I felt the need to change the title of the blog to #ItsJustSocks (I crack myself up) Also in honor of this blog, Mari added a raffle to her crowdrise goal Mari's Mudder-39 Reasons.
Jonah and I are spending the entire month of July in Oregon. If you’re thinking it’s a good opportunity to bust into our place, you should know we don’t even have a tv to steal.
We have to make it to San Diego the day after Jonah’s B.day for the International MPS society meeting. When I was booking our trip to OR-JFK & JFK-SD I realized what a waist of time and money to fly to the west coast twice in one month. I had already been thinking about Jonah’s 10th Bday on the 30th and what it was we were going to do. Jonah doesn’t have any besties. The intellectual gap between Jonah and children his age is too large to ignore for most children.
The last playdate we had with a boy Jonah’s age was heartbreaking. Our guest told me that Jonah was annoying him and he wanted to go home. The playground is really hard for me. It’s tough watching him attempt to verbally interact with kids his age.
The playground. The worst time to go to the playground is before ten o’clock. That’s when the new parents are there with their toddlers. Now that we don’t have a t.v. Jonah starts asking to go to the playground right after breakfast. Since Jeremy has been on hiatus he has been on playground duty. This particular Saturday morning Jeremy was slow to rise, Jonah was already in his non-stop repetitive state: “Can we go to the playground?” “ “Can we go to the playground?” “ “Can we go to the playground?” “Can we go to the playground?” “ “Can we go to the playground?” “ “Can we go to the playground?” ““Can we go to the playground?” “
To save myself from the repetition I took him. I wore my printed ‘fuck off’ gym sox. The playground was already peppered with at least 15 toddlers at various stages of growth. They’re mommies and daddies, huddled around in little puddles, some had a new baby hanging from their chests snuggled in it’s Baby Bjorn. I felt guilty and rolled down my fuck off sox.
Jonah surveyed the situation, looking for kids that could run and play tag with him. He settled on two boys probably six or pushing seven years old. The boys were tied at the hip, Jonah was an outsider, he had to work hard at breaking the ice and into their activities. Persistence, Jonah is good at that, he got them to play tag with him. When the other boys tired and ran back to their mothers Jonah followed. I sat across the playground from one of the mothers, never saw the other mom.
Like a bird watcher, I kept my distance and just watched the interaction. Jonah sat next to the mom, he didn’t sit right next to her, he perched himself up on the back of the bench, so his feet were next to her. He sat there and watched the boys play, he talked to her. I have no idea what Jonah said, he says random things to break the ice. He probably told her that we got new fish or that he was going to go see his grandma tomorrow.
I could see that things were going south for Jonah, the boys kept running away from him and huddled together. I went to check in. The boys didn’t want to play tag with Jonah anymore; Jonah was irked with them. The boys didn’t understand why Jonah couldn’t switch gears and play something else. I tried to get Jonah to go home. Instead he came and sat with me for awhile, after he regrouped he ran out to play with the boys again. A bit of time passed and one of the kids came up to me and said: “Your son told my friend Dustin that he was stupid.”
Really? I questioned the kid, I didn’t think the kid was lying. My heart leaped, that’s great I thought Jonah used stupid in the right context. I have heard Jonah say stupid once or twice in his lifetime. I placated the kid with all the things a mother is supposed to say at these times. A few minutes later Dustin’s mom paid me a visit. She echoed the same thing as Dustin’s BFF and added: “I’m trying to teach Dustin to stand-up for himself.”
I stared at her, trying not to laugh, and wishing I had not rolled down my fuck off sox. Seriously, was she standing here telling me that she’s trying to get her son to stand up for himself and to fight his own battles?
I thought for a second, maybe Dustin was special needs too? Why else be so offended that Jonah called Dustin stupid? I’m assuming the reason why Jonah was able to use stupid in the correct context is because he gets called stupid by a peer on a daily basis. Imagine that lady.
Again I said the things a mom is supposed to say in this situation. It’s just polite playground politics, I know it can happen to anybody. Jonah came over and sat down. He wasn’t in the least bit interested in telling Dustin that he was sorry. Jonah was obtuse, he figured he was in the right. I leaned back so that Jonah couldn’t hear me and I said to the mom: ”Jonah has brain damage, he doesn’t know how to act when someone else is mad at him. He doesn’t have that level of social skills.”
