In Memoriam

Eight weeks after I was engaged to be married, my husband to be was deployed to Afghanistan. I was living in a non military community, and was ignorant to the ways of the wives. The military wives, that is. Military wives living in a military community have a support network all their own, coping skills, etc. i wasnt privy to any of this. The support that I got from those around me sounded a lot like, "Afghanistan is a lot less dangerous than Iraq. At least you don't have to worry as much." Although I knew it sounded ignorant, I was grateful for the words and the intentions behind them. So, very unlike my worrisome nature, worry, I did not.

I spent my days writing him letters, making him cookies, and obsessively planning our wedding. I completely put out of my head any remote possibility that he could be hurt. I fit the cliche, "That happens to other people. It won't happen to me." I chose not to allow my absolute worst nightmare to manifest in my head, fearing that if I did, I might cause it to manifest in the world. So I never thought about it. Memorial Day weekend 2005 I got the call that Andy had been injured in an IED blast, and we began the uphill road toward recovery, spending the next 8 months at Walter Reed Army Medical Center in Washington, DC.

Now, as a mother, I worry less about my husband's safety, and totally about my children's. My worst possible fear has become something terrible happening to my kids. Although I maniacally do everything I can to prevent any possible injury or demise, I still choose to ignore the fact that something could happen to them. I allow them to stay with a babysitter, ride the bus, ride in a car with my parents, and play (sometimes) unsupervised. When I was a little girl, if I wanted to cry on cue, I would think about my grandmother dying. As an adult, I would never ever ever want to imagine life without my boys. Not for any reason ever. It is hard to even type it without fearing reprisal.

My faith teaches me that as humans we do not control destiny and that God is in control. I believe that premise. I also believe that bad things happen to good people and vice versa. Even still, I can't help but feel a little superstitious. Although I believe in God's ultimate authority, I still will never ever consider the possibility of life without my children in the world, lest I introduce the idea into the realm of possibility. I think we are all that way, otherwise we might never get out of bed in the morning. We have to keep living life, in all it's sticky floor, dirty laundry, late for work glory. If I worried about every tiny step then my kids might still crawl.

A little boy from my son's school, a teacher's child, was killed last week, on Thanksgiving in an ATV accident. I haven't been able to stop thinking about it since. It has brought front and forward my worst fear. I couldn't rest until I found out how he died, so that I could add the activity to the list if things I would never let Austin do again. An air of sorrow an grief looms large around me.

Although I have a child with needs like Austin has, I tend to treat them as idiosyncrasies rather than debilitating life inhibitors. I am sure to many parents, having a child with Asperger's might be the proverbial "worst possible thing" that could happen to them. We have just kept going and dealt with each new issue in kind, not stopping to think about how horrible it is that this fate has befallen us. We have embraced it.

My heart is heavy for the family at school this week, and for the school family. I did pause mid rant about the messy bathroom this morning and give my kid an extra hug and I love you, feeling fully confident that while we are away from one another today he will stay safe so that we can resume our conversation about bathroom hygiene this evening.



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Everything I Need to Know I Learned in Kindergarten

I have been to Kindergarten several times since my last post...sometimes as a spectator, and sometimes as a participant. Following is a recap of what I have learned.

1. The disparity between my child and the others was enormous.

Perched along a round table amid a gaggle of angelic blond girls, Austin stood out like a sore thumb. From his dramatic expressions in reaction to everything, (shaking his head and muttering, "doh!" Homer Simpson style, or growling low and menacingly) to his refusal to join the simplest classroom event (circle time,) I really had no idea how NORMAL normal kids are. It sounds so ridiculous, I'm sure, but with Austin being my only real frame of reference for typical 5 year old behavior, I was totally out of the loop on how compliant and adult like they really are. They listen, they joke, they look you in the eye. They understand nuances of humor in a conversation. I was used to instant meltdowns, literal translations, and being ignored.

2. I totally underestimated Common Core.

Austin attended one daycare from the time he was 9 mos old on. That school was a 5 star facility with a curriculum and semi annual report cards. I was worried that getting to Kindergarten would be a breeze academically for Austin, that he might be bored. Little did I know Kindergarten would involve memorizing passwords, learning punctuation and parts of speech and homework on the computer (at home!) I was under the impression that kindergarten was a sort of trial run for real school, getting acclimated to backpacks, lunch boxes, no naps, etc. The learning curve on all that is now nearly non-existent. Kindergarten upped the ante and we were left to catch up fast.

