Wednesday, June 25, 2014

When programs won't accommodate kids with special needs


The door to the room didn't have a sign saying "No kids with special needs allowed" but it might as well have.

We're at the Jersey shore on vacation this week, and I'd signed the kids up for an evening program at a hotel we like. The staffing is handled by a caregiving service, one we'd personally used over the years on vacation. The woman who owns the service knows Max, and once babysat for him and Sabrina.

I parked the car while Dave took the kids inside. It was our first evening of vacation, and we had plans to celebrate with dinner for two; Dave made reservations at a restaurant we'd been wanting to try. As I headed down the hallway, I saw Dave and the kids leave the room where the program was and head around the corner. I thought that was odd. When I found them, I saw Dave talking with the concierge. 

I'd booked the reservation days ahead of time. I'd told the staffer that Max had special needs, and that  he'd been to the program before. The concierge said she'd been trying to reach me (unfortunately, they'd gotten my phone number wrong). The owner of the caregiving service had informed the hotel that the program could not accommodate Max, she told me.  

I was furious. And bummed for the kids, who'd been looking forward to going. And bummed for me and Dave, too. I asked to speak with a manager as Dave and the kids walked away. I told him how wrong it was not to include kids with special needs. He apologized profusely, but there was nothing he could do, he said, because the program was "outsourced" to the sitting service (which he noted again when I called him). I walked off to grab Dave and the kids and leave. The manager followed and offered to host us for dinner at the hotel's restaurant. Given that our plans had been ruined, we thought it was fair to accept.

After we sat down at the table, Max cried. "Am!" he said. "Am!" ["Camp!'] It literally made my heart hurt. I reassured him that we'd do something else that was fun and that we'd have an ice-cream party at home. Sabrina was disappointed, too. We talked about what it means for places to include kids with all kinds of abilities, and how wrong it was not to let Max come to the camp.

A program refusing to accommodate a child with special needs isn't uncommon; it's happened to us before, as well as to other families I know. And it wasn't the caregiving company owner's fault that Max showed up when he wasn't wanted...but it was seemingly because of her that Max was unwanted. I called her; I left a message saying I considered it "unfortunate" when places didn't accommodate Max, said I'd be writing something on my blog, left my number and asked her to call back. Instead, she sent several long texts.

I'm sharing bits below. I'm hoping that people running kid activities, classes or programs who aren't amenable to letting kids with disabilities join in will read this and see just how exclusionary it is...and why their perceptions may be wrong.

"Max cannot feed himself in [on] his own, our staff needs to serve all campers. Max needs one on one assistance which we can not provide."
Actually, Max is now feeding himself on his own and has been for some time. Like any children, those with special needs can progress; they do it on their own timeline. Just because a child with special needs is unable to do something one year, it's wrong to assume he will never be able to do it. Our children may be delayed, but they have the potential to develop.

"We are not equipped....to accommodate special needs children there it is not a school, it is a csmp [camp]" And then, in another text, "As much ad [as] we sympathize of [with] you you must consider out [our] staffs lack of knowledge and ability yo [to] cope as well."
What she seems to have been saying is, only people who are certified in special ed can help children with special needs in in a camp-like setting. I obviously can't speak for all kids with disabilities, but I can say that the care that my son currently requires in such a setting is this: Help picking up a cup to drink, help pulling his pants up and down during toileting, help with craft projects. It's similar to the care a young child might require. Also, you need to have patience with communicating with him. For these kinds of things, I am 99.9 percent sure, you do not need a special ed degree. Dave and I had always felt comfortable leaving Max in the care of experienced sitters who'd been background checked, as this company's sitters are.

"We can not accept children who have difficulty communicating to staff...." And from another text, "If a child can't express their desires, wants or needs then obviously this makes it difficult for a staff member to assist. This is not beneficial to the child and it can cause frustration to both parties. We obviously know we can contact parents but like last year phone calls are not heard as most parents are preoccupied."
She was referencing last summer, when Max wet himself and the program staffers tried to contact us only we didn't have cell phone reception in the restaurant, we eventually realized. Now, in terms of not accepting children who have difficulty communicating to staff: The program at the hotel accepts children ages 3 to 12. It is hard to imagine that every single 3-year-old (or 4-year-old or 5-year-old) is able to clearly communicate his "desires, wants and needs." Worse is the assumption that Max cannot do so. Max communicates in his own way—nodding, saying "yes" or "no," gesturing, speaking some words and using a speech app. I am not saying he communicates like another 11-year-old can; he does not. But he is capable of expressing himself. There is just one communication issue, as I see it: People who refuse to engage. 

