As I visited with a friend about the start of school, I could hear him starting to have trouble. It's not a single-sense recognition. When he hits, yells, cries... when he's losing control... it hurts us too.
Quickly excusing myself and taking a deep breath, I hurried down the short hall to his side. Squatting down at the table, patting his back a bit with my hand, I heard he was having trouble getting used to a change in transition. I thanked someone I consider one of THEE most amazing people I've ever encountered for being who he needs, and started to try to help him.
Remember, I usually can't stop these things. Usually, I can just stay by him, speaking in a calm voice, using few words. Or that's the aim anyway. I'd be lying if I said I'm a champ at dealing with meltdowns.
Normally when this happens, whoever is around just kind of either carries on, not judging or bothering us. Some will carry on but keep an eye on us, staying in earshot in case I need help. Both are invaluable reactions.
One little boy in his class approached us. With wide eyes and the sweetest, most innocent demeanor, he said "I've been in his class before. He gets CRAZY!"
Ouch.
I smiled, unsure what else to do or say, and said simply (and as kindly as I could muster), "I know."
Because I do know.
As I made my way to the service, all I could do was fight with the temptation to be devastated. He called my kid crazy. He called my kid CRAZY!
But you know what? Yeah. He used the word "crazy." But he didn't say Ryan IS crazy. He simply walked up to me, not knowing I was Ryan's mom, and said something he thought would make me okay with what was going on. And let's not forget that this is a little boy we're talking about here.
Once the initial emotional ouchie of hearing "crazy" used to describe Ryan's behavior, my mind scrambled with the thought that I missed a teachable moment with that child. What could I have said to help him understand?
Then it hit me. I can't explain it. Yes, I can give the clinical reasons why I THINK he hits. I can give all kinds of perspectives from blogs and books and doctors and therapists. I can tell you how it feels for me to watch and hear it, and I can tell you what his chest looks like at the end of the day when he's had a rough one. But do I really know WHY? And why would I act like it's no big deal when this is one of the most if not the most frustrating, painful, potentially crippling part of autism for us?
As it stands, I'm glad my response was what it was. Not too much, not too little. And as this child (hopefully) continues to grow alongside Ryan and our family, he will maybe not be afraid to come to me with questions. He's obviously not afraid to get too close to Ryan, because he had to get pretty close to be able to speak to me.
I do worry what Ryan heard and how he processed it. But that's another reason why I'm glad I didn't make a big deal of it. I'm definitely not suggesting that it's okay for adults to walk up to someone struggling in that way and say anything other than, "what can I do?" This was a child, expressing to an adult what he has witnessed. I choose to believe that he was being honest. I choose to let go of the right to be upset that the c-word was used in reference to any part of my kiddo.
You know what else? I'm thankful that I can do that now. That after years of being stared at, glared at, and having the occasional rude comments and the more common whispers, my security in who I and who Ryan is in the eyes of God can overcome the need to defend.
There have been times all too recently when I was half afraid to leave the house, and more afraid to be around people. Too afraid of the pain of stares and insensitive, ignorant comments to step out and try anything. And that still lingers in many ways. But there is hope and comfort in realizing that my best is all I can do, and Ryan's best is all he can do.
Thanks be to God for holding my tongue and comforting my heart, and for allowing me to see the honesty in a young boy's eyes... and that, for that moment, I experienced the most honest, pure form of empathy imaginable.
And don't you worry, church friend-parents who are reading this... I have no clue who this kid is or who he belongs to. But I do know that he was a sweetheart.
If you don't want a good, life sized picture of life with Autism in the bathroom, don't read this. Pop on over to Pinterest, maybe even close the lid and do something that doesn't involve a screen.
We're having another poop war. All out, I'm not going and you can't make me, poop war. It started last night. He never went. We had to let him to go bed. He couldn't take it any more and we couldn't either.
Today, we're back at it. He completely messed his underwear, and to spare you the details, we know he needs to go. He's done this before. The question looming over this time is the reason. Usually it's due to a change in routine. I don't think there have been any. I've tried to figure out a reason. Believe me, I've had time to sit on the bathroom floor and think.
Why the bathroom floor, you ask?
