Through the Cracks

There is definitely something wrong in a society when people with disabled children have to choose between paying their rent or paying for the care of their child. I have a couple of friends in this catch-22. Technically, so are we, but we manage to bring in enough to not have such a touch choice. The people I know really caught in this crack are children with very severe disabilities, where the children require a lot of medical care and equipment as well as therapies and other specialized care. The way the system works, they can't make any more money- one parent needs to be home for the child(ren), and if they make over a certain income, their children lose important medical support and services, such as Medicaid or Social Security. Parents self-train because they cannot afford nursing or to hire care, some have to homeschool because the special education system takes too long to fix serious issues that threaten the health and education of the child who is already severely challenged and endangered. Respite care costs money. Wheelchairs cost money. Alternative communication costs money.

I certainly understand reserving government assistance for the neediest families. The problem is that no one in the private sector picks up the slack. The system is made is actually create needy families. It becomes a vicious cycle for families who make too much to qualify for assistance, but not enough to pay for both household expenses and therapy. What happens to them? They have to move back in with their parents, if they have that resource. They have to quit jobs to qualify for the assistance, instead of continuing to support themselves as much as they can and stay off other assistance programs, just getting the assistance they actually need. They drain any saving they have, trying to keep their children off those same assistance programs as much as they can. They spend their days being nurses, caretakers, lawyers, advocates, social workers, coordinators, therapists, educators... because no one can afford all of these services, and yet they are all needed because of the way our society views and treats people with disabilities and their families. Even with families who step up to the plate, no one wins a game on their own.

The attitude of the general public seems to be "sucks to be you." The idea that someone might need assistance means that person is somehow less, somehow a parasite. How very Victorian of them. Instead of being grateful for good fortune, opportunity, and talents, too many in society are spiteful. We need to advance as a society, and look at the basic ideas that move societies beyond the every-man-for-himself attitudes of might makes right: that we are all in this together, and none of us make it out alive. When we stick together, and support each other, everyone's needs can be met and everyone can contribute. Everyone has talents and challenges, and we can all do the best we can if we all help, and don't leave anyone shouldering their lot alone. We can't just assume those who need help are somehow not as good as those who have the opportunities to not be in need. You'd be amazed how quickly those tides can be turned, and the one who thought themselves self-sufficient suddenly and unexpected becomes one in need.

It's a simple rule, folks. Treat others as you would wish to be treated. And it works wonderfully well.

Changing the Rules

Well, the short of it is Joey was totally awesome. He stuck it out, spelled his words, and would have won the whole thing if they didn't change the rules for the last round. But, they change the rules for the last round, so he wasn't the Grand Champion. He totally, totally rocked the house.

The long story... well, it was one of those experiences that have ups and downs and odd moments and great moments. This was the third grade spelling bee, so all the third grade came to watch it, and most of the parents of the kids actually in it- 24 of them (two from each class). For their "practice round", each child stood and spelled their name. Most of the kids got up, precisely spelled their name, and sat down. Joey did this Joey Style, which was a lot more fun, with a lot more awesomeness. He got up there with enthusiasm and relish.

And then the whole room laughed. Most of the parents laughed because, hey, he was cute. But the laughter from the kids, that was different. You could tell by the little undertow of jeer and imitation, that there were an awful lot of those kids laughing at him, not with him. All the talk about teaching kids about diversity, about respect, about creating supportive environments... these are the kids Joey had to deal with all summer, or the ones that didn't know him at all. Some of the parents, who didn't know me from a turnip, whispered something about wondering why "that kid" was up there. I knew they wouldn't be saying such things an hour from then.

By the time Joey was the only one to spell his word correctly of the final four, those cheers were for him, not at him.

But in the final round of a spelling bee, the rules change. When you spell your word correctly, but everyone else does not, you then have to spell another word, or everyone else gets to come back and have another round. Unfortunately, Joey's word was "dignified," and he mis-spelled it completely (it was not a word he had seen before, it's not on the spelling word lists). Everyone got to come back, and this time, he was discombobulated enough to mis-spell the next word ("salute"), so he was out. The two kids who went on? They both mis-spelled their next words, before finally the one child spelled two words correctly in a row and was proclaimed the winner.

