Saturday was the last soccer game of the season for the boy (and girl). Last game of the season and the coach tried a new tactic – Demetrius could play as long as he wanted, and playing basically a player short wouldn’t penalize the team. This is what playing a team previously will do – the coaches of the other team remembered Demetrius, and how basically harmless he is to the flow of the game. So Demetrius wandered on and off the field at will. Now, he stayed on the field most of the game, because one of the team dads told him that if he got the ball and scored a goal that he could eat all the donuts he wanted after the game (donut party after the last game of the season).
Well, he didn’t score a goal, and he really didn’t mix it up, but he did try to kick the ball once that bounced to him and he was a bit more engaged than he usually is on the field. A couple of the boys tried to get him to run up and down the field with him, and he ran along with them. Donuts, clearly, are the right motivation for this child. Now we know. ☺
After the game, at the party, many of the parents walked up to us and said some great things. The kind that makes wives cry and dads work to keep from welling up.
“We are impressed at how hard you two worked with Demetrius to keep him involved with this. That was great to see (one even told Kim that it bordered on inspirational in a daily live sort of way).”
“Our son hasn’t been around special needs kids and was a bit scared when Demetrius would talk to himself, and now he sees Demetrius is just another kid, but a bit different. That’s great for us, thank you.”
“It seems that Demetrius had fun. I’m glad he played on the team. Will he be playing with us next season?”
Daddy (after reading to Demetrius and talking in bed): Demetrius, did you have fun playing soccer?
Demetrius: Yes, I had fun.
Daddy: Do you want to play soccer again, or do you want to play baseball (Miracle League) again?
Demetrius thinks for a minute (he’s also a bit tired)…
Demetrius: I want to play soccer again, they are my friends.
Demetrius, sometimes your very direct responses are all that ever need to be said.
While he says he enjoys it, we know to a certain level it is incredibly stressful for him. When we go to Maya’s games he runs as far as possible from the field and the cheering parents. He’s better with his headphones, but still…
And he threw up in bed Saturday night, but he did have a donut and pizza party and there were a lot of hands over the ears and twirling of the hair…so a stressful day. What’s the balance here? Hard to say for this kid….
Kim had a show yesterday for some of her artwork, so I took the kids to their church school classes. This in and of itself isn’t worth blogging about, but one of the things that really get me down is when I meet people for the first time is their comments to me about Demetrius. ESPECIALLY WHEN THEY ARE TRYING TO BE POSITIVE.
First, I should say I’m not the church going type. I’m a big cynic about organized religion, among other things…. but this isn’t a blog to discuss that subject. So I’m not heading to church with Kim and the kids on Sunday mornings. It’s not like that famous Norman Rockwell picture (I’m usually doing the yard work then), but we have a détente in the house in regards to this choice of mine.
So yesterday morning I meet a number of parents who either know Kim from her activities, have kids in activities with our kids or meet the church school class teachers for the first time. I shake hands and introduce myself. Or they see us in the hall and come up and introduce themselves. Let me state emphatically here that they are all gracious and positive. However, this is one of those wide gulf things between the world we live in and the one they live in.
Parent/Teacher: Hello Mr. Grasso, I’m XXXXX.
Me: Nice to meet you, I’m Jerry Grasso.
Parent/Teacher: We are so glad Demetrius is in our XXXXX, he’s a great kid and he did really good today. He paid attention and even answered some questions. We are so glad he’s here.
Me: That’s great! He loves the XXXXX, thank you for the feedback and kind words.
We each go on our ways. I try to be tough, but in my quiet moments I stew, seethe or just get depressed about these conversations.
The conversation follows a path about this child’s differences. It is pointed out that he is a ‘good’ ‘sweet’ or ‘great’ kid. I know this. Why are you telling me this? Why are you making an emphatic point of this? What do you think when you first meet him, or find out he’s autistic or when he does something ‘weird’? You have fears about him, don’t you?
I think most adults give kids the benefit of the doubt, that they are good kids until proven differently. However, they don’t know what to expect with special needs kids, therefore, it seems to me, that this is a pleasant surprise with Demetrius’ demeanor. It needs to be pointed out – to me, his dad. I wouldn’t make a big deal about it except this is almost NEVER the case when I meet parents for the first time who interact with Maya.
“He did really good today” is a staple statement in the life of Demetrius. Also, I don’t prompt it, it is simply offered to me (minus school/therapies where we need this for the obvious reasons). What is the assumption here? That he is going to sit and stare at the wall and drool on the table? Granted, some days it seems this way, but the kid just needs a bit of help and he’ll do the best he can at everything he tries. No different than any other little boy or girl.
I know some of this is a confidence issue on their part. They’re volunteers and certainly giving the best effort to work with this child, and not trained to be a special needs educator in any shape or form. If I just got this randomly, once in awhile, I probably wouldn’t react this way to it, but since I get it every time he’s in a new situation or I meet someone for the first time…. well, it’s a bit of a burden isn’t it.
The burden? The burden that there is something wrong that has to be proven to be either minimized or disproved in his behavior and actions. That special needs kids do really badly, versus really good, most of the time? We know that’s not the case, but the barriers between the neuro-typcials and the special needs families here are often so clear that they are more than figurative or just the elephant in the room. They truly exist in the very first statements people utter to you, the parent of the special needs child.
It also makes me worry for the boy. Does he feel like he’s being treated differently? Or is this something that, unfortunately, is just the way it is in his life, so he’s accepted it and doesn’t even recognize it? I wonder.