Deaths of disabled kids

[Anonymous]

I'll preface this by saying that I have a child with a severe motoric disability.

Just heard a few days ago of the fourth child this year that we know who passed away suddenly, a child with severe disabilities. Basically going to bed at night and not waking up in morning.

I'm not talking about children who were dying or were on life support or had no activities so I hope no one comes back with "It was for the best" or tropes like that. I'm talking about children going to school, going to camp, children who had friends, activities, vibrant, aware, social beloved children who died suddenly.

It is very hard to cope with this and to explain this to my child. It is so hard to go to funerals for children and young people. It is so difficult to see their parents' grief.

And it is difficult to read posts from parents here about how they wish their SN children were not around. Sorry, but it is. Each of these deaths terrifies me for my child.

Thank you for being kind or for any words of support.

[Anonymous]

It is so sad whenever a child dies. I am sorry you have experienced that in your circle so frequently. I will never forget the searing grief at the first funeral of a child I attended. I was 11 and it still makes me tear up to think of the family and the size of the coffin.

In our family we only share news about death when it is directly relevant to our young children, like someone they know well or see regularly. That helps a lot for us as our kids have anxiety as part of their challenges.

I have worked with our therapis to process my own feelings and better be able to help my kids process their feelings of grief too. My kids tend to get stuck on the topic of death and worry if their parents will die too. This is one of my worries and I notice whenever a healthy young adult dies suddenly. Of course my definition of young keeps getting older as I do.

We try to focus on empowering the kids to do something for the grieving family (make a picture of a memory) and then we use our faith to explain life after death. But the emotional message is that it is ok to be really sad/ grieve. And sometimes the only thing you can do to help is to be there with people while they grieve too.

I try not to read those other posts. I think those parents are struggling. And they may have never experienced the death of a child in their family. I think it changes your point of view.

[Anonymous]

I'm so sorry for your loss.

Truly, I don't think parents expressing regret or even some parents looking for boarding schools wish that their kids were dead.

There's a lot more complaining on the General and other Parenting forums, like not being able to stand being in the house with your toddler, or your elementary God forbid what's to pretend play with you for more than 10 minutes. These people get tons of support. Meanwhile if a SN parent complains there called a bad parent.

[Anonymous]

I'm sorry OP. Just wanted to mention that to others sometimes deaths seem random and unexpected. But that's not always the case. I have a son who in addition to having special needs has a cardiac condition for which there is no treatment. He is at risk of sudden death. There are no outward signs. Also if the condition had caused his death before it had been diagnosed it wouldn't show on an autopsy.

I also find some of the complaining difficult to read - I feel that way on the other forums as well.

[Anonymous]

I don't mean to unkind or snarky and I hope you don't take my post this way. I just posted on the other thread about regretting having my child with SN. One of the things that struck me about your post was this:

I'm talking about children going to school, going to camp, children who had friends, activities, vibrant, aware, social beloved children who died suddenly.

My child with SN goes to school but he's not any of those things you describe. He requires 24/7 care. He doesn't have friends nor does he engage in extra-curricular activities by choice. He goes to a summer 'camp' for kids with significant disabilities which isn't much different than daycare. He doesn't engage in social, reciprocal relationships. We love him and would feel his absence but I can't say we would grieve.

I'm sure that's very troubling for you to hear because your experience is much different than mine. Maybe you also have greater capacity to handle it for years on end with no relief in site. I have an older child with ADHD/LDs. My oldest required a lot of interventions when he was younger but we never felt as challenged or disheartened by his disabilities as we have our youngest. They are in two totally different levels. I mostly feel depleted and used up. I feel like I have no reserve and am no longer resilient. It's not depression (I'm well medicated for that). It's just a fact of my life. You can't begrudge me for wishing my life were different than what it is.

[Anonymous]

Anonymous wrote:I'll preface this by saying that I have a child with a severe motoric disability.

