Friday, February 21, 2014

Life outside the box

Before we ever got pregnant with any of our children, I wanted to have boys. I had worked in daycare settings, caring for infants, one year old toddlers, and two year old toddlers. I observed babies who were 9 and 10 months old and knew that at that age the girls were already starting to be a little dramatic and the boys were obsessed with balls and physical play. So when we found out that James would be a him I was stoked.

I learned from discussions with my husband and observations from my childhood that since women are often the primary caregivers and teachers, boys are sometimes expected to behave like girls since women have only ever been girls. So I resolved that I would not try to force my sons to sit still and behave like girls, that they would be allowed to get dirty and explore the outside and have adventures.

I moved into parenthood with confidence, after all, I had had the chance to watch dozens of other parents navigate the infancy and toddler stages and I had observed their successes and failures and I thought I knew what kind of mother I was going to be. I knew how to set up eating and sleeping schedules, how to burp babies and change diapers, how to apply diaper cream and what creams I liked. As an infant and a toddler James was all boy. He was into everything as soon as he could crawl. I remember explaining to my friends that there are four kinds of kids, 1) You tell them "no" and they dissolve into tears; 2) You tell them "no" and they generally obey; 3) You tell them "no" and they wait until your back is turned to do it anyway; and 4) You tell them "no", they look at you and smile, then do exactly what you told them not to do. We assumed at that point that James was the fourth one. He was obsessed with the outlets, he climbed on the table, he was into the drawers in the kitchen.

When James turned three he was in preschool and started to act out in ways that were inappropriate for a classroom setting. He would throw things on the floor or become obsessive over the trains. The teacher mentioned that he didn't respond well to his name being called from across the room. I realized that I was at the end of my expertise. I had never worked with three year olds before, I had no idea what to do with him. So I started to read books, ask my friends, and talk to our pediatrician. Eventually I realized that I wasn't having a battle of the wills with James, he's not a defiant child. I began to realize that even though he's very verbal, he often doesn't understand conversation or simple instructions. It's easy for him to feel socially lost in a group of people and revert to doing his own thing. Sometimes "doing his own thing" is quiet, basically every mother's dream, he'll play with his trains quietly for 30-45 minutes. Other times "doing his own thing" means that he wants to explore the kitchen (knives), splash in the water in the bathroom, or pull the step-stool up to every elevated surface that I use to keep contraband and other age-inappropriate items out of his reach.

We found out this year that James has autism and sensory integration disorder (SID). SID can be broken down into two categories-- Low Registration/High Registration and Sensory Seeking/Sensory Avoiding. Registration is the body's ability to perceive sensory input. James is Low Registration which means that his body needs more sensory input for it to "register" in his brain. Seeking/Avoiding is the distinction between a child who craves sensory input and the child who avoids sensory input and is distressed by it. James is seeking. So basically we're working with a child who runs into people, hits them, throws things on the floor, dumps out "sensory toys" (like pasta tables) and then when you add in the autism, he can't understand why it's not ok.

Liam expresses many similarities to James and also some key differences. Liam is largely nonverbal. He has shown some good progress over the last six months in speech therapy but he still has a hard time communicating basic needs and he cannot communicate any verbal information about his emotional state (angry, sad, scared, etc). He also has SID and is Low Registration/Sensory Seeking.

Let me be clear. Whatever diagnoses or labels you put on them, they're still my boys. They are the kids that I have known and loved since the moment I got a positive pregnancy test. Their labels may change but my love for them will never change. They are both so funny, James quotes lines from movies at the best times and Liam is a goofball. They are kind and thoughtful, they look out for each other. I love that I get to be their mommy.

There are times that this life is a struggle. In many ways I struggle in all the same ways that other mommies struggle. I am frustrated when my children disobey. I feel completely out of my league, like I have no idea what I'm doing. I constantly wonder if I'm making the right decisions or doing enough for them. I worry about trusting other people to take care of them at school, at church, or at home when we have babysitters.

But I also have a different set of worries: James and Liam would not be able to tell me if something inappropriate happened at school/church/with sitter. They don't understand normal safety precautions and we have to be vigilant when we're near moving vehicles, when there are knives on the counter for food prep, when we're at someone else's house and they can reach batteries or magnets (they may eat them), when we're near swimming pools or the ocean (they have no fear of the water). Recently I realized that in our town the predominant form of socialization happens at festivals (Pirate Fest, Watermelon Festival, Collard Festival, etc) or at large gatherings in our Town Commons. We can go to those things and bring our children. But we cannot go with the kids and expect to socialize with other people. They each want to run in opposite directions and I can't trust that they won't wander away or try to jump in water or drink someone's drink or who knows what else.

Honestly, it can be rather lonely.

It's not my intention to complain, not really, I just hope you'll hear my heart. When I turn down your invitations to birthdays or going to festivals or hanging out in open spaces, know that I'm not copping out. I'm not making excuses. Those settings are a genuine struggle for me and our family and I will leave feeling like I didn't get to spend time with you. If you have breakables in your house that are in reach of a very tall four-year old, would you consider moving them up a little higher before you invite us over? Or roll with the flow if I suggest my place instead? When we talk about what our kids might "get into" keep in mind that James has the ingenuity and physical ability of a four year old with the behavioral restraint of a two year old. And Liam has the ability of an almost three year old with the restraint of a one year old. So when I go double check an area, it's not because I doubt your ability to gauge what would be safe for a typical four year old, it's just that I know my four year old is not typical.

In so many ways I'm very new to this journey. Just one year ago we were starting to get those "bad behavior" reports from preschool but we hadn't started the referral process for evaluations. But I love to help people understand the little that I've figured out about how their brains work and how they experience the world differently; I think it's fascinating and love to raise awareness and understanding. I'm passionate about working with my kids so that they can be in "normal" settings without causing unreasonable discomfort to their peers (predominantly, that they don't physically hurt anyone) and helping their caregivers understand good ways to communicate with them.

If you think you might be at the outset of this journey or if you know someone who is walking this same road and you have questions, feel free to contact me. Or if you'd just like to understand how to talk to my kids in a way that they understand, let me know. I can promise you I don't have all the answers. But like all mothers, I love to talk about my kids :) They're pretty amazing.

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