If He Would Just…Then…

I’m becoming more aware of a fatal flaw in the way I approach life. My inner dialogue has functioned in a constant state of “I will be happy when…”. It’s as if I constantly create these ultimatums for my inner peace, my anxiety, my sanity, and in all honesty, it does NOT work. Because the minute I accomplish one of these little happiness goals, something much more ominous appears on the horizon. And I’m stupid enough to apply this ridiculous technique to every single angle of my life.

I will be happy when this marathon training season is over. Everything will be better once this grant is submitted. If we can just get the house decluttered, then I’ll be less stressed at home. Once Larkin is done with volleyball, then our schedules will be easier. If we can just get insurance to hold Kellen’s hours for one more year (2 more years, 3 more years…), then it will be okay.

All of these qualifiers that I put on my happiness, which in turn affects everyone’s happiness around me. It’s dumb, it’s toxic, it’s the way that I have lived my entire life. How does one change something that has embedded itself in the operating system? I don’t have an answer yet, but I do know that this thought process is the most destructive when it comes to my sweet boy.

Each hope, each fear, each setback is somehow entangled in these If/Then statements.
These are some of the thoughts currently making the rounds in my chaotic brain:

If he’d just stop hitting his head and communicate…
If we could just hold his attention a little better/longer…
If he wasn’t so quick to anger/frustration/despair at the first sign of something going wrong (ha! Who does that sound like?)…
If we could just figure out a way to get him to head to the bathroom in the middle of the night/morning…

The list could go on for pages. All of these things that weigh on my heart, on my soul, that I see as barriers to happiness for all of us. I live in this constant state of fight or flight, and so does he (which thankfully, there is now a whole new area of published research confirming this heightened state in some individuals with autism, and he certainly fits that profile, more on that in a separate post).

And so I have to find a way to break the cycle. I am not as young as I used to be (as the mirror and my aches and pains are constantly reminding me), and I’ve had numerous people impress upon me how important it is to manage my stress, considering I keep myself in a constant state of extreme stress. With that in mind, I’m trying (and failing but at least trying) to change the way I perceive the day to day. Again, I suck at it so far, but it’s a work in progress, and I’m about 1 step into this marathon. What’s helping to give me perspective are all of my OLD If/Thens…like these…

“If he’d just look at me”- His eye contact is pretty amazing these days.

“If he’d just use the toilet”- After a whole lot of pee/poop in a whole lot of places it shouldn’t be, we’re only left with the nighttime pee issues now. I definitely forgot how stressful it was for all of us when he wouldn’t go in the toilet, and I know that this is something that some families never achieve, so we are very grateful!

“If he would just say Mama”- Oh man, that first Mama was truly a miracle moment. We never knew if he would utter a single word, but he did eventually. Now I can say with great pride and wonder, that he yells “Mama” from upstairs enough times in a day that I can allow myself to get frustrated like any “normal” parent that wants to change their name. But while I trudge up the stairs for the 30^th time that hour, there’s always a little smile that remembers how hard we all worked for that word. There’s also the fact that if I don’t answer his call fast enough it will switch to “Daddy” or “Larkin”. I’m pretty sure he views us all as his servants. J

“If we could just get him in full-time ABA”- This is a tough one because we’re beginning the potential transition out of that safe haven, but the fact is that we did it…we’ve had him in full-time ABA for as long as we possibly could.

Again, I could go on and on. I spend so much time worrying about the next hurdle/disaster/meltdown, that I never allow myself a moment to celebrate that sometimes things have gone right. That while it may have taken longer than we’d hoped, we’re closer to our goals. That while I’m staring at the latest hole in the wall, there are fewer than there used to be.
That we’re still standing. That we all still have each other. That there is more love in our home than I give myself time to acknowledge.

I’m not one for resolutions, but I am trying to learn to embrace change (and our life of organized chaos). I’m going to try to stop waiting to be happy. I think I’ll even engage in a little active writing therapy (i.e. updating this blog LOL) to help me think through where we’ve been, where we are, and where I hope we’re going.

Here’s to 2019…may it suck less than 2018. Cheers!

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. 

Gag Reflex

I feel like I've said this a dozen times...I should write more often. Maybe then I wouldn't have fallen down a hole today.

There's a lot I need to fill you in on. I will. For now, I'll focus on today. We started Kellen on medication (after much hesitation) in the fall. We thought it was working, until it didn't. We switched gears and started a new one yesterday.

