Anyone feel a sense of loss?

[Julieanne]

Hello, I havent posted for a while, busy moving house which i am thankful to say that with jay went very well

 

I have just been with my little nephew who is nearly 2 and still in nappies so mentally same as jay as jay is also in nappies still...and you cant but help feel a sense of loss..im not sure if i know how to explain it properly but it is kind of a ''smack in the face'' when u see a child that is 4 times younger then your own doing exactly same things, only my little nephew understands more and answers to things u ask him, with nodding of head etc, although my nephews speech isnt all there yet, i just felt like it brings it home to me more.

 

i was wondering if anyone here feels or has felt this way and im close to tears at the moment, i guess i thought i had come to terms with jays disability and exactly what it means for rest of his life, as in always living with us etc...but i dont think i have

 

Anyone relate to this?

 

Thankyou for any replies in advance

 

Julieanne <'>

[szxmum]

<'> >< <'> ><

 

I can relate to the sense of loss - I feel it when I see friends' sons who I have known since they were babies taking driving lessons, going to concerts, hearing that they are having sex with their girlfriends. I feel it when I see my dd (14) overtaking her brother - organising and starting her first job, going to youth club, going on school trips and to school discos. I feel it when I look at my ds who is in emotional pain wondering why he is so different from his peers.

 

My difficulty is knowing what to say when people ask what ds is currently doing. "Well he's at home on DLA because he has recently been diagnosed with Autism and has mental health problems" doesn't exactly trip off the tongue and tends to kill the conversation stone dead when I actually get up the confidence to tell someone

 

Does anyone have any good oneliners that they use?

 

Thinking of you Julieanne <'>

 

 

[Sally44]

Yes I get it too.

I can go long periods when my son is doing well and I am having no problems at all. Then something will happen like he's invited to a party and when I go and meet his 'peers' and see how they are talking, playing, interacting etc together and he might be examining a shiny piece of paper on the floor, then it is a sudden moment of realisation of how wide the gap is. Not necessarily in intelligence, but in motivation and interests etc. So I would say that just because your child is in nappies does not mean he is 'at that level'. He maybe way ahead in other areas, but just does not have the skills to demonstrate it. For example, my son who is 8 and still cannot read or write asked me the other day, when we look at something, why don't we see two pictures ie. one from each eye. So I explained to him how the eyes work and how the brain and muscles pull together the two imagines into one. I can't imagine another child his age even asking that.

I also remember watching a video on You Tube by Amanda Baggs called 'in my words' (if I remember correctly). This woman appears severely autistic and you would automatically assume of very low IQ. But watch her video and it makes you realise you can never judge anyone on their outward appearance.

And your child will develop. It is harder for us because we don't know how that will be because they don't necessarily follow the developmental stages of their peers.

But there will always be good days and bad days. <'>

 

[bluefish]

Hi,

 

 

I totally understand the sence of loss, most of the time as ds is an only child and it is just me and him I am just used to him and our life feels "normal" but when we go to the park and a child 4 years younger than him is chatting away I really feel it and the difference in development is like a smack in the face. Also at school when the mothers chat and the children are all going to each others houses for tea I have been known to sob on the way home!

I get an amazing amount of joy from my son and go for months and months without feeling sad and it can be a family visit or yet another thing we are not able to attend that can make me fel this sence of loss. Not to mention peoples total lack of understanding! I took ds to a summer fate this weekend and he was very worried he might see people he knew,didnt want his face painted and had no interest in the boucy castle, and as I saw his peers and younger children racing around and having fun I felt a bit sad, BUT he is happy it is often me that feels I am missing out

I know just how you feel, but it will pass again if only for a while xxxx

thinking of you

[Julieanne]

Yes I get it too.

I can go long periods when my son is doing well and I am having no problems at all. Then something will happen like he's invited to a party and when I go and meet his 'peers' and see how they are talking, playing, interacting etc together and he might be examining a shiny piece of paper on the floor, then it is a sudden moment of realisation of how wide the gap is. Not necessarily in intelligence, but in motivation and interests etc. So I would say that just because your child is in nappies does not mean he is 'at that level'. He maybe way ahead in other areas, but just does not have the skills to demonstrate it. For example, my son who is 8 and still cannot read or write asked me the other day, when we look at something, why don't we see two pictures ie. one from each eye. So I explained to him how the eyes work and how the brain and muscles pull together the two imagines into one. I can't imagine another child his age even asking that.

I also remember watching a video on You Tube by Amanda Baggs called 'in my words' (if I remember correctly). This woman appears severely autistic and you would automatically assume of very low IQ. But watch her video and it makes you realise you can never judge anyone on their outward appearance.

And your child will develop. It is harder for us because we don't know how that will be because they don't necessarily follow the developmental stages of their peers.

But there will always be good days and bad days. <'>

 

 

Hello Sally, thankyou for taking the time to reply.

