Power Cafe!

Remember back in June when Angela turned 18? Do you know what comes with turning 18? Me panicking about Angela getting a job. I have a few friends in the DS community who have solved the problem not only for their own child, but they have opened businesses to employ others who have disabilities as well.

My friend Galit is a long-time reader here at The Garden. She lives in the Boston area and has started the MOST awesome project!!!

The Power Cafe is a coffee shop, but not just any coffee shop! The Power cafe will be staffed entirely by people with physical and/or developmental disabilities! Galit has started an Indiegogo campaign. Please go have a look and, if you're able, help support this venue that will be so beneficial to the disability community of Boston!

A Must Watch!

Brought to you by the Down Syndrome Guild of Greater Kansas City. This video should be shown in every school district across the nation. I think one of the best I've seen in all my years as a parent of kids who are Just Like You.

Nickelodeon Universe Responds

Today I received a phone call from Mr. Eric Engstrom, director of Mall of America attractions. He was responding to the online complaint form I filled out regarding our experience at the mall on Monday. I must say, I was pleased to get a phone call from him. I mean, you fill out and online form and hit "submit" and trust that someone is going to actually read it!  And is Jimmy the the tech support guy reading it or someone who can actually DO something?  Mr. Engstrom gets bonus points for reading my blog post to find out the whole story. ;-)

Mr. Engstrom was not at all happy to hear about this situation and how it transpired. He reacted personally to the discrimination that occurred. Why? Because Mr. Engstrom has Cerebral Palsy (CP). He has spent his entire life dealing with similar situations and he wasn't happy to hear it happened on his watch.

We discussed all the details of the incident. He acknowledged the inappropriateness of the discussion that took place about Angela with her standing right there, along with the reaction of staff to my request for Angela to ride independently. Mr. Engstrom never made excuses for their behavior. He never made excuses to cover their butts until he had an opportunity to speak with the staff who were involved so he could backpedal later like some other department heads might do. No, he never did any of that. I so appreciate him for the way he discussed this with me.

Mr. Engstrom asked me what I would like to see happen, including how they could make it up to Angela and the boys.  I told him I didn't want anything, other than to make sure this doesn't happen to anyone else.

I have Mr. Engstrom's word there is change coming to the Mall of America! We discussed several options for training staff in the area of disability awareness. After all, they have countless people with a wide variety of disabilities coming through the mall on a daily basis. The staff needs to know how to react appropriately. Training policies at the mall will be re-written.

While I did not want any type of compensation, Mr. Engstrom has given us four Nickelodeon Universe wristbands that will not expire.

Thanks to my readers for your support as I navigated dealing with this incident. I know many of you are raising kids who are differently abled. Please, if something  happens to you, don't be afraid to speak up. Don't think of it as "making waves". Instead realize bringing an issue to light can create change so those coming behind you don't have to experiences it themselves.

Nickelodeon Universe follow-up

I spent most of yesterday morning making phone calls to address the situation that happened at Nickelodeon Universe at the Mall of America.

1)  I filed an online complaint with Nickelodeon Universe. I wonder who actually gets those?

2) I contacted the Minnesota Disability Law Center. They took all the information about the case and said it would be approximately one week before I hear back from them.

3) Contacted the Minnesota Governor's Council on Developmental Disabilities who was not happy to hear about the incident. They gave some input on additional calls to make. 

4) Contacted the Minnesota Department of Human Rights. They took my information and got back to me within a couple of hours. They took a formal statement and informed me about the process. They said it was a clear case of discrimination based on disability. 

5) Contacted local news stations (KSTP, WCCO, and KARE) about the incident. I haven't heard back from any of them.

Tomorrow is another day. Since I got all these phone calls and conversations completed I can spend tomorrow doing fun stuff with the kids!

Mall of America and Disability awareness

Today I made a spur of the moment decision and took the kids to Nickelodeon Universe at the  Mall of America . For those who are new here, my three youngest kids, Angela 16, Axel 12 and Asher 7, all have Down syndrome.

Angela goes to NU all the time. She is a total adrenaline junkie and has ridden every ride there. The only things she doesn't do are the new ropes courses which are beyond her physical ability. She rides every roller coaster, every stomach-turning spinny ride, everything. She has no fear. She has been to Disney and ridden the Dueling Dragons, Men in Black Alien adventure, The Incredible Hulk, Space Mountain, and the Tower of Terror, just to name a few.  If there is such a thing, Angela is a ride pro.

What Angela does have a problem with is navigating the stairs that are often part of the ride queues. At Disney this wasn't an issues because we were there as part of her Make A Wish trip, so we went through the handicapped entrances. At our local amusement park, Valley Fair, she uses the handicapped entrances because standing in a crowd of people is difficult for her. Using that entrance she usually waits the same amount of time she would have in the queue,  just  off to the side and not in a mob of people.  (she doesn't like waiting at stop lights either, by the way!)

So at Nickelodeon Universe we went to the first ride. It's the little trucks and just the boys were going to ride. I went to the HC entrance and waited. The attendant asked to see my chaperone pass. "I need to see it so you can ride free." she said. "I don't want to ride. I just want to help them get on safely." She said ok, but encouraged me to get a pass for the other rides. The boys rode, had a good time, and then we headed to guest services for a chaperone pass.

The counter was really busy so the staff called a manager down to assist me. Here is the gist of the conversation:

Me: "I'd like a chaperone pass for my kids."

