Adventures in Autism

Sons and Broken Hearts

My son has a very sensitive heart. I know this about him. I love this about him. But I am so not looking forward to that very first broken heart.

There are a lot of things we have to accept that we will miss out on in life, having a child with special needs. I don’t believe, however, that my son will be exempt from a broken heart. Sure, we’ve walked through bullying, kids picking on him, calling him names, even a few of those little rat b-a-s-t-a-r-d-s calling him “retarded”.  But I think his first broken heart will be the hardest.

You see, he loves the ladies. Loves girls. Oh yea, like that. He has a crush on this new girl he met at church. These girls are never his age. They are always younger or older, never spot on. This one is older. And I convinced him to try the youth group there because I said she would be there. I don’t actually know if she’ll be there, but I’m going to have to ask her mom now if she will be.

Jalen is sweet and kind and definitely a doormat when it comes to girls. He has charisma, I’ll give him that. Girls tend to like Jalen. He’s a girl’s friend. But we all know what that means:

“She put you in the friend zone bro.”

It is inevitable that he will come upon one or two broken hearts in his teen years. He’ll like a girl and she’ll end up liking “the bad boy” instead. See where that leads ya sister. Two kids and a bout with chlamydia later, you’ll be singing a different tune.

Jalen is the nice boy. The sweet boy. The one you bring home to Mom. He’ll charm her socks off too. Moms love Jalen. What’s not to love? Look at that face. He still has chubby baby hands!! Oh, this teenage awkward phase…no one escapes it, but my son still comes out lookin’ cute!

Jalen will inevitably have his heart-broken, stopped on, left out in the rain. I was reminded of this while watching Cougar Town reruns the other day. (I know, I know, it was never that good but I still watch it.) I think the worst part about parenting is knowing that there is so much that you have nothing to do with and you have no control over and you can’t do anything about it. You’re just…. stuck. Stuck to watch them learn their lessons and deal with their pain and their bad choices and you just shrug, because what the hell else are you going to do…? And then you go home, and you reach for the Ben and Jerry’s and you eat your feelings and cry in your closet until your husband rudely opens the door and says, ‘What the hell are you doing!?!’ Men. They don’t understand a Momma’s heart. But I’m pretty sure they understand a broken one.

For every broken heart your baby will have, your Momma heart will have an equal scar dug into your own to match. It is never easy. It is never fun, this parenting crap-shoot. Who invented this anyway!?!?

Sometimes we’re sidelined, as parents. Sidelined to watch the whole damn thing play out, even when we know the outcome. Even when we know they will lose the game, we still have to sit and watch from the sidelines. The sidelines are no fun. And the older they get, the more we’re benched.

I’m not looking forward to these teenage years. For now, I guess we’ll stick with therapy and Ben and Jerry’s. (I hear they make a mean dairy-free now!) Until I’m legally allowed to keep him locked away in his room until his hormones level out and he becomes a decent human being again that is…

Oh well. One can dream.

Where’s your faith?

I was bolstered with this question this morning after reading Isaiah 47.

I’ve been in Isaiah for about a month now, maybe more. It is not my favorite book. I was led to read Isaiah though and so here I am. My next stop is Micah.

In Isaiah 47, the prophet is talking to the leaders of Babylon. He is telling them what fools they are for putting their trust in their witchcraft and idols and even in other people, saying how when they are defeated and their kingdom is no more, no one will be able to help them, those they counted on before will fall away.

So, I had to ask myself this morning: where is your faith? In other words, what am I trusting in more than God and who am I counting on instead of Him?

Countless times I can tell you I’ve relied on my husband more than God, but I haven’t ever fully trusted him. That sounds backwards, but it is true in my case. Because of our ridiculous backgrounds we both have trust issues. We don’t believe we can fully submit to and trust the opposite sex, and rightly so. We’ve been burned more than our fair share and we still hold on to some of those grudges that are just too hard to get past. And for some reason, we take it out on one another.

Not smart.

I can also see many times where I’ve put my trust in myself more than God. Especially when it comes to parenting my son with autism. Ugh. My daughter is a totally different story. I do not worry about her. My husband does.

Constantly.

Like it’s his job, but me?

I worry about the big one.

And by all appearances he’s doing really great, but deep in my heart is this longing for him to be better, do better, make things easier for him. But I’m doing him the biggest disservice by trying to make his life easier. He’s been given the crappy end of the stick most assuredly.  He’s been handed a bag of crazy that he didn’t ask for and isn’t his fault. He has challenges we don’t yet fully understand and therefore make him feel like he can’t understand them either. And his whole life people have been making accommodations for him, and he wasn’t even sure what that meant until 4th grade. That was the year we, collectively, ruined him. He started feeling the weight of his disability, seeing the eyes of others staring at him, judging him, not understanding him, and he started realizing he was different, and actually caring about that.

