Kicked out of every activity and summer camp we’ve ever tried

[Anonymous]

[twitter]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Op here. Yes we have an IEP.

Yes I have looked for one on one support. Most programs will not allow us to send in our own therapist/respite worker/aide/nanny/etc. I have asked and they all say no.

Most of the activities we have tried actually have had one on one support (for all kids, not just mine) and it is something I look for when choosing activities. But in the recent few examples, the support is provided by volunteers that seem timid and not terribly skilled. Like they are expecting to be working with kids who have physical disabilities more than the challenges my DS has.

We have done swim, he got kicked out of that too. But we do have a pool at home and DS is an excellent swimmer (we taught him ourselves). We also have an in ground trampoline. He gets a lot of physical activity.

I think part of my exasperation is wanting him to be in something that DOESNT require my participation because I am exhausted. We are going into debt to keep the nanny. Like literally using credit cards because we can’t get DS into a camp.

1. Is there an Arc or JCC nearby? Those may be good solutions. They offer shadows for camp, and many very disabled kids go. What about your school? You son sounds like he would qualify for summer school.
2. Do you have a self contained placement for next year? I want you to avoid the misery of what not having one will be like for k.

Op here. We do have a JCC close by but their disability programming is geared towards middle school and up. They don’t offer it for 5 year olds. It’s too late to do camp there this summer even if they agreed to take my DS.

I don’t have a self contained placement for next year. I tried to get one, even hired an advocate. He was performing well in a normal preschool classroom so they wouldn’t approve it. I couldn’t get an aide either. But he does get speech, OT, and time with a special Ed teacher at school. It took moving heaven and earth to get those supports though.

Wow, okay how did he do preschool? What’s different there?

[Anonymous]

OP, I have not read all the replies, but I feel your frustration. My kid is now a teen, but at your son's age we were super close to being kicked out of more than one place. It never actually happened, but I worried about it all the time. I needed camps for child care! One camp, they let him finish out the week and I did not sign him up again - pretty sure they would have declined if I had tried.

Just here to let you know I don't know exactly what you are going through, but I have a small clue. Offering you good wishes and support.

[Anonymous]

Anonymous wrote:[twitter]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Op here. Yes we have an IEP.

Yes I have looked for one on one support. Most programs will not allow us to send in our own therapist/respite worker/aide/nanny/etc. I have asked and they all say no.

Most of the activities we have tried actually have had one on one support (for all kids, not just mine) and it is something I look for when choosing activities. But in the recent few examples, the support is provided by volunteers that seem timid and not terribly skilled. Like they are expecting to be working with kids who have physical disabilities more than the challenges my DS has.

We have done swim, he got kicked out of that too. But we do have a pool at home and DS is an excellent swimmer (we taught him ourselves). We also have an in ground trampoline. He gets a lot of physical activity.

I think part of my exasperation is wanting him to be in something that DOESNT require my participation because I am exhausted. We are going into debt to keep the nanny. Like literally using credit cards because we can’t get DS into a camp.

1. Is there an Arc or JCC nearby? Those may be good solutions. They offer shadows for camp, and many very disabled kids go. What about your school? You son sounds like he would qualify for summer school.
2. Do you have a self contained placement for next year? I want you to avoid the misery of what not having one will be like for k.

Op here. We do have a JCC close by but their disability programming is geared towards middle school and up. They don’t offer it for 5 year olds. It’s too late to do camp there this summer even if they agreed to take my DS.

I don’t have a self contained placement for next year. I tried to get one, even hired an advocate. He was performing well in a normal preschool classroom so they wouldn’t approve it. I couldn’t get an aide either. But he does get speech, OT, and time with a special Ed teacher at school. It took moving heaven and earth to get those supports though.

Wow, okay how did he do preschool? What’s different there?

Op here. Preschool was small class size, only a few hours a day, and had 2 teachers in a class of 10 students.

The kindergarten has 18 kids in one class with one teacher…

[Anonymous]

Anonymous wrote:How is your son handling all of this? Is he stressed out? Does he feel like a failure? If yes, that’s only going to drive even more behavior issues.
The neuro psych we met with highly recommends letting the kids nervous system calm down if they are totally strung out - for you that might be decreasing demands on your son and letting him just exist this summer. Take him to the pool, go for walks, et. I really noticed this during the Covid spring of 2020 - yes my kids missed their friends but also they were so much more relaxed and happy just doing a few things rather than trying to do so much - it set one of my kids up for a much more successful school year.

Op here. He doesn’t seem to really understand, I guess thankfully. He is not upset and I don’t think realizes he’s being rejected.

[Anonymous]

Anonymous wrote:

Anonymous wrote:[twitter]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Op here. Yes we have an IEP.

