Special needs parenting quandary

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1990Domer

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Hi Everyone:

Many of you may know that I have a son on the autism spectrum. Specifically, he is grandfathered with an Aspergers diagnosis from the DSM-IV, which was taken out in the latest version of the DSM. So, now, he has ASD or autism spectrum disorder. His biggest challenge is social skills, but he is a polite, friendly, kind and cooperative kid (these words come from his latest evaluation for school services).

He had a horrific Catholic school experience, which was the last brick and mortar placement we had him in. We chose cyber school, because our local school district is in financial dire straights and had failed him academically in the past (they failed to recognize his shutting down in class as low IQ. IQ was not the issue, but a sarcastic teacher going through a divorce was). We were actually able to draw away a laid-off intervention specialist to work with DS during his live cyber school classes.

That’s the background. Here’s what I am finding. I am trying to keep him socially involved. Sadly, we live in a fairly lucrative area of PA where there are a lot of entitled kids with parents who see their children more as accessories. Honestly, they don’t parent. The stunts they let their kids get away with is horrific. Granted, there are a few good kids, but scheduling issues make life difficult. Organized sports is a nightmare–way too competitive. We have tried various clubs, but the kids are ill behaved and quickly ID my son as weird.

I want to forget the ten tons of pressure I am getting to keep my kid social and just allow him to heal from the negative socialization he has experienced in the last couple years (my therapy bills prove that out). The two friends he has are going through their own hell right now, as their dad died a week ago from cancer. So, we are laying low with them because of their anger management problems.

The BIG question…does anyone see me being weak here? I am as emotionally spent as my son, especially in the advocacy department. I really feel for my son. He does not deserve this treatment.

Thank you for reading and prayers, as always.
 
Can your family take this opportunity to be a shining light in the lives of these two boys who lost their father to cancer?

I posted and thought, “I wonder if that looks like a passive aggressive comment?” but I assure you it is not. Seriously, you all could do a whole lot for them right now.
 
HouseArrest said:
Can your family take this opportunity to be a shining light in the lives of these two boys who lost their father to cancer?

I posted and thought, “I wonder if that looks like a passive aggressive comment?” but I assure you it is not. Seriously, you all could do a whole lot for them right now.
Click to expand...
Actually, we have been all summer…since the diagnosis. We took the boys out with us, helped their mom and dad out of legal and financial jams, just a ton of stuff. I even offered to pay for the counselor we use for our DS. Sad thing, the one boy lashed out at DS after his mom (my friend) yelled at him and ended up scaring my son. DS could not comprehend while he was being treated this way when we over their house to do a work of mercy (we were explaining the funeral paperwork and my son was serving at the mass). My son came home crying saying he was now being treated like he used to be at his old school.

It’s a touchy situation to have a talk with my friend, as the funeral was just Thursday and she is pregnant with twins (change of life…found out a week after cancer diagnosis).
 
That is so sad! That poor family! Hopefully they will come around. My prayers are with them and you.
 
1990Domer said:
Hi Everyone:

Many of you may know that I have a son on the autism spectrum. Specifically, he is grandfathered with an Aspergers diagnosis from the DSM-IV, which was taken out in the latest version of the DSM. So, now, he has ASD or autism spectrum disorder. His biggest challenge is social skills, but he is a polite, friendly, kind and cooperative kid (these words come from his latest evaluation for school services).

He had a horrific Catholic school experience, which was the last brick and mortar placement we had him in. We chose cyber school, because our local school district is in financial dire straights and had failed him academically in the past (they failed to recognize his shutting down in class as low IQ. IQ was not the issue, but a sarcastic teacher going through a divorce was). We were actually able to draw away a laid-off intervention specialist to work with Chris during his live cyber school classes.

That’s the background. Here’s what I am finding. I am trying to keep him socially involved. Sadly, we live in a fairly lucrative area of PA where there are a lot of entitled kids with parents who see their children more as accessories. Honestly, they don’t parent. The stunts they let their kids get away with is horrific. Granted, there are a few good kids, but scheduling issues make life difficult. Organized sports is a nightmare–way too competitive. We have tried various clubs, but the kids are ill behaved and quickly ID my son as weird.