Up until that point, he knew that he was different, but he didn’t care. How can I get that back for him?

And that is what keeps me questioning where my faith is…

 

The truth is that no matter how hard we work to shield our kids, protect our kids, helicopter our kids, shit is going to happen to them whether we like it or not. We can keep them away from social media, we can monitor their cell phones, we can manage their friend group, but in all honesty, it only delays trouble, it doesn’t prevent it.

It’s like my favorite line from Finding Nemo:

Marlin: “I promised I wouldn’t let anything happen to him!”

Dori: “Well that’s something dumb to promise. If you never let anything happen to him, then nothing would ever happen to him.”

That Dori was on to something.

Don’t get me wrong, I am ALL for protecting our kids from predators and making sure they are making good choices, but also knowing that they will inevitably screw it all up and I will have to figure out a way to discipline them when they do. I tell my kids this all the time, but I doubt they believe me: I don’t like to discipline.

I know right? Me? Nope. I actually hate it. And I feel horrible doing it and I just know I’m screwing up their little hearts when I do and they will hate me for it, but I’m the disciplinarian in the house and it must be done. So, I take the bullet.

The funny thing is that when I do, they end up loving me for it more. My daughter, just yesterday, acting like a total bratty patty, threw my book on the floor because I moved her iPad so it wasn’t so close to her face, and thereby hurting her precious, perfect eyes. Uh, you’re welcome kid. Glasses won’t always be en vogue and you’re gonna want to thank me for saving you from that bill when you’re older.

I sent her to her room for acting out and being way too sassy for a Thursday morning. She stomped up the stairs, told me how she didn’t like me anymore and didn’t want to play with me, and blah blah whatever else five-year-old sass-machines say when they’re pissed off. It makes me laugh really. Which also drives her crazy. Win-win.

Five or so minutes later here she comes down the stairs and what does she want to do? Cuddle with me. She climbed up onto my chest and laid her head down, her way of saying sorry because she takes after her momma and those words are not necessarily easy for us to say. She just wanted to cuddle. And my Mar is no cuddler. But here we were, post discipline, post traumatic event, and she just wants to cuddle with her momma. And I felt like that was a win. I did the hard thing, as my friend Lavina would say, and I even got some cuddles as a reward.

Now back to the big one: Because I know way too much about the evils of the world, my head is a regular movie roll of all the awful, horrible things that can happen to a 13-year-old boy in the gym’s men’s locker room. If he even takes just a tad bit longer than I am comfortable with, I’m asking personnel to go and check on him. I’m checking other locker rooms. I just KNOW someone has kidnapped my adorable, albeit gullible, son and taken him to Mexico to sell him for sex and I let it happen on my watch. Or some old man is showing him his junk in there and he’s cornered and can’t get out.

Both of which are terribly plausible considering the world we live in today and just FYI, when I was his age, some old guy DID show me his junk, while on a bus, stopped at a stoplight, so I was basically cornered as well.

But how is my son ever going to trust himself if he is not given the opportunity to exercise that trust-muscle, even at an early age? Sometimes I just need to quiet the Worried Mama Committee in my head and take a deep breath and trust that God is ALWAYS watching. He is also keeping an eye on my baby even when he is not with me. Right now, my son is at my ex husband’s for several weeks, and he is not being parented the way that I would parent, which for any special needs mom and someone who still deals with control issues is not a fun situation. I tell him all the time to “make good choices,” “be respectful,” and all that mom-stuff. But at the end of the day, I have to trust the process. I have to trust that even though he WILL inevitably end up with some scars and some broken hearts and no one comes out unscathed, that God is still God. And that I can put my faith and trust IN HIM and Him alone and He will guide my son through.

My son loves Jesus. He gave his life to the Lord at eight while attending a day camp that Pine Cove puts on during the summer in the city. He understands the weight of his decision to choose Jesus and he is very well aware of spiritual implications of that decision. He sees things that I don’t see and he is very gifted in some of the gifts of the spirit, even though he isn’t quite sure what all of that means just yet. I shouldn’t be worried about him, but I always am. I just can’t help myself. It is because he has special needs. If he were any other child, his mother wouldn’t be so up his butt all the time. But he is who he is and I am who I am, so here we are.

Where is your faith?

Are you trusting in The One who is in control of it all, or are you trusting in yourself, your friends, your connections, your abilities…? Or are you trusting in The One who IS able, is the word itself, “Able”?