Yes I have looked for one on one support. Most programs will not allow us to send in our own therapist/respite worker/aide/nanny/etc. I have asked and they all say no.

Most of the activities we have tried actually have had one on one support (for all kids, not just mine) and it is something I look for when choosing activities. But in the recent few examples, the support is provided by volunteers that seem timid and not terribly skilled. Like they are expecting to be working with kids who have physical disabilities more than the challenges my DS has.

We have done swim, he got kicked out of that too. But we do have a pool at home and DS is an excellent swimmer (we taught him ourselves). We also have an in ground trampoline. He gets a lot of physical activity.

I think part of my exasperation is wanting him to be in something that DOESNT require my participation because I am exhausted. We are going into debt to keep the nanny. Like literally using credit cards because we can’t get DS into a camp.

1. Is there an Arc or JCC nearby? Those may be good solutions. They offer shadows for camp, and many very disabled kids go. What about your school? You son sounds like he would qualify for summer school.
2. Do you have a self contained placement for next year? I want you to avoid the misery of what not having one will be like for k.

Op here. We do have a JCC close by but their disability programming is geared towards middle school and up. They don’t offer it for 5 year olds. It’s too late to do camp there this summer even if they agreed to take my DS.

I don’t have a self contained placement for next year. I tried to get one, even hired an advocate. He was performing well in a normal preschool classroom so they wouldn’t approve it. I couldn’t get an aide either. But he does get speech, OT, and time with a special Ed teacher at school. It took moving heaven and earth to get those supports though.

Wow, okay how did he do preschool? What’s different there?

Op here. Preschool was small class size, only a few hours a day, and had 2 teachers in a class of 10 students.

The kindergarten has 18 kids in one class with one teacher…

So he's doing well in a preschool with a 5:1 ratio? What's different between preschool and these activities you're trying? According to your description ("performing well in a normal preschool"), your child is capable of success in a mainstream setting. That success should generalize to a class or activity if you can figure out what's different.

[Anonymous]

I sat in -- still do, for some of them -- on activities with my Had Major Issues child and basically constantly redirected/provided supervision. Not entirely sure how much he got out of some of these activities but he did gradually get better over time, e.g. the first time through a martial arts program, I got in total maybe sixty minutes, at most, of his participation over the entire three months of class. But second time through it was a lot more productive. Some of this was age, some of this exposure.

[Anonymous]

If you are looking for permission to stop sending your kid to camp, I give that to you. Sounds like what you actually want/need is a regular break. Can you hire a SN nanny for the summer (college student, perhaps) who can care for him 1:1 for 4 hours or so a day? My DD needed absolute attention and eventually got better over time. It was not good for anyone for her to be in a group.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My son has adhd (and possibly on the spectrum.) his biggest issue is emotional regulation, but for a peer whose biggest issue is hyperactivity, he needed a 1:1 counselor at camp.

My son had a 1:1 counselor last summer when he was 4, before he was diagnosed and medicated. It was the only way for him to be in camp. We’ll see if he does better this summer, but I would see what extra support you could pay for privately to keep your child in camp.

We are also sending my child to a camp that has more support for ND kids. There is an occupational therapist on staff, and every age group has a head counselor in addition to a low counselor to camper ratio. If there is an issue, we will be notified quickly and will be able to problem solve with the camp.

The next step as others have mentioned, are camps specifically for ND kids. These often involve longer commutes but they can accommodate a full range of needs.

Your child sounds so much like my child. What camp?

Pp here. We are in the suburbs of NY, so not sure it would be helpful to you. In general I toured a bunch of camps and was transparent about my son’s needs. It was important that the camp had either teachers running the groups for young kids my son’s age, and/or had head counselors in each age group, and supported ND kids. My sons previous camp had none of these supports in place, and was fine a for NT toddler, but not my kid.

[Anonymous]

Same problem here but I don’t sign up for activities. I just take him to playground and on hot days we go to pool. Therapy works but slowly.

[Anonymous]

Anonymous wrote:Op here. Yes we have an IEP.

Yes I have looked for one on one support. Most programs will not allow us to send in our own therapist/respite worker/aide/nanny/etc. I have asked and they all say no.

Most of the activities we have tried actually have had one on one support (for all kids, not just mine) and it is something I look for when choosing activities. But in the recent few examples, the support is provided by volunteers that seem timid and not terribly skilled. Like they are expecting to be working with kids who have physical disabilities more than the challenges my DS has.

We have done swim, he got kicked out of that too. But we do have a pool at home and DS is an excellent swimmer (we taught him ourselves). We also have an in ground trampoline. He gets a lot of physical activity.

I think part of my exasperation is wanting him to be in something that DOESNT require my participation because I am exhausted. We are going into debt to keep the nanny. Like literally using credit cards because we can’t get DS into a camp.

