I hate everything about having a child with special needs

[Anonymous]

I like this version of the Holland piece.

https://niederfamily.blogspot.com/2010/10/amsterdam-international.html?m=1

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I refuse to believe people like that Holland poem. I’m sorry. Trite crap.

Well, you are entitled to your opinion, but refusing to believe that people like it-doesn't mean that no one likes it.

I have a dc with SN, and I also have NT kids. You are not guaranteed a certain parenting experience with NT kids, either.

It's important for moms (and dads) of kids with SN to find a place for support. I'm not local, but in my area, there is an active FB group and occasional meetups (run in conjunction with an enrichment event for sn kids and their nt sibs). I find this a great source of support. Sn parenting can be isolating. You really do have to reach out and find your tribe.

I reached out and it worked for a bit, then it didn’t. I reached out and it didn’t work. I reached out and it worked for a little bit and the it didn’t. I reached out, I reached out, I reached out. I helped form many larger groups that are still active the DMV, but never found a smaller group that worked long term. Reaching out doesn’t always work. You are one of the fortunate if it has worked out long term for you. My sister has a group like that. It is fantastic for her. My kids are now in their twenties and I am sick of reaching out. I just take one day at a time and still hope for a better outcome for my kids.

There's always hope. One of my coworkers ds , a decade ago, was early 20s, didn't work or hardly leave the house. Now early 30s he works full time in a job where he is valued (at a burger chain) drives and lives in the inlaw unit of the parents house. He has a group of friends that share a common interest. My coworker is so proud of him. It took time.

[Anonymous]

Anonymous wrote:I hear you too. My DS is 19 and is at the functional level of a 6 yr old with a slew of medical issues and moderate behavioral issues.

I actually admitted to his pediatrician and his psychiatrist (both of whom he’s been with for years and years) that I’ve thought about just not giving him meds anymore or going through with all the diagnostic procedures he has routinely has to have. The struggle just to get a blood draw is crazy difficult. Just let him live out his life. They were both so supportive. I would never tell his specialists that or even most people that I was thinking this.

People say take a break - go away. Ok, I have (luckily I have a supportive husband - not everyone is in this situation) but I know when I get back it’s the same 24/7 care I needed to do before I left.

Sometimes you are literally at a point where the break is worse than No Break b/c of what you will come back to.

[Anonymous]

Has anyone figured out a way to make you feel better about your life having to take care of a special needs kid? Is it finding friends in similar situations, therapy, more frequent “breaks” incorporated into your life? I’ve been in the deep pit for years with my special needs child (and also with my “typical children- one almost died from an eating disorder at 10, etc.) but being able to have little breaks with friends definitely helps. I don’t know what the future holds either.

[Anonymous]

Anonymous wrote:I’m sorry, OP. Completely valid.

+1

[Anonymous]

The Holland poem is so frustrating because it assumes there are unique charms to the situation. There are no cute upsides to a failure to toilet train. There are no cute upsides to aggressive outbursts and mental hospitals. Every child has some unique thing about them perhaps for parenting. I love my child but I refuse to be insulted that I had to get these parts to get those special things. It just sucks. And it isn’t about finding my tribe either.

With you OP. Wish I had more than that. More realistic to me is that everyone gets crap things in life. My kid and I got these. Other people have horrible health problems, are victims of crimes. None of it all is good. We live with them and try to fix what we can.

[Anonymous]

Anonymous wrote:

Anonymous wrote:im always in the minority on this board with this but i found the welcome to holland thing v helpful. YMMV.

Sure, except it’s not Holland. I booked a beach resort with waves and palm trees and got Times Square in the city that never sleeps with blaring sirens everywhere. My nerves are shot, I’m always ON and I have a pounding headache.

I feel like the holland thing is a good metaphor for regular parenting. I expected my kids would want to do X with me, I planned to share Y with them but then it turns out they hate x and y and so I had to get into Z instead. But the SN parenting sometimes feels more llle you got sent to a war zone — someplace that no one would voluntarily pick and which is filled with high stakes hazards and yeah maybe the country had some great underlying qualities if you could find a quiet moment when the bombs aren’t falling to explore those.

I think one thing that is hard about SN parenting and making connections is that the journey is so different for each of us. (Remember Tolstoy —- all happy families are similar, but unhappy families are each unhappy in their own way). My kid has made so much progress over almost 20 years —- but I know that’s not in the cards for everyone. The war zone metaphor does work well because some places are just in perpetual conflict, whereas others move to a place that is more likeable, and that change can be gradual or come in fits and starts. Everyone’s on a different journey.

OP, I hope we’ve validated your feelings and given you some confort. It is hard.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:im always in the minority on this board with this but i found the welcome to holland thing v helpful. YMMV.