I want to forget the ten tons of pressure I am getting to keep my kid social and just allow him to heal from the negative socialization he has experienced in the last couple years (my therapy bills prove that out). The two friends he has are going through their own hell right now, as their dad died a week ago from cancer. So, we are laying low with them because of their anger management problems.

The BIG question…does anyone see me being weak here? I am as emotionally spent as my son, especially in the advocacy department. I really feel for my son. He does not deserve this treatment.

Thank you for reading and prayers, as always.
Click to expand...
No, no, no, not at all.

You guys need a break.

As to what activities to try, how about non-traditional activities? The conventional team sports can be a big bummer for the special needs child. (Our school has mandatory team sports for 4th-6th grade and I’ve had some very painful experiences–my big kids are tragically uncoordinated. I actually had a coach invite our family not to put our daughter on the basketball team…probably a good call, but still sad.)

My 10-year-old (not autistic, but certainly has some recognizable autistic features) loves fencing and isn’t bad. He also enjoys running and is amazing at rock climbing for his age. Our 13-year-old (the officially autistic one) had years of enjoying swimming. (She’s less excited about it now.) She still loves her therapeutic horse riding. We have some friends with a teen daughter that is very spectrummy, and she’s a phenomenal cyclist. (I don’t think they have a diagnosis for her, but I have really good autistic girl radar at this point.)

Autistic kids are often good at individual endurance sports. I also often see martial arts mentioned as being a good fit. (I was planning to do that with our 13-year-old, but haven’t gotten around to it.)

We do a lot of camps and classes during the summer, as it has historically been very important to keep our 13-year-old busy and social, with a focus on both her personal interests and developing life skills. I’m very excited about the cooking classes she’s been doing, as it is such an important life skill. I also believe that just about any positive activity can be therapeutic.

Also, some activities that we think of as solitary can be social if done with other people. For instance, our local library does a Minecraft teen club, and there are probably other good resources. Also, our 13-year-old is interested in starting an interest club at school for her instrument. There’s also the possibility (I’m still researching this) of playing in an ensemble at school for chapel, which will be a wonderful opportunity. Our 13-year-old’s art skills have also earned her a lot of admiration at school (she does really good dragons).

My husband also takes our two oldest kids to a game night in our social circle. Our 13-year-old is absolutely dynamite at SET (it’s a pattern recognition game).

setgame.com/set/puzzle

They are the only two kids that play–everybody else is a grownup.

One thing that I’ve been very pleased with is the kids’ embracing activities that they will be able to take with them and enjoy into adulthood.

I have a lot of hope for your son that if he goes to high school, that it will be significantly less horrible for him than middle school, no matter where he goes to high school. I think it’s a lot easier to find kindred souls in high school, just like it’s even easier in college.

Good luck!
 
Xantippe said:
No, no, no, not at all.

You guys need a break.

As to what activities to try, how about non-traditional activities? The conventional team sports can be a big bummer for the special needs child. (Our school has mandatory team sports for 4th-6th grade and I’ve had some very painful experiences–my big kids are tragically uncoordinated. I actually had a coach invite our family not to put our daughter on the basketball team…probably a good call, but still sad.)

My 10-year-old (not autistic, but certainly has some recognizable autistic features) loves fencing and isn’t bad. He also enjoys running and is amazing at rock climbing for his age. Our 13-year-old (the officially autistic one) had years of enjoying swimming. (She’s less excited about it now.) She still loves her therapeutic horse riding. We have some friends with a teen daughter that is very spectrummy, and she’s a phenomenal cyclist. (I don’t think they have a diagnosis for her, but I have really good autistic girl radar at this point.)

Autistic kids are often good at individual endurance sports. I also often see martial arts mentioned as being a good fit. (I was planning to do that with our 13-year-old, but haven’t gotten around to it.)

We do a lot of camps and classes during the summer, as it has historically been very important to keep our 13-year-old busy and social, with a focus on both her personal interests and developing life skills. I’m very excited about the cooking classes she’s been doing, as it is such an important life skill. I also believe that just about any positive activity can be therapeutic.

