Anonymous
Post 12/22/2011 22:57     Subject: Advice needed regarding maintaining friendship with close friend with severely disabled child
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:Empathetic PP here and I work with SN children. A very common statement in our field is that the biggest handicap the children have are the PARENTS. Life is hard for everybody and just because our challenges are different it doesn't mean people out there can't understand or relate to your reality.


Ah yes, the Special Needs worker who thinks that she knows more than the parents do about their own children and their disabilities. Truly a delight to deal with. Yes, just the other day the special needs aide at my daughter's kindergarten informed me that "in a few years, this will all be a haze...she will be running all over place, talking like crazy." Yeah. I guess it's just my big ole bad attitude that's holding her back.


She was trying to be kind, PP. I don't know why you interpreted her comment as an insult to your parenting. Again, have a little empathy for those who are trying to reach out but don't always say the right thing.


Not the PP you're quoting but someone familiar with these scenarios. The SN aide may have been trying to be kind but, like Special Needs worker, she was really showing her ignorance. These statements are more typical of someone who has no experience with SN kids. Statements like this are double edged. They may seem encouraing but also indicate the parent is over-reacting or reading too much into something. Considering Special Needs worker and her co-workers feel the biggest handicap to the children are their parents, I'd be insulted, too.


Yes, thank you, exactly. It's not an insult on my parenting, it's just totally inane and annoying to hear this coming from someone who also thinks she knows more than I do.


No, dear. We just see things from a different POV. Your bitterness is blinding you.
Anonymous
Post 12/22/2011 22:38     Subject: Advice needed regarding maintaining friendship with close friend with severely disabled child
Thank you, 22:30. So beautifully put.
Anonymous
Post 12/22/2011 22:30     Subject: Re:Advice needed regarding maintaining friendship with close friend with severely disabled child
This from a friend who went though a multi-year medical nightmare with her teenaged child:

Even "tell me what I can do to help" is a demand. I don't have time or brain space for any demands except [son]'s.

She went on to say that the best thing anyone did for her was to leave love on her answering machine. Love with no demands. She had one friend who called daily to say "I love you, you're in my prayers." There was no "call me when you get time" or "let me know if you need anything", because those would have required thought on the part of the mother of the sick kid.

So you could try this. Give without asking for or expecting anything in return. Don't do it in the hopes of saving your friendship... do it in the hopes of saving your friend. Even if there's nothing in it for you.
Anonymous
Post 12/22/2011 22:20     Subject: Advice needed regarding maintaining friendship with close friend with severely disabled child
Anonymous wrote:
Anonymous wrote:Empathetic PP here and I work with SN children. A very common statement in our field is that the biggest handicap the children have are the PARENTS. Life is hard for everybody and just because our challenges are different it doesn't mean people out there can't understand or relate to your reality.


Ah yes, the Special Needs worker who thinks that she knows more than the parents do about their own children and their disabilities. Truly a delight to deal with. Yes, just the other day the special needs aide at my daughter's kindergarten informed me that "in a few years, this will all be a haze...she will be running all over place, talking like crazy." Yeah. I guess it's just my big ole bad attitude that's holding her back.


How depressing that someone with no empathy for parents of kids with SN works in this field. I really hope you share these thoughts with your supervisor so you can work through them because you should not be in your field if you blame parents like this.
Anonymous
Post 12/22/2011 19:04     Subject: Advice needed regarding maintaining friendship with close friend with severely disabled child
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:Empathetic PP here and I work with SN children. A very common statement in our field is that the biggest handicap the children have are the PARENTS. Life is hard for everybody and just because our challenges are different it doesn't mean people out there can't understand or relate to your reality.


Ah yes, the Special Needs worker who thinks that she knows more than the parents do about their own children and their disabilities. Truly a delight to deal with. Yes, just the other day the special needs aide at my daughter's kindergarten informed me that "in a few years, this will all be a haze...she will be running all over place, talking like crazy." Yeah. I guess it's just my big ole bad attitude that's holding her back.


She was trying to be kind, PP. I don't know why you interpreted her comment as an insult to your parenting. Again, have a little empathy for those who are trying to reach out but don't always say the right thing.