Where are you that so many activities have 1:1 support for all kids? Are these special needs camps? Never heard of NT activities offering this much support.
Some of your story doesn't add up. You have a pool at your home but you can't afford a nanny? You can afford tons of activities and camps that your child gets kicked out of but you can't afford the nany?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:[twitter]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Op here. Yes we have an IEP.

Yes I have looked for one on one support. Most programs will not allow us to send in our own therapist/respite worker/aide/nanny/etc. I have asked and they all say no.

Most of the activities we have tried actually have had one on one support (for all kids, not just mine) and it is something I look for when choosing activities. But in the recent few examples, the support is provided by volunteers that seem timid and not terribly skilled. Like they are expecting to be working with kids who have physical disabilities more than the challenges my DS has.

We have done swim, he got kicked out of that too. But we do have a pool at home and DS is an excellent swimmer (we taught him ourselves). We also have an in ground trampoline. He gets a lot of physical activity.

I think part of my exasperation is wanting him to be in something that DOESNT require my participation because I am exhausted. We are going into debt to keep the nanny. Like literally using credit cards because we can’t get DS into a camp.

1. Is there an Arc or JCC nearby? Those may be good solutions. They offer shadows for camp, and many very disabled kids go. What about your school? You son sounds like he would qualify for summer school.
2. Do you have a self contained placement for next year? I want you to avoid the misery of what not having one will be like for k.

Op here. We do have a JCC close by but their disability programming is geared towards middle school and up. They don’t offer it for 5 year olds. It’s too late to do camp there this summer even if they agreed to take my DS.

I don’t have a self contained placement for next year. I tried to get one, even hired an advocate. He was performing well in a normal preschool classroom so they wouldn’t approve it. I couldn’t get an aide either. But he does get speech, OT, and time with a special Ed teacher at school. It took moving heaven and earth to get those supports though.

Wow, okay how did he do preschool? What’s different there?

Op here. Preschool was small class size, only a few hours a day, and had 2 teachers in a class of 10 students.

The kindergarten has 18 kids in one class with one teacher…

So he's doing well in a preschool with a 5:1 ratio? What's different between preschool and these activities you're trying? According to your description ("performing well in a normal preschool"), your child is capable of success in a mainstream setting. That success should generalize to a class or activity if you can figure out what's different.

We have a child who was really difficult at that age but never got kicked out of anything. I can't tell if the counselors at the activities you're choosing are just really rigid or if your child really has outlier needs. If I were you I wouldn't be worrying as much about the summer as about K. I would make sure you know of a good preschool or can go back to your old one in case you need to move your child out of K. At this moment your child does not sound like he would do okay in a K classroom without a 1:1. Right now he doesn't care about the activities but getting kicked out of K would really hurt him psychologically and that could take years of counseling for him to accept what happened and not feel like crap. Kids really internalize those kinds of experiences. The older he gets the more he will feel rejected.

[Anonymous]

Anonymous wrote:Medication? A little boy in my child's K class had to start meds because he was just entirely out of control. It's on the early side, but in rare cases, some patients do actually need medication.

I wouldn't medicate for summer camps, mind you. But if he's like this now, he'll be a holy terror in school. He needs medication for school. Most ADHD simulants are habit-forming, so he needs medication breaks regularly (on weekends and holidays). My son was medicated from 5th to 12th grade and now in college doesn't need regular meds anymore.

ADHD medications are NOT habit forming except for Dexedrine which anlmost no one prescribes anymore.

[Anonymous]

Anonymous wrote:

Anonymous wrote:[twitter]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Op here. Yes we have an IEP.

Yes I have looked for one on one support. Most programs will not allow us to send in our own therapist/respite worker/aide/nanny/etc. I have asked and they all say no.

Most of the activities we have tried actually have had one on one support (for all kids, not just mine) and it is something I look for when choosing activities. But in the recent few examples, the support is provided by volunteers that seem timid and not terribly skilled. Like they are expecting to be working with kids who have physical disabilities more than the challenges my DS has.

We have done swim, he got kicked out of that too. But we do have a pool at home and DS is an excellent swimmer (we taught him ourselves). We also have an in ground trampoline. He gets a lot of physical activity.

I think part of my exasperation is wanting him to be in something that DOESNT require my participation because I am exhausted. We are going into debt to keep the nanny. Like literally using credit cards because we can’t get DS into a camp.

1. Is there an Arc or JCC nearby? Those may be good solutions. They offer shadows for camp, and many very disabled kids go. What about your school? You son sounds like he would qualify for summer school.
2. Do you have a self contained placement for next year? I want you to avoid the misery of what not having one will be like for k.

