The Big Autism Center

Charlie grocery shopping on Tuesday afternoon (and not at the model grocery store at the big autism center) We toured the large out-of-district autism center yesterday at 10am. It's only about a mile from our apartment—in fact, I've mentioned it before when I was writing the autism blog at Change.org. Charlie and I used to swim at the center's pool, as our YMCA was renting the space (they aren't any more). The pool was lovely, huge and deep and Charlie and I spent many, many happy afternoons there. But the facility didn't have a family or unisex changing room and, even though there were often very few people swimming, Charlie was not allowed in the women's locker room with me and so I wrote this letter in search of a few accommodations. I regularly pointed out to the YMCA staff that the pool was part of an autism school—-to which the YMCA staff always answered words to the effect of "we have nothing to do with that."

I had driven Charlie by the big center last Thursday and Jim and I had been talking about it on and off to him, sometimes noting that it's where we used to swim. (Apparently the students don't swim too frequently, perhaps once a month, and the roof of the pool area is currently getting some repairs so no one can swim.) Charlie ran right into the center and looked around: It is a huge space (imagine an indoor mall sort of building and layout), with three levels and almost 200 children. A staff member (behavior specialist) introduced himself and took Charlie around the building, while we went on a tour with the director and Charlie's case manager. ABA is the main approach but it's not as "tight" –no timers going off every few minutes — as in the public school autism program that Charlie is currently in. The staff to student ratio is also not the same as in Charlie's current school (and on his IEP, which states that he is to be in a 1:1 staff-to-student ratio instructional setting.)

The classrooms for the children in the secondary (high school age) level are located in the lower section of the building, with each classroom set up as a "store"—ShopRite, a barber shop, a bank, a hardware store. (All of whose real-world and actual equivalents–and also college campuses—Charlie visits, as we noted to the center's director.) There's a cafeteria where the students eat (Charlie currently eats lunch in his classroom, as the middle school cafeteria is quite chaotic) and also, besides the pool, a gym, an indoor track, exercise machines (which Jim is familiar with, as he used to use them sometimes while Charlie and I swam in the pool.) We recognized quite a few students, from previous schools, weekend and afterschool programs.

A brief conversation with the director revealed that, if all that one read were Charlie's school file, one would think that he is a "head-banger." I had printed out some blog entries about how Jim and I address Charlie's transitioning, his communication (verbal and non-verbal) and his sensitivity (to sound and much else, including the emotions of people around him.) 

Jim and I made it very clear, Charlie wears the helmet in one location—the public middle school in our town. There was talk about "fading it out" and you can be sure there's going to be a lot more talk about this. Sometimes I think we'd better just invite all the school staffs to run errands with Charlie and me, kayak with Jim, and eat out with us at various diners around New Jersey so that it's very clear how Charlie does NOT, NOT, NOT need the helmet.

The director asked me what Jim and I do when Charlie has what I guess might be an "autism nightmare without end" sort of "behavior" and we said, he has those at school, not at home; that we can tell when Charlie is telling us something does not feel "right" in him and how we respond, validating his feelings and keeping ourselves cool, calm, and peaecful easy-feeling.

Apparently we'll learn whether or not Charlie will be accepted at the center by the end of this week or early next week. 

Tuesday Charlie had gotten up early, perhaps in anticipation of the big day. After we got home, he headed for the refrigerator (no surprise there) and then had a bike ride with Jim in beautiful fall weather. Once home, Jim gathered up his laptop and books to take the train to NYC. Charlie stood and said "Dad," and then held Jim's arm with a big smile. I thought back to how hesitant Charlie had looked when the staff member had indicated Charlie should walk with him while Jim and I stayed with the director and Charlie's case manager. I wondered, did Charlie think that we were going to leave him there? 

As a result of hearing talk of a residential placement, "temporary" or not, around him (not with Jim and me, we have a policy that we don't talk about Charlie in front of him, and certainly not about such a topic) I have thought that Charlie has become spooked to the point of thinking that any new "placement" for him could be a residential one. 

And the reality could not be further from such a thing. 

That's why I gave this blog the name it has.

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Comments
14 Responses to “The Big Autism Center”
  1. emma says:

    Well, it’s a big week for you all and I truly hope some good comes out of it.
    I’m feeling nervous about the outcome, I can’t imagine how you are feeling……..