Also, some activities that we think of as solitary can be social if done with other people. For instance, our local library does a Minecraft teen club, and there are probably other good resources. Also, our 13-year-old is interested in starting an interest club at school for her instrument. There’s also the possibility (I’m still researching this) of playing in an ensemble at school for chapel, which will be a wonderful opportunity. Our 13-year-old’s art skills have also earned her a lot of admiration at school (she does really good dragons).

My husband also takes our two oldest kids to a game night in our social circle. Our 13-year-old is absolutely dynamite at SET (it’s a pattern recognition game).

setgame.com/set/puzzle

They are the only two kids that play–everybody else is a grownup.

One thing that I’ve been very pleased with is the kids’ embracing activities that they will be able to take with them and enjoy into adulthood.

I have a lot of hope for your son that if he goes to high school, that it will be significantly less horrible for him than middle school, no matter where he goes to high school. I think it’s a lot easier to find kindred souls in high school, just like it’s even easier in college.

Good luck!
Click to expand...
My DH keeps telling me the same thing (he was porbably Aspie himself as a youngster). He holds out greater hope for high school. I just don’t want any more mean comments that were said to him she he said he was discerning the priesthood ( rumors started that he must be gay and a pedophile). I was furious. The school waved it off.
 
1990Domer said:
My DH keeps telling me the same thing (he was porbably Aspie himself as a youngster). He holds out greater hope for high school. I just don’t want any more mean comments that were said to him she he said he was discerning the priesthood ( rumors started that he must be gay and a pedophile). I was furious. The school waved it off.
Click to expand...
I think the trick is him finding a social niche for himself. I did 7th grade in public school and it was TERRIBLE but I skipped 8th grade and went straight into 9th grade and although I did catch some flak for that from my new classmates, it was OK (especially compared to 7th grade). I eventually found a home at lunch with the drama and music kids, even though I wasn’t a drama or music kid myself.

Everybody doesn’t need to be his friend, but he needs some friends. The virtue of high school is that there are more niches available, more clubs, greater choice of classes, more diversity of interests and types among the kids. If he has particular talents or interests, he may be able to shine among kids who share those interests.

Best wishes!
 
You’re not being weak by keeping your son home for a time to heal, or until you find a good fit for him. I’d probably be alarmed if you wanted him home full time and his only school and recreational activities involved screen time, but that doesn’t sound like what’s happening here.

Just to give you something else to think about, though:

When people say “socialize” they’re often talking about having a homeschooled kid meet up with peers, but that’s not the only way to ensure a kid gets positive interactions with others. The first thing that came to mind when reading your post was volunteering. Have you considered having DS volunteer? If he has an interest in animals, an animal shelter might be a great place for him to go to get out of the house, meet some new people (probably adults or individual kids), make a positive impact. The benefit to choosing some place like that is that if there are other kid volunteers, they’ll probably just be there one at a time and kids are a lot less likely to be mean when they’re by themselves instead of in a group.

Another possibility: Do you live near any day centers for kids with disabilities? Not for your son to attend, but to volunteer? He’d be a lot less likely to get branded as different when the other children in the vicinity are also struggling with issues that set them apart from their typically-developing peers. And yet a lot of these kids could prove to be great friends. Just something to consider.
 
1990Domer said:
I want to forget the ten tons of pressure I am getting to keep my kid social and just allow him to heal from the negative socialization he has experienced in the last couple years (my therapy bills prove that out). The two friends he has are going through their own hell right now, as their dad died a week ago from cancer. So, we are laying low with them because of their anger management problems.

The BIG question…does anyone see me being weak here? I am as emotionally spent as my son, especially in the advocacy department. I really feel for my son. He does not deserve this treatment.

Thank you for reading and prayers, as always.
Click to expand...
Prayers for you and your son!

One, I don’t see you as being weak at all. It’s okay to rest, and it sounds to me like you’ve been giving a lot - both to your son and to the other family who’s having their own crisis.

The only thing not okay would be to give up - and I suspect you’re too good of a mom and your son’s too awesome to do that. So take a break - but make a plan.

You mentioned allowing him to heal - ask yourself what that means and how you’ll know when to try again.

Also you’ve been given some great ideas here, and I’ll toss in another - have you tried scouting? My teen’s scout troop is probably the most unlikely, quirkiest, group imaginable - and more than one is “on the spectrum” as it’s said around here - but nobody really cares. They really do accept each other as fellow scouts and the focus is to do fun and helpful stuff, learn new things, and have both lazy meetings (snacks/stare at a fire) and busy meetings (50 mile bike ride or 3 day campout). Individual scouts participate or not depending on their schedules and interests.