I am not able. Not even close. I try and I fail and I will keep trying and I will keep failing. Not always, but a lot of the time. That doesn’t mean I give up. That means I trust in my God enough to shift my faith towards Him. He will carry us through the fire. He will make all things new. He will guide us in a cloud by day and a pillar of fire by night. He will. He just will.

But am I willing to trust Him in that, am I willing to shift my faith from myself to Jesus…? I’m sure gonna try. And even when I fail at that most days, He will still be there to pick me up and help dust me off. guilt. No shame. Just the ‘Hey, let’s try that again,’ I need every once in awhile.

 

 

 

Raising an American Teenager

One of my worst fears is that my son will turn into a douchebag.

Oh yes. I said it.

I can’t quite put my finger on whether it would be worse for him to turn into me, or his father. Both equally bad in their own right, but either way, the kid does not have genetics on his side.

I was thinking about this last night as my husband was relaying the conversation our son had with his barber yesterday. My son is hell-bent on telling anyone who will listen how “rich” his (biological) dad is, and how he can “afford” certain things, that apparently we can’t. This drives me crazy to no end. First off it is rude and presumptuous for anyone to talk about how much money they make or how much money they spend or all the crap they buy with said money. And I’ve told my son that. But here he is, spilling his guts to the poor little lady who cuts his hair. It is bad enough the kid has to endure two families, and two very different families at that, every few weeks and several in the summer. It is bad enough that I was young and stupid and careless in my decisions and now he has to pay the price for it.

I see him act completely different around them than he does around us, and I hate that for him. The fact that he thinks he can’t be himself, just straight across the board…those are the kinds of things that keep me up at night. What is he dealing with that he feels like he can’t just be himself, even if that is a 13 year old with a crappy attitude and a chip on his shoulder…? I’d take honesty over acting any day.

I know it is especially hard for someone like him whose brain doesn’t work the same way as everyone else’s. I know he has his own set of struggles he deals with on the daily. And I know I can’t live his life for him. And I think that is the hardest part for me.

You see, I don’t jump on here to write about things that bug me or vent or talk bad about someone else or complain about my life and my kids, because I think after everything I’ve been through, my life is pretty damn great. I write because it is therapeutic for me and it helps me breath a little easier and sleep a little better. Not much, but better. In fact I’ve been up, wide awake, since 5:08am. Clearly, I’m not getting the quality sleep most seem to find.

I never want to draw the line between us and them. I never want to make Jalen feel like he has to choose one set of parents to “like” more than the other. And I never want to point the finger and say “they” are the problem, because I know we are all doing the best we can with what we have been given. Or at least that is what I’d like to believe.

I just don’t want my son raised in a world is money is king, where chasing the almighty dollar is the only purpose of his getting up and going to bed. I want him to be successful, absolutely, but I don’t want his success to be driven by a need for the greed that is masked in “The American Dream”. I don’t want my son running on the hamster wheel of consumerism and making this world worse than it already is.

I believe it is our responsibility to raise up the next generation of “better”. I don’t want my son to follow in our footsteps, I want him to do better, be better, and make his own footprints in the sand. I don’t want him to grow up to be selfish and self-centered and disrespectful, or worse, shallow. But how do I teach him, how do we mold him and shape him into the kind and generous young man I know that he already is? How do I keep the world from tainting him and running him into ruin? Can’t I just lock him in the closet until he’s 30?? Maybe 35..?

All I know is I don’t want to be responsible for raising the next generation of douchebags, entitled little a-holes who whine about working, but all they desire is money. One that has forgotten about God and left Jesus in their wake. How do I break my son free from the oppression that is the “gimmes”, where you grab all you can and scrape and claw your way to the top, never caring who you have to step on or step over, as long as it leads you to the bigger paycheck, and more zeros and commas in your yearly salary.

Are we teaching our children sacrifice? Or are we failing them at every turn, all because we’re just trying to give them the life we never had? Are we doing them a disservice but giving them too much?

I don’t believe this is an autism thing or a special needs mom thing, or even a middle class, “American Dream” thing. I believe it’s just a world thing. And I believe we can do better.

I don’t want to be the generation that raised the next generation of douchebags.

So how do I fix that?

Stuck in the Middle with You

I used to be the mom who hated hearing about other kid’s successes. This was mainly because mine was not having success at all and I was drowning in his disabilities. For those of you that don’t know, my 13 year old son has autism.

It’s not your typical autism. He is very high functioning, and most people when they find out admit they didn’t even notice. But of course, but you don’t live with him, and you don’t school him. Just wait. It’s there, lurking under the surface.

