Friday, February 10, 2017

Coparenting high-needs kids

I am divorced from Wyatt and Lilly's dad. We separated in early 2012 when I came out to him as gay. It was hard and angry and ugly, but we've gotten to a place now where we can coparent effectively, and we're friendly with each other for the sake of the kids.

Since Brandi and I live about 300 miles from their dad, we have two weeks on-two weeks off schedule for timesharing. (It works well since the kids are homeschooled.) It takes careful planning and lots of coordination with their dad to make sure the schedule works for everyone. I'm just glad we don't have to take school calendars into consideration at the same time. It makes things a lot easier.

In addition to the regular schedule, we rotate holidays, which has to be accounted for in the calendar. It can get complex, but when it all comes together, it works well. Not only do we get equal time with the kids, but Brandi and I get time to ourselves for whatever we need, too. (Next month we're planning a weekend getaway.) In the context of our schedule, coparenting works pretty well once we get everything organized.

But, more importantly, coparenting only works when both parties are invested in the best interests of the kids, especially when those kids have high needs.

Lilly has a specific eating schedule. In addition to her regular three meals (which occur at specific times), she has a morning snack and afternoon snack at specific times. Along with the specific eating schedule, there are "rules" for meal and snack times to deal with the behavioral elements of her feeding disorder. Her dad and I have to keep a lot of communication between us to make sure that the plan is working and there aren't any major obstacles that need to be addressed.

It's a little easier with Wyatt. Though we try to talk openly about his anxiety attacks and when he's having a flare of anxiety. We also try to talk about things we do to help him through his anxiety or any new manifestations that may pop up.

If I wasn't able to communicate effectively with Wyatt and Lilly's dad, managing their high needs would be a hell of a lot harder. It requires vigilance and consistency. When the kids are going between two homes, it's essential that we communicate to make sure that the different environments maintain expectations set by doctors and other care professionals. And that problems are addressed effectively so that the kids continue to thrive.

As long as we remember that coparenting is about the kids and not us, the kids will be great!

Thursday, February 2, 2017

Lilly feels like a girl and a boy

Last week, Lilly told my wife that she wants to be a girl and a boy because she likes "girl" things, but she also wants to play with dinosaurs, which she equates to "boy" things since her brother loves dinosaurs.

Bo (rightfully) told her there's no such thing as girl things and boy things. If she has a toy, it's a girl toy because she identifies as a girl. Simple as that.

The next day, Lilly chose clothes that are less feminine than her usual choices, wearing what most people would describe as a "tomboy" look.*

I asked Lilly about what she'd said to Bo, confirming it. I re-iterated that playing with Barbie dolls or dinosaurs does not make her a boy or a girl, and that the only person she should be is Lilly. I reminded her that the important thing is how she feels, and that she's comfortable in who she is. So I asked her, "How do you feel in your heart?"

She said, "In my heart, I feel like a girl and a boy."

I don't think that this is a revelation of genderfluidity by Lilly. But that doesn't matter. Regardless of how she feels this week or today or two years from now, the most important thing to me is that she knows who she is and feels comfortable in who she is.

And the same is true for Wyatt.

She can wear pants. He can wear nail polish.

It doesn't matter. Because I am their mom and they are my kids. I love them and will support them.

The end.






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*I hate the word "tomboy." Gender is a spectrum. Just because my daughter doesn't wear pink and dresses all the time doesn't mean that when she wears jeans and t-shirts she should be equated with a boy. Wearing more androgynous clothing does not make her any more or less than who she is.

Tuesday, January 17, 2017

The kids rule our lives, but not in a bad way.

Most of the time, when people think about kids ruling the house, it's because the kids are spoiled or misbehave or have no discipline.

That may be true in some families. But not in ours.

Our kids rule the house in a different way.