Not the PP you're quoting but someone familiar with these scenarios. The SN aide may have been trying to be kind but, like Special Needs worker, she was really showing her ignorance. These statements are more typical of someone who has no experience with SN kids. Statements like this are double edged. They may seem encouraing but also indicate the parent is over-reacting or reading too much into something. Considering Special Needs worker and her co-workers feel the biggest handicap to the children are their parents, I'd be insulted, too.


Yes, thank you, exactly. It's not an insult on my parenting, it's just totally inane and annoying to hear this coming from someone who also thinks she knows more than I do.
Anonymous
Post 12/22/2011 17:18     Subject: Advice needed regarding maintaining friendship with close friend with severely disabled child
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:Empathetic PP here and I work with SN children. A very common statement in our field is that the biggest handicap the children have are the PARENTS. Life is hard for everybody and just because our challenges are different it doesn't mean people out there can't understand or relate to your reality.


Ah yes, the Special Needs worker who thinks that she knows more than the parents do about their own children and their disabilities. Truly a delight to deal with. Yes, just the other day the special needs aide at my daughter's kindergarten informed me that "in a few years, this will all be a haze...she will be running all over place, talking like crazy." Yeah. I guess it's just my big ole bad attitude that's holding her back.


She was trying to be kind, PP. I don't know why you interpreted her comment as an insult to your parenting. Again, have a little empathy for those who are trying to reach out but don't always say the right thing.


Not the PP you're quoting but someone familiar with these scenarios. The SN aide may have been trying to be kind but, like Special Needs worker, she was really showing her ignorance. These statements are more typical of someone who has no experience with SN kids. Statements like this are double edged. They may seem encouraing but also indicate the parent is over-reacting or reading too much into something. Considering Special Needs worker and her co-workers feel the biggest handicap to the children are their parents, I'd be insulted, too.
Anonymous
Post 12/22/2011 15:25     Subject: Advice needed regarding maintaining friendship with close friend with severely disabled child
Anonymous wrote:
Anonymous wrote:Empathetic PP here and I work with SN children. A very common statement in our field is that the biggest handicap the children have are the PARENTS. Life is hard for everybody and just because our challenges are different it doesn't mean people out there can't understand or relate to your reality.


Ah yes, the Special Needs worker who thinks that she knows more than the parents do about their own children and their disabilities. Truly a delight to deal with. Yes, just the other day the special needs aide at my daughter's kindergarten informed me that "in a few years, this will all be a haze...she will be running all over place, talking like crazy." Yeah. I guess it's just my big ole bad attitude that's holding her back.


She was trying to be kind, PP. I don't know why you interpreted her comment as an insult to your parenting. Again, have a little empathy for those who are trying to reach out but don't always say the right thing.
Anonymous
Post 12/22/2011 14:29     Subject: Advice needed regarding maintaining friendship with close friend with severely disabled child
Anonymous wrote:Empathetic PP here and I work with SN children. A very common statement in our field is that the biggest handicap the children have are the PARENTS. Life is hard for everybody and just because our challenges are different it doesn't mean people out there can't understand or relate to your reality.


Ah yes, the Special Needs worker who thinks that she knows more than the parents do about their own children and their disabilities. Truly a delight to deal with. Yes, just the other day the special needs aide at my daughter's kindergarten informed me that "in a few years, this will all be a haze...she will be running all over place, talking like crazy." Yeah. I guess it's just my big ole bad attitude that's holding her back.
Anonymous
Post 12/22/2011 14:22     Subject: Advice needed regarding maintaining friendship with close friend with severely disabled child
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:This isn't even REMOTELY relevant to what OP's situation is. Why in the world would you even think that it is!?


Because self-centered people like this poster see themselves in every situation....?


Some people have a little thing called EMPATHY and they can try to fit into other's shoes and try to help. That's all.


Honey, that's not 'empathy' because it's NOTHING like OP's situation. I've got SN kids and it's people like you who think that experience allows you to understand what my challenges and then 'share' your story that really burn me up. It's like trying to commiserate with a cancer patient based on your experience with an ingrown toenail from a bad pedicure. Not the same at all!


Empathetic PP here and I work with SN children. A very common statement in our field is that the biggest handicap the children have are the PARENTS. Life is hard for everybody and just because our challenges are different it doesn't mean people out there can't understand or relate to your reality.

People like you give SN moms a bad name. Get over it already. You're not the only one and your situation is not the worst ever.


So you really think your experience with your friend who stayed with one guy for 12 years (!) and messed up is similar to OP situation with a friend who has a severely disabled child? You really think your experience with your friend has given you insight into OP’s situation?