"One aide for Max last year told me she spoke with your husband when Max was picked up. I was there too and said we had difficulty and that children must be independent. I am sorry you don't remember this." And then in another text, "These verbal messages were relayed in a kind manner so that you understood this camp wasn't right for Max. This message as clearly stated by both...and myself and as kind as tactful as possible stated -------- Apparently and obviously wasn't understood or accepted!...." 
Neither Dave nor I recall what was said a year ago, but it was evidently so "tactful" that we didn't get the memo that Max was no longer welcome in the program. Why would we have returned otherwise? This summer, we assumed the arrangement would be the same as the one we'd gladly and gratefully worked out in years past: that one of us would come back should Max need toileting help. This is something we've done with hotel programs when we travel. As for being "kind" to us in relaying that a program isn't "right" for Max, we don't need kindness because including a child with disabilities in a program, event or activity is not an act of kindness. It is fair. And in a place of public accommodation, it's the law.

"I will keep your voicemail as a threat to us and [the hotel] and submit it to their attorneys for proof ad [and] evidence in a court of law if our companies are negatively or discrinatorily [discriminatorily] mentioned on line."
Yah, discrimination: Let's talk about discrimination and the Americans with Disabilities Act (ADA). Title III specifically states that individuals with disabilities cannot be excluded from "public accommodations" because of a disability. "Public accommodations" applies to any private place of business or nonprofit group that's open to the public for sale or lease of goods and services, regardless of size—which includes restaurants, movies, hotels, places of recreation, day care centers, camps and more. (Private clubs and religious organizations are the only private entities explicitly exempt from Title III requirements.) There is also discrimination that plays out in the code of good old morals and ethics. Parents of kids with special needs have every right to speak up when they face what they believe to be discrimination of any kind.

"I don't appreciate words put in my mouth nor look like the bad guy here against a precious child to who we bent over backwards to accept, assist with love and care, so you could enjoy a quiet dinner."
Again: Kids with special needs are not charity cases that childcare providers need to "accept" or "assist with love and care" any more than any other child they take care of. Don't all children deserve this? I wondered if this all boiled down to financial concerns. The owner had a third sitter on hand last year (a nurse) and, as she informed, me, "the hotel only pays for two staff members." I understand that small businesses may not be equipped to handle extra costs like this. If we had known that this was an issue, we might have appealed to the hotel. But we were never given that chance.

"Unfortunately, not everyone agrees with you and your husband on how easy it is to care for a special needs child especially when we don't have the experience."
Well, whoa. I definitely don't think childcare is easy (and I don't appreciate words put in my mouth). And yes, Max requires more attention than a typical kid his age, but he shouldn't be excluded from programs or activities because of that. Caring for him means extra assistance at times, but it also means connecting with parents about what will make things work for everyone involved when concerns arise. Caring for him means believing that children with special needs deserve to enjoy the same pleasures that other children enjoy. Caring for him means not assuming that parents think it's "easy" but that they assume it's OK to leave their child in a well-run program they pay for, as parents do.

There is a half-day children's program our kids used to do at a resort we're at each summer (they've aged out of it). The woman who ran it for years, a teacher, was genuinely happy to have Max there and had no issues changing him when he wasn't yet potty trained or helping him in the pool or otherwise. She never said one word about helping him, other than to ask what she needed to know.

There is a gym that Sabrina goes to near our home. On occasion, they have Parents' Night Out. Siblings are welcome and when I have called to let them know Max would like to attend, they've tried to find an additional staffer for the evening because it's a physical event and Max needs a hand. Usually, it's
a gym teacher in her late teens who has no experience caring for kids with special needs. Sometimes they've been able to get someone, sometimes they haven't. But they try.