Lilly's Feeding Schedule

Because of Lilly's eating issues, we have a strict schedule for meals and snacks that has to be adhered to. Right now, that means:

8:00-8:45 a.m.     Breakfast
10:00-10:25 a.m. Morning snack
12:00-12:45 p.m. Lunch
3:30-3:55 p.m.     Afternoon snack
5:30-6:15 p.m.     Supper 
(Sometimes, she will also have an evening snack if she didn't get enough calories in a day.)
Her meals and snacks are throughout the day, and require sitting at the table with minimal distractions. That means it's not always practical or possible for us to take day trips or go on unplanned adventures. Our days revolve around Lilly's daily schedule.

Along with her food, we have to plan for her medical appointments. She typically sees at least one specialist each month, However, she's currently seeing both a feeding therapist and a medical doctor who specializes in pediatric feeding disorders, so that is two appointments a month, and she'll be likely adding a behavioral psychologist to the mix, which could drastically increase the time spent in office waiting rooms each month. Anything else we need or want to do -- including medical appointments for my chronic illness -- has to be scheduled around her appointments.

Wyatt's Anxiety

Wyatt's anxiety and sensitivities are a little harder to accommodate. He experiences flares for no reason, sometimes due to fatigue or stress or a change in his schedule. An unplanned adventure may seem like a good idea, but once we get there, he may become overwhelmed by the people and environment and have an anxiety attack. He may get some dirt or food on his hands and have an anxiety attack if he doesn't know where the bathroom is so he can wipe it off.

One of the big problems we have is that when Wyatt has an anxiety attack, the rest of the day is filled with anxiety. He may have a "minor" anxiety attack that is resolved quickly, but that attack makes him more vulnerable to triggers for the rest of the day.

Sometimes, Wyatt's anxiety is a little easier to handle than Lilly's eating and appointment schedule. But sometimes it's harder because of its unpredictability. And most days, his sensitivities and anxieties rule our days.

But that isn't a bad thing.

Even though the kids rule our home and our lives, I don't see it as a bad thing. First of all, we are still in control. The kids aren't ruling the house because they do whatever they want whenever they want. In our home, the parents are still in charge. We have rules and expectations, and they are followed.

The reason the kids rule our lives is because they have specific health needs (physical and mental/emotional) that must be met in order for them to be healthy and happy. And there is no way we'll compromise what they need to make our schedule easier for us.

On top of that, building our daily schedule around the kids' needs keeps the kids at the forefront of our lives where they belong. Not only do they belong there because of their health needs, but because they're our kids. We want to do what's best for them. Always.

We have an advantage.

One of the reasons this works so well is that our life is conducive to meeting the kids needs.

I work from home. This gives me the flexibility to adapt my schedule so that I can be there for every meal, homeschool the kids, and be at every appointment. I can stop what I'm doing to help Wyatt through an anxiety attack. I can delay my workload a few hours to get some one-on-one time with Lilly away from the table.

Brandi is (currently) a stay-at-home mom. Another thing that makes it work is that Brandi is a stay-at-home mom. This is in the process of changing, but for now, it means that even if I can't give the kids the immediate attention they need, she is there for them.

We live with my parents-in-law. I like having a house full of family, and by having Brandi's parents in the same house as we are, Wyatt and Lilly have their grandparents (Mimi and Papa G) with them every day to help, be another source of support, and to distract them when Brandi and I have other things that need to be done.

We homeschool. Honestly, I cannot imagine how this academic year would have gone if the kids were still in public school. Between Wyatt's anxiety and Lilly's eating problems, it would have been a nightmare, and they would have missed as many days as they would have gone. By homeschooling, we can be sure they get the education they need (including pushing them based on their level instead of following a curriculum set ahead of time). And we can build homeschooling into our chaotic schedule.

This doesn't mean that families with more traditional environments (working outside of the house, public school, etc.) can't make it work, too. But it may take a little more coordination and planning. If you're working with health care professionals, make sure you get documentation of your kids' needs so you can get accommodations at school and daycare facilities.

And it will definitely take more vigilance to ensure that everyone in your kids' lives, from teachers to after-school care, are all on your team and working with you to do what's best for your high-needs children. Have regular meetings so you can be updated on how things are going and so they can be updated on your kids' conditions and any progress (or regression) that needs to be addressed.