I’ve never said my situation is the worst. I know a lot of people who have kids with far more significant challenges but I know anyone whose experience with a friend who makes poor choices has made them better able to understand my situation. And, that you and your colleagues think
the biggest handicap the children have are the PARENTS.
is unfathomable. There are certainly parents who could do a better job with their kids but I’ve been so impressed and touched by the SN parents I’ve met. They are incredibly knowledgeable, supportive and empathetic. That you can’t see that really shows how little you understand the challenges of raising SN kids and how shallow your emotional intelligence is. How could you have any capacity for empathy?
Anonymous
Post 12/22/2011 12:54     Subject: Re:Advice needed regarding maintaining friendship with close friend with severely disabled child
I can understand what kind of place your friend is in, OP. I know that it's wrong but for a long time after my SN DC was born and I was just dealing with the day-to-day and also coming to terms with what the rest of our lives were going to be like because of the SN, I wasn't a good friend. I was exhausted, overwhelmed, etc. One of the things that held me back from interacting with others was that it really bothered me when they (even justifiably) complained about mundane things using words like "horrible" and "terrible". Such as, "oh, I was stuck in traffic for 40 minutes without moving and it was horrible" or some such things when I had been witnessing my baby and then child have a horrific quality of life. One of the only friends I actually could understand and relate to was someone whose DH was diagnosed with terminal cancer. We didn't need to share out experiences too much but we could just "be" with each other. People really don't know what to say to someone going through something awful (perhaps there is no good thing) but when someone you love is hooked up to tubes or suffering and it's not going to end well, you're really just not sympathetic to others' minor inconveniences.
Anonymous
Post 12/22/2011 12:47     Subject: Re:Advice needed regarding maintaining friendship with close friend with severely disabled child
Anonymous wrote:OP here - thanks PPs. I am definitely not angry with her - though others in our group are. I keep telling myself that I have no right to expect anything from her but I have the capacity to continue to give (emotionally) so will do so. But I would like not to be operating in a vaccum (l would love for her to say...look I love you but it's too hard to be in touch with you right now...or something similar). I don't know if I should try to broach the subject with her in some kind of way or just let it be. Probably just let it be. Another close friend wrote her an email expressing her feelings in the most positive and supportive way possible and she took it as criticism that she wasn't being a good enough friend. I last saw her last Spring when her father passed away unexpectedly. She was very close to him and he was young and fit so this was another huge blow. I took a week off of work to help her and her mom plan the funeral, cooked for her, tried to help her take care of her son. She was mildly appreciative and her husband was just a total jerk. She is pregnant again, after a miscarriage last year, and is expecting a healthy baby girl in Jan. I don't know if adding a newborn to the mix will be good for them or make their lives even more difficult. I've offered to come without my kids while she is on maternity leave to cook, clean, watch one or both kids so she can nap, etc, etc. Was met with a decidely lukewarm response. We'll see. I love her so much and she is really like a sister to me and I just want to help.



Haven't read all responses to forgive me if I repeat something. First, it's so good that you care and don't resent her. I have a child with SN that are milder than your friend's child's SN, much milder, but I still have been completely overwhelmed. There was a time when we thought he would never talk. I got so sick of driving to all the therapy appointments for him as every child around me hit milestones so effortlessly. What I HATED was when friends caused drama. You didn't do this, but the girl emailing did, I don't care how nice she is. Your friend is exhausted and has not 1 ounce to give. I think the best thing you can do is tell you group to either offer support or ef off. Don't confront her about anything. I can understand why she was hurt. She doesn't need this. She is running on empty. Don't expect her to be able to return calls or apologize or anything. Just offer support and cheer her on. OP you are doing the right thing, but please work on the rest of your group. The LAST thing anyone should do is cause this woman more stress. No "polite" confrontations. Encourage your friends to be kind without expecting anything in return and to cut her some slack if she says the wrong thing in a monent of exasperation and exhaustion.
Anonymous
Post 12/22/2011 12:40     Subject: Advice needed regarding maintaining friendship with close friend with severely disabled child
OP, this is such a hard situation to read. I'm a mom of both an NT and an SN kid, and I have been in both your situation and your friends. And all I can say is that you don't get it until you get it. I have an enormous amount of natural energy and still I am exhausted - physically and emotionally - at the end of each day. I've recently realized how I have alienated so many of my friends simply because I'm too damn tired to contact them and to act interested in their lives. I don't call/email/text because I know it's rude not to at least act interested, and I just don't have it in me to fake it. I guess I assume, "how bad could your life really be?" I know that's terrible and terribly unfriendly, but it's my truth right now. The whole situation has left me feeling like a shitty friend. I hope my friends stick it out and we find each other again once things become easier. Maybe reach out to her about a shared topic unrelated to kids. Book club? Film club? Gardening? Just don't talk about kids. Let her show you how capable she is in other areas of her life. Because I bet she often feels like a failure in her parenting life. good luck.
Anonymous
Post 12/22/2011 12:35     Subject: Advice needed regarding maintaining friendship with close friend with severely disabled child
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:This isn't even REMOTELY relevant to what OP's situation is. Why in the world would you even think that it is!?