The last time I let him sit on the potty when he was poop-warring, I found poop smeared on the walls. A new low for us, personally. I don't think that it's art to him, or necessarily fun... or maybe that's just my desperate attempt to make things okay. I think it's more "eeew, this is on my fingers... oh look, a wall" and not an attempt at decoration. But in yet another fit of normality, this morning when this started, I decided I'd be able to work around the corner while he did his thing. Silly mommy.
So I sit here at the very tippy-tip of my rope, after several failed attempts at bribing my son to just please let it out already, let it out and you can have iPad, vSmile, blahblahblah... and I'd love to say it's all figured out. But it's not. I thought surely he'd go before his Daddy left for solo and ensemble contest this morning. Nope. I guess I figured typing was better than looking at the mess I have to clean up when he does finally go. At least Maelynn's asleep and Richie's playing nicely.
When he did this the other night, the only thing that worked was telling him he had to go or he couldn't go to school. If he didn't go to school, he couldn't see B, his therapist after school. He went. But not before I completely broke down, tears spilling over and bribes coming through sobs. I listened to Eric getting the littles ready for bed, the happy sounds of reading stories, and I was struck by the difference. The difference finally crushed me. Eventually he went, his daddy gave him a shower. He even hugged me good night and said, "thank you, mommy." Then I really lost it.
It's sensory. It's all somewhere between his sensory-junkie nature and control, and I can't tell when it's coming. He's been doing so great playing iPad, and now, apparently, he will have to back to small amounts of time, very supervised. Meaning even less time to spend doing other things... anything... else, including housework, cooking, all the stuff mommies are "supposed to" do.
I'm furious, heartbroken, frustrated, miserable, confused, and exhausted.
I'm having a little bit of a hard time accepting that I'll now be cleaning poop off my walls.
I'm not happy that last night's time with Eric turned to begging and bribing.
I'm mad that today has turned into begging and bribing.
I'm sad that I can tie his shoes, I can help him dress, I can comb his hair, but I cannot make him eat or eliminate. I can't help with that. I'm tired of feeling helpless to help him.
I'm hurt for all the other kids and parents that go through this.
I'm tempted to snap and scream at the next person who says, "Oh, that's every kid. He's just fine."
It's not every kid.
It's one in between 80 and 240, according to the CDC.
Mine is one of them. Although I'm tempted to tell you to be thankful it's not yours, I won't. That sounds too much like an insult to my son. He's precious. He's smart. He's funny. He's loving. He's a beautiful little guy. Yes, he has challenges, but he's as God made him. And I wouldn't insult him or cut him down for the world.
Instead of telling you to be thankful that your child doesn't share Ryan's challenges, if I had to tell you something to be thankful for, I'd tell you the one thing that works for me.
And we know that for those who love God, all things work together for good for those who are called according to his purpose. ~Romans 8:28
For I know the plans I have for you, says the Lord, plans to prosper and not to harm you, plans to give you a hope and a future. ~Jeremiah 29:11
Let us hold fast the confession of our hope without wavering, for He who promised us is faithful. ~Hebrews 10:23
This is the truth. Doesn't take away problems. Doesn't act as a magic genie to give us what we want and give us all the answers. And if I told you I smile and shout, "Thank you JESUS!" every time I find poop smeared on the walls, I'd be lying. But these promises are what I hold onto. The knowledge that everything works for the good, whether it looks good or not, and his plans for our family are to prosper us and not to harm us, and that he is faithful to keep those promises comforts me. I'm not in charge, and that is often the only thing that makes this all doable.
Five hours later, the deed is done, the bathroom and the kid are both clean. We lived through it. But it's not over. It's not the last time, and it's likely not the worst either. He's now happily playing iPad, munching on cheerios with his sister. I still am not sure how to avoid this, or if anything I do to avoid it will help. All I know is that it didn't shock God off the throne, and that, in fact, I am not in charge, and boy, am I glad.
Thanks be to God, the maker of heaven and earth, and the calmer of my soul!
There's so much randomness that goes on here, even with the routine. Right before I started this post, Richie came to the kitchen table and held up his little bare foot. "My foot hurts." Big pouty face. Sweet pouty blue eyes. "Where does your foot hurt, sweetie?" He looks at me like I obviously shouldn't need to have that explained, and says "Onna floor."
Alrighty then! I smiled, kissed his foot, and he was on his way.
Back to typing... thinking...