Obviously, laws were instituted because of the considerable uphill battles people with disability face in terms of accommodations. But there are continued issues with a lack of awareness and enforcement, and for parents and others, the challenge of not having the time or resources to push (and push some more) or take action when we're raising kids who already require extra time and resources. I've often found it's easier to walk away and, when possible, find something else led by someone who gets it. My son's biggest disability isn't his cerebral palsy—it's people's closed mindsets.

People should want to include kids of all abilities in activities not because they have to, or out of kindness, but because it's the right thing to do. Yes, it takes some effort. But as Max shows me every day, where there's a will, there's a way.


Image: Flickr/Celine Nadeau

73 comments:

  1. ugh. That just is not right. I hope Max's self esteem does not suffer because of this episode. He is just as worthy as any 11 year old boy. Hugs to all of you.

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    1. Thank, Kathryn. He was very upset he couldn't go, but did not seem otherwise affected.

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  2. This seems like a huge communications failure on the part of the caregiving service starting with

    1. Their failure to communicate with you of their problems with accommodating Max the last time. Instead of some obviously oblique references to some issue last time, they should have at pick up told you that they needed you to call and have a conversation with them before you registered Max for another program. This failure led to...

    2. Their failure to learn about what Max really needed to be accommodated this time. If they'd told you to call and discuss Max's needed accommodations in advance they would have known he fed himself now. If based on the conversation it was clear that they still needed another staffer and given the company's small size couldn't reasonably provide one, they could have suggested you call the hotel (who also has its own ADA requirements) and seen if they would have been wiling to pay for one given that what is a reasonable accommodation for a hotel (which may have huge corporate resources) is different than what is reasonable for the small business caregiving service.

    3. This conversation would also have given the caregiving service the chance to discuss the communications failure the last time with your cell phones and have worked out a better plan that might have involved something as simple as you providing them with the name and number of the restaurant you'd be at and checking in with restaurant staff to ask them to come get you if a call should come in when your cell service wasn't working.

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    1. Exactly. The decent thing to do--at the very least--would have been for the owner to have a conversation with us herself. Dave and I both don't recall what was discussed last summer, but I do know that it was never made explicitly clear not to return. From the texts, it seemed like her mind was made up then, only we didn't know it until this year. We registered for the evening with the hotel, and it was the hotel concierge who tried to reach us after being told by the owner of the caregiving company she could not, would not accommodate Max. Again, seems like her mind was made up. And as became clear from her texts, her mind was VERY made up.

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  3. Wow, that's crazy! I think a large problem is that many people assume kids and adults with special needs require a 'professional' level of care, when it's just not true. Then, when they feel they aren't qualified, they panic (which is totally unacceptable in this case).

    I remember when I was 16, I was a counselor-in-training at a Christian camp in Maine that has programs for typical kids, for families and a program for adults with special needs. As part of the youth leadership development at the camp, everyone took a turn working one week on a certain rotation. When I worked with the Ocean Bay campers (with special needs), I was initially super stressed about doing something wrong. I felt like I didn't have any training and I was worried about accidentally hurting someone, especially since the campers had a really broad range of needs, and some were wayy less verbal/mobile than Max. In the end though, I realized that people with special needs are not delicate flowers - yes, I still wish I had had a bit more training, but, it was very similar to the other camps - helping people walk/roll out onto the beach, feeding some campers, organizing songs and games. It was a really great experience, and I know that many of the campers had been coming for years.

    I'm not sure they have camp programs specifically for kids with special needs (this one was definitely adult-specific), and I know you would likely prefer a Jewish or secular camp, but I am fairly confident that they would work to be inclusive of Max. It's called camp Oceanwood if you're interested. :)

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    1. Yes, Jillian, I think that's a common problem, although in this case the caregiving company already had experience with Max and decided they could not accommodate him.... Oceanwood sounds awesome. There are definitely long-term summer camp programs for kids with special needs, but I am going to be looking at some inclusive possibilities this summer in consideration for next year!

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  4. I am so sorry you're going through this. I can relate in some ways because I know my daughter isn't accepted into the typical ballet classes, on the soccer field, or even the Jewish day school. It's heartbreaking not just for ourselves and our kids, but it also robs the typical kids of the opportunity to meet and interact with all kinds of different kids, spreading the message of inclusion and respect for all.