Points to think about:

I abhor the fact that we have to give him meds, but that's just it...we've absolutely reached the "have to".

I need the medicine to work. Oh God hear me, I really do. We lose him...he loses himself...it's painful on both sides.

The risk-benefit ratio is difficult to navigate based on those points.

With all of this in the balance, we still have to struggle with living in today's world.

Allow me to illustrate in A Tale of Two Starbucks Visits.

We've gotten into a routine every morning, and well, you know autism and routines. We drop off Larkin, we go through the Starbucks drive-thru, I drop off Kellen. For some reason, my Starbucks has become very crowded lately, so genius that I am, I decided that if the drive-thru is too long, I'll do mobile order from my phone, wait a couple of minutes, then take our time walking in. The first two times...cake. We walked in, juice box was already laid out for us, by the time he was drinking it, my latte was ready. The next time...not like that. My drink took way longer, he finished his juice, wanted another, line was way too long, plus my phone and wallet were in the car, drink was finally ready, tried to get to the car, then there it was...thermonuclear meltdown of a now very tall 7 year old right in front of the door. 

I was completely focused on him. But I still see them. All of them. Staring at me. No one tried to hold the door. No one tried to hold my latte as I attempted to wrangle a kid half my size. No one asked if they could help.

But that's okay. I have lots of practice. I can do this, even when they look at me thinking "glad that isn't me".

Fast forward a few weeks...to today actually. Long line again, so we go in. His juice is ready. I give it to him, but he really wants to leave. I try to snuggle and squeeze him, telling him we're still waiting for my drink. We sit, and he crawls up in my lap in a weird balled up position. I can see people looking, wondering why such a big kid is snuggling in like a 2 year old. I didn't care. He was calm, and I love those snuggly moments.

Then he abruptly stood up, has a very loud burp (the kind that every mom recognizes), and projectile vomited in the middle of Starbucks. I immediately (as soon as I heard the burp actually), start ushering/carrying him to the patio door about 20 ft away...he puked twice more before we got there. Then he puked all over the patio, himself, and my sweater (and possibly my hair but we just ignored that the rest of the day). Turns out he doesn't have the "bend over and puke" quite down and "stand and maybe lean forward a little" is so not effective. 

He stops puking as I'm rubbing his back and then starts to cry. I take off my sweater and use it as a towel. Just then one of the Starbucks guys comes out and asks if he can help. Then a woman comes with like 25 napkins, then a few moments later another woman comes with wet paper towels. Both were so appreciated. Another Starbucks guy asked again if we needed anything when we walked back in. They were already finishing the mop up. We had to go back in because I left my phone and keys behind when I tended to him. 

In true me fashion, I walked back in and proclaimed "Do not panic, he's not contagious, just started a new medicine with nausea as a side effect...obviously."

I drove straight to his clinic and said "Help!" They knew it was the meds, so they changed him as soon as he got in. They asked if I was puked on, and if I was okay because they're awesome like that. He went off happy, already eating and drinking again. I drove off and laugh-cried.

Sometimes all we can do is cry. Sometimes all we can do is laugh.

So you know...I multi-task.

We'll be okay. I'm hopeful we'll be past the side effects tomorrow. I still hate that this is yet another challenge he has to face.

The Starbucks incidents were interesting in retrospect now. No one knew what to do when they saw an autism meltdown, but they did when they saw a puking kid.

All parents can relate to a puking kid...only a select few can relate to autism...especially severe autism.

People in general are inherently good. They can't help if they don't know how, they can't recognize the situation if they've never heard it described. 

I NEED this world to understand us. We can handle it. We just need you to accept that we're doing the best we can. 

So I'll try one more time. Back up. Fill you in.

Let you in.

Because if another me is at the tipping point and you offer to help, that matters. A small gesture by any of you could change that moment, that day, that week for someone who really needs it.

Tonight is better. We'll start again tomorrow stronger and ready to face whatever comes.

We're in Hiding

You don’t see us at the grocery store.

You don’t see us at the birthday party.

You don’t see us at events geared toward special needs children.

You don’t even see us at the autism walk.

We’re in hiding…

You’ve heard me talk about how our autism is a little different than what you might be used to seeing. The Asperger phenotype has completely dominated most people’s stereotypical view of autism. Media coverage focuses on the kid that gets to run for the touchdown, sings the national anthem, gets voted Homecoming King. You don’t see families like ours…well strike that, you do, but it’s generally in contexts that you don’t want to see…the children that are abused by caregivers, that wander and are found in a lake, families that have their neighbors leave nasty notes on their doorstep.

