A Story of Being Human: A Henry of All Trades

Henry is just another kid. Especially now, he’s almost 12. He wants so much to be independent. He sees his friends being able to go do things on their own or have a phone, and he’s like “what about me? “

He loves to play baseball. He plays with Miracle League. He likes soccer

He loves to cook. We made a Julia Child’s recipe. It was Coq Au Vin. Today we are going to make chicken strips and ranch sauce.

He loves music. Loves music! He’s obsessed with The Beatles.

We went on our first cruise last month and there was a Beatles Cover band. We met a lot of people because he was at all the shows and he’d go and get people to dance. He LOVES that!

He’s got a guitar. He’s got a harmonica. My husband and I have a band and every now and then, we’ll let him bring his instruments and play with us.

I feel like in society today there’s so much pressure on measures of performance and the final outcome, rather than, you can still contribute even if you’re not the top scorer, or this or that. I think everybody has something to contribute in some way, no matter what it is.

I have no idea what Henry is going to decide to do when he grows up. We always say he’s going to be a performer, a preacher or a politician. If you ask Henry though, he wants to be a chef and it’s a dream of his to have his own YouTube channel.

“I think everybody has something to contribute in some way, no matter what it is.”

I think his modeling thing, we did that as a fluke. His first job was for Kohl’s and he had to have an agent, so we found an agent. She’s just amazing. She hadn’t had anybody with Down syndrome before, but she said “I’m just going to submit him like anyone else.”

I don’t want it to be about Down syndrome. It’s about Henry. I don’t want him to be known only for Down syndrome. I want him to be known for Henry and for his gifts, his personality, his quirks, his ability.

When he auditions, he usually is up against mostly typically developing kiddos. Sometimes he gets it, sometimes he doesn’t, just like everybody else.

I’m especially proud of his agent, because she’s got this huge roster of other kids with disabilities now. It’s not a separate disability division, it’s just all the kids. It’s about who you are. Do you fit the specs? Henry has sometimes had jobs where the client is looking specifically for someone with a disability.

We did have one instance, a very long time ago where Henry got booked for a job and he even did an in person call back, but when they were on set, the director asked him to leave the set because he had Down syndrome.

He still got paid and from what I understand, the rest of the team was absolutely appalled because they knew Henry and had already worked with him. They loved him. It wasn’t a great moment for them, but that company has since had plenty of kids with disabilities. So maybe that was a teaching moment for them.

“I don’t want him to be known only for Down syndrome. I want him to be known for Henry
and for his gifts, his personality, his quirks, his ability.”

One of the misconceptions of individuals with Down syndrome is that they’re always happy. In fact, Henry and some of his peers with Down syndrome, have an extra stubbornness streak.

One thing that we run into, when we’re out and about, and he misbehaves, we do our best to quietly correct his behavior, just like any parent. But because he has a visible disability, some people will be like, “Ohh no, that’s OK,” thinking that he’s not capable of anything better. Henry loves all attention, so this type of attention only encourages him to continue this behavior.

Up until this year, Henry was in a public charter school. We liked their inclusion model, but it seemed there weren’t a lot of expectations for Henry; he wasn’t growing academically.

They closed unexpectedly and we had to transfer him to a local public school.

The school closing was a blessing in disguise. Henry is writing daily in his school journal, full sentences. The school follows the true Montessori model, whereby he works with peers to model them.

Henry is making strides I’ve not seen him make his entire school career! He’s reading now. He wasn’t reading before. The expectations at his current school for him are the same as his peers essentially.

The most important thing is that everybody believes in him and they presume competence. I see real friendships developing outside of school. Not the forced “oh, I have to invite everybody in the class” kind of thing.

Periodically I get a note from his teacher, and I just cry happy tears because it’s amazing how he has changed and matured and developed. He comes home and he’s so proud of himself.

It’s really fantastic, but I don’t know what’s going to happen next year. I don’t know what the future holds for him yet.

“The most important thing is that everybody believes in him and they presume competence.”

Henry’s present school follows the Montessori model. They don’t have an adaptive curriculum. I don’t think they’ve ever had a kid with Down syndrome.

His teacher is amazing. She has something like 30 kids. No classroom aides, nothing. But it’s great because Henry is participating actively in everything.

In the beginning of the school year, he went to STAR base camp for a week, which was at an army base, and it was all STEM. He did that with all the other kids, and that really kicked off many friendships and peer mentoring. They’re going to something called nature’s classroom at the end of February.

Having high expectations of how you conduct yourself, and the personal skills, that has always been a struggle for him. He’s made strides here. It’s amazing.

It has been suggested we consider moving Henry to a school with an adaptive curriculum (read: an all disabilities school).

We don’t want that to happen. Henry is thriving in this current environment where he has higher expectations and fantastic role models. He has grown significantly in just a few months and we want that to continue.

“Henry is participating actively in everything…
He’s made strides here. It’s amazing.”

Wherever we go, Henry has this innate sense to seek people out that might be feeling doubt, or tired, or who just need something. They need a human connection. Out of the blue, he’ll just walk up to them. He doesn’t do that to just anyone. He’s very intuitive. I feel like we need more Henry’s in the world. It’s just beautiful.

A note from NHU:

Henry’s story exemplifies the power of inclusion, particularly in education. Let us all continue to fight for public schools that instinctively fold our children with disabilities into the everyday and give them the autonomy to thrive.

To learn more about the Montessori Model of learning visit American Montessori Society.

If you are in WI and you’re just entering the realm of parenting a child with a disability or just need a connection of your own, Henry and his family have found that connection through Parent 2 Parent of WI. They match you with other parents who have navigated that road. Please reach out.