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    1. Dani G....
      "It's heartbreaking not just for ourselves and our kids, but it also robs the typical kids of the opportunity to meet and interact with all kinds of different kids, spreading the message of inclusion and respect for all." I can't but agree!! It is heartbreaking!! ;)
      Love you later, Raelyn



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    2. Dani, I'm sorry to hear that. It seems sacrilegious when religious schools—and places of worship, which we've experienced—don't do inclusion. And yes, myopic, too, because like you say it's a lost opportunity for everyone involved when programs don't include our kids.

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    3. Yes, it's heartbreaking if a kid with special needs is excluded, but there ARE certain times when it's necessary for safety purposes (though it SO wasn't in Ellen's case).

      Last year, my girl required six stitches courtesy of a classmate who stabbed her with a protractor (a little boy on the spectrum with, um, let's call it impulse control issues). The joys of small town living are such that my husband and I were supposedly the "bad guys" for demanding the kid be removed from our kid's class, as is a single second grade class in the single elementary school in our tiny town -- so my girl got bumped up to third grade. Heaven forbid the the kid who is at fault bear the the consequences of his actions.

      (I require my kid to be civil to the little boy that assaulted her, because, well, it keeps the world from descending into anarchy and is the right thing to do. As a result, I just got another heartbreaking call from that boy's mom, asking why my girl is nice to her son yet will not play with him at school, declines playdates with him, etc. There's really no nice way to say 'no, not now, not ever - the natural consequences of assaulting someone are that said person, well, wants nothing to do with you).

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    4. Autism and other disabilities are no excuse to hurt another person. This is from an autistic person.

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    5. This has absolutely nothing to do with the case at hand and I wonder why you are bringing it up here. It would be like going to a site about Trayvon Martin and bringing up an anecdote about another African American who had engaged in criminal activities. Nobody is saying that all people with disabilities are blameless. This is about Ellen's family. That's it.

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  5. Ellen, I am so glad that you chose to write about this experience, even though I could feel my blood boil as I read it. This is exactly the problem that Kids Included Together (KIT), a national non-profit, has set out to solve. We provide training for child care, recreation and enrichment programs so that they can welcome and support children with diverse needs. The training helps them understand the philosophy of inclusion (changing attitudes toward people with disabilities), then teaches them the practical skills that will increase their confidence (changing their practices to be inclusive). People should want to include all children not only because it is the right thing to do, or because it is the law, but also because when communities are inclusive, the experience is richer for everyone. I would love to help this program- Ellen, I think you have the contact info for some of our KIT staff (CJ Lucke, maybe?). Let us know if we can help.

    And, thank you for your blog! Everyone at KIT is a big fan!

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    1. Funny, because I'm a big fan of KIT! I doubt I'll be speaking with this person again, given her reaction, but I am typically happy to spread the good word about KIT.

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  6. Holy crap, Ellen!! I would be SPITTING MAD.

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    1. I was outraged when I found out, and then totally shocked by the texts. They made a bad situation worse.

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  7. This camp director sounds like a b!tc!. I'm sorry your family had to go through that.

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  8. It never stops. There is a never a day with my child (CP, Visually Impaired) that just goes smoothly whether we are fighting with camps, schools, therapists, doctors or insurance it seems like everyday is a new battle. Ellen you have written about something that so many of us as parents face and I am glad you are able to connect with so many.

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  9. I am sorry your family has to go through this...
    I surely hope people and places will be more accommodating after reading blogs like yours ..

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  10. Upsetting! The horrible thing is that Max really wanted to do it, and was turned away. Sorry you had to go thru this!

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  11. This makes my heart hurt for you and for Max.

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  12. I'm no lawyer... But, isn't this more than just extremely crappy and hurtful, but also illegal (breaking the ADA)? Justice won't help alleviate the hurt your family felt, but every little victory is a small step towards all of us avoiding such experiences in the future. I know we special needs parents have no extra time, but a quick email/call to your state's disability/ADA advocate sounds in order (especially since this lady threatened you). We had a similar experience at a restaurant on a recent vacation, and I felt like emailing our advocate helped - am waiting to hear back from their lawyers about making a formal ADA violation complaint to the DOJ. Sending internet hugs your way.