Because self-centered people like this poster see themselves in every situation....?


Some people have a little thing called EMPATHY and they can try to fit into other's shoes and try to help. That's all.


Honey, that's not 'empathy' because it's NOTHING like OP's situation. I've got SN kids and it's people like you who think that experience allows you to understand what my challenges and then 'share' your story that really burn me up. It's like trying to commiserate with a cancer patient based on your experience with an ingrown toenail from a bad pedicure. Not the same at all!


Empathetic PP here and I work with SN children. A very common statement in our field is that the biggest handicap the children have are the PARENTS. Life is hard for everybody and just because our challenges are different it doesn't mean people out there can't understand or relate to your reality.

People like you give SN moms a bad name. Get over it already. You're not the only one and your situation is not the worst ever.


The biggest challenge of SN kids are their parents?!?

Lady you are seriously diluded. Get a new job because you have no idea what the heck you are doing.


Yes, for some of them YES. Not all.

I've met enough of the kind that think their kids can't do this, can't do that... And they're the worst kind. Always with their heads down - like OP's friend shutting other people off thinking their life is the worst of everything on Earth. This people become rude and bitter.

But fortunately there are those who can see the brighter side, the ones who see the cup half full and it's a delight to work with such parents. These are the ones who empower their children instead of handicapping them.

When I chose my profession I made a commitment to those children and I'm glad to say that I'm very happy doing my job and the kids from my first example are the ones that need me the most. I'm where I am today because of them!
Anonymous
Post 12/22/2011 12:09     Subject: Re:Advice needed regarding maintaining friendship with close friend with severely disabled child
OP I think you are doing all the right things, but maybe a few suggestions.

1) Don't listen to rumors or feed them to friends. (e.g. your comment about her not being able to handle another child could very well get back to her so could the 'she resents me because I have a normal son' comment)
2) Ask her if there is anything you could do to help or get together, etc. It's nice of you to try to anticipate her needs, but it might come off as presumptive or completely clueless to her.
3) There is something going on that you don't know about. Her husband's reaction to you was not normal, it almost seemed like he wanted to protect her from you. Maybe something was said that really offended him or maybe he was having a tough week. Best way to find out is to ask.
4) Give her space, but check in every so often to see if she would like to get together. If she declines but seems interested at someother time to meet up, keep trying. If she expresses no interest in ever meeting up then continue to give her space.
Anonymous
Post 12/22/2011 11:58     Subject: Advice needed regarding maintaining friendship with close friend with severely disabled child
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:This isn't even REMOTELY relevant to what OP's situation is. Why in the world would you even think that it is!?


Because self-centered people like this poster see themselves in every situation....?


Some people have a little thing called EMPATHY and they can try to fit into other's shoes and try to help. That's all.


Honey, that's not 'empathy' because it's NOTHING like OP's situation. I've got SN kids and it's people like you who think that experience allows you to understand what my challenges and then 'share' your story that really burn me up. It's like trying to commiserate with a cancer patient based on your experience with an ingrown toenail from a bad pedicure. Not the same at all!


Empathetic PP here and I work with SN children. A very common statement in our field is that the biggest handicap the children have are the PARENTS. Life is hard for everybody and just because our challenges are different it doesn't mean people out there can't understand or relate to your reality.

People like you give SN moms a bad name. Get over it already. You're not the only one and your situation is not the worst ever.


The biggest challenge of SN kids are their parents?!?

Lady you are seriously diluded. Get a new job because you have no idea what the heck you are doing.