Sure, except it’s not Holland. I booked a beach resort with waves and palm trees and got Times Square in the city that never sleeps with blaring sirens everywhere. My nerves are shot, I’m always ON and I have a pounding headache.

I feel like the holland thing is a good metaphor for regular parenting. I expected my kids would want to do X with me, I planned to share Y with them but then it turns out they hate x and y and so I had to get into Z instead. But the SN parenting sometimes feels more llle you got sent to a war zone — someplace that no one would voluntarily pick and which is filled with high stakes hazards and yeah maybe the country had some great underlying qualities if you could find a quiet moment when the bombs aren’t falling to explore those.

I think one thing that is hard about SN parenting and making connections is that the journey is so different for each of us. (Remember Tolstoy —- all happy families are similar, but unhappy families are each unhappy in their own way). My kid has made so much progress over almost 20 years —- but I know that’s not in the cards for everyone. The war zone metaphor does work well because some places are just in perpetual conflict, whereas others move to a place that is more likeable, and that change can be gradual or come in fits and starts. Everyone’s on a different journey.

OP, I hope we’ve validated your feelings and given you some confort. It is hard.

Very well put. Thank you. Not OP

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:im always in the minority on this board with this but i found the welcome to holland thing v helpful. YMMV.

Sure, except it’s not Holland. I booked a beach resort with waves and palm trees and got Times Square in the city that never sleeps with blaring sirens everywhere. My nerves are shot, I’m always ON and I have a pounding headache.

I feel like the holland thing is a good metaphor for regular parenting. I expected my kids would want to do X with me, I planned to share Y with them but then it turns out they hate x and y and so I had to get into Z instead. But the SN parenting sometimes feels more llle you got sent to a war zone — someplace that no one would voluntarily pick and which is filled with high stakes hazards and yeah maybe the country had some great underlying qualities if you could find a quiet moment when the bombs aren’t falling to explore those.

I think one thing that is hard about SN parenting and making connections is that the journey is so different for each of us. (Remember Tolstoy —- all happy families are similar, but unhappy families are each unhappy in their own way). My kid has made so much progress over almost 20 years —- but I know that’s not in the cards for everyone. The war zone metaphor does work well because some places are just in perpetual conflict, whereas others move to a place that is more likeable, and that change can be gradual or come in fits and starts. Everyone’s on a different journey.

OP, I hope we’ve validated your feelings and given you some confort. It is hard.

First line is spot on! My NT kid prefers country music to my 90s grunge, and sports instead of my museums and theater. So I suck it up and listen to country and ball games in the car. And I’ve developed an appreciation for those things from him. And that’s nice.

My ND kid requires appointments and tutoring and meds and a lot of 1-1 time and meltdowns and constant emails from teachers and feeling like I’ve failed in every way possible. And yes she has her own strengths and things I love but it’s not a matter of “oh, ok, not what I was planning but it’s still a great place that I would recommend to others”

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I refuse to believe people like that Holland poem. I’m sorry. Trite crap.

Well, you are entitled to your opinion, but refusing to believe that people like it-doesn't mean that no one likes it.

I have a dc with SN, and I also have NT kids. You are not guaranteed a certain parenting experience with NT kids, either.

It's important for moms (and dads) of kids with SN to find a place for support. I'm not local, but in my area, there is an active FB group and occasional meetups (run in conjunction with an enrichment event for sn kids and their nt sibs). I find this a great source of support. Sn parenting can be isolating. You really do have to reach out and find your tribe.

I reached out and it worked for a bit, then it didn’t. I reached out and it didn’t work. I reached out and it worked for a little bit and the it didn’t. I reached out, I reached out, I reached out. I helped form many larger groups that are still active the DMV, but never found a smaller group that worked long term. Reaching out doesn’t always work. You are one of the fortunate if it has worked out long term for you. My sister has a group like that. It is fantastic for her. My kids are now in their twenties and I am sick of reaching out. I just take one day at a time and still hope for a better outcome for my kids.

There's always hope. One of my coworkers ds , a decade ago, was early 20s, didn't work or hardly leave the house. Now early 30s he works full time in a job where he is valued (at a burger chain) drives and lives in the inlaw unit of the parents house. He has a group of friends that share a common interest. My coworker is so proud of him. It took time.

I was responding to the pp who talked about parents getting support with other parents, not about the trajectory of our children.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I refuse to believe people like that Holland poem. I’m sorry. Trite crap.

Well, you are entitled to your opinion, but refusing to believe that people like it-doesn't mean that no one likes it.

I have a dc with SN, and I also have NT kids. You are not guaranteed a certain parenting experience with NT kids, either.