 

I had jay assessed and he is currently 9 years old in age but mentally no more than 21 months, i do appreciate what your saying, your right as in some things he seems to be ahead...yet others he is his ''mental'' age. It is so hard being a mother of a disabled child, and my husband and i have been told that jay may never leave home as he cannot do anything for himself, his learning difficulties are on such a great level.

 

I will look on youtube for the video you mentioned thankyou for that

 

It is nice to know i have support and there are others out there that can understand what we all go through, as i find alot of other people with mainstream children do not understand how hard this can be.

<'> ><

[Julieanne]

<'> >< <'> >< <'> >< <'> >< <'> Thankyou so much for the replys, it means so much and it is nice im not alone!!

 

 

 

 

 

 

[Sally44]

I've just checked the video on You Tube and it is by Amanda Baggs and is called 'In My Language'.

I saw it at a Wendy Lawson seminar, when someone asked her about how can we tell how intelligent someone is who is quite severly autistic. This woman in the audience said that she worked in a home with adults who could not communicate and yet she said that she often got the impression that although they did not talk or interact, that they did infact understand something of what she was saying or doing. Wendy went onto You Tube and played Amanda Baggs video to all of us.

[chris54]

Yep feel just the same.

[bikemad]

Yup another here.....in fact been pretty down today over it all.

[Athena]

Yes, sometime I feel like I am "grieving" for the person that my daughter would have been, but never will. Then I feel terribly guilty for wishing that she was different from how she is.....

 

I love her dearly, and I worry what the future will be like for her. Also I feel so resentful and angry about having to fight so d@mn hard for her to be properly educated, when other children just have an appropriate education given to them, because they are NT.

 

It is just so hard somedays, seeing other children running out of school, telling their parents all about their day at school, when DD doesn't...

 

Seeing other children playing with their friends - DD has NO friends. It just tears me apart; almost physically painful for me some days.

 

So yes, I feel the same some days.

 

Other days, I watch her playing, happily on her own, see her beautiful face, (she is stunningly beautiful, I know I am biased, but it is true) lit up with the biggest smile and my heart just fills with love and happiness that I am her Mother.

[Julieanne]

Yes, sometime I feel like I am "grieving" for the person that my daughter would have been, but never will. Then I feel terribly guilty for wishing that she was different from how she is.....

 

I love her dearly, and I worry what the future will be like for her. Also I feel so resentful and angry about having to fight so d@mn hard for her to be properly educated, when other children just have an appropriate education given to them, because they are NT.

 

It is just so hard somedays, seeing other children running out of school, telling their parents all about their day at school, when DD doesn't...

 

Seeing other children playing with their friends - DD has NO friends. It just tears me apart; almost physically painful for me some days.

 

So yes, I feel the same some days.

 

Other days, I watch her playing, happily on her own, see her beautiful face, (she is stunningly beautiful, I know I am biased, but it is true) lit up with the biggest smile and my heart just fills with love and happiness that I am her Mother.

 

 

I know exactly what you mean when you say you are grieving for the person your daughter would have been...I feel exactly same about my son. It is hard to watch other children doing the normal run of the mill things and knowing my son wont ever do them...it puts a lump in my throat. I love my son dearly, but i think as a parent of a severly mentally disabled child, it is something that will always stay with me, and im sure other parents can relate to that.

thinking of you all <'> >< <'> >< <'> >< <'> >< <'>

[A and A]

Hello, I havent posted for a while, busy moving house which i am thankful to say that with jay went very well

 

I have just been with my little nephew who is nearly 2 and still in nappies so mentally same as jay as jay is also in nappies still...and you cant but help feel a sense of loss..im not sure if i know how to explain it properly but it is kind of a ''smack in the face'' when u see a child that is 4 times younger then your own doing exactly same things, only my little nephew understands more and answers to things u ask him, with nodding of head etc, although my nephews speech isnt all there yet, i just felt like it brings it home to me more.

 

i was wondering if anyone here feels or has felt this way and im close to tears at the moment, i guess i thought i had come to terms with jays disability and exactly what it means for rest of his life, as in always living with us etc...but i dont think i have

 

Anyone relate to this?

 

Thankyou for any replies in advance

 

Julieanne <'>

Hi there Julieanne I know exactly how u feel we have a 2yr 8 month adorable boy who has his 1st assessment and blood tests, mri test and a mmuscle test is being arranged the paediatrician that saw Liam was fantastic and has got things moving, yes i feel a huge sense of loss we have just spent 2 weeks in china with my family and they have a little daughter who is two at christnmas and it was upsetting seeing her doing the things that Liam should be doing,we also looked at video footage that we recorded when he was a baby and he responded to voices and play which he doesn't now and that had me in tears as i feel we have lost the little boy in that video but we still love the little boy that we have very much.

Anna