Marcus

Marcus

Hello, adoring fans <–Josh wrote that part. I would never be so vain.

I hope you find yourself well this fine, frickin’ freezing day. Are you well? Text me about it.

As you probably know, Joshua started the Marcus Autism Center’s feeding program this week. A few of you have asked questions about why he goes and what he does there. As always, I live to serve each and every one of you, so here is the Official Marcus Autism Center FAQ By Kristen And Not The Actual Center – OMACFAQBKANTAC for short.

Why do we go? 

Josh struggles with eating in a major way. He’s very underweight and has a hard time gaining any weight. May we all be so lucky, amirite? I kid, I kid; it’s fairly terrible. So this feeding program basically teaches kids how to eat better. Every kid’s experience is different, but the goal for every child who attends is to improve their eating skills in the way they need it most.

What do they do there? 

Josh’s main goal is weight gain, so they are working to increase both the variety and volume of table foods he will eat. Every patient has a schedule – it starts with 40 minutes for breakfast, then a 40 minute break; 40 minutes for snack/oral motor therapy, then another 40 minute break; 40 minutes for lunch, then a long two-hour break; 40 minutes for “dinner,” which is what they call it but it happens at 2:30 for us.

During the 40 minute sessions, Josh tries small bites of each of the four foods they have. They try to incorporate foods he likes alongside foods he resists, i.e., all fruits and vegetables ever. They give him a spoon with a tiny bite of whatever he is eating (it’s diced up into super tiny portions), and they let him feed himself. After he does that, he gets several seconds to chew and swallow, and then several more seconds before the next food is presented. They use a fairly rigid routine and verbal cues to prompt him to eat; in between bites, the therapists get silly with him and will sing songs or play little games at the table. He rotates through each of the types of food several times in one session, and they record how long it takes him, if he chews and swallows it all, if it makes him gag, and a whole bunch of other little squares that they fill in. They must have a huge spreadsheet budget at this place.

When he gets a break, we head to the main playroom. He likes the toys in there and he made a friend today! They also have a playground (we tried that yesterday and instantly froze to death; I’m actually writing this from heaven) and a family lounge where we can eat. He gets his own nap room, and today we spent some time in there so he could have a little rest.

What do you do the whole time, Beautiful and Amazing Kristen? 

Oh, stop. (But go on.) I can observe Josh during his sessions, so I have been watching those. I sit behind a two-way mirror so he can’t see me, but I can see and hear him. During the breaks, I just follow Joshua around until he stops to play. Much like every other day of my life.

Don’t you have a second kid? 

I do! Jenna is being a trooper and will either be with me, my mom, my very sweet neighbor, or a fire station of my choosing. She is allowed to come, but I don’t want her to have to spend all day down there too often, plus she has school twice a week, so we’ve worked out a little schedule for my little girl. The schedule has significantly fewer sparkles than the girl.

How long will this last? 

This is an eight-week program, and we are there Monday – Friday, 8:45 – 3:15. In Atlanta time, this means 7:00-4:00, but the day goes by a little faster since it’s broken up into blocks. I don’t think we run into any holidays during our time there but I’m pretty sure they have therapy basically every day but Christmas.

 

Why does it matter if he eats and/or gains weight? Plenty of kids are small for their age. 

Josh has cerebral palsy, and his muscle tone is all wacky. He needs to gain weight and strength and muscle tone to keep up with the demands his body makes for physical activities. A walk around the block is a much bigger effort for Joshua than the average bear. So he needs to get stronger, and this is the way to help him do that.

Cool? Cool. See my secretary with questions.

josh-hospital
I mustache you a question…but I’m shaving it for later. 
On Your Fourth Birthday

On Your Fourth Birthday

Dear Joshua,

Happy birthday, big boy! Four is a legit big boy age. I know you’re about 78 on the inside, but four seems pretty old, too!

This year has been huge for you, dude. You have accomplished so much. You can walk on your tippy toes now, and you are rocking the scissor crafts! Bumpy slides, climbing stairs, and riding the therapy peanut have been no match for you as you master them all!

Of course, I think we can all agree that one of the biggest skills you’ve developed is your speech. Joshua, I love you. And you are the chattiest person I know. You ask me what we’re doing, where we’re going, who we’ll see when we get there, and if I remember how much fun we had the last time we were there. I might not remember, but you do. You remember everything. You call a doorbell a “dingbell” and you have a little lisp, so when you say things like “Thanksgiving,” it sounds more like “Skanksgiving.” You’ll probably grow up thinking Thanksgiving is a holiday to celebrate giggling since I laugh every time you say it.

I love to hear the stories you make up. They usually involve Marshall from Paw Patrol and Batman or Captain America, always fighting bad guys. And they always win. You like to tell me which Bible stories you like the best, and even though you still insist Jesus will return to Earth on a rocket ship, I love to hear what you’ve learned about the Bible.

Josh, I just love to see your personality develop. You like to be silly but you do not stand for shenanigans. You like The Rules and you make sure everyone is aware of them. We all know that you’re pretty much raising Jenna at this point, and I do appreciate it. You remember every detail of every conversation we have, and you love to answer questions!

