My Quirky Kid: Turbulance

*this was originally written in June 2012 and was not published then for obvious privacy reasons. But I'm publishing it now because I want to document all the valleys-it will make the summit that much sweeter. I promise this isn't a pity party- just a raw moment in motherhood ;)

After 45 minutes of unsuccessful attempts to fall asleep, I have decided to spend my wakefulness writing, starting at 10:57 p.m. My motherly soul has been tormented lately and I have no other alternatives than to get it all out, breathe, then move forward.

For the past three weeks, Will has been descending into the valley described as too-many-emotions-and-sensory-issues-for-a-four-year-old’s-body. This valley isn’t particularly green, or lush, or beautiful. Instead, it’s frustrating, confusing, annoying, and barren of peace.

Out of nowhere, EVERYTHING has become a huge deal. On the way to play group last week, Will told me he needed a band-aid for his foot when we were two blocks away from the school. I assured him Miss Erin would definitely have one handy and he immediately burst into tears, screamed and pleaded, “NO! No, mom! You have to turn around and go home for a band-aid!” He was downright hysterical and violently thrashing. Will loves play group, loves his friends there, and I’m positive his first teacher crush has been his infatuation with Miss Erin. Yet, as this was happening, I was in complete shock, and I was dumbfounded as how I would fix the problem, because I really didn’t understand what the problem was in the first place. It wasn’t until after I walked Will into the school, debriefed Miss Erin on the situation, and she told Will that she had a band-aid that he calmed down to a low whimper and headed off to class.

Around this same time, without warning, Will has become deathly afraid of taking a bath. What once was his favorite part of the day, is now his worst fear. Now people are hit, kicked, and bitten in an effort to get Will clean. His baths now are approximately 45 seconds long, which consist of me forcing him to stand in the bathtub, while I wash his hair as quickly as possible and hope that the soap running down his body will clean all of his fingers and toes and all other dirty body parts. I make him do this twice a week. The other days I just make him wash his hands, feet, and face thoroughly in the sink, which, ironically, he seems to have no problem with.

Metro rides have also been pushed out of the equation. Too little space, for too long. He caps out at about 10 minutes, and then things get ugly. Same thing with sporting events. Cort wanted to do what every dad does and take his son to a MLB game. Upon entering the park, Will covered his ears so tightly, and kept his ears covered so tightly the entire time they were there that his knuckles turned white. This happens at any sporting event—quiet or loud—including little league games at our local park.

And how was I supposed to know that one day without warning, all of Will’s collared shirts for church were too stiff and restricting when he’s been wearing a collared shirt every Sunday to church since he was 4 months old? Every week we wrack our brain for new creative dressing tactics to get Will ready for church, only for a massive (and I really mean MASSIVE) meltdown to begin. I don’t think I’m even going to bring up neck ties until he’s twelve and starts passing the Sacrament. It will probably take him that long to warm up to the idea.

And twice in the last week while riding in the bike trailer, Will, feeling anxious, has bitten Duke so hard that Duke sported red, dented, broken skin with teeth marks on his arms until he fell asleep at night. Will is a “space” kid. If he’s in too little of a space, bad things happen.

This new set of challenges has created an oxymoron of a situation where I’m very confined and positively stifled, yet I can’t be in my own home. Will’s attention span at home has gotten shorter than ever. Our little 1300 sq ft house is just way too little for his active soul. There’s no place in the house that he can just go and be alone—a required house feature in all of our future living situations. Will is always going to need his own bedroom. He just needs more space than most kids. I haven’t arranged any play dates with the few friends I have because Will—on my watch—hasn’t had very good peer interaction lately without becoming frustrated and violent. My windows of opportunity to feel like a regular adult have diminished, almost completely, minus unloading massive amounts of sobs and vents to Cortney at night. I, now, regularly crave to stay in my pjs for a day with children who just want to watch cartoons all day.
Will usually wakes up around 6:45 and I am at the park with the boys by 8 to play for an hour before school starts. We HAVE to be going out the door, usually, about 45 minutes after Will wakes up or else bad things happen. People get hurt. Things break. People get yelled at. We, also, HAVE to go to the park that early in the morning because it’s empty before 9 a.m., so there’s no one there he can get angry with.

But once we’re at the park, Will is fine. He just needs that room to roam and the autonomy to be free in a safe, fenced-in, area. While I’m not a huge planner of finite details of my everyday life, I usually have a handful of activities that we can do at any given time, and I try to strategically plan the time that Will is with me, so there is never more than an hour Will is at home at a time. It’s just easier for everyone that way. I also formally gave up grocery shopping with Will last week. I had told myself this a few times before, but now I’m finally ready to fully recognize it—the kid just can’t handle it. Far too many little things, perfectly within reach, to throw across the aisle. Sensory overload. And I can’t go grocery shopping with Will without giving at least one judgmental onlooker an earful as they criticize Will or I with their eyes or mouths. I just have to tell myself that no matter how much I’m craving X, Y, or Z, it’s just always better to go to the drive-through or eat cereal for dinner until I can get to the store after Will is asleep.

