all ten fingers and all ten toes

I’m going to tell you a few (wholly scandalous) secrets.

I never wanted to have neurodivergent kids. In fact, the idea that it was even a possibility never crossed my mind. Was I even aware that such a thing existed? Probably not. I’m not even kidding. Thank you Fundamental Christianity.

I was having babies in a time when if you were asked if you were hoping for a boy or girl, the go to answer was “I just want a healthy baby with all ten fingers and all ten toes.” Do you remember this? Just me? The day my kids were born someone counted their fingers and toes and declared they were healthy. End of discussion. All was well.

Imagine my surprise when not one but both of my kids turned out to be other than perfectly healthy despite all of their phalanges. What sort of fuckery was this?! “Disabilities” that didn’t show on an anatomy scan? “Imperfections” that weren’t visible to the naked eye. Needs that were somehow “special?!” Well what the fuck did I do to deserve this? And where was the “what to expect when your perfect babies aren’t” book? Is there a chapter on “what did I do wrong?” or how about “is this my fault or their dad’s?” Most importantly, where are the experts on “how to find resources to deal with something you didn’t know existed?” because my knowledge to this point was spare the rod and spoil the child, and if they’re still not perfect then you must just be sparing the rod and need to take it up a notch. Fundamental Christianity for the win…again.

Can we acknowledge how absolutely harmful this is on everyone?! My kids have trauma because of it, I have trauma as a result, and it helped zero percent for far longer than I’d like to admit. Turns out, burying your head in the sand or shutting completely down is not a workable solution. (I’m sure I’m being hyperbolic and overly critical of myself – I know I am- but sometimes this is just how it FEELS here in my feelings.)

Sixteen and nineteen years later, and I’m still just trying to figure it the fuck out. Every new stage of life is met with their uncertainty and mine, their trauma and mine, and a whole lot of self doubt and exhaustion. Thank the divine spirit within me and kids who never gave up on me, somehow we are making it through and learning better ways. But whew! Some days it does catch up with a girl.

I wouldn’t trade my perfectly imperfect babies for anything in this world, but I sure as shit would take a little more support and whole lot more knowledge along the way. They deserve more and I also deserved more!

Here’s to hoping some day it gets a wee bit easier. Here’s to knowing that I’m doing everything in my power to make it so, for us and for all those that ask my advice on how to navigate this world.

Love, acceptance, celebration and gratitude to all of us on this path.

mama bear

It’s midnight and Jordan has been asleep for three hours. In that time, he’s sleep-walked into the living room where Jim and I were watching TV twice. Each time there was a sense of panic in his eyes and he was talking about whatever dream he was experiencing through tears and the obvious confusion that comes when you’re walking around dead asleep. As funny as his sleep-walking and talking can be at times, this one has left me feeling gutted. 

It’s been a tough week for him. He was sick earlier in the week, but then he got well enough to attend a going-away sleepover party last night for a friend who is moving. It was a big step for both of us- his first sleep over with more than very close family friends and definitely his first large group sleepover. It wasn’t the best experience for him- some of the kids were very rude and treated him unkindly- but I was so proud of how well he did. The mama bear in me wanted to go and do what mama bears do when he told us how things went, but Jim and I know that this is part of life for all kids. We just need to do our part to teach him how to maneuver this time in life and trust that he’s going to be okay. (Within reason. I’m still me and can still go full on mama bear when I need to.)

After we picked him up from the party we went to a family BBQ with lots of people, stimulation and more opportunities for his anxiety levels to rise. The BBQ was at a house on a small cove on the lake, and Jordan’s big sis and her friend floated out into the cove on a giant float-toy. Jordan decided to go in the kayak to “rescue” them and, even though he’s gotten into that dumb kayak 20 times without tipping it, he just couldn’t do it today and kept tipping it over. It was so frustrating for him, but he was trying to rush so much to go and save the girls. He didn’t like them being out there without a rope or way to get back in. Some of the family was watching him struggle to get into the kayak, and of course it was comical, but to him it was far from funny. I could see his struggle- wanting to rush to get out there, feeling everyone watching, being so embarrassed that he kept tipping over. It was just an overall tough time, but again, Jim and I were so impressed with how he handled himself and how he bounced back so quickly. 