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    1. No it probably is not in violation of the ADA. All the ADA requires is "reasonable accommodation" and if Max's needs really require that more than otherwise necessary number of staff members be there, most courts would likely find that the caregiving service did not have to accommodate Max by having another staff member in place. The issues with Max's toileting also might be considered outside of reasonable accommodation. The failure of the plan to work last time would be something the Court would look at in determining if turning Max away was reasonable. Please understand that this analysis is a purely legal one. I have worked to gain accommodations for many kids and know that too many on both sides don't understand what the law does and does not require.

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    2. Agree, almost anything can be seen as an accommodation for a disability, but it must reasonable. Requiring a one on one aid to assist or an extra staffer would probably not be, in addition to the inability to have a successful interaction in the past and meet his needs. While she was less than tactful in saying she couldn't understand him, she was implying that she could not accomodate and meet his needs. In order for her to properly do so, regardless of your belief it is reasonable legally that an accommodation would include an individual with training in understanding special needs. The court would likely weigh the purpose, a night out and the cost and care would not likely be justifiable in their eyes. ADA steps in for more fundamental actions. Again, sad this happened but throwing out legal language may not be valid. She is just a business owner, and while it would have been the kind and right thing for her to accept Max she probably is not legally bound.

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  13. Few things make me angry, but this really does. How unfair to Max! How horrible! I'd definitely report her behavior to whatever authority she gets her licensing from. I'm so sorry our world is like this. It makes me want to never leave my daughter's side.

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  14. Would they accept him if he brought a shadow or one to one with him. They wanted to do that for my son at a summer program and we told them that since it was a public place receiving federal funding they had to take him. They did but with a shadow. Sorry to hear Helen the rejections and the ignorance never seems to end

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    1. So glad that worked out for your son. A shadow for a long-term summer program is awesome, but finding one for a night out while on vacation wouldn't be worth the effort.... We were grateful for the program because it gave us all a night out.

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  15. Although this is upsetting, I have to question whether the owner of the service had changed hands and implemented new policies? I would write a letter saying Max has entered the program before andd outline exactly what he needs. ALSO Sabrina knows Max well enough that if he truly had a problem, she could help the staff figure oout what Max needed.. That's how my brothers and I handled it when my family went to Disney. I would write a letter to the company explaining what hhappened and also highlight the fact Max has attended the program before

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    1. Justin....
      "Sabrina knows Max well enough that if he truly had a problem, she could help the staff figure out what Max needed.. That's how my brothers and I handled it when my family went to Disney." Valid point!! ;)
      Love you later, Raelyn

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    2. Nope, same owner. And yes, Sabrina is a great translator for Max! I'm not sure that or anything I offered would have made a difference and I'll never know because the owner of the caregiving company closed that door.

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  16. In my opinion, the ADA has sometimes actually been used to exclude folks with disabilities. Back when my kids were young in the 80s, I would sign them up for an after-school care program at the neighborhood school, run by a local non-profit child care service. All of my kids had special needs, and they accommodated all of them, including my daughter who has severe CP and has to be fed, taken to the bathroom, and assisted with all activities. But then when the ADA was passed, the child care informed me that I needed to meet with their staff at the main office, including their nurse, to evaluate whether the program could accommodate her special needs, which they determined it couldn't, even though they had been doing it for years. The same thing comes up when you look at job descriptions these days, which now include a detailed list of all the physical requirements for a given job. This is how Walmart and other employers have attempted to exclude potential employees with disabilities, by writing demanding physical requirements into every job description.

    That being said, we as parents always need to step back and evaluate the situation and decide if a fight to include our child where they are not wanted or where the staff is not adequately trained is worth it. Your child's well-being has to come before your desire to win a battle on principle. I once "won" a battle to have my child placed in a school program that I thought would best meet his needs, only to have the staff make his life miserable. And one summer I sent my daughter to a Camp Fire day camp, where the organization actually promoted inclusion, and then a staffer/volunteer didn't fasten her wheelchair seat belt, she fell out and broke her collarbone.

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  17. I used to coach a soccer team for kids like ours. Children in middle and high school volunteered and did GREAT. Why can't grown adults get it? :::angry noises:::: about all of this.

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  18. seems my post was deleted. if indeed it was, may i ask why? i wrote it hastily - sorry if i offended

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    1. On vacation with spotty Internet connection, usually a comment posts that explains. I had to institute a no-profanity policy, mostly because of comments I get when I post about the use of the word "retard." Apologies for having to delete.

