Special Needs Families - We know about being excluded. It happens. Although it's best if our kids can be included as much as possible, it's not always possible. But what some people don't realize is that it's not an all-or-nothing situation. There are ways that you can make exclusion hurt less. I'm drawing on my own experiences as well as those from other blogging autism parents here. There are many times when someone is excluded from an event or activity and there were little things that could have made it easier.
Assess the situation before it is a last minute catastrophe
When Naomi was in first grade we got a notice from the school announcing that her class would be in a singing and dancing performance. The note strongly stated that this was part of their program and it was NOT optional. My husband and I looked at each other and said "Naomi is going to be singing and dancing? Okay... I guess if they think she's up for it." The thing was, she wasn't up for it. And when did the teacher decide to tell me? Approximately 2 hours before the show. Yes, I had been prepping Naomi with social stories and the like for the past week, my husband made special arrangements to get home early so he could see the performance and I had just assured the little girl that would be Naomi's partner that she would definitely be at the performance. But the teacher decided to wait until the last minute to basically tell me that if Naomi participated, the entire thing would be ruined for everyone. Nice timing Ms. First Grade!
Give them their money back
If you have to throw someone out, be decent enough to give them their money back.
When I signed Naomi up for a special needs dance class they made it clear that there would be NO REFUNDS for recital fees or costumes and they would have to be paid up front. And to be fair, I agreed. But we only lasted in that class 3 weeks. We weren't officially thrown out, but the teacher made it clear that Naomi was being unacceptably disruptive and things weren't getting better. The recital wouldn't be for another 9 months, but we had to pay 100% of the costume and recital fees. No exceptions. When I asked to at least get the costume, since we had paid for it, they told me that I would have to pay another $15 for alterations. - No, the fact that I was willing to take the costume without alterations didn't exempt me from the alteration fee. The message was - "Either pay an additional $15 or we'll just pocket the $50 you already paid for the costume Naomi will never wear + $75 the recital fees." Not cool.
Invite them to other events When Naomi was dismissed from a theater group, I spoke to the organizer and told her I understood. I didn't ask for my money back and it wasn't offered. But I did ask for one thing. "Make sure you let us know when the final performance is and save us a couple of tickets!" (Tickets were free.) Well, the time came around for the final performance and I didn't hear from the organizer. I emailed her and asked for the dates and a couple of tickets. When she responded she told me that there were no tickets left and she needed to reserve some tickets for the program's sponsors. (I resisted telling her that since we paid for the program that Naomi was kicked out of we became 'sponsors') There were multiple night that they were performing. Under the circumstances, was reserving a couple of tickets really be an impossible courtesy?
Don't make us do extra paperwork Special needs parents have paperwork up to their eyeballs! We don't need any more! Often when I see a study or an activity for kids with autism, I call up and ask " My daughter has very limited verbal skills and she doesn't follow directions well, is this a program that would work for her?" The response quite frequently is "Fill out the paperwork and we'll look it over." NO! How is writing our name, address, social security number and 3 emergency contacts going to help you assess this? Yes, there are 3 questions at the end of 8 pages of paperwork that will help you make a good assessment, but if you can figure it out, over the phone by the information I am giving you, please, don't make me do more paperwork just to find out we are once again excluded.
Let them know what is going on - Just because we're not invited to the party, don't avoid telling us there is a party. When there is a class field trip that a special needs student is excluded from - for whatever reason - safety, staffing, transportation - tell the student and the family about the field trip anyway. Maybe some kind of arrangement can be worked out. Even if there is no working around it, there is nothing worse than finding out about an event that you've been excluded from after it happens. It's just inconsiderate. When there is a therapy workshop or activity that a family has signed up to be a part of, don't just exclude them by omission. Let them know! Otherwise you have the family waiting and waiting to hear from you.... Only to find out the activity has come and gone and for whatever reason the kid wasn't given a slot. This feels awful. A quick email that says there weren't enough spots for everyone and thus some people wouldn't be able to participate would have made it suck far less.
Define what 'special needs' kids the event will be serving. Before the family arranges for child care and drives across town, to attend an information fair for '"Lots of Programs and Activities for Special Needs Kids" let them know if this is an event with their children in mind. If all of the activities are for children who require some level of independence or a 4:1 student supervisor ratio note that on the flyer. If the family puts all their time and energy into going to an event that excludes their children, the family goes home despondent. Do don't fill our families with hope, just so we can be excluded.
Try to offer them something - Little things mean a lot. When overnight camp didn't work out for my daughter, (because she didn't sleep) we asked if she could attend up until bed time. We said we'd could pick her up between 10pm and 11pm. NOPE! This camp was offered to give the parents overnight, so if that didn't work, Naomi couldn't participate. They couldn't explain why not, nor offer us any alternatives.
On the positive side, there are lots of wonderful accommodations that we see in the community. One of the best ones is Sensory Performances in the theater. There are also churches that give sensory services, sports events, as special needs proms that find ways to include our kids. This is a growing practice and I am grateful for it!
Check in on them and see how they are doing This one just says "You matter". So often once we are excluded, it's as if we never existed. Luckily, I have a positive story for this one. We had a respite provider last summer. She saw Naomi at her very worst. Things were so bad it wasn't really safe to leave Naomi alone with her. The fact that she didn't quit was a miracle in itself, but even better, after she went off to college she checked in every once in awhile to see how things were. She helped us solicit funding for more support by writing a letter to the county of Developmental Disabilities. This meant so much to me. It was so helpful to just be able to tell her that Naomi was doing much better and the Naomi she saw last summer was not the Naomi she would see today.
Make sure the exclusion is really necessary
Sometimes exclusion is necessary; often it's not. Let's not forget that the American's with Disabilities Act states that "reasonable accommodations" are required for a disabled person. So you can't just exclude some one because you'd rather they weren't part of the program. The library had a "Read to a Therapy Dog" program and I signed Naomi up. They told me that she couldn't take part because she couldn't read independently. She had some reading skills, but I would need to be by her side to help and make sure she was well behaved. They thought that was good enough reason to exclude her. Obviously, allowing me to join her was more than 'reasonable' but I had to fight for it. Would it really have been so difficult to say "Okay." would the dog really mind?
When Naomi was at the local school, they wouldn't even let her participate in recess with other kids. They couldn't give me a reason other than, "She just couldn't control herself and would always run away to grab the assistant teacher's hand." This was a lame excuse for such extreme isolation. Did she ever do something that would upset the other kids or even try to hold another kid's hand? Nope! Again, unnecessary exclusion should not happen.
So, I will repeat - I understand that exclusion is sometimes necessary. BUT - there are ways to make it hurt less. I hope the community can put some of these things into practice.