  2. autismvox says:

    I know Charlie is very aware of and affected by my moods and Jim’s so it’s been good to remind myself to stay “peaceful easy”—I know we’ve done pretty well ourselves taking care of Charlie and teaching him and keep reminding myself of this.

  3. Niksmom says:

    I suspect you were being a bit tongue-in-cheek when you sugested that you invite school staff to join you on errands, etc. But, why not? If all the school has to go on is what’s written on paper, they will never get a full picture of Charlie and all that he does and how he handles his world.
    We often encounter similar thoughts about Nik when all someone sees is his “history” on paper. It doesn’t even come close to who he is and what he’s capable of.

  4. Sherry says:

    Great post, as usual!! You and Jim are such great parents. Charlie is so lucky to have both of you fighting for him. I hope they accept him and that the placement works out great for him. I have heard good things about this center. We have also met families at some of the rec programs with children in the program there. Maybe a less “tight” ABA program will be just the right thing for him. I have sometimes wondered about that for my son. I had to laugh a little about your comment on the timers going off. It is sort of ridiculous, isn’t it? By the way, the title of your blog is PERFECT. It is exactly how I feel about my boys. We are on this journey together, no matter what!!

  5. Janet Ha says:

    This sounds like it would be so much better than the school Charlie has been in. He might actually be able to learn some practical skills! (as opposed to spending the day locked down and miserable.)

  6. Linda Sullivan says:

    Sending positive vibes your way. Regarding the outcome, if this school won’t accept your son who WILL they accept?

  7. rickcolosimo says:

    I think that the outings are a great idea. You might also think about videotaping your adventures.
    Video’s nice because you
    (a) get memories
    (b) can edit down to relevant segments
    (c) have some control over what the school sees — they see the bad at school, they don’t need to see it on film
    Plus, your goal isn’t to try to build a complete picture of Charlie but rather to show them what they don’t see at school and apparently don’t believe is happening with you and Jim. They may be of the mindset that we parents are terminally conflicted observers, even though it’s clear that you have accepted, and acknowledged, Charlie as a whole.
    Rick Colosimo
    http://www.asdworld.com/

  8. Hai Dang says:

    I agree with Rick’s suggestion on videotaping your adventures. I did the same thing for my oldest son when he was in 2nd grade. I showed the video of my son going with me to places, in speech therapy sessions and being at home in an “easy feeling environment” without any SIBs. Video is a great way to introduce Charlie in a positive way. We do not know what kind of things have been said about Charlie behind your back (sorry I do not want to be negative just be realistic) to people at the new school. You have to counteract it with positive things and show how “easy going” environment can and will be good for Charlie. It should be part of the accomodations for Charlie to learn in the least restrictive environment. The helmet must go.

  9. Videotaping sounds perfect to showcase how Charlie is with Jim and you.
    This Center reminds me of the Chubb & Son headquarters in Warren that I worked at when it was first opened in the early 80s. I loved that building, was like an open mall – had a bank, travel agency, computerized mail carts, seemed so far ahead of its time, especially when I transferred to the Los Angeles offie and lost all those perks from home office.
    Will this school environment also do home visits? I say do some home field trips.

  10. Nicole says:

    Aw, too bad they only do swimming once a month1 I’m really hoping this works out well, some day schools can be very good. I also think videos showing Charlie doing well may help. Good luck- keep us updated.

  11. autismvox says:

    Dusting off my FlipVideo… thank you for the suggestions…..

  12. mothersvox says:

    What you said about the YMCA reminded me of Sweet M’s experiences at a Y “inclusion” program several years ago. I think the Y could step up and do more in terms of neurodiversity and autism awareness . . . I wonder how that could happen?
    Glad the visit went well!

  13. autismvox says:

    Currently our Y has some “special programs” for kids like Charlie; I guess my main interest has been ways to include him in the daily business and operations of the Y. A work in progress……certainly the Y’s mission statement suggests that it could be open to a little more inclusive sort of perspective (or so one would hope, wish).

  14. autismvox says:

    thank you so much Shawn. we have been feeling, how to put it, hesitantly hopeful, thought wary and more than a bit sad. start date is November 16th; counting the days now. Warm wishes to you and yours and, wow, a dance…..