I’ll be perfectly honest (shocker right?). Part of the reason that you don’t see us is because we don’t want you to see us. We don’t want you staring, pointing, judging, or even desperately trying to ignore us. We don’t want you giving terrible explanations to your children when they ask “What’s wrong with him?” We don’t want you looking at us like we suck at parenting. We don’t want you to see us and pity us.

But the other (larger) reason you don’t see us is simple self-preservation. We protect our children at all costs. We try to avoid situations that make him miserable…for his sake, not ours, and not yours. But the balance is tough. When do we push him outside of his comfort zone, push ourselves as a family outside of our safe haven? He needs to have a chance to discover the world on his terms, and the people of this world are just going to have to suck it up and deal with it.

Every now and then, we’ll venture to a birthday party. It usually has to be a good friend and someone really familiar with (our) autism. The venue has to be just right (contained), and we have to have an easy exit strategy. It only happens every now and then.

We’ve tried the grocery store so many times. Inevitably, it ends badly, but I don’t even like to be in the Sunday afternoon mayhem (how do you not know where you are going?!?), so I sympathize.

Two weekends ago, we were lucky enough to go to a Special Needs Family Weekend at Camp Cullen. It was a HUGE step outside of our normal, but I’m so grateful we did. Was it perfect? NO! Did he lose his mind multiple times? YES. Would we do it again? Absolutely. Because the good outweighed the bad. Because we came out of hiding just for a little while. Because while we may have been the most “severe”, no one looked at us negatively, they simply saw a family trying…a family out of hiding. That weekend will get its own separate post, but it’s worth mentioning in this context. I’ll just say that I know there were many families who would have looked more like ours that didn’t even try to come because they were afraid. And that I understand. And that I second guessed myself 500 times. But that it was worth the risk, and I hope I can encourage other families like ours to give it a shot.

Fast forward a week to the autism walk here in Houston. A friend posted that she was with us in spirit but wasn’t there in person because she knew her child’s limitations. I was there, but I was wearing my scientist hat. I was lucky in that my entire work team was there, and we had a great morning of talking with families about our study. But we didn’t go as a family, we didn’t have a team, Kellen wasn’t there. I saw lots of autism families, lots of autistic children, but very few that looked like us. We don’t go to these kinds of events, our kids can’t take it right now. I’m grateful for those who can, but as I saw one family trying to work their way through a major meltdown with a kid around Kellen’s age, I was taken by the fact that even these specific autism events are NOT geared to the needs of OUR kind of autism. It was loud, it was crowded, it was spread out and confusing.

We made the right choice in not taking Kellen to the walk, and we made the right choice in “going to camp” as a family.  We choose our outings based on Kellen’s needs. I’m done worrying about what other people think. Yet, we need more opportunities that welcome the more severely impaired of our clan. They deserve more. Our families deserve more chances to try.

So just know that you may not see us, but we’re here. We’re surviving the best we can. And when we do make it out into the big scary world, please please be kind. A smile from a stranger while we’re trying to calm a screaming flailing child can be just the fuel we need to get through a tough moment. Be accepting, be kind, be open-minded, and if you have a question, just ask. Larkin is generally our family spokesperson, and she would love nothing more than to talk to you about her brother and autism in general ;)

Ask a Silly Question, Get A…Wait, Did You Just ANSWER?

Unanswered questions…this describes autism so perfectly both literally and figuratively. We still don’t know how autism truly manifests, why it happens, how to treat many of the devastating symptoms. We still don’t know the best strategies for effective communication, which leads to many parents asking their children questions and waiting for an answer that may never come.

I narrate our day. In the early days of motherhood, the “experts” all said that you should talk through what you are doing with your pudgy infants and curious toddlers and that you should do this using normal language rather than “baby talk”. So it became a habit, and those of you that have ever held a conversation with Larkin (if she let you get a word in) know that she’s basically been speaking like an adult since she was 3. This is of course in stark contrast to Kellen.

Dose of Reality #3857: Kellen is what you would call “limited verbal”. This means that he graduated from “non-verbal” (which is generally the extreme where no spoken words are used to communicate daily), however, we can no means have a conversation with him. His receptive language has increased (meaning we can see that he’s understanding what WE are saying), but his spontaneous language has been restricted to basic wants (“I want milk.”). And it is very, very, very difficult to get him to answer a question. He generally just echoes the question right back to you.

