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

[Anonymous]

Anonymous wrote:

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.

Op here. I’m not sure how it works other places but where we live (not in DC), they can’t just send him back to preschool. They can’t kick a kid with an IEP out of public kindergarten. It doesn’t work that way.

They might claim he can’t stay in the mainstream classroom or that he requires an aid, but in those cases it would be on the school to provide those accommodations. Generally, the schools resist doing that because it costs them more money. I have been pushing for more resources and the school has refused so I would not be upset if they wanted to provide us with more support.

[Anonymous]

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.

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?

Op here. Yes, many if not most of the activities I described are targeted for kids with SN. Where we live, they use the words “adaptive” to signal this. I have put a lot of energy into finding these camps in our city.

Not sure what to tell you but we live in a much lower cost of living city in a different part of the country, so housing is cheaper here and we bought our house a long time ago. And yes, Nannies are extremely expensive, particularly quality ones that are equipped to handle SN.

[Anonymous]

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.

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?

Op here. Yes, many if not most of the activities I described are targeted for kids with SN. Where we live, they use the words “adaptive” to signal this. I have put a lot of energy into finding these camps in our city.

Not sure what to tell you but we live in a much lower cost of living city in a different part of the country, so housing is cheaper here and we bought our house a long time ago. And yes, Nannies are extremely expensive, particularly quality ones that are equipped to handle SN.

Huh. Sometimes the “SN” programs are actually the least tolerant.

OP I think it’s fine for you to take a break from activities/camps for a year.

[Anonymous]

Op, it’s the same here re public k: they can’t kick you out. I’m glad you know it’s likely your son will need a different placement. The issue is going to be the in between time. I would mentally and logistically prepare to get a lot of phone calls and pick up requests next year. It’s the way they want to do it, apparently, rather than getting him a more appropriate placement up front. They have to document the need. Just be calm and know that where he is right now doesn’t dictate how the future will go.

[Anonymous]

Anonymous wrote:I don’t have any experience with this but just wanted to send you a hug. I hope you find a solution that works for you and your wonderful child.

This.

[Anonymous]

Anonymous wrote:Op, it’s the same here re public k: they can’t kick you out. I’m glad you know it’s likely your son will need a different placement. The issue is going to be the in between time. I would mentally and logistically prepare to get a lot of phone calls and pick up requests next year. It’s the way they want to do it, apparently, rather than getting him a more appropriate placement up front. They have to document the need. Just be calm and know that where he is right now doesn’t dictate how the future will go.

I wouldn’t 100% assume the need for a different placement, but sure, be prepared for it. My DS did much better in the organized classroom than he did at camps etc at that age.

[Anonymous]

There is only one place that haven’t kicked my son out when he was young. It’s Calleva summer camp.
I feel for you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Op, it’s the same here re public k: they can’t kick you out. I’m glad you know it’s likely your son will need a different placement. The issue is going to be the in between time. I would mentally and logistically prepare to get a lot of phone calls and pick up requests next year. It’s the way they want to do it, apparently, rather than getting him a more appropriate placement up front. They have to document the need. Just be calm and know that where he is right now doesn’t dictate how the future will go.

I wouldn’t 100% assume the need for a different placement, but sure, be prepared for it. My DS did much better in the organized classroom than he did at camps etc at that age.

+1

Especially since he's doing fine in preschool, which is a 5:1 ratio. I know 18:1 is very different, but many public schools have paraeducators and other ways to help improve the ratios, especially in the younger grades.

[Anonymous]

Can you find a teenage boy in your neighborhood and have him essentially ware him out each day. Long bike rides, playing in the woods, etc. Your child spends all day in a very structured environment, they don’t need that after school, weekends, or summer. And don’t put them in an activity when you know the meds have worn off, no instructional person can manage a class and kids coming down off their meds.

[Anonymous]

OP, I'd look at how your kid likes these activities. If he LOOOVES a sports camp (or other activity) but his behavior means he can't attend, then perhaps it's worth looking some more. But if he's not in love with any of these activities, you should throw in the towel for the summer.

Pay the nanny, let him chill (or, you know, bounce off the walls), and don't worry about setting him up for kindergarten. He either will be able to navigate a bigger classroom, or the school will have to make other arrangements. It's very unlikely that a couple months of camp would make a big difference in that outcome. Fortunately, you already know that a small group works for him, since he was successful in preschool.

I know that you must be exhausted, and it would be wonderful to have a good option for summer, but this is probably not the year. I hope it starts getting a little easier soon!

[Anonymous]

Just my experience with K:

My child started out K in a self contained classroom, with a 1:6 ratio. 1 of the kids in his class had extreme hyperactivity but was a kind child. All the parents in that classroom were so understanding of each other. Our kids were allowed to learn how to do school while still learning.

The reality is that the K teacher won't have the bandwidth for that and most likely the paraeducator will have several children to look after. And then there are the parents who are not compassionate and will complain when SN kids are disruptive.

Age and maturity do help and now my kiddo spends the majority of the day in GenEd with para support. So please don't be afraid of a small self-contained K, it may be a great way for your child to find their way.

And, for a suggestion for the group activities, you can ask for an Adapted PE evaluation. While different issues than yours, my DS was in it and some of the goals were centered on group participation, turn taking, and sportsmanship. It doesn't hurt to ask.

[Anonymous]

Didn't read the whole thread.

Is the kid doing activities where you leave him with the activity staff, or are you there 1:1 in the activity too?

You might need to stick to 1:1 assisted activities for now.

[Anonymous]

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.

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?

Op here. Yes, many if not most of the activities I described are targeted for kids with SN. Where we live, they use the words “adaptive” to signal this. I have put a lot of energy into finding these camps in our city.

Not sure what to tell you but we live in a much lower cost of living city in a different part of the country, so housing is cheaper here and we bought our house a long time ago. And yes, Nannies are extremely expensive, particularly quality ones that are equipped to handle SN.

That PP was just ridiculous. A pool comes with a house, and camps cost far, far less than a nanny.

[Anonymous]

Anonymous wrote:Just my experience with K:

My child started out K in a self contained classroom, with a 1:6 ratio. 1 of the kids in his class had extreme hyperactivity but was a kind child. All the parents in that classroom were so understanding of each other. Our kids were allowed to learn how to do school while still learning.

The reality is that the K teacher won't have the bandwidth for that and most likely the paraeducator will have several children to look after. And then there are the parents who are not compassionate and will complain when SN kids are disruptive.

Age and maturity do help and now my kiddo spends the majority of the day in GenEd with para support. So please don't be afraid of a small self-contained K, it may be a great way for your child to find their way.

And, for a suggestion for the group activities, you can ask for an Adapted PE evaluation. While different issues than yours, my DS was in it and some of the goals were centered on group participation, turn taking, and sportsmanship. It doesn't hurt to ask.

Op here. That sounds like a lovely environment.

I do bristle a bit though at the implication-it feels like you’re saying I’m resistant to the idea of a self contained classroom and need to come around to the idea.

That’s not the case. I don’t know how it works other places, but in our school district it is extremely difficult to get a self contained classroom or a para. It’s not as if it was offered to me and I declined. I even hired an advocate to help me with the IEP and placement for kindergarten. In our district it’s not really possible to go from a mainstream public preschool into a self contained kindergarten classroom. It just doesn’t work that way.

[Anonymous]

I’m wondering if your kiddo might do well with sports that take a bunch of energy. Helped my adhd brother a lot but wasn’t an option for my AuDHD son.

Additionally, a center based aba program could work on attending if your kid is also autistic.