Joey was a little upset, but I brought a prize to reward him for even trying the bee. He ran at first, saying he was a loser, that he lost. Mrs. C got down and looked him right in the eye and told him that he was winner, that he was the best speller in the class, reminded him that he had spelled the words correctly when everyone else had missed theirs, and told him how proud she was of him. We sat with the other bee contestants and let him have his present, and all those kids were cheering him and saying things like, "you know you really won, Joey- you were the first winner!" and telling him how great he was. And his class? They lined up and everyone insisted on giving him a high-five, and cheering.

Parents stopped me in the lobby and the parking lot to say, "To us, he was the real winner! He was the one who really won that spelling bee!" If nothing else, he earned his respect, and showed a lot of his peers (and their parents) that he was no pity participant, but a true contestant; one who had, by all rights of the rules of the majority of the game, won. He showed them what true diversity means. We all have strengths. And it is awesome to be unique.

Preparing for the Bee

Joey is going to be in the third grade spelling bee tomorrow. We're really excited. He was in the first grade bee, but we had some miscommunications about his needs, and he got over-frustrated and threw it in the fifth round. The memory made him anxious enough that he purposely threw the classroom bee last year, so he didn't get to be in the second grade bee. So the fact that he's decided to give it another go, that's a big deal- especially with all the anxiety he's had this year. Seriously. Wow.

So I've been trying to help him prepare. Most kids, when they prepare for a spelling bee, practice- well, spelling. Not us. We practice things like sitting, listening, facing a person who is speaking to you. We talked about getting a prize if he spells all the words right. But mostly, he looks at me like I'm insane; you can almost read in his face: "It's spelling, mom. What's the big deal? What's to practice?"

This afternoon, he actually came home excited about it, saying, "My spelling show is tomorrow!" So I managed to say, "That's right! I bet you win it!" He blinked, and gave me one his processing looks, then happily cheered, "Yes! I will win!"

I think he is just now realizing it is a game, and that there is a "winning." I think I might just get something to bring with me tomorrow as a prize, whether he wins or not. Because seriously, he's already a winner for giving it another try.

In Which Momma Realizes Her Boys Aren't Babies Anymore

Though they will always be MY babies.

I tend to do spring cleaning during January. We're not in the middle ages anymore, after all. You get things done when you have a minute to get things done. This year, I am tackling the boys' rooms. We have a bad habit of tossing all the toys the boys have brought downstairs into big bins every couple of weeks, and then sticking those bins upstairs where-ever there is free space, and then they just sit there and the boys pull out the toys they want from them and leave the rest in a jumbled bin in the floor. The floorspace is getting filled up, and the boys are getting older. It was time.

I have been pecking at i, rather than sitting to it all at once. I sort the toys into Actively Played With Toys, Toys to Go to the Basement, and Baby Toys to Donate. I cleared Andy's closet of baby blankets and oddments so he can use it for his own things. The last of the Baby Stuff is being swept away.

When I was pregnant, my mom warned me that babies grow up, and they grow up fast. I knew it would be a blink of an eye. I had no idea how fast eyes can blink. I remind myself that Joey is actually growing up slower than most children, and it makes me want to hug moms everywhere, who have their children grow up faster than anyone can ever imagine.

My baby was reading my squirrel post yesterday, and he noticed my avatar icon. "Why you have your hand up there, Mom?" he laughed. I told him it was Uma. He didn't remember Oobi. It was his favorite show. So fast. So fast.

I took the old art down from his closet door. The closet door is coming off; Andy's room is quite small, and that little extra floor space will actually be a big improvement. I put the old drawings and pastings in a little box. There a cow, and a spider, and a sheet of dinosaur stickers that were rewards for training that he adored. He wants Star Wars posters now.

I put Joey's Toy Story toys in one bin in his room. I sorted out the Cars toys, but I am wondering if they go in the Basement pile or the Donate pile. Cars with eyes are apparently for little kids. What does Joey play with? Play for Joey is not usually like other kids. He likes wooden spoons, writing tablets, and sticks better than dolls or toys. But then, he and Andy played Toy Story all day yesterday, with his Woody and Buzz. Scripted pretend play is still pretend play. I leave the Cars stuff a little longer; Andy might still want to play with them, and having him go into Joey's room to get them may encourage him to engage Joey in the play. Good for both of them.

The Fisher Price bus? Donate. It's a wrench to put a bus in the donate box, as Joey loves buses. However, it is not Bus. It is a baby toy, a toddler toy, and it is still in decent shape. He hasn't played with it in ages. He's more into space stuff now. It is time to move on.

My babies just aren't babies anymore.