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The Big Autism Center

Charlie grocery shopping on Tuesday afternoon (and not at the model grocery store at the big autism center) We toured the large out-of-district autism center yesterday at 10am. It's only about a mile from our apartment—in fact, I've mentioned it before when I was writing the autism blog at Change.org. Charlie and I used to swim at the center's pool, as our YMCA was renting the space (they aren't any more). The pool was lovely, huge and deep and Charlie and I spent many, many happy afternoons there. But the facility didn't have a family or unisex changing room and, even though there were often very few people swimming, Charlie was not allowed in the women's locker room with me and so I wrote this letter in search of a few accommodations. I regularly pointed out to the YMCA staff that the pool was part of an autism school—-to which the YMCA staff always answered words to the effect of "we have nothing to do with that."

I had driven Charlie by the big center last Thursday and Jim and I had been talking about it on and off to him, sometimes noting that it's where we used to swim. (Apparently the students don't swim too frequently, perhaps once a month, and the roof of the pool area is currently getting some repairs so no one can swim.) Charlie ran right into the center and looked around: It is a huge space (imagine an indoor mall sort of building and layout), with three levels and almost 200 children. A staff member (behavior specialist) introduced himself and took Charlie around the building, while we went on a tour with the director and Charlie's case manager. ABA is the main approach but it's not as "tight" –no timers going off every few minutes — as in the public school autism program that Charlie is currently in. The staff to student ratio is also not the same as in Charlie's current school (and on his IEP, which states that he is to be in a 1:1 staff-to-student ratio instructional setting.)

The classrooms for the children in the secondary (high school age) level are located in the lower section of the building, with each classroom set up as a "store"—ShopRite, a barber shop, a bank, a hardware store. (All of whose real-world and actual equivalents–and also college campuses—Charlie visits, as we noted to the center's director.) There's a cafeteria where the students eat (Charlie currently eats lunch in his classroom, as the middle school cafeteria is quite chaotic) and also, besides the pool, a gym, an indoor track, exercise machines (which Jim is familiar with, as he used to use them sometimes while Charlie and I swam in the pool.) We recognized quite a few students, from previous schools, weekend and afterschool programs.

A brief conversation with the director revealed that, if all that one read were Charlie's school file, one would think that he is a "head-banger." I had printed out some blog entries about how Jim and I address Charlie's transitioning, his communication (verbal and non-verbal) and his sensitivity (to sound and much else, including the emotions of people around him.) 

Jim and I made it very clear, Charlie wears the helmet in one location—the public middle school in our town. There was talk about "fading it out" and you can be sure there's going to be a lot more talk about this. Sometimes I think we'd better just invite all the school staffs to run errands with Charlie and me, kayak with Jim, and eat out with us at various diners around New Jersey so that it's very clear how Charlie does NOT, NOT, NOT need the helmet.

The director asked me what Jim and I do when Charlie has what I guess might be an "autism nightmare without end" sort of "behavior" and we said, he has those at school, not at home; that we can tell when Charlie is telling us something does not feel "right" in him and how we respond, validating his feelings and keeping ourselves cool, calm, and peaecful easy-feeling.

Apparently we'll learn whether or not Charlie will be accepted at the center by the end of this week or early next week. 

Tuesday Charlie had gotten up early, perhaps in anticipation of the big day. After we got home, he headed for the refrigerator (no surprise there) and then had a bike ride with Jim in beautiful fall weather. Once home, Jim gathered up his laptop and books to take the train to NYC. Charlie stood and said "Dad," and then held Jim's arm with a big smile. I thought back to how hesitant Charlie had looked when the staff member had indicated Charlie should walk with him while Jim and I stayed with the director and Charlie's case manager. I wondered, did Charlie think that we were going to leave him there? 

As a result of hearing talk of a residential placement, "temporary" or not, around him (not with Jim and me, we have a policy that we don't talk about Charlie in front of him, and certainly not about such a topic) I have thought that Charlie has become spooked to the point of thinking that any new "placement" for him could be a residential one. 

And the reality could not be further from such a thing. 

That's why I gave this blog the name it has.

Comments
14 Responses to “The Big Autism Center”
  1. emma says:

    Well, it’s a big week for you all and I truly hope some good comes out of it.
    I’m feeling nervous about the outcome, I can’t imagine how you are feeling……..

  2. autismvox says:

    I know Charlie is very aware of and affected by my moods and Jim’s so it’s been good to remind myself to stay “peaceful easy”—I know we’ve done pretty well ourselves taking care of Charlie and teaching him and keep reminding myself of this.

