm a primary teacher and I'm sure I have a better insight into many of the children I teach now and have helped other staff learn about autism and aspergers which is so badly needed in our schools. Some days though I still feel sad. But maybe I would anyway - I'm the kind of person who's not happy unless I'm stressing about something!!

Take care, Elun xx

[Minxygal]

I know I grieved when they were diagnosed, but I think in the back of my mind I had planted this dream of them breaking out of their chrysalisis and becoming completely different adults, perhaps almost leaving the autistic behaviours behind. I suppose it's dawned on me that this is never going to happen and I know I've really felt this lack of freedom or the ability to do the things I want when I want to do them. I think the grieving process does re occur and Im not sure I'm neccessarily grieving for them, more for myself and the things I am still unable to do, despite the age of my young people, because of their disabilities.

I think another reason we are unable to have closure is the fact that every doctors or specialist appointment has us raking up those raw emotions as soon as they start asking us to once again tell the story of our children from conception to present day. How can you deal with something when you are constantly having to dig through it at the request of every doctor etc that you have to see.