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  19. That sucks. I hope that you and your family were able to at least enjoy your dinner. I understand what's it's like to be not included. I work at a special needs daycare and when we went to the movie theaters, we were told, after only being in the theater for ten minutes, that our children with autism and one with CP were not able to attend unless they were fully capable of sitting silently for an hour and not walking around. It was a 1:00 showing of Monsters University, crying and screaming toddlers were all around us, but a parent felt 'uncomfortable' with how 'uncontrolled' our kids were being.
    The movie theater did offer to comp our tickets, so we returned when the movie was 'old' and we could be as loud as we wanted.

    As for having a degree to care for kids with special needs, I am only fourteen years old, and I backpack a 5 year old with autism everywhere. I am his aid, and make sure he is where he needs to be. I carry him around on field trips, help him with crafts, sometimes help him with feeding himself, and I try to handle his meltdowns. It doesn't take a degree to care for a child with special needs, it just takes an open heart and mind and love.

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    1. I am amazed that a 14 year old can do such a wonderful job of taking care of a special needs child...that just proves all you need is love.

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    2. PROPS to you, not just for what you do but for also showing others the way.

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    3. I only hope that there are more teens out there like you. You are amazing!

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  20. As a mom of a daughter with special needs I too have fallen to this type of Discrimination. It broke my heart and my children's heart not to be able to play with their friends. I wish there was something more we could do!

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  21. I'm sorry but that lady just sucks. I am speechless. I would send a copy of her awful texts to the management of the hotel. Maybe they can find a different group to hire who are accommodating. I would love to see their group replaced. She makes me sick.

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    1. I sent the lengthy first text she sent me to the manager I'd met the night before, then had a conversation with him about how it actually wouldn't be that hard to accommodate kids with special needs and it would benefit everyone and make the hotel appeal to a whole new clientele.

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  22. It's so frustrating this kind of blatant discrimination continues to take place. It really is just unfathomable to me that people can be that ignorant and cruel.

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  23. Something must be in the air this week. The owner of my mom's MHP told my husband to keep our "re!@>ded kid inside" this week. This type of discrimination is heartbreaking, and so painful for our kiddos. Keep fighting the good fight, Ellen. Eventually, it will become unprofitable to be intolerant, and I'm afraid only then will it decrease...

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    1. That's not just discrimination, that's pure hate. What kind of person says that?!

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  24. Ellen....
    "Like any children, those with special needs can progress; they do it on their own timeline. Just because a child with special needs is unable to do something one year, it's wrong to assume he will never be able to do it. Our children may be delayed, but they have the potential to develop." Very good!! ;)
    "My son's biggest disability isn't his cerebral palsy—it's people's closed mindsets." I repeat. Very good!! ;)
    I liked this Blog post, Friend!! ;-D
    Love you later, Raelyn





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  25. this made me cry. I have encountered so many of the same things with my sweet little guy. Yes it takes a little extra time to figure him out, and he takes extra attention, but other's peoples refusal to try to include him is the biggest disability of all. Him not being accepted into daycares has been our biggest hurdle. I know I could push the issue, but with him being non-verbal, do I really want to subject him to that. So, I have decided to take on the undertaking of trying to start my own.

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    1. Wow. That's impressive. How awesome would it be if your daycare could help other special needs parents? We've always had a sitter but when Max was younger, I worked at a company that had a Bright Horizons daycare center as emergency backup, and they were always wonderful with him.

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    2. That is my plan. A daycare facility geared toward special needs children. These parents need help. The school system in our tiny little town services approximately 500 special needs children. Obviously there is a need. We are able to bounce him around right now between his extended summer school, my son's work schedule, we work around my husband's dialysis schedule, my son's girlfriend helps us out, and there has been a couple of occasions I had to take time off work. It can get complicated but we do what we have to.

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  26. The most likely reason he was turned away is because they have a history with you--not being able to reach you on a previous occasion. Not everyone would feel comfortable changing an older boy and personally I would not want the liability. It is too bad you and your husband did not get your special evening but you did say you got a free family dinner. Frankly, you are making way too big a deal about this. When you have a special child things don't always go as planned. I know, I have a special child

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    1. Um, this isn't about things not going as planned. This is about people not including kids with disabilities. Sorry that seems to have gone over your head.