When we got home, he was so exhausted he just conked out. It’s been quite a while since he’s done a lot of sleep walking. I know being as tired as he was is a big part of it, and anytime he’s had a lot of anxiety he’s really a sleep talker. I can’t get the kid to give me three sentences about his day while he’s awake, but if he’s sleep talking I know it was a doozy. 

After his second time up tonight, we couldn’t get him to settle down enough to get some peaceful sleep, so I just decided to go to bed with him and try to keep him calm. In the time it’s taken me write these few paragraphs, he’s wrestled around three times and told me “We just can’t stay here any more. These people are not okay!” “We have to go. They don’t want us here and they’re just going to keep hurting us,” and “It doesn’t matter how nice you are to them, they will just keep trying to hurt us. This is a horrible place!” This is the same thing he’s been saying for the last two hours. 

I don’t know what he’s dreaming about, but as I lay here comforting him the knot around my heart just keeps tightening as the tears stream down my face. Maybe he’s dreaming about a video game. Or maybe the tension and anxiety from the last few days while he’s been holding it together so well are finally finding a way out. 

I know that nothing that has gone on in his world is so horrible. Kids feel left out at parties all the time. And I can’t count the times I felt the red heat of embarrassment creep over my face when someone laughed at a clumsy mistake I made as a kid- or even as an adult. This is life. But when you’re an incredibly sensitive kid managing more in life than the average person, it just sucks a little extra. And when you’re the mama bear of that kid, you just feel a little extra mama bearish too.  

Here’s hoping the nightmares end and peace can settle on his tired soul tonight. 

every little thing…is okay

Jim and I were in a new doctor’s office the other day answering an hour and a half interview about Jordan.  I’ve lost count of how many doctors we’ve had these conversations with at this point. Much less than some people I know, but more than I care to think about…six, eight? I don’t know.  We get to the part where they ask about his birth.

“Was it an exceptionally stressful time?” Is there really part of the last 15 years that wasn’t exceptionally stressful? I can’t remember.

“Was it a typical birth?” As typical as a planned C-Section is, yah.

“Was there any concerns immediately after delivery?”  Well, his initial APGAR scores were low and it took forever for him to cry, but within a couple of minutes no one was worried anymore.

Jim chimes in.  It wasn’t that long, babe. It was all less than a minute; it just seemed really long.

He and the doc share a knowing glance…

Well, here we are again. Me trying to come up with reasons that force it all to make sense.  I could see on the doctor’s face, this isn’t new to him. I’m sure moms everywhere are trying to put their finger on the WHY, even after we know there’s no way of knowing the why, or maybe the why isn’t a why but more like 50 whys. Or there’s no why at all.

But I want a why. I want to blame something. someone. even if that someone is me, that’s okay.  I get tired and I want answers, so then I can finally fix it. I’m a fixer.  It’s really the worst thing you can be when you have a kid who isn’t always typical, because…there’s just no fixing some things.  And then you feel guilty for even thinking that your perfectly amazing child would ever need fixing.  And so the cycle goes.

These past few weeks have been a little more challenging than normal.  Not with Jordan; he’s actually excelling, I think.  It’s been challenging just within our family as a whole. Finances are tight, as they are this time of year: recovering from the holidays, paying for sports fees and gear, a huge car repair bill – the usual stuff.  But the usual stuff sometimes feels more stifling when you’re a one income family.