Realize I heard a toilet flush. At the same time, realize I sent Ryan to the bathroom because I caught him trying to hide and uh... "use" his pants. CRUD! I forgot. So I hop up and run to the bathroom, where I find my son experiencing the wonders of sticking the end of the toilet paper, still attached to the roll, in the toilet and flushing. No idea how much WAS on the roll, but now there's hardly any. Oh dear.
So I start to freak out, and call my Mom... the usual putter-downer of my freakouts. Hearing her laugh calms me down, and yes, the toilet isn't overflowing. Whew.
Back to work. Sorta. Soon Mae toddles up clutching her bedraggled pink bear, spouting "shish?" through her binky. "Yes, sweet pea, you can have some goldfish."
Richie again... "Wanna go downna swiiide?" He loves to use me as a slide. Housekeeper, cook, playgym... that's me.
Start typing again, and I hear a thud, then a scream. "Richie, what happened?" After some prodding, I learn that Mae was jumping on the couch. Then she fell. No, I hadn't been gone for more than a minute or two!
This is what happens when I start to do anything I start to do, and even if you haven't any special needs kids, I'm sure you can relate! Kiss a boo boo here, hunt down a lost lovey there. Hug a teddy bear or dolly here, put down a revolt there. Put out a fire here, clean up accidents there. Don't even get me started on the autism end of things... Ryan has had a meltdown stemming from my refusal to out a sweater on him three days in a row. It's only 107 outside. And no, it's not cool in the house. It's cool enough to be healthy, but not to need a sweater! In the afternoons, it's time to wrestle... well, drag his brother all over the house by the arm, kick him off the couch, etc. It gets interesting.
Now I know that all these things are important... after all, it's the daily day-to-day where kids learn who they are, who we are, what to believe in. The day-to-day is where the rubber meets the road, folks. The hard part is in the staying afloat through all the crazy. The mundane. Literally, every morning from 7:00 to about 11:00 is spent on others' toileting habits for me! We're almost through potty training Ryan, though there are still accidents at times. Richie's just starting potty training, and Maelynn is still full-time cloth diapered. To tell the truth, the completion of the tasks of changing, wiping, flushing, coercing, rewarding, scrubbing potty accidents from the carpet, even picking up poopy pebbles from the carpet isn't a problem. It's easy to do those things joyfully, because I always wanted kids. SO very grateful for their presence in my life. The thing that makes me frustrated?
What I don't get done.
I love to make bows. Haven't made a bow in forever. I have patient friends, thank goodness. I have project after project looming on the horizon. Mae's room was painted, so was the bathroom when Eric was still home and able to work from here. I cinched up my big girl panties and painted the walls of the kitchen last week with the kids here under foot. I'm so glad! It's this beautiful, cool, clean, soft blue, and I'm hoping it will help calm all of us... but I digress. There are books I want to read, have started to read, and haven't finished. I can barely keep up with dishes and laundry and cooking, much less everything else. The stuff I feel the worst about is the keeping up with what the kids need. I want Richie and Maelynn to be as educated as the next kid when they do start school. I want to be sure Ryan has the tools he needs to succeed... and that's such an amazingly loaded-down statement there's not a way to describe it.
Sometimes chasing after all these things at once catches up to me. There are times when I cannot feel hope. I just can't feel it. Nothing is inspiring. Everything is too hard. Being screamed at so much, peppered with requests for this that and the other, protecting the littles from their brother's insistance that they're toys... and there are the changes looming on the horizon, and the ones we've already been slapped with... nobody tells you that there will be a time when, all of a sudden, he's a "big boy". All of a sudden, all the people who thought, or acted like they thought, you were just an overprotective, diagnosis-as-an-excuse-for-behavior type of parent begin to see that you weren't kidding. This autism thing becomes real in an instant. No, a gut-wrenching, heart-dropping series of realizations. Several slaps. Hits to the gut. Many of them below the belt, underhanded... dirty.