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    2. I don't think you are understanding the problem. At least I hope that is the case and it really would bother you if this happened to your special needs child. If it really was a case of not being Able to reach them, a responsible business owner would have addressed it as such and not made it out to be a Max problem. That totally crossed a line that Max's mom had every right to be enraged about. She was a lot nicer than I am afraid I would have been. I thought she handled it with a lot of tact and patience, especially being in her line of work and the amount of typos involved

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  27. AND that lady had such little respect for you that she would only text you. Very unprofessional.

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    1. And then to have the nerve to tell her she had saved her voicemail for her attorney if she did anything on the internet (or something like that. My blood was boiling by this time and I was only half reading and muttering under my breath)!

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  28. oh some people just flat out suck (that's not profanity, is it?). you did an amazingly great job writing about it. i'm sure it ruined at least part your one night of family vacay but i hope that you've been able to enjoy the rest of it...you certainly all deserve it! something is wrong with people. glad you're not letting them off the hook here...i'm sure it's exhausting to relive it through writing but it will be worth it for your family and all of our families in the end. *hugs*

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    1. Ha! Not profane. Profound. :) Our night turned out fine because we had a nice family dinner, but I have been thinking a lot about Max being excluded. It's not exhausting to write at all--I am totally fueled by a desire to make people aware of the exclusionary mindsets that exist, and hopefully get people to be more open to including our children.

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  29. A student teacher worked with my school band. I was not sure if he had a special education degree (probably not), but he was kind and accepting to me.

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  30. Ellen, I'd sue, period!

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  31. "I will keep your voicemail as a threat to us and [the hotel] and submit it to their attorneys for proof ad [and] evidence in a court of law if our companies are negatively or discrinatorily [discriminatorily] mentioned on line."

    Oh, good luck with that one, honey. I wonder, did she feel as if she were breaking the law? Perhaps, as you mentioned, Title III of the ADA? Did she honestly think that you, as a writer weren't going to, I don't know, WRITE about this?

    It's not as if you have to rake her over hot coals, either. The truth, it seems, is ugly enough.

    I'm so very sorry your family experienced this, Ellen, especially Max.

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  32. I'm sure the hotel's lawyers will be thrilled to know you have all her texts too. ;-) In all seriousness though, I am heartbroken this happened to you. People love their happy go lucky viral feed good stories but so many don't realize those stories don't happen unless they actively play their role in it too. What a missed chance for them and all those other kids to get to know what a cool kid Max is!

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  33. Exclusion makes my heart ache...I am sorry this happened to Max.

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  34. How unprofessional to respond by text, but at least you have documentation what was said!

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  35. As an autistic person, I can empathize with you. What if a new student teacher is not quite as accepting as the last one?

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  36. as far as I am concerned that Program needs to be Sued. let,s teach them not to discriminate against Innocent Kids who have issues. Max had the right to attend that camp his parents paid for. under the ADA they could be sued for a very very large sum. I am disabled my self I have Apergers syndrome. And I get hated on all the time it is wrong, That camp and the Hotel should be sued end of story good bye the End.

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    1. That was disgusting. No one should ever be treated like that.

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  37. This is very sad. Please do all you can to advocate for Max and kids like him.
    I have a lot to say. I will just write what type of message are they sending to these typical developing kids. How can they treat a child this way? Please contact organizations and agencies representing your child disability to make them even more aware of this horrible practice. It is very unfair. How great can this program be when they behave this way with a vulnerable member of society. They should be happy your child is around there typical peers. Your child is a first class citizen just like any child. What century are they living in? Please do all you can to set a good example. The hotel is also responsible. They should have not given you such a nonsense excuse. I wish you the best.