Sometimes we’ll be driving in the car, listening to his favorite music, and I think to myself, ‘Man. Jalen has come so far. Good job, Momma!’ And then suddenly he will talk about something really weird and random that only makes sense to him and I’m like ‘oh hello autism. Almost forgot you were there for a second. Silly me.’

We’ve had a hard few weeks. Wednesday was awful and I spent most of the afternoon crying to myself in the other room. We’ve hit a couple road blocks and are needing to seek outside therapy and assistance. Even though he is grade levels behind, there’s no point in him learning about the Revolutionary War if his brain literally can’t retain ANY of it.

I came to the realization that night that I’m not loving my child well. I listened to this podcast where a mother shared about loving her gay son. She was a woman of faith, she loved Jesus, her son LOVED Jesus. Her son grew up in and was super active in church. When he was 21 he came out to her and her whole world was turned upside down. She searched and searched for places, groups, material, anything she could get her hands on to advise her in what to do in her new situation. She loved her son. That’s all she knew. And she knew “shunning” him was not an option. She came across another woman who, in a similar circumstance, wrote about her experience when her son came out to her at age 12, and how he inevitably ended up leaving the family for a year and a half and falling into a life of addiction. When this woman’s son came home finally, she made it her business to just love him and love him well. Love him unconditionally, just because he breathes. (Full story found here). After many, big, sobbing tears, I realized I wasn’t loving my son for who he was, I was too focused on the things he was not.

This isn’t my first rodeo. And this isn’t the first time I’ve felt this way. It is so easy to focus on what we don’t have, rather on what we do have in this crazy life. I wasn’t loving my son well in the way that I should just accept him for who he is, and love him more in the areas where he is only him, and appreciate all the ways he is different.

My daughter is a powerhouse of spunk and sass and attitude. I love her so much for all of that goodness. She is also great at school, she loves to make friends, and she doesn’t yield to anyone else’s demands on her, which unfortunately gets her in a bit of trouble at home. Years ago, a good friend of mine told me, “don’t break her spirit.” She advised that while my daughter was sometimes hard to deal with, and didn’t do things the way I would necessarily want her to do them, that this would actually benefit her in the long run. Some day, later in life, her spunk and personality and grit would get her to some place that I couldn’t even imagine yet, but that God had a plan for her amazing, tiny life. And I trusted that. I’ve even had dreams where I see such an anointing on her life to be something….amazing.

Jalen on the other hand, I’m positive I’ve broken that poor kid. But I also know he didn’t come into this world broken. It’s not like I’m not loving him just the way God made him, because God didn’t “make” him autistic. He was a year old when autism hit us like a ton of bricks. And I’ve dragged that poor kid through the mud and muck of my marriage to his father and consequence of our divorce. We’ve moved and changed schools and programs, all in the search of something “better”. My husband will continually tell me to stop trying to fix him, he isn’t broken. But to me he is so broken, and I totally feel responsible for all of it. So yes, I am continually trying to “fix” my son. I worry about him constantly. I worry he is going to be living in my basement for the rest of his life. Luckily we don’t have a basement, but you get the idea.

I’m not fully trust God with my son. And the sad part is I know that. And yet I’m still not doing it. I still carry around so much guilt and anxiety about the way I messed up, how I didn’t protect him when I should have, and how I still can’t quite get him to where he needs to be. And the worst part is, I knew the typical Jalen. I had a great glance at this amazing kid who was totally normal in every way, excelling even, and then just like that…he was gone. And now all I see is him struggle and be miserable and agonize over school work and chore work, and whatever else decides to bug him that particular day. Some days I just want to hear him laugh all day, or see him smile. Don’t get me wrong, he does laugh and he does smile, but not the way his sister does, and not the way a typical 13 year old should. Some days are just dark for him. And some days he just speaks a completely different language than me that I’m dying to understand.

But these are the days. These are the struggles. This is what they call, “the messy middle”. And anytime someone lovingly tells me, ‘one day these days will be over,’ I secretly think, ‘THANK GOD!’

So what do you do, when you’re stuck in the messy middle…? If I had an answer to that, I probably wouldn’t be writing this, but I’m trying to figure that one out. Above all else, I’d like to enjoy my son the way he is, the way he became, and trust that God will make lemonade out of these lemons in his life. And that it will be the sweetest lemonade anyone has ever tasted, and that one day I’ll be able to look back and say to myself it was all worth it. But when you’re in the messy middle of it all, it’s so hard to see that day ahead, and believe it’s there.

So here we sit, in the messy middle. If you’re there too, just know I’m with ya. We’ll get through this. Middles are messy. There is just no way around it.

 

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For more about our adventures in Autism with “Blue” aka Jalen,

follow this link to my blog:

The Boy Called Blue Blog.