Another group where my socially challenged boys actually fit in, is with the VEX robotics teams that got started at their school - but several home-school groups now have teams as well. In general there’s not so much socializing as problem solving - how to write the program / how to make the gears work, etc. which (since it’s all done by the kids themselves) requires a lot of trial and error.

Again, you are in my prayers and I hope that you are able to find comfort and healing for what you’ve both gone through.
 
Yes. The therapeutic riding place my oldest rides at has teen volunteers, including some kids who ride there. For that particular thing, they need to be 14 to volunteer.
nodito said:
You’re not being weak by keeping your son home for a time to heal, or until you find a good fit for him. I’d probably be alarmed if you wanted him home full time and his only school and recreational activities involved screen time, but that doesn’t sound like what’s happening here.

Just to give you something else to think about, though:

When people say “socialize” they’re often talking about having a homeschooled kid meet up with peers, but that’s not the only way to ensure a kid gets positive interactions with others. The first thing that came to mind when reading your post was volunteering. Have you considered having DS volunteer? If he has an interest in animals, an animal shelter might be a great place for him to go to get out of the house, meet some new people (probably adults or individual kids), make a positive impact. The benefit to choosing some place like that is that if there are other kid volunteers, they’ll probably just be there one at a time and kids are a lot less likely to be mean when they’re by themselves instead of in a group.

Another possibility: Do you live near any day centers for kids with disabilities? Not for your son to attend, but to volunteer? He’d be a lot less likely to get branded as different when the other children in the vicinity are also struggling with issues that set them apart from their typically-developing peers. And yet a lot of these kids could prove to be great friends. Just something to consider.
Click to expand...
 
1990Domer said:
Hi Everyone:

Many of you may know that I have a son on the autism spectrum. Specifically, he is grandfathered with an Aspergers diagnosis from the DSM-IV, which was taken out in the latest version of the DSM. So, now, he has ASD or autism spectrum disorder. His biggest challenge is social skills, but he is a polite, friendly, kind and cooperative kid (these words come from his latest evaluation for school services).

He had a horrific Catholic school experience, which was the last brick and mortar placement we had him in. We chose cyber school, because our local school district is in financial dire straights and had failed him academically in the past (they failed to recognize his shutting down in class as low IQ. IQ was not the issue, but a sarcastic teacher going through a divorce was). We were actually able to draw away a laid-off intervention specialist to work with DS during his live cyber school classes.

That’s the background. Here’s what I am finding. I am trying to keep him socially involved. Sadly, we live in a fairly lucrative area of PA where there are a lot of entitled kids with parents who see their children more as accessories. Honestly, they don’t parent. The stunts they let their kids get away with is horrific. Granted, there are a few good kids, but scheduling issues make life difficult. Organized sports is a nightmare–way too competitive. We have tried various clubs, but the kids are ill behaved and quickly ID my son as weird.

I want to forget the ten tons of pressure I am getting to keep my kid social and just allow him to heal from the negative socialization he has experienced in the last couple years (my therapy bills prove that out). The two friends he has are going through their own hell right now, as their dad died a week ago from cancer. So, we are laying low with them because of their anger management problems.

The BIG question…does anyone see me being weak here? I am as emotionally spent as my son, especially in the advocacy department. I really feel for my son. He does not deserve this treatment.

Thank you for reading and prayers, as always.
Click to expand...
Two word:
Music lessons. Voice, piano, guitar.
It’s a great form of expression without words that everyone respects. I wish I lived near you. I’d have him playing in no time.
 
Hi,

I am really glad you posted, got all of this out and asked for prayers. To answer your question NO! You are so not being weak at all!🙂

I have very mild aspergers, and I teach kids with aspergers and autism. You are way ahead of many parents in that you are not swimming in the river of denial. Sadly, many parents blame themselves for their children’s condition, and make believe that everything will be OK by putting them on gluten free diets and expecting them to grow out of it without any effort on their part.

