Every year, a local branch of the Embassy Suites hotel chain throws a Halloween event for the kids in Max’s school. They go all out—they pick up the kids by shuttle van, decorate different rooms where costumed staffers hand out candy, offer a great buffet lunch and also have a room with pumpkins for the kids and tables where they can color.
I am always so floored by the kindness and generosity of the Embassy Suites people. Whenever I go to events like this for Max, I feel so grateful. But I also find them sobering. Because they make me realize that I am a parent with a child who benefits from the kindness of others. And I don’t like feeling like a “good cause.”
If I had to analyze my feelings, I’d say that I’ve gotten to a place in my life where I no longer feel sorry for myself for having a kid with special needs. I don’t feel sorry for Max, either. He’s adorable, he’s doing well and he’s so happy. I long ago stopped mourning the child Max could have been, and accept Max for who he is. But when I go to events for kids with special needs, I get acutely aware that I am One Of Those Parents with One Of Those Kids.
Do you know what I mean?
Ellen blogs daily at To The Max
Yeah I do.
((hugs)))
these good causes..we need them sometimes.
My gf just lost her precious beloved little girl at age 12..because of these “causes” this little girl touched so many people, she probably wouldn’thave other wise. I know you don’t feel like it..but Max..he will benefit
I am very aware I am a parent with “one of those kids” and I’m damn proud!
I totally get what you are saying and I completely struggle with accepting this kindness at times. Like the day the people at the mall gave us a free ride on the carousel. It was fun. We enjoyed it but I almost opened a can of well I was not as nice as I should have been to the people that gave us the free ride.
Big time.
In my community, the high school kids have a requirement to do a certain number of community service hours each year. I can’t tell you what it was like to make the call to get help from those kids.
But I did it, and now I feel like I’m part of something larger. The girls who come to help out also gain from what they’re doing. I’ve watched several of them grow up during the years they came by, and at least one mother has thanked me, because of the good that coming to my house and teaching my son has done for her daughter.
So it’s a two way street, a partnership. And that’s the world. I find that usually there’s another context in which you’re on the other side, and it all evens out.
I always tell folks that I’m not any busier than they are. Some of the differences are that I don’t have as much flexibility and Luke can’t handle life the same way a “typical” 7-year-old can. (I hate it when people tell me I must be so busy). That said, the lack of flexability in my (and your?) life, makes it hard to plan and do some of those things the “Martha Stewarts” of this world do for/with thier families. I think this is what you had – the opportunity to enjoy some things other families can just do, but you didn’t have to plan or clean-up. It was a nice gift. Not a handout, not charity, but a nice gift for you and your family.
Now I just need to figure out how to get plugged into such things.
Absolutely! I know what you mean!
I do know what you mean.
I am right there with you. The kindness helps cancel out the stares and the ignorance for me. I do wish people would stop saying, “I just don’t know how you do it.” Addison is the easiest part of the journey. The appointments, insurance issues, bills, phone calls, and always always fighting for something are the hard part.
So just enjoy the good stuff…it’s okay!
I am a retired special education teacher. On K-6 principal I worked for was great and really got it. He told all staff that a goal for the year was as much inclusion as worked to benefit everyone. Each of my SDC students had a “buddy class” that he/she shared assemblies with, parties, field trips, art, PE. My students would ask, “Can I do XYZ with my “other” class?” Like he was in two sections of 6th grade. Likewise well picked kids from buddy classes would come to my room for art and interaction. 5th graders caught on real fast.
Moms with no kids in my class of 4-6th grade would come in and do a special project. I’s was proactive and would ask moms to help. Usually they did and almost always told me they got so much out of it.
I say relax about feeling patronized as much as you can. And when people are natural and casual with your son, thank them for their attitude and mention, “Sometimes well meaning people pity my son. That’s not good.”
SF Bay Area
Thanks for that good advice, Steve. And thanks for relating, everyone else!