The funny thing is, though the numbers are growing, with 1 in 110 kids diagnosed with and ASD, so few people want to help you deal with it. You become a member of the "it's just too hard to leave the house and no one understands" club. You are handed a house on "Autism Street", and whether you like it or not, you get to deal with it all. Your online world of people who get it grows. Face to face relationships with people who really know you, who trust that you're doing your dead-level best to keep the ship afloat, have wealth far greater than diamonds. They become like oxygen. Somewhere in the middle of neverending potty training messes, toys, meltdowns, the big boy who's become like a venus flytrap, snagging his brother and yanking him around every time he gets the chance, and the usual kid drama over toys... the little things become huge. One little thing that someone says on the outside magnifies itself in your stress-roasted heart. So much energy is spent staying calm, being his (their) rock... their lighthouse... their outlet to learn to stay calm and deal with things... that it's like the old cartoons where Popeye or Bluto is holding up this ginormous barbell, only to have a feather float on it, sending him crashing through the floor.
I go through the floor about once an afternoon on an average day.
There are so many times I look up when something goofy happens and ask "REALLY?!?!?!" When I'm not calm enough to ask "to what end". Usually this comes as something happens like finding a yellowjacket in the house. The last time that happened, I cried. I actually yelled to God, "Really? Do I really need this right now?!" You just take and take and take the stress, working hard to stay calm, reasonable, rational, until something happens and something has to give.
What gives, you ask?
You do. More and more. You learn what it means to die to yourself and your own desires and even dreams, sometimes several times a day. You learn that this is the greatest gift one can give. You learn that you can do this and still revisit that old person sometimes... just within reason. You learn what you can take, and that you can take more than that. The tears roll, you spill your guts to the nearest person to you or just flat to heaven or both, then jump back in with both feet. You find a way to relax just a little... even for five minutes. The online support group I've found and continue to find is such a blessing. Somewhere between that, the comfort that I take in God's sovreignty, and curling up in my husband's arms is where I survive. One of the days last week, as I scanned my Twitter timeline, I ran across a tweet saying simply to stop, take a deep breath, smile. And I did.
The crisis that underscores this whole mess is that I have three beautiful kids. Those three beautiful, amazing creatures are growing and changing. They will not be the same forever. There may come a day when this house doesn't ring with the tinkling bell-like giggles of a little girl being tickled. There will be a day when I wish my sweet girl would stick her bear in my face for kisses. When I wish I could hear Richie's "I wove you Mommy!" given over and over and over. When I wish he'd ask "Mommy pick up a Richie?" with his arms outstreched, eyes wide and innocent. When I wish that Ryan would still fit in my lap... oh wait... we're almost there. I'm honestly a little disappointed in myself. There was a time when I sat in the emergency room at St. Paul's in Dallas, wishing I could back up and do something differently. Anything differently. I remember wishing I could do something that would make the child within alive again. They had to be wrong. They had to be. But at the rate I was losing blood, I knew they were right. As I watched ceiling tiles go by as they ran my bed down the hall to an emergency procedure, I remember begging God to give me another chance at this. And please, please don't let me remember anything. And please God, just let me live to see my Ryan again.
I awoke to the reality that I wasn't going to have another baby in June. But I also awoke to Eric, his sister and her husband. I went home in those wee hours the day after Christmas to my husband's dear parents. I woke up with what felt like a large hole in my chest. My body kept moving, my heart kept beating, but I wasn't there.
Somewhere in between that hurt and autism's hurt is a reminder... or a few reminders. For one, every pain has to be felt and acknowledged as real. No, your pain is no less just because someone else's experience is "worse" or "more complicated". Don't compare. It just causes more hurt. Be there for each other, listen. No judging. None of us are qualified for that. Both the world of autism and the world of miscarriages carry with them stigmas, lack of wanting to acknowledge that anything is wrong- sometimes because it's just too hard, I guess. There's an underground, grass-roots type society with both... and they're both starting to speak out. More and more of the ones who made it or are making it through the pain are reaching out to others on cyberspace, in person, in support groups, on chatboards... and I pray that this will only get stronger. Life is too short to live in pain in secret. It's also too short to let others do the same.
So reach out today. Start your own blog. Stretch out your own arm... your own neck... and take a risk. You might make someone upset or uncomfortable... but you also might make someone's day, make a new friend, or even save a life.
And that crisis of having three beautiful kids?
The crisis is that I might be so busy with the stress that I miss their smiles, giggles, voices... that I might not feel their sweet, soft, pudgy little hands touching mine. God has given them to me for a short time.
So stop. Take a deep breath. Peel your shoulders from your ears. Smile.
I'm gonna do that right now... because it would be a tragedy to miss Moments Like This.