Because when you have a high-needs kid, your kid rules your life.

And that's not a bad thing.

Friday, January 13, 2017

What is a high-needs child?

When I talk to people about having high-needs children, I typically get one of two reactions. Either they really have no idea what I'm talking about or they think "high needs" means fussy (like colicky babies) or angry (like in preteens and teens).

For those who don't know what I mean, I tell them. But there's a bigger problem with those who think high-needs means either fussy or angry. Because that's not it at all with my kids. And that really is the bigger problem.

High-needs doesn't have a clear definition the way other labels do.

For example, special needs is typically defined as a diagnosis that causes difficulties, such as physical, emotional, social, or mental disabilities, that require particular care, treatment, or accommodations. Special needs has a specific definition because of the medical, legal, and -- frequently in the case of children -- educational parameters for accommodations and care. There is legislation in place to provide accommodations and care for children with special needs.

High needs doesn't have the same definition.

When referring to a high-needs baby, typically people are referring to a child who is "colicky," fussy, or who needs more attention and contact than other children might. Both of my children were high-needs babies. In fact, when Lilly was born, I had to sleep with her in my Moby wrap sitting up in bed for about three months because she screamed every single time she was put down. It was definitely a challenge.

When referring to a high-needs child, typically people are referring to children at or over the age of ten. These children most often have behavioral/anger issues that need to be addressed and treated in order to ensure they can adjust to their environments and day-to-day responsibilities.

But there's a gap.

Typically, when I research "high-needs child," the results I get are one of the two extremes: baby or child (meaning over the age of ten). But there's very, very little addressing high needs for children from toddler age up to the age of ten. And once they reach that magic age of ten, the results focus on behavioral/anger issues.

That doesn't apply to Wyatt and Lilly.

So what I mean when I talk about high needs in my children is that they have extra care (and, in Lilly's case, treatment), but neither of them has a medical diagnosis that shifts them into the category of special needs.

Wyatt's anxiety (and potential physical health problems) and Lilly's feeding issues are impactful on the kids' lives, my wife's life, and my life. But they don't have diagnoses.

One of the problems Brandi and I have with a lack of diagnosis is that we don't really have a place we can go for support right now. There's lots of support for high-needs babies and adolescents. There's lots of support for special needs kiddos. (And please don't misunderstand -- I love all the support available for those families, especially thanks to the Internet!) But there are so, so many times that Brandi and I feel very alone in what we're doing. There's not a support group on Facebook (or in our town) for parents of kids with what might be a feeding disorder. Or kids who have anxiety but aren't getting care from a counselor or psychiatrist/psychologist.

Another problem is that, because of the kids' ages, when I talk about them being high-needs, there's a stigma associated with that term. Many people think the kids are spoiled or acting out and just need to be disciplined "better." Or "they're just kids."

No.

The rounds and rounds and rounds of blood work taken from my daughter aren't just because she's a picky eater. It's so, so much deeper than that. And we (thankfully) finally have a doctor who believes us and is working alongside us to get Lilly where she needs to be.

The hours and hours spent calming Wyatt during an anxiety attack aren't just because he's throwing temper tantrums. I struggle with anxiety. I know what an anxiety attack looks like.

That's why I've started this blog.

Wyatt and Lilly are in a big of a unique position, which places all of us in a unique position. It feels alone. So I'm writing here to reach out and say, "Anyone else?" in the hopes that, even if you don't raise your hand and say, "Us, too!" you know that

you are not alone.

Stick around. Read. Comment if you want.

And know that there are other kids like yours. There are other families experiencing what you're experiencing.

And it's okay.

Tuesday, January 3, 2017

A brief introduction to my high-needs kids

We have two high-needs kids: Wyatt and Lilly.

I know that "high needs" is a loaded phrase. I know that it means something different for different people, just like special needs means something different for different people. When I say "high needs," I mean that the kids have health and wellness needs beyond the average child, but they have never been diagnosed with any condition that would cause them to have those needs.