It's important for moms (and dads) of kids with SN to find a place for support. I'm not local, but in my area, there is an active FB group and occasional meetups (run in conjunction with an enrichment event for sn kids and their nt sibs). I find this a great source of support. Sn parenting can be isolating. You really do have to reach out and find your tribe.

I reached out and it worked for a bit, then it didn’t. I reached out and it didn’t work. I reached out and it worked for a little bit and the it didn’t. I reached out, I reached out, I reached out. I helped form many larger groups that are still active the DMV, but never found a smaller group that worked long term. Reaching out doesn’t always work. You are one of the fortunate if it has worked out long term for you. My sister has a group like that. It is fantastic for her. My kids are now in their twenties and I am sick of reaching out. I just take one day at a time and still hope for a better outcome for my kids.

There's always hope. One of my coworkers ds , a decade ago, was early 20s, didn't work or hardly leave the house. Now early 30s he works full time in a job where he is valued (at a burger chain) drives and lives in the inlaw unit of the parents house. He has a group of friends that share a common interest. My coworker is so proud of him. It took time.

I was responding to the pp who talked about parents getting support with other parents, not about the trajectory of our children.

Ok, thanks for sharing.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I refuse to believe people like that Holland poem. I’m sorry. Trite crap.

Well, you are entitled to your opinion, but refusing to believe that people like it-doesn't mean that no one likes it.

I have a dc with SN, and I also have NT kids. You are not guaranteed a certain parenting experience with NT kids, either.

It's important for moms (and dads) of kids with SN to find a place for support. I'm not local, but in my area, there is an active FB group and occasional meetups (run in conjunction with an enrichment event for sn kids and their nt sibs). I find this a great source of support. Sn parenting can be isolating. You really do have to reach out and find your tribe.

I reached out and it worked for a bit, then it didn’t. I reached out and it didn’t work. I reached out and it worked for a little bit and the it didn’t. I reached out, I reached out, I reached out. I helped form many larger groups that are still active the DMV, but never found a smaller group that worked long term. Reaching out doesn’t always work. You are one of the fortunate if it has worked out long term for you. My sister has a group like that. It is fantastic for her. My kids are now in their twenties and I am sick of reaching out. I just take one day at a time and still hope for a better outcome for my kids.

There's always hope. One of my coworkers ds , a decade ago, was early 20s, didn't work or hardly leave the house. Now early 30s he works full time in a job where he is valued (at a burger chain) drives and lives in the inlaw unit of the parents house. He has a group of friends that share a common interest. My coworker is so proud of him. It took time.

I was responding to the pp who talked about parents getting support with other parents, not about the trajectory of our children.

Ok, thanks for sharing.

you are most welcome

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:im always in the minority on this board with this but i found the welcome to holland thing v helpful. YMMV.

Sure, except it’s not Holland. I booked a beach resort with waves and palm trees and got Times Square in the city that never sleeps with blaring sirens everywhere. My nerves are shot, I’m always ON and I have a pounding headache.

I feel like the holland thing is a good metaphor for regular parenting. I expected my kids would want to do X with me, I planned to share Y with them but then it turns out they hate x and y and so I had to get into Z instead. But the SN parenting sometimes feels more llle you got sent to a war zone — someplace that no one would voluntarily pick and which is filled with high stakes hazards and yeah maybe the country had some great underlying qualities if you could find a quiet moment when the bombs aren’t falling to explore those.

I think one thing that is hard about SN parenting and making connections is that the journey is so different for each of us. (Remember Tolstoy —- all happy families are similar, but unhappy families are each unhappy in their own way). My kid has made so much progress over almost 20 years —- but I know that’s not in the cards for everyone. The war zone metaphor does work well because some places are just in perpetual conflict, whereas others move to a place that is more likeable, and that change can be gradual or come in fits and starts. Everyone’s on a different journey.

OP, I hope we’ve validated your feelings and given you some confort. It is hard.

First line is spot on! My NT kid prefers country music to my 90s grunge, and sports instead of my museums and theater. So I suck it up and listen to country and ball games in the car. And I’ve developed an appreciation for those things from him. And that’s nice.

My ND kid requires appointments and tutoring and meds and a lot of 1-1 time and meltdowns and constant emails from teachers and feeling like I’ve failed in every way possible. And yes she has her own strengths and things I love but it’s not a matter of “oh, ok, not what I was planning but it’s still a great place that I would recommend to others”

I think it does apply to some ND parenting. It is where there is tension between parents of children with moderate and high support needs vs parents of children with truly low support needs. My ND child is definitely ND but she has very low support needs right now. Yes there are meltdowns and appointments but it is not all consuming. The Holland piece while still kind of cringe for me given what I know about what too many parents are going through, basically feels relatable for our specific situation.

[Anonymous]

Sorry OP. I feel you. I'm just at my absolute limit myself.

[Anonymous]

We hear you🤗❤️