Parents that enjoy growth and success are very active in their children’s lives and do not accept defeat. The roadblocks are often vast but not impossible. The biggest ally I have found has been the church, our church.

What I have found to be helpful for kids, is to yes, not to isolate, integrate with “nuro-typical” environments, but also involve your child with other high functioning spectrum kids as well for support and understanding. This is where his friends will come from often. You need a balance of both.

Most people think I am some kind of a free spirit philosophical kind of guy. They sense I am somehow different, but this is how I am viewed from the feedback I have gathered, and feedback is important, as it helps me shape how I function in the world. I must say, without medication, I would be a total wreck. I take Nurontin to put me at ease in everyday social situations, and Efexor XR 150mg to keep the anxiety and depression in check. I tried life without these and lost two jobs. Using this combination I did quite well working in IT for a fortune 100 company for ten years until I was laid off. I received two promotions and earned analyst of the year for my division.

You more than likely did the right thing by moving to an online school, AND by understanding the importance of not keeping your child isolated. I truly feel like you have done a wonderful job with a difficult situation. Our church in the Atlanta suburbs has a autistic support group for parents and kids. I would be surprised if something like that did not exist in your area. If not, consider getting help to start one. Take this a day at a time.

Finally, take good care of your self and include fun things in all of your lives. Reduce stress and simplify things for both of you where you can. Be aware that movies, media can strongly impact your child. When I watch a movie, I find myself absorbing characteristics of the main character. I know a mother who will not let her brilliant aspergers son watch TV it impacts him so. Just things to consider. Environment is important. You are already an expert, don’t beat yourself up over past errors, this is entirely counterproductive.

Church for me is a joy in my life. It can and should be that as well for you and your family. There is no greater balm for us. It has been for me.

PM me any time. I am horribly busy, but I will respond.
Blessings,
esieffe
 
Xantippe said:
I think the trick is him finding a social niche for himself. I did 7th grade in public school and it was TERRIBLE but I skipped 8th grade and went straight into 9th grade and although I did catch some flak for that from my new classmates, it was OK (especially compared to 7th grade). I eventually found a home at lunch with the drama and music kids, even though I wasn’t a drama or music kid myself.

Everybody doesn’t need to be his friend, but he needs some friends. The virtue of high school is that there are more niches available, more clubs, greater choice of classes, more diversity of interests and types among the kids. If he has particular talents or interests, he may be able to shine among kids who share those interests.

Best wishes!
Click to expand...
Besides playing trumpet (still afraid to perform), he loves his faith. I am trying to find a youth group that didn’t include kids from his class. Otherwise, he loves his faith. We do too, so I may look to family events.
 
esieffe said:
What I have found to be helpful for kids, is to yes, not to isolate, integrate with “nuro-typical” environments, but also involve your child with other high functioning spectrum kids as well for support and understanding. This is where his friends will come from often. You need a balance of both.
Click to expand...
That whole thing was very sweet, but I thought this part was especially helpful.

With my daughter, I definitely see the meshing and clicking when she’s with a couple of other kids on the spectrum. They just immediately get each other.
 
esieffe said:
Hi,

I am really glad you posted, got all of this out and asked for prayers. To answer your question NO! You are so not being weak at all!🙂

I have very mild aspergers, and I teach kids with aspergers and autism. You are way ahead of many parents in that you are not swimming in the river of denial. Sadly, many parents blame themselves for their children’s condition, and make believe that everything will be OK by putting them on gluten free diets and expecting them to grow out of it without any effort on their part.

Parents that enjoy growth and success are very active in their children’s lives and do not accept defeat. The roadblocks are often vast but not impossible. The biggest ally I have found has been the church, our church.

What I have found to be helpful for kids, is to yes, not to isolate, integrate with “nuro-typical” environments, but also involve your child with other high functioning spectrum kids as well for support and understanding. This is where his friends will come from often. You need a balance of both.

Most people think I am some kind of a free spirit philosophical kind of guy. They sense I am somehow different, but this is how I am viewed from the feedback I have gathered, and feedback is important, as it helps me shape how I function in the world. I must say, without medication, I would be a total wreck. I take Nurontin to put me at ease in everyday social situations, and Efexor XR 150mg to keep the anxiety and depression in check. I tried life without these and lost two jobs. Using this combination I did quite well working in IT for a fortune 100 company for ten years until I was laid off. I received two promotions and earned analyst of the year for my division.