There is a possibility that you’re a tad stubborn, too. In fact, I think you get more stubborn every year. But you know, Joshua, for every moment I am frustrated with you digging your heels in, there is also a moment of admiration for you and the way you fight. You’ve been a fighter from literally the first seconds of your life. You had to be. And while we can butt heads sometimes, I would never change that about you. It’s made you who you are. It’s what kept you with us four years ago.

I know some things are more of a struggle for you. I’m sorry, because I know it isn’t fair. But you don’t let anything get you down. You don’t worry about what other people think of you. You just go out there and do your thing and if someone wants to follow, they can. And they do. Your smile is ridiculously contagious. Sometimes I know you’re up to no good and then you look over and grin at me, and I have to smile back.

Remember when you broke your arm? We didn’t even know it was broken for two weeks. Because you’re half human, half superhero. And you rocked that neon green cast.

Joshua, I want you to know how much I love you. And how much I admire you. You have accomplished more in your four years than some grown people ever will. You’ve had to work harder for every little victory, and you’ve had to struggle over the small things. Part of me is sad about that. But part of me know that it has shaped you into an incredible person who never stops trying. Your work ethic is better than mine, kid. And you have compassion for so many people in different situations. You’ve learned about different disabilities and struggles, and it’s made your heart even bigger. You love to love people.

Happy, happy, happy, happy birthday to my big little man, who always has a smile and a reminder about using our indoor voices. I hope this next year is just as great.

Love always,

Mommy

It’s Okay – No, Really, It Is.

It’s Okay – No, Really, It Is.

Joshua “Are You Sure You’re Doing That Right?” Eleveld started school this week! He loves it, just like last year. And I love hearing him tell me the highlights of his day (spoiler: it’s usually the playground).

For those of you not in The Know, Josh is part of the Gwinnett County Special Education Pre-K program. The goal is to prepare him for big boy school (even though I’m pretty sure he’s already in his forties, mentally speaking) and make sure that he has the tools to succeed in a typical classroom down the line.

Which leads me to yesterday. 2:00, elementary school lobby, sitting awkwardly because I am not sure if I am supposed to be sitting, but there is a chair here, so why not?  Another woman sits next to me and tells me she’s waiting for her son. I say I’m doing the same, and after we chat for a minute, she asks why I’m not in the car rider lane like most of the parents picking up their kids. I tell her my son is in the Pre-K class, and I come in to get him, like most of the rest of the parents in his class.

She makes a face. Not a disgusted or angry face. It was a face I have internally termed the “Poor Little Buddy” face. It’s the face people make when they want to convey that they are sorry for you and your situation.

“Oh,” she says, the Poor Little Buddy Face alive and well, “he’s special needs, huh?”

I smile and affirm her suspicions. Sometimes I take the time to explain more about Joshua, but as I had just met this woman moments before and as I was positive Josh would be in the lobby any second, I just say yes.

She continues speaking.

“Oh, well, that’s okay! We need those special needs guys, you know?”

I do know, actually.

I think my response was to smile again and agree. I don’t totally remember because, to be honest, she caught me by surprise. It’s okay that some kids have special needs? Does that really need to be spoken?

Apparently, it does. Not because it’s a lovely thing to hear – it’s not – but because it is indicative of a much larger problem: The idea that having special needs is actually not okay.

Look, the unknown is scary. I get that. Kids or adults with special needs can be an unknown quantity if you’re not part of that world (and sometimes if you are), and I respect that. But if there is one thing I have learned about all types of children, it’s this:

Children are listening.

They can hear you. They can read your body language. They understand a smile. And they know when you’re afraid. They see your Poor Little Buddy face and they make the connection that their special need or the special need of their sibling requires pity. But pity is the last thing my son needs.

Read these next words carefully: I am not angry at this woman in the school lobby. I am not offended or upset with her. She seemed like a lovely mom who loved her kids. When Josh did arrive in the lobby, she greeted him and spoke with him. He liked her. She liked him. I am not out to demonize anyone.

I am out to educate everyone. My goal here is to bring an awareness to the fact that we are afraid of special needs. You can pretend that isn’t true, but, frankly, you would be wrong. And we need to change the conversation around it, and the way we teach our children to react to it.

Special needs are okay. Just like brown hair is okay, and being tall is okay, and being afraid of spiders is okay (that one is REALLY okay). There is a special need in all of us, and we all want to be accepted. Not pitied. Not told that we’re accepted in spite of our shortcomings, or in spite of our need. Accepted for the way we are.

Do you want to know the secret to special needs kids? Treat them like every other kid. Recognize a need is there, find out how you can fill it, and encourage them and educate them and smile at them. My daughter has no “official” special needs, but I spend part of every single day pretending to be a puppy with her, because that’s what she’s into. That is her special need. So I try to meet it.

These kids (and adults) need you. They need you to be their advocate, to be a positive influence on them, to reassure them that everything will be okay. Find the balance between “special” and “typical” – and leave your pity out of it, pretty please.

So it is okay that my son has some extra special needs. It is okay, and I know that. I’ve always known it, because it’s an essential part of who he is. And I know you don’t always know what to say. That’s okay, too. I’m not perfect, either. None of us is – and that’s kind of the point.

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