  3. Niksmom says:

    I suspect you were being a bit tongue-in-cheek when you sugested that you invite school staff to join you on errands, etc. But, why not? If all the school has to go on is what’s written on paper, they will never get a full picture of Charlie and all that he does and how he handles his world.
    We often encounter similar thoughts about Nik when all someone sees is his “history” on paper. It doesn’t even come close to who he is and what he’s capable of.

  4. Sherry says:

    Great post, as usual!! You and Jim are such great parents. Charlie is so lucky to have both of you fighting for him. I hope they accept him and that the placement works out great for him. I have heard good things about this center. We have also met families at some of the rec programs with children in the program there. Maybe a less “tight” ABA program will be just the right thing for him. I have sometimes wondered about that for my son. I had to laugh a little about your comment on the timers going off. It is sort of ridiculous, isn’t it? By the way, the title of your blog is PERFECT. It is exactly how I feel about my boys. We are on this journey together, no matter what!!

  5. Janet Ha says:

    This sounds like it would be so much better than the school Charlie has been in. He might actually be able to learn some practical skills! (as opposed to spending the day locked down and miserable.)

  6. Linda Sullivan says:

    Sending positive vibes your way. Regarding the outcome, if this school won’t accept your son who WILL they accept?

  7. rickcolosimo says:

    I think that the outings are a great idea. You might also think about videotaping your adventures.
    Video’s nice because you
    (a) get memories
    (b) can edit down to relevant segments
    (c) have some control over what the school sees — they see the bad at school, they don’t need to see it on film
    Plus, your goal isn’t to try to build a complete picture of Charlie but rather to show them what they don’t see at school and apparently don’t believe is happening with you and Jim. They may be of the mindset that we parents are terminally conflicted observers, even though it’s clear that you have accepted, and acknowledged, Charlie as a whole.
    Rick Colosimo
    http://www.asdworld.com/

  8. Hai Dang says:

    I agree with Rick’s suggestion on videotaping your adventures. I did the same thing for my oldest son when he was in 2nd grade. I showed the video of my son going with me to places, in speech therapy sessions and being at home in an “easy feeling environment” without any SIBs. Video is a great way to introduce Charlie in a positive way. We do not know what kind of things have been said about Charlie behind your back (sorry I do not want to be negative just be realistic) to people at the new school. You have to counteract it with positive things and show how “easy going” environment can and will be good for Charlie. It should be part of the accomodations for Charlie to learn in the least restrictive environment. The helmet must go.

  9. Videotaping sounds perfect to showcase how Charlie is with Jim and you.
    This Center reminds me of the Chubb & Son headquarters in Warren that I worked at when it was first opened in the early 80s. I loved that building, was like an open mall – had a bank, travel agency, computerized mail carts, seemed so far ahead of its time, especially when I transferred to the Los Angeles offie and lost all those perks from home office.
    Will this school environment also do home visits? I say do some home field trips.

  10. Nicole says:

    Aw, too bad they only do swimming once a month1 I’m really hoping this works out well, some day schools can be very good. I also think videos showing Charlie doing well may help. Good luck- keep us updated.

  11. autismvox says:

    Dusting off my FlipVideo… thank you for the suggestions…..

  12. mothersvox says:

    What you said about the YMCA reminded me of Sweet M’s experiences at a Y “inclusion” program several years ago. I think the Y could step up and do more in terms of neurodiversity and autism awareness . . . I wonder how that could happen?
    Glad the visit went well!

  13. shawn says:

    I hope it goes well at the school. Moving MJ to a placement in an out of district school for kids with special needs was an incredibly difficult thing to do. After some incidents in the school district, we were given the go ahead to pick any school we want.
    There’s no school focusing on autism nearby. We chose the school that we felt would be most likely adapt to MJ’s needs rather than have him follow “their program”. It worked out.
    He’s now in 9th grade, and has really clicked with a group of peers. He’s doing well and is incredibly happy at school. He went to a party/dance last night had a blast. He’d never be able to enjoy himself like that in a regular school.

  14. autismvox says:

    thank you so much Shawn. we have been feeling, how to put it, hesitantly hopeful, thought wary and more than a bit sad. start date is November 16th; counting the days now. Warm wishes to you and yours and, wow, a dance…..

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