You more than likely did the right thing by moving to an online school, AND by understanding the importance of not keeping your child isolated. I truly feel like you have done a wonderful job with a difficult situation. Our church in the Atlanta suburbs has a autistic support group for parents and kids. I would be surprised if something like that did not exist in your area. If not, consider getting help to start one. Take this a day at a time.

Finally, take good care of your self and include fun things in all of your lives. Reduce stress and simplify things for both of you where you can. Be aware that movies, media can strongly impact your child. When I watch a movie, I find myself absorbing characteristics of the main character. I know a mother who will not let her brilliant aspergers son watch TV it impacts him so. Just things to consider. Environment is important. You are already an expert, don’t beat yourself up over past errors, this is entirely counterproductive.

Church for me is a joy in my life. It can and should be that as well for you and your family. There is no greater balm for us. It has been for me.

PM me any time. I am horribly busy, but I will respond.
Blessings,
esieffe
Click to expand...
If you don’t mind, I would love to PM you. You gave me some wonderful jumping off spots. And your personal story inspired me. God bless.
 
nodito said:
You’re not being weak by keeping your son home for a time to heal, or until you find a good fit for him. I’d probably be alarmed if you wanted him home full time and his only school and recreational activities involved screen time, but that doesn’t sound like what’s happening here.

Just to give you something else to think about, though:

When people say “socialize” they’re often talking about having a homeschooled kid meet up with peers, but that’s not the only way to ensure a kid gets positive interactions with others. The first thing that came to mind when reading your post was volunteering. Have you considered having DS volunteer? If he has an interest in animals, an animal shelter might be a great place for him to go to get out of the house, meet some new people (probably adults or individual kids), make a positive impact. The benefit to choosing some place like that is that if there are other kid volunteers, they’ll probably just be there one at a time and kids are a lot less likely to be mean when they’re by themselves instead of in a group.

Another possibility: Do you live near any day centers for kids with disabilities? Not for your son to attend, but to volunteer? He’d be a lot less likely to get branded as different when the other children in the vicinity are also struggling with issues that set them apart from their typically-developing peers. And yet a lot of these kids could prove to be great friends. Just something to consider.
Click to expand...
My DS is an altar server at church and volunteers for their fundraisers. Sadly, our large children’s cancer center is in downtown Philly–quite a hike and a difficult drive.

Sadly, animals are out because anything with dander causes asthma attacks with my husband…the severe, almost died kind. But thank you!
 
CradleJourney said:
Prayers for you and your son!

One, I don’t see you as being weak at all. It’s okay to rest, and it sounds to me like you’ve been giving a lot - both to your son and to the other family who’s having their own crisis.

The only thing not okay would be to give up - and I suspect you’re too good of a mom and your son’s too awesome to do that. So take a break - but make a plan.

You mentioned allowing him to heal - ask yourself what that means and how you’ll know when to try again.

Also you’ve been given some great ideas here, and I’ll toss in another - have you tried scouting? My teen’s scout troop is probably the most unlikely, quirkiest, group imaginable - and more than one is “on the spectrum” as it’s said around here - but nobody really cares. They really do accept each other as fellow scouts and the focus is to do fun and helpful stuff, learn new things, and have both lazy meetings (snacks/stare at a fire) and busy meetings (50 mile bike ride or 3 day campout). Individual scouts participate or not depending on their schedules and interests.

Another group where my socially challenged boys actually fit in, is with the VEX robotics teams that got started at their school - but several home-school groups now have teams as well. In general there’s not so much socializing as problem solving - how to write the program / how to make the gears work, etc. which (since it’s all done by the kids themselves) requires a lot of trial and error.

Again, you are in my prayers and I hope that you are able to find comfort and healing for what you’ve both gone through.
Click to expand...
He was in Cub Scouts at our church. He got bullied there too. My husband volunteered with the troop and kids were nasty. Some of the same he eventually went to Catholic school with.
 
Now if I could find a kid who was into stopping commercial airliners in the sky or into controlled nuclear fusion (or high school physics), I’d be in luck. Sadly, no science clubs around here!
 
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