Regardless, I narrate our lives, and this includes constantly asking Kellen questions about what he thinks, what he’s doing, etc. and never expecting an actual answer. My expectations are going to need to change.

Kellen gets upset. Sometimes we can determine why pretty easily, other times we’re guessing blindly, and a lot of the time we don’t have a freaking clue. He’s historically gotten upset when one of us leaves the house (especially me), but it’s been pretty sad/amazing that now he’ll actually ask for the person. Looking for me, he’ll wander the house saying “Mama.” He’ll now notice that Patrick’s truck is gone and start saying “Daddy.” And considering that “Daddy” took an awfully long time to become part of his limited vocabulary, I know Patrick secretly loves this. It helps to know why he’s upset, even if there’s nothing we can do about it besides comfort him.

So Patrick gets home from the grocery store on Sunday. Kellen is at the front door saying “Daddy”, and then I send Larkin out to help him with the bags. As soon as she steps out, he whines, and I say “What’s wrong buddy?” to which he replies “Larkin!”

This was the first time he had ever asked for her. (Yes, I shed a tear, shut up).And then that afternoon turned into a series of ridiculous moments that no one could have predicted.

* Kellen with a concerned look on his face was looking under and around everything downstairs. *

Me: What’d you lose buddy?
Kellen: Perry

Holy crap, he had misplaced Perry the Platypus and actually TOLD us what he was looking for.

* Kellen has been carrying around a very carefully constructed Lego creation for a few days now. I made a point of taking it and trying to see if just maybe it was “something” to him. *

Me: What is it?
Kellen: Rescuebot

What the? And then we look at it and “see” the head, arms, legs that do in fact resemble a Transformer, and certainly the primary colors of the Legos lend themselves to the Rescue Bots. And you see this is another one of those things that “autism isn’t supposed to do”. They’re supposed to view the blocks as just that, blocks. They’re not supposed to create something imaginary and then proceed to play with it as that imaginary thing; they’re supposed to play with the objects as they are or in a restrictive and repetitive way. Yet, we see more and more of our kids showing us how wrong many of these assumptions are.

* Kellen pulling my arm because he wants me to go somewhere. I’ve started not going with him until he verbally communicates something, which at best is “Downstairs” or “Outside”. *

Me: What do you need?
Kellen: Potty

Mind you this is a glass half full moment. He had pooped in his underwear (still working on that one, suggestions welcome LOL!), but he had come to get me, had told me where we needed to go, and then of course I HAD to go.

* Kellen again pulling my arm a while later. *

Me: What do you want?
Kellen: (you can see in his face that he is thinking really hard about what word he could possibly use) Come on!

Are you kidding me? So after much laughter, of course I went!

* And then I’m sitting with him and watching him carefully select a few blocks and arrange them just so. This is what he ended up with. *
So I took another shot.

Me: What is it?
Kellen: Little Einsteins (and then proceeds to fly it around like Rocket).

I’ve asked questions of him for years but had resigned myself to the fact that I was talking to myself. Not anymore. I’m once again humbled to remember that we are on HIS timeline, not the timeline dictated by any study, any doctor, and certainly not by me. Thanks buddy for again making me throw the status quo out the window.

Why I don't post as much as I should...and why that's about to change

I know that I should post more.

I compose at least a post a day in my head...but life gets in the way.

I said something recently on Facebook, and I was struck by a few friends' appreciation of my honesty. It's something I do well, and I'm basically honest to a fault. For moms like me, for families like ours, for kids like Kellen, I need to do a better job of transparency. 

So here it is...my promise to post at least once a week.

Why is this important?

Some of our voices are getting crowded out. I used to closely follow another autism mom blogger who had various adventures somewhat similar to our own, but then our paths diverged. She began to focus far more on what adults with autism needed rather than what mom/child pairs (like us) needed. By all means, her points and priorities are valid and needed...but it's not what WE need. When that mom is so focused on (and let's be honest "parading") asking her autistic daughters permission to post pictures/stories online, well, let's just say that their autism is NOT our autism...at least not right now. While I absolutely respect her/their approach, we are in an entirely different game. Do NOT attempt to speak for us, and we will happily show you the same courtesy.

Anyway, the point is...I had one, you see... Get ready. A whole lotta truth is headed your way. 

I'm strong enough to write it. Are you strong enough to read it? And are you brave enough to stand up for what we believe in?