A Letter to Myself

I know it’s somewhat frowned upon to talk to yourself, but what’s the over/under on writing a letter to yourself? Still crazy? Don’t answer that. 

Hey you. Yes, you. Self. I need to tell you a few things. I need to write a few things down for you so that maybe on the days when rational thought is fleeting you’ll remember these words. Because you’re a visual learner, and I know that because well… I’m you. 

1. Slow down. I mean it. You spend so much time freaking out about how long things are taking (hello dramatic handwaving in the car at the person in front of you taking too long to make a right turn), how fast your to do list is growing, how there’s no way you’ll ever get everything done. You’re missing things. You’re missing moments that seem like nothing, but if you let them in, they will add up to a whole lot later on. Another of Larkin’s 10 minute stories, another of Kellen’s daredevil moves, another of Patrick’s random “we should …” ideas. This is your life. It’s the only one you’re going to have, and you’re damn lucky to have it. So stop thinking about all of things that haven’t happened, that you think need to happen, and start looking around at the amazing things happening right now.

2. Ask for help dumbass. Now here I’m going to give you a gold star for today. You asked for help TWICE. And guess what happened? Someone helped you! You spend so much time worrying about everyone else, and you need to stop it and realize that people want to help. That good people are out there, and they’re just waiting for a chance to jump in where they can, to make just a tiny piece of life a little bit easier. Why is it so hard for you to ask for help? I know you think that this is your burden to carry and that you don’t want to ask for special treatment. It’s not, idiot. It’s doing what’s best for the kids, for Patrick, for you. It’s okay to ask the receptionist for a safe place for Kellen away from the other kids in the waiting room. It’s best for Kellen, it’s best for you, and guess what, it’s best for the other people in the waiting room, too! It’s okay to ask another mom to take Larkin someplace. You could have just said no, sorry, we can’t do that because Daddy is at work late today. You could have tried to take her with Kellen and made all three of you miserable (and I still would have hoped you’d given yourself credit for trying). But you made the right call. You asked someone to help, and they were more than happy to take Larkin (THANK YOU! You know who you are!!). And that moment tonight at the dinner table…when Larkin looked at you and gave you the most genuine “thank you” you’d seen in a long while. THAT. That is why you put your pride on a shelf and you get out of your little box and you just ask for help. Because while I know in your deluded brain you think that maybe you really can do it all (and more so that you HAVE to do it all), the reality is that you can’t do it all ALL of the TIME. 

3. It’ll be okay. I’ll be honest, I’m trying to be encouraging, but I still have a lot of feelings about that one. But here’s the thing. I know that when all hell is breaking loose inside (and thus outside) of Kellen that seconds feel like hours. That you see him, hear him, feel him filled with rage, sorrow, frustration, whatever it is in that moment, and that you completely and utterly break inside. I can’t fix that. No one can fix that. But you can try to shift your perspective in that moment just a little…baby steps. I know that those moments feel like forever, that you feel like surely this is the time he puts his head through the car window, that this is the time that it just doesn’t stop. But it does. It will. The rage and the tears will end. And he will come back to you. He always does. And if you stay there with him, in that moment, he will always find his way back to you. I believe that, YOU believe that with every cell in your body. It may not be okay right that minute, that hour, that day, but it will be okay again. 

4. You are lucky. No, this is not the “autism is a gift” conversation…duh. This is the “don’t forget where you came from” conversation. I know that you know this, but you need to know it more often! You need to look over every morning and remember that though he snores and may drive you nuts on a regular basis, that there is no more perfect match for you than Patrick. He is in this with you 100% every single day. He loves you, he loves the kids, he loves this life, and the bottom line is that he just wishes that you’d spend more moments being happy than being worried. Jesus, why is that so simple to type yet I can’t seem to get that through my head? And I know you’re grateful every single day that you have children at all. I know that. But don’t forget to value just how great these two are. Larkin is everything you dreamed. When you sat there and looked at ultrasound pictures, she was what you envisioned. She was who you mourned with every miscarriage. Your little clone who talked incessantly, tested your patience, wanted to go places with you, made you so proud. She is all of that plus so much more. And then you need to see Kellen for who he really is. When you pictured a son, you saw a mama’s boy who put you on a pedestal…good Lord woman, do you realize that you truly are his world? Remind yourself what a gift that is in the first place, and then remind yourself what a gift that is in the world of autism. He adores you, he has not come close to reaching his potential, and he needs you to stop freaking worrying about what he’s not doing and start seeing what he is doing. In his own time, he will keep surprising you. Let him. 

5. Stop comparing. I mean, really, do I actually have to remind you of this? Measure your successes within your house. Don’t fall victim to measuring yourself against the perfect Facebook lives. Look around, and instead of seeing everything that didn’t turn out the way you’d planned, see the life you’re living… see the love, the laughter, the future. Quit crying about the unknown, and start living in the now. You couldn’t be surrounded by 3 better human beings. Be present for them. Be better for them. Be happy for them and for yourself. Leave all the other crap behind.

So yeah, that’s what I have to say to you today. The years are flying by. Do your best to have fewer regrets at the end of each day. See more of the good. Suck it up. Stop being afraid. This is your life. Live it.

Meet Us Where We Are

One of the (fairly helpful) pieces of advice autism parents receive is to “meet your child where they are”, meaning don’t put demands on them that are beyond their current skill set, dig in and see where their level of understanding, interest, and tolerance really lies. That being said, some of our children are in fact highly manipulative (Kellen…), and as soon as they realize there’s an option for an “easy button”, then you’ve lost all hope of getting them outside of their comfort zone and moving towards new progress. In essence, kids like Kellen can sniff out the push overs a mile away.