Op here. We do have a JCC close by but their disability programming is geared towards middle school and up. They don’t offer it for 5 year olds. It’s too late to do camp there this summer even if they agreed to take my DS.

I don’t have a self contained placement for next year. I tried to get one, even hired an advocate. He was performing well in a normal preschool classroom so they wouldn’t approve it. I couldn’t get an aide either. But he does get speech, OT, and time with a special Ed teacher at school. It took moving heaven and earth to get those supports though.

Wow, okay how did he do preschool? What’s different there?

Op here. Preschool was small class size, only a few hours a day, and had 2 teachers in a class of 10 students.

The kindergarten has 18 kids in one class with one teacher…

You said he had been kicked out of everywhere. I am confused, was he just asked to leave activities but not school?

[Anonymous]

Anonymous wrote:

Anonymous wrote:[twitter]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Op here. Yes we have an IEP.

Yes I have looked for one on one support. Most programs will not allow us to send in our own therapist/respite worker/aide/nanny/etc. I have asked and they all say no.

Most of the activities we have tried actually have had one on one support (for all kids, not just mine) and it is something I look for when choosing activities. But in the recent few examples, the support is provided by volunteers that seem timid and not terribly skilled. Like they are expecting to be working with kids who have physical disabilities more than the challenges my DS has.

We have done swim, he got kicked out of that too. But we do have a pool at home and DS is an excellent swimmer (we taught him ourselves). We also have an in ground trampoline. He gets a lot of physical activity.

I think part of my exasperation is wanting him to be in something that DOESNT require my participation because I am exhausted. We are going into debt to keep the nanny. Like literally using credit cards because we can’t get DS into a camp.

1. Is there an Arc or JCC nearby? Those may be good solutions. They offer shadows for camp, and many very disabled kids go. What about your school? You son sounds like he would qualify for summer school.
2. Do you have a self contained placement for next year? I want you to avoid the misery of what not having one will be like for k.

Op here. We do have a JCC close by but their disability programming is geared towards middle school and up. They don’t offer it for 5 year olds. It’s too late to do camp there this summer even if they agreed to take my DS.

I don’t have a self contained placement for next year. I tried to get one, even hired an advocate. He was performing well in a normal preschool classroom so they wouldn’t approve it. I couldn’t get an aide either. But he does get speech, OT, and time with a special Ed teacher at school. It took moving heaven and earth to get those supports though.

Wow, okay how did he do preschool? What’s different there?

Op here. Preschool was small class size, only a few hours a day, and had 2 teachers in a class of 10 students.

The kindergarten has 18 kids in one class with one teacher…

Do you know who his teacher will be? If so, do you know how experienced they are? Some teachers just have that ability to control a classroom and your son might respond well to them. Can you talk with his preschool teachers to see what techniques worked for him?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:[twitter]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Op here. Yes we have an IEP.

Yes I have looked for one on one support. Most programs will not allow us to send in our own therapist/respite worker/aide/nanny/etc. I have asked and they all say no.

Most of the activities we have tried actually have had one on one support (for all kids, not just mine) and it is something I look for when choosing activities. But in the recent few examples, the support is provided by volunteers that seem timid and not terribly skilled. Like they are expecting to be working with kids who have physical disabilities more than the challenges my DS has.

We have done swim, he got kicked out of that too. But we do have a pool at home and DS is an excellent swimmer (we taught him ourselves). We also have an in ground trampoline. He gets a lot of physical activity.

I think part of my exasperation is wanting him to be in something that DOESNT require my participation because I am exhausted. We are going into debt to keep the nanny. Like literally using credit cards because we can’t get DS into a camp.

1. Is there an Arc or JCC nearby? Those may be good solutions. They offer shadows for camp, and many very disabled kids go. What about your school? You son sounds like he would qualify for summer school.
2. Do you have a self contained placement for next year? I want you to avoid the misery of what not having one will be like for k.

Op here. We do have a JCC close by but their disability programming is geared towards middle school and up. They don’t offer it for 5 year olds. It’s too late to do camp there this summer even if they agreed to take my DS.

I don’t have a self contained placement for next year. I tried to get one, even hired an advocate. He was performing well in a normal preschool classroom so they wouldn’t approve it. I couldn’t get an aide either. But he does get speech, OT, and time with a special Ed teacher at school. It took moving heaven and earth to get those supports though.

Wow, okay how did he do preschool? What’s different there?

Op here. Preschool was small class size, only a few hours a day, and had 2 teachers in a class of 10 students.

The kindergarten has 18 kids in one class with one teacher…

You said he had been kicked out of everywhere. I am confused, was he just asked to leave activities but not school?

Op here. He has a disability and an IEP and the preschool was public, so they can’t really kick him out unless he’s violent which doesn’t tend to be his struggle.