Just heard a few days ago of the fourth child this year that we know who passed away suddenly, a child with severe disabilities. Basically going to bed at night and not waking up in morning.

I'm not talking about children who were dying or were on life support or had no activities so I hope no one comes back with "It was for the best" or tropes like that. I'm talking about children going to school, going to camp, children who had friends, activities, vibrant, aware, social beloved children who died suddenly.

It is very hard to cope with this and to explain this to my child. It is so hard to go to funerals for children and young people. It is so difficult to see their parents' grief.

And it is difficult to read posts from parents here about how they wish their SN children were not around. Sorry, but it is. Each of these deaths terrifies me for my child.

Thank you for being kind or for any words of support.

OP this just happened to the child of a teacher at my DD's high school...perhaps this is what you're referencing.

When I read the heartbreaking email from our school principal I just started crying and crying. It was so difficult to read and truly I almost couldn't get through the email.

The sudden death of a child is something that is beyond my comprehension. A close friend of mine actually went through this earlier this year when her 19 year old DD was killed in a car accident. Literally she was there, and then gone. Had posted something on Facebook just a few hours earlier, and then just gone. It took a long time for me to even believe it really happened and her mom (my friend) is obviously having a very difficult time just getting through each day.

[Anonymous]

Anonymous wrote:I don't mean to unkind or snarky and I hope you don't take my post this way. I just posted on the other thread about regretting having my child with SN. One of the things that struck me about your post was this:

I'm talking about children going to school, going to camp, children who had friends, activities, vibrant, aware, social beloved children who died suddenly.

My child with SN goes to school but he's not any of those things you describe. He requires 24/7 care. He doesn't have friends nor does he engage in extra-curricular activities by choice. He goes to a summer 'camp' for kids with significant disabilities which isn't much different than daycare. He doesn't engage in social, reciprocal relationships. We love him and would feel his absence but I can't say we would grieve.

I'm sure that's very troubling for you to hear because your experience is much different than mine. Maybe you also have greater capacity to handle it for years on end with no relief in site. I have an older child with ADHD/LDs. My oldest required a lot of interventions when he was younger but we never felt as challenged or disheartened by his disabilities as we have our youngest. They are in two totally different levels. I mostly feel depleted and used up. I feel like I have no reserve and am no longer resilient. It's not depression (I'm well medicated for that). It's just a fact of my life. You can't begrudge me for wishing my life were different than what it is.

OP here. I don't begrudge you. My heart goes out to you. I am not trying to indict you and would hope you don't feel worse as a result of my post. Just having a rough night. Thanks for posting and telling about your situation. If I knew you, I would say let's go out for pedicures.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I'll preface this by saying that I have a child with a severe motoric disability.

Just heard a few days ago of the fourth child this year that we know who passed away suddenly, a child with severe disabilities. Basically going to bed at night and not waking up in morning.

I'm not talking about children who were dying or were on life support or had no activities so I hope no one comes back with "It was for the best" or tropes like that. I'm talking about children going to school, going to camp, children who had friends, activities, vibrant, aware, social beloved children who died suddenly.

It is very hard to cope with this and to explain this to my child. It is so hard to go to funerals for children and young people. It is so difficult to see their parents' grief.

And it is difficult to read posts from parents here about how they wish their SN children were not around. Sorry, but it is. Each of these deaths terrifies me for my child.

Thank you for being kind or for any words of support.

OP this just happened to the child of a teacher at my DD's high school...perhaps this is what you're referencing.

When I read the heartbreaking email from our school principal I just started crying and crying. It was so difficult to read and truly I almost couldn't get through the email.

The sudden death of a child is something that is beyond my comprehension. A close friend of mine actually went through this earlier this year when her 19 year old DD was killed in a car accident. Literally she was there, and then gone. Had posted something on Facebook just a few hours earlier, and then just gone. It took a long time for me to even believe it really happened and her mom (my friend) is obviously having a very difficult time just getting through each day.

I don't know this child, but it's been a bad year. So sorry.