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  38. This bothers me greatly. As a parent of a special needs kid, someone who has worked with special needs kids (and adults), and as a teacher, this is just not right. Every child deserves a chance. Every child grows and learns. Yes, for some it might take more time, but it is what it is. Communication is the key here, and obviously this woman lacks some skills in that domain. Had things been communicated better, this would have been avoided, I have no doubt. Karma is on your side in this I think. There will be karma to deal with for her. I hope it's not too awful, but if she loses a little bit of business, then it would serve her right. Good for you for sticking up for your child. Good for you for teaching a life lesson to your other child. I will bet anything your other child will grow up to be one heck of an advocate. By then it will be too late for Max, but not for someone else. We need to start teaching our children now so that this doesn't perpetuate. My heart goes out to Max. I bet he was crushed. :(

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  39. This is awful!! The tone of her texts are as bad as what she has to say. I'm glad you are getting the word out. And I hope at some point this person feels the shame and regret that a decent person who wrote such a horrible text would. I recently took my daughter to a 'Waggin Tails Tutors' event at the library and we were told she couldn't participate because she couldn't read with full independence and I would not be permitted to accompany her. Yes, excluded from reading to a dog. As if the dog will take offense if I had to help her read a word. We've got a long way to go!

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  40. This is wrong. Max is a citizen as much as Sabrina. If they excluded her they would be in legal trouble. I think people use disability as an excuse to have apathy. This is why I want to advocate for people with disabilities I use a wheelchair and sometimes people will say if it is just going to be used by me why bother doing a ramp since I'm the only one who needs a ramp in my small town. That is wrong as well because everyone needs access. Call the disability law center if you need to

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  41. I edit writing all day long, so I can't NOT be snarky here and comment on her text writing/grammar. I hope she's not teaching grammar at camp. Okay, now that that is behind me. This is so, so unfortunate, and I'm glad that you posted. Very glad. We applied to a private school for Sammie for next year (as plan B if she didn't get into the inclusive charter we entered the lottery for), and she didn't get in. They gave me a very company line about how "public school would serve her better because they didn't have the resources she would need." I WAS PLANNING TO FUND OUR OWN ONE:ONE AIDE. All that we wanted THEM to provide was a supportive, loving environment and caring teachers (Sammie is cognitively age-appropriate, and they'd even acknowledged that when they did some developmental testing). It was so appalling, and I sobbed after we got the news. It just felt like such a punch in the gut, and I kept thinking how I got to take this punch for Sammie, but in life there would be many, many more and I couldn't take them all. This is such bullshit. (and by the way, that private school's mission is one that is founded on creating a culture of community, diversity and acceptance . . . apparently diversity to them is just about skin color and "acceptance" and "community" don't include inclusion of kids with special needs).

    All that camp needed to provide to Max was a loving, supportive, fun environment for a few hours. If they can't do that, they don't deserve to be in operation. Not for any kid. Special needs or not. I'm so hurt and angry for you.

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  42. Boy, can I ever relate to this! Imagine this scenario, you sign your special needs kid up for a SPECIAL NEEDS CAMP and they STILL exclude him! Yep, happened to my son, who has autism. They were mean to him too, and that was the worst part of it.

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  43. WOW! That woman is a piece of work. It's said that people tend to brace for consequences from others that they would dish out, so this woman seems to be more than a little defensive, snide, illiterate, litigious, hypocritical, and uber unprofessional. I didn't realize she had a crystal ball to forecast his abilities after a year (though some might call that short-sightedness). l also didn't realize that you could enforce corporate policies that are not well advertised and crystal clear to all patrons. I also detect a sense that she is merely hiding behind these so-called staffing issues and procedures to attack you personally. Not a good way to do business. The excuses from the hotel and the camp about not being able to reach you are limp at best - a professional would not have simply given up when the phone number didn't work. The worst of it was her threatening you with lawsuits in response to your request for comment! Clearly, the woman is clueless. Praying that you find a camp experience next year that is fun and staffed by people who are way more professional, compassionate and open-minded. (((HUG))) for the kids.

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  44. Ugh! This breaks my heart to read. At Kids Included Together, we provide specific training to daycare and other recreational program providers so that they can best support children with disabilities and facilitate meaningful inclusive experiences for them. I am so sorry to hear that this program was so unwilling to meet your family's needs, and that your romantic date was ruined!!! Please refer the hotel's program to our website (www.kitonline.org), and any other future programs you'd like Max to attend, if you feel they could do a better job at supporting your son and family. I am so sorry that this happened to you and yours, and I hope that someday, with some help from KIT, no kid will ever be turned away like yours was. Keep fighting, mom!

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Thanks for sharing!