Years ago, we made this decision. We will sacrifice financially so that I can be there for both of the kids in the needs that are unique to them.  There have been times when I’ve gone back to work when we really needed it, or when we thought the kids were ready, but then realized maybe they weren’t. I’ve owned and run successful businesses from home, but it always ends with us feeling like the kids are taking a back seat and that I need to focus on them.  It’s hard – finding that balance. It’s hard for everyone.  I think, and I’ve heard from others too, it’s even harder when your family is a little more than typical.

Studies say the average family with a special needs kid spends $17,000 more per year than other families. Co-Pays and prescriptions alone add up to more than half of that in our family (never mind deductibles that I don’t even want to think about.) Then you have therapy expenses, special purchases, and the truck loads of kinetic sand and silly putty I’m constantly searching for, and…you get it.  I’d say $17k is the understatement of the year.  Sometimes I just have to acknowledge these things to keep perspective.  Sometimes I just need to tell myself it’s okay.

It’s okay that I don’t bring in $60k+ per year like most of the women my age and with my background.  It’s not time for that.  It’s okay that sometimes money gets tight and the only explanation I have for that is that “shit gets hard sometimes and we just have to get through it.”  It’s okay to feel suffocated by all of the needs and demands and “I DON’T FUCKING KNOW RIGHT NOWs.”  It’s okay.

It’s okay to not have the answers.  It’s okay to need to cry when no one is looking for no reason other than I can’t stop the tears from falling.  It’s okay to be sitting in a therapist’s office answering intake questions about my son and suddenly realize everyone in the room knows that I’m probably the one that most needs the therapy.

This is being mom to someone that needs more than the “average” kid. Whatever that means. And we’re all okay, or at least we will be after a hot bath and a good cry.

 

 

 

 

so i guess this could be the end

Jordan says he’s quitting football after this season. He didn’t say it flippantly or because he had a bad game. He said it like he’s been thinking about it for days and finally just spit it out because he couldn’t take it any more.  He said it even though he knew my initial reaction would be disappointment.  He said it because he genuinely doesn’t want to play his favorite sport anymore.

I need to say that out loud, but I can’t yet.  Not because I am a crazy sports parent that thinks my kid is going to go to college on his athleticism. Not because I think he’s the best thing to ever happen to football, but because football is the best thing that’s ever happened to him.  Until now, football was the one thing he didn’t struggle at more than the average kid.  During the football season, he has always excelled- in school, at home and on the field. His confidence has always been on a whole new level from July through October.  Putting his pads on and stepping on that field brought a light to his eyes and a swagger in his steps like nothing else I’ve ever seen for him.

And now that light is gone.  As stupid as it might sound, that hurts my mama’s heart.  It’s just really hard to see your kid lose his passion for something that he genuinely loved, and know it has very little to do with him, and much to do with a lot of things beyond his control.

Having a kid with Aspergers is never easy. It’s a constant dance for me – don’t be too easy on him, but definitely don’t be too hard; don’t make excuses for him, but be realistic; be patient, but for godsake don’t let him just run me over.  If I, his mother, trip over my own feet, of course I can’t expect his coaches or teachers or friends to be any different.  I guess that might be the hardest part.  I sure can’t keep him in a bubble, but putting him in situations where I have to trust people I’m not sure I should is exceptionally tough.

I know his confidence is more fragile than the average kid. He might pretend like it’s not- like he’s oblivious to things that others aren’t, that it doesn’t affect him the same, but it does.  He sure as hell won’t talk about how he’s feeling, until he does. And at that point, his mind is made up and the stubborn determination that he’s doing what he just told you he’s going to do settles in.  And so now what?

When I told him we could just switch teams next year and start over, he told me “it’s too late. I just don’t belong playing football anymore. It’s just not my sport like I thought it was.” And my heart broke. Because it’s just not true, but I don’t know how to convince him of that.

My morning has been spent trying to figure out how we come back from this. Listening to his dad fight back tears when I told him about our conversation. Trying not to be angry. So I come here, because this is where I always go… when I can’t say the words out loud.