The irony of this situation is that Will has never been better at school. He has had nothing but stellar reports from both school and play group lately, neither of them noting any mood swings in him whatsoever. But it seems that within minutes of returning home, Will quickly slips into an emotional downward spiral.

Obviously, as parents, we are searching through every aspect of our lives to decipher where this drastic change has come from. And when it’s obvious that really nothing has changed, there’s really only one finger pointed to the problem:

Me.

It’s hard not to feel that I’m the problem. I mean, if he’s doing great at school, but can’t function well at home, wouldn’t that be the logical explanation? I’m pretty much the only variable, since everything else about his life has become streamlined through the blessing of school. Maybe it IS me. I’m not as organized as I probably should be and when Will is used to having concrete activities all day at school, my more relaxed approach to life is just not enough for him. But I have to do other things than his teachers do at school. I have another child to take care of, dishes to clean, clothes to wash, make dinner, and other motherly tasks. It’s impossible for me to recreate his school environment at home, which just digs deeper at this feeling that I’m just not what Will needs right now.

After the last few weeks I have become terrified that Will is going to grow up hating me, because by nature we have a conflicting relationship because we spend so much time (in frustration) trying to figure each other out. I’m trying so hard to be patient and I pray so deeply each night that I will be able to understand his needs easier. But to no avail. He seems to get so frustrated so quickly, I have no way of calming him down until its too late and I just have to let the meltdown run its course.

The other night we were having one such meltdown, and Will ran into his room and started grabbing books off the shelves and throwing them at me, screaming and spitting. He knows the consequence for this behavior—sitting in Duke’s carseat for 5 minutes in the car until he can calm down. And as I grabbed him to take him out to the car, I was in a position, amid all the chaos, to look into his eyes. I was caught off guard by what I saw. I saw into the soul of a very scared, troubled little boy who was completely terrified as to why he couldn’t control his body, or his emotions. His eyes pleaded, “Mom, I have no idea why this is happening. Why am I so angry and why can’t I calm down? I am really, really scared.”

I was completely at a loss for words, but what I really wanted to do was throw up my hands and scream, “Man, totally suck at this!” I can honestly say that all my life I have wanted to be a mom—among a million other professions—and now that I am four years into motherhood, I feel just as clueless as when I started, holding tiny baby Will in the delivery room, not really knowing what I was doing. Is it possible to want something so badly and after all your effort, realize that maybe you're just not very good at it?

I think Heavenly Father sent me that experience to remind me, again, that Will is just as helpless as I am at this whole figuring-out-learning-disabilities thing. We’re both starting from scratch, here. And the learning curve is as steep as Everest—for both of us. We don’t know what we’re doing and we just have to take cues from each other to keep moving forward, one step in front of the other, even though I’m learning the pattern of special needs kiddos is two-steps-forward-one-step-back.

Don’t get me wrong—Will is doing incredibly well under the circumstances and he has improved immensely, but this is definitely a turbulent time for me/us. And more than ever I feel the emotional weight of being a parent of a child with special needs. Cortney is involved as much as he possibly can be, but due to the nature of his work schedule and his availability, that burden has largely fallen on my shoulders. It's me who is shuttling him to and fro to all of his appointments. It's me who is in constant contact with all of his teachers and being the middleman, relaying info between teachers and therapists. It's me who sees all of the day-to-day and worries about all of the tomorrows.

And it gets very heavy.

When I stop and look back at everything I’ve tackled in the last nine months, sometimes I am astounded that person who blazed into the school district and strong armed them into giving Will services, that person who had never heard of Auditory Processing Disorder or Sensory Processing Modulation Disorder in her whole life before her son’s diagnosis, the same person who started a grassroots effort to find qualified and caring therapists for her son’s needs she didn’t even understand, the person who spent countless hours on the internet and as many hours on her knees pleading to know what to do, and who, by and large has succeeded, completely on her own—that was me.

That mother.

That was me.

It was me who seemed to have insurmountable strength and courage in the face of fear and despair and enough faith to move an entire mountain range.
But tonight I am not sure where she is and I am very much alone in this barren, deserted valley, desperate for a break in the clouds and turbulence.

So, tonight, alone, I will breathe.

And breathe.

And breathe.

And move on.