Their needs shape our family life and parenting. Because we do what we have to do for our kids. Always. This blog is about our kids and what it means to be a parent of a high-needs child.

Wyatt

Wyatt is seven years old. He like science and dinosaurs and a show on Netflix called The Deep about a family that lives and works underwater as oceanographers. He also likes video games a lot, but he usually gravitates toward educational games or any game where he has to solve puzzles or build things.

He loves to read, but much prefers a series over a standalone novel because he can immerse himself so much more in the world in which he's reading. Right now his favorite series is Magic Tree House because it's historical fiction. However, he also likes some fantasy and adventure; he recently read The Wind in the Willows and really liked it!

What Wyatt wants to do with his life changes frequently. Sometimes he wants to be a farmer or a chef. Sometimes he wants to be a travel photographer or an artist. Sometimes he wants to be a firefighter or a police officer. For a while he wanted to study genetics so he could figure out how to bring dinosaurs back. But only the herbivores. Obviously.

Wyatt is, overall, healthy. But he's not growing in height as much as we'd like. On top of that, he seems to stick his chest and belly forward, and he's incapable of straightening his back flat against a wall. He has an appointment with his pediatrician in a little over a month for a height check. If he hasn't grown in height, we may have to work on figuring out why.

The other problem we face with Wyatt is his anxieties. He's always been fastidious, even when he was just two. But in the last couple of years, what we labeled as quirks have become phobias and habits. Sometimes it means he has to wipe his fork (over and over and over) after using it to eat mashed potatoes because it's "dirty" and he can't use it to eat corn. Sometimes it means he wants to change his clothes because he dribbled water and they're dirty. Sometimes it means needing me to stand with my back to the bathroom door, which is ajar, with my arm sticking into the bathroom because he's scared to be alone in the bathroom with the door shut. Sometimes it's anxiety attacks because he can't get his fears under control in the moment. We're working on coping and helping.

Lilly

Lilly will be six in April. She likes math and princesses and ballerinas (especially Misty Copeland) and soccer (especially Ashlyn Harris) and Rosie the Riveter. She knows nearly every song from My Little Ponies: Friendship is Magic and when we need her to quiet down we tell her to use her "Fluttershy" voice. She's always on go, always wants to talk, and is developing her own unique fashion.

Math is her best subject by far. She reads almost as well as Wyatt (she could be reading Magic Tree House, too), but she doesn't enjoy it like he does. She reads because she has to. She would much rather be active and to read you have to sit still. But she'll do math all day. She can even think algebraically. (For example, If I have seven fish fingers for my custard but I need twelve, how many more do I need?)

Lilly's not sure what she wants to do when she grows up. She's still exploring and figuring out who she is. Sometimes she wants to be a ballerina. Sometimes a soccer player. Sometimes a builder. Because sometimes you go from twirling in your new skirt to stacking wood to make steps. As you do.

Lilly is small for her age. As of this writing, she is about 41" and about 33.5 pounds. She was small when she was born, and shortly after, she was diagnosed "failure to thrive" (that phrase that stamps knots in mothers' stomachs. She was doing better for a while, but then inexplicable leg pain led us to a pediatric orthopedist and a gastroenterologist and a nutritionist and a doctor who works specifically with kids diagnosed with failure to thrive for various reasons. She has no interest in food. If she isn't having hunger pains, she thinks she's full. We've done everything we can think of and everything the experts have told us should work to get her to eat. And it's not working.

She has another appointment this month with her specialist, who is bringing in a dietician, and an appointment with a feeding therapist who is hoping to bring in a behavioral psychologist. And we'll see what the next step is.

We don't have a diagnosis for either kid.

Overall, the kids are healthy. Blood work comes back okay. They're both active and happy. They're both very smart.

For a long time, I was told by people I trusted that I was worrying too much, and that everything was okay.

I knew it wasn't.

We have high-needs kids.

For Wyatt, that means that he walks and runs a little differently than other kids, and sometimes his anxiety gets the best of him. For Lilly, that means she doesn't like to eat...ever.

We're doing what we can and what we have to do for the kids. One step at a time.