But for now, I’m going to ask you to “meet us where we are”. I’ve not kept up with this blog as I’d hoped. Life continues to get in the way…and will forever, let’s be honest. But with the current turmoil of the world, this becomes a natural and therapeutic outlet for me, so here I am. I’d like to give you a snapshot of where we are for now, and then I can back up to the 5,000 things I’d like to say, to share, to ask, to warn you about…

So here are a couple of “mini-posts” if you will so that you can meet us in our current state. And be forewarned…brutal truths will be shared from now on in this blog (and I guess they always have honestly).

Holes in our Hearts

I don’t think I’ve fully divulged how bad things had/have gotten around here in terms of Kellen’s self-injury and aggression. The difficult part is that it was a lot worse ~18 months ago… and then I say that and wonder “Was it? Or has the needle just moved so that this level of disaster just doesn’t seem as bad after this long?” There is essentially a hole (or at best a very large dent) in every single wall of our house that has been put there by Kellen’s head. We’d have more holes in the house, but you can’t put a hole through the ceramic tile or laminate flooring. Kellen has basically had a perpetual bruise on his forehead for a couple of years now. And every time it gets better and we think we might be over the worst of it, reality comes to slap us in the face…or headbutt us actually. I’ve gotten better at dodging, so I think I have less bruises now. But when we have him mostly contained, he lashes out and pinches…those leave the worst bruises. At any given time, should I randomly show up in a hospital unconscious, they would most likely assume I was a battered wife. Again, brutal truth. On our to do list, we’re planning to talk with a group that is willing to provide training in safe restraint. Gone are the days when I could just pick up his flailing body and move him to a safe place to rage. He’s up to my chin now…I’m strong…but he’s getting stronger every day. And while I’ll talk about this more later, I want you to understand that he doesn’t want to hurt us. These aren’t calculated aggressions. These are moments when he completely loses himself, and there have been many times when I have felt completely lost in that moment and started sobbing uncontrollably…and it would bring him back. He’d see me crying and emerge out of the fog, clinging to me, us clinging to each other, for dear life. He doesn’t want to do these things…so we continue to fight and look for answers. More on this another time.

Toasts to the Unexpected

Because Kellen remains what we’d term “limited verbal”, it is always difficult to determine exactly what he understands and what he’s continuing to absorb from his daily life. He can seem completely aloof and unengaged one minute, and then absolutely shock you the next. Our latest example had us laughing and me teary-eyed (shocker). Kellen loves movies. Since we took away the computer over Thanksgiving (again, that needs its own post!), he can choose movies to watch in the evenings and on weekends. One of his more recent selections is “Mr. Peabody and Sherman”. This was not one of the more popular kids’ movies, but if you ever watch it, there’s a particular scene in the movie (which is actually repeated a couple of times due to time travel…LOL) where Mr. Peabody is making drinks for another set of parents, and once the drinks are ready, they toast, “To the kids!”. This is not something I had necessarily committed to memory, but I’d heard it enough in the background of my life. So Saturday evening, after a particularly rough day considering that Patrick had been up with Kellen from 2am-5am (he was wide awake for no discernible reason, so Patrick took one for the team) and I had been tearing through some early spring cleaning, Patrick and I went to sit outside in the backyard while Kellen played. I’d poured a glass of wine and was sitting in my patio chair, and Patrick had just gotten a beer. All of a sudden, Kellen comes over and seems really interested in my wine glass (he likes to smell it sometimes, so this wasn’t that odd), but then he goes to take a closer look at Patrick’s beer. He then proceeds to drag Patrick over to me, and we have no idea what he is doing. He takes each of our hands (with our drinks in them) and begins to move them toward each other. I start to realize that maybe he wants us to “clink” glasses, so we do, and then he says (to my utter shock), “To the kids”. You should know that anything Kellen says or sings is garbled and a rough approximation of the actual words. We’ve taken months to figure out what he is saying sometimes…but this one I got right away! He was so happy when I did, too. He made us do it a couple more times later that evening, and I have a feeling that toast will stand with us for a very long time. It was so surprising and so wonderful, and it was one of those moments that just serves to remind us how much we DON’T know about what he understands and absorbs.

Driving on a Road to Nowhere

So after some earlier escapes, we’ve secured our house fairly well against Kellen getting out. So one day, Larkin and I lost Kellen for about a minute. We couldn’t find him anywhere, both the front door and back door were locked, so I went into the garage and found him sitting in the driver seat of my car pretending to drive (he was making car noises and everything). While this has proven to be less than ideal (my car is in a general state of disarray most mornings with random lights on, high beams on, windshield wipers on, mirrors askew), you really can’t argue that this is an age appropriate obsession. The other day it was in the driveway, so he decided to get in again. It was chilly, so I got in the passenger seat. He then proceeded to get me to buckle myself in (at least this is drilled into him because he buckles himself in every time he plays in there!), and then he went back to driving. I managed to get him to take a picture, too. I have no idea where he is going. And when I put on my doomsday hat, I have no idea if he’ll ever have a license or be able to drive a car… I don’t have a map. I don’t know what road lies ahead. But as Doc Brown would say “Where we’re going, we don’t need roads”. Good thing because we’re off the map in all of the worst and all of the best ways.

** His "cheese" face. **

So this where we are. It’ll change by tomorrow. And it won’t. This is life with autism.