Her response: “I guess there is something to be said for having brain damage, your feelings don’t get hurt.”
Pin that for a second. Here is this mom coming over to tell me that my son called her son stupid. I had hoped that the women was astute enough to realize that Jonah was special needs when he sat by her and talked to her. I purposely put an MPS awareness t-shirt on Jonah that morning, for this exact situation. I couldn't get him to wear his hearing aides.
I played out like I cared and reprimanded Jonah, Jonah mumbled I’m sorry and gave Dustin a half-assed wave. The mom stood and stared at Jonah, contemplating. Jonah was expressionless, picking his nails, staring across the playground. Probably thinking who else is here that I can play with. I couldn’t tell if she thought Jonah was evil or if she just couldn’t believe that this normal looking kid had brain damage. Maybe it occurred to her that she had just stuck her foot in her mouth. They left.
If Jonah ever hit another child or ripped something out of his hand in aggression, I’d take it seriously and deal with it accordingly. So Jonah called the kid stupid, it’s not like he told him to fuck off. Did she ever stop to think why Jonah might have called her child stupid? Maybe her sensitive son, hurt Jonah’s feelings?
When Jonah is at the playground he is the happiest. His smile radiates his laughter bounces around the playground, that glee is what gets Jeremy and I through the worst of times.
Jonah doesn’t get invited to Birthday parties anymore, not that kids don’t like him, they just don’t have much in common. I don’t think he notices if he does he gets over it fast. He loves his Bday parties almost as much as he loves the playground. I’m relieved that we will be spending his Bday in Oregon with family.
Family. We have two families, a biological family and our MPS family. It is very rare to meet someone not in the Sanfilippo tribe that understands what it’s like to know your child is going to die before you. You want to be with those people the same way you want to be with your own family.
I’m sure it’s the same for any type of thing that makes you feel different in some way.
Suicide is another tribe that you don’t want to belong to if you can help it. On Fathers Day I attended a ‘celebration of life memorial’ for a man from my neighborhood. I didn’t know Muli well, but I had gotten to know his wife over the years and I adore her. Muli left behind two little girls around Jonah’s age, they went to the same school.
As a daughter of a man that also committed suicide, I thought fathers day was the perfect day to have a celebration of life party. A mom and two young daughters surrounded by their cousins and friends and adults that all loved and honored their dad. The guests gave tributes, those from far away recorded tributes in Hebrew. A performer danced out one of Muli’s musical pieces, singing, laughs and tears. The kids ran around the ballroom as quietly as they could. Two barely one year old babies sat on the floor next to me. I watched them while Muli’s guests paid tribute in Hebrew, little weeble-wobble’s pushing colorful wood circles and squares around coated wire. So excited they drooled. I wanted to stick a straw in one of them and suck my way back to the beginning of life.
The party was held in the ballroom at Muli and Zippi’s temple. They were both raised in Israel, I recon that makes their daughter’s first generation Americans. I was surprised that there were not as many parents from my neighborhood in attendance. At his services (held two days after Muli’s death) the temple was packed with our close neighbors and school parents. I admit when the ballroom filled up and I realized I was one of three people that were not Jewish, I thought that maybe I wasn’t supposed to be there. My insecurities were on me, my attendance was accepted and appreciated. One of the organizers of the celebration assumed it was because it was fathers day in America. I’m not so sure of that. I’m oblivious to religious and cultural differences, I guess there is something to be said about being stupid.
So don’t laugh at me. I belong to a facebook and IM group for those that play PokemonGo in my hood. I got into the game because of Mission Hide and Help. I stuck with it because it’s fun. I like collecting the ‘virtual’ characters. It’s like any other collection, except this collection doesn’t sit on your windowsill collecting dust. My neighborhood Pokemon group sends out instant messages for a time and place to meet for a ‘raid’. People that can make it respond yes or no. This group is mostly made up of young adults from all different cultures, from China to Columbia and all spots between. When I show up to the meeting spot my fellow PokemonGo friends scoot on down the curb to make room for me. I’m thankful that they welcomed this old white lady into their tribe.
Speaking of multi-culti friends (inside joke) JJB’s very own Mari is participating in a Mudder. Yes, Mari might be stupid, but her heart is definitely in the right place. Please cheer her on. Go here.
Mari's Mudder
Kind Regards,
Jill