Manager: "For all of them? Do you have other chaperones with you?"

Me: "Well, I don't need to actually ride the rides with them, we just need to be able to use the HC entrance so I can assist them getting on/off the rides."

Manager: "For a chaperone pass you need to ride the rides with them."

Me: I pointed to Angela. "She doesn't need anyone to ride the rides with her, but doing the stairs for some of the rides, as well as standing in the crowd is difficult for her. She can wait as long as she needs to but needs to access the ride from the HC entrance."

Manager: "No, she cannot ride the rides alone. I don't feel comfortable allowing her to ride alone. She'll need a chaperone."

Me: "Umm what you don't know is she rides the rides all the time and is perfectly capable of getting on/off the ride herself, but she DOES need to use the HC entrance."

Manager: You're going to let her ride THAT? (pointing to a ride zooming past that goes upside down) by HERSELF?"

Me: "She rides it all the time!" (And really, what good is a chaperone going to do for her on that ride when they're hanging upside down?)

At that point the manager decided to call another manager down to help with the matter.

Manager 2: "She cannot ride the rides alone. If she cannot do the stairs then she cannot ride the rides without a chaperone."

Me: That doesn't make any sense. If that's the case, why does every ride have a ramp and handicapped entrance?"

At that point I turned to look at Angela, and saw Angela from the manager's perspective. A girl, who appeared around 10 years old, standing against the wall with her mouth hanging open and her stimming on a tread on  her sleeve. This person was making a judgement call based on Angela's appearance in that moment in time when she was bored out of her gourd listening to adults argue as to weather or not she could ride the rides alone.

The would be the part where I normally loose my cool. I will admit I almost did. I was so very close, and my hands were shaking, but I kept myself together.

Me: "Are you telling me that you, standing behind a desk seeing my kid for the first time, are going to determine what she is/is not able to do independently?" (Because really, for all this woman knew, Angela could have driven herself to the mall!!!!!) "I, as her mother have far more of an understanding what my child is capable of doing than you who is just meeting her for the first time. Never mind that she has ridden ALL OF THESE rides plenty of times, and the only reason you know about it now is because I came asking for a pass for ALL OF THEM to be able to use the HC entrance because I was told by a ride operator that's what I have to do. I have no idea how she's gotten through on the HC entrances before without any problem."

"Manager 2: "What if she were on (named a ride I don't recall) and for some reason the ride stopped in the middle of the tunnel. Would she be able, in pitch darkness, to exit the ride without assistance and walk, in the pitch darkness, out of the tunnel? That's scary for adults!"

Let me explain a bit. Angela is developmentally very much about 8 or 9 years old. Any 8 or 9 year old who is tall enough to ride that ride CAN DO JUST THAT! RIDE THE DAMN RIDE ALONE! There is nobody telling their parents they better be able to walk through a pitch dark tunnel and risk falling down a ledge because they can't follow the directions. How many ADULTS would freak out in exactly the same situation.

Me: "Ummm I am not stupid enough to think that there are not emergency lights in that tunnel, and that you would have ANY PATRON exiting the tunnel on a narrow sidewalk next to a drop off where the tracks are, in the pitch darkness, as that would be a law suit waiting to happen."

Manager 2: "Well it has happened. In fact we tell all riders that if a child is afraid to get on a ride then they should not ride it at all because if they're afraid of that, an emergency situation would be far worse."

Me: "You know, I've been coming to this park for a long time. Never have I stood in line and heard, "All riders must be 42 inches to ride the ride, and must be able to exit the ride without assistance in pitch dark in the tunnel should it break down."

This is just the gist of the conversation that lasted nearly 25 minutes. In the end I asked for a refund of the ride points I'd already purchased while the woman continued to explain to me why it was bad for me to let Angela ride any of the rides independently. At some point I asked the manager to guess Angela's age for me. She thought 10 or 11. "That there shows how poor your judgement is in making this call. She is 16. You're looking at her for 3 minutes deciding she can't ride a ride when you haven't seen her doing anything other than lean on that wall."

So the boys rode their ride, and in front of the manager I told Angela, "I'm sorry. This lady says you can't ride the rides. We'll have to go home now." We got our refund and left.

Grrrr

So on the way home I called one of our caregivers to get her opinion. She often takes Angela to such venues and she agreed that Angela is perfectly capable or riding the rides independently.

My next stop was the NU website. Their rider safety information states:

BASIC RIde INfoRMAtIoN
In order to ride independently, a rider must have:

• the ability to exhibit seated postural control
  under dynamic conditions of the ride
  
• appropriate center of gravity, control of
  upper torso including neck and head, ability to hold on with one functioning arm, ability to brace self with one functioning leg
  
• minimum two or three functioning extremities
  
• ability to enter/exit ride within specified
  parameters without endangering self or others and mental capacity to be aware of the hazards, to self or others, of failure to ride in prescribed manner
  
  entry through the special access entrance should be limited to the guests requiring the access
  and up to three escorts. Additional members
  in your party should enter the ride through the standard entrance and join the guest and escorts at the loading area. Special access entrances are intended to accommodate guests needing special assistance and not to bypass others waiting in line.
  
  
  
  

According to the parameters determined by the powers that be at Nickelodeon Universe, Angela should be able to ride independently, and she should be able to access the the special access entrance that is available on every ride. 

So what would you do next?