3. They are busy in that little class!

It seemed like every second was occupied by some activity or task. There was ample time allotted to finish each assignment, but there wasn't really any downtime. The coordinated effort it took between the teacher and assistant made it extremely evident how difficult it would be to deal with a child like Austin, who struggles with transitions and pressure and authority and failure. I was exhausted mentally by day's end from trying to keep him quiet and in his seat, and on task.

4. The other children are very loving and forgiving.

Believe me, I heard a lot that day from those kids. "Mrs. Johnson? See that table right there? Austin hid under that table one day kicking other kids." "See all that stuff over there? One day Austin knocked all that stuff off and into the floor."
I felt like his liaison. Constantly coaching him through how to respond appropriately and trying to get him to engage with them. "This is Charlie. He's your buddy. You guys have to look after each other!" "Did you guys know Austin has a little brother?" "Guess what Austin is going to be for Halloween?""Austin, look how great Annabella did on this drawing! Isn't she a great artist?"

One day I took him in late after a doctor's appointment and another child had put his book bag in Austin's cubby. We discovered this as the rest of the class was entering the room. They ran over, excited to see him, "Hi Austin!" He responded by wrestling the offending backpack out of the cubby and flinging it to the ground at their feet, his teeth clenched and jaw tensed. I found myself explaining to them and him, calmly, soothingly, trying to make each side see the other's point, like the Jimmy Carter of kindergarten. "It's ok. It's no big deal. Look how excited everyone is to see you!"

Since my initial attendance, we have had green weeks, and we have had yellow, but there have been no more suspensions. We have started an IEP. He spends most of his afternoon in an EC class and loves it ("because I get my own desk.") His teacher has moved him to a table of boys. It still isn't perfect, but it is better, and for the time being at least, my tears have subsided.

Love this quote...so fitting for where we are in the journey right now...

Off to School

Today I am attending public school Kindergarten for the first time in my life. Attend I must, because if I do not then my child may not attend either.

To say the last few weeks have not been easy would be an understatement. Try though I might to bring to the school's attention Austin's behavior issues, their relationship has been... strained.

Two weeks before Kindergarten was to start the principal of Austin's daycare mentioned to me that I may want to contact the school in advance to make them aware of his Asperger's/behavior and make sure the teacher that he would have was not new, but tenured; someone who would not be easily shaken by his antics.

I called and spoke to the assistant principal and voiced my concerns. She agreed to look into classroom placement and get back with me. She did so quickly, calling me back right away. She mentioned that my father's sister, also a tenured teacher at the same school, had already looked into it and had placed him with a great match. There was nothing to do then but wait for orientation.

At orientation I pulled the teacher aside and introduced myself. I told her that I would like to meet the next week in advance of school starting. She agreed and we did. She went over her behavior system (involving green, yellow, and red just like a stoplight, plus a system where the kids feed a jar that looks like a monster a Popsicle stick when they make a bad choice. Too many times feeding the monster equals a move from green to yellow. ) Pre-emptively I also scheduled another meeting for the second week of school, thinking that he would have been one full week and we could re-evaluate at that point. It all seemed great. Next week, staggered start.

Spending the day with four other children at the staggered start was a piece of cake. Yes, there were new rules to learn but overall the day was a success. Check. Next week, the real deal (minus Labor Day Monday.)

GREAT FIRST WEEK! There were a few days where Austin had to feed the monster, but ultimately he was in the green everyday. YAHOO! What was I so worried about? Next week, second full week.

First two days were fantastic: in the green! Come Wednesday, though, there was trouble. I happened to be off work that day and decided to take Austin to school instead of sending him to the Before School program. It started as we were sitting in the car rider line.

I tried explain, "Today you will be a car rider. You will not attend Before School."

"But I am a car rider every day."

"You're right. But today, instead of going to Before School, I am taking you right to school."

Minutes passed and I thought we were done, but then another question rose to the surface.

"So I won't go to After School today?"

Deep breath (or sigh, depending on how you look at it.) "Yes. You will go to After School, but you won't go to Before School."

Again, a pause. Then, "But I want to go to After School."

The conversation deteriorated as we waited in line, held captive in the stream of mini-vans and crossover SUVs. Austin continued to perseverate, I continued to rationalize. This is absolutely the single most maddening part of his condition. The inability to get him redirected, even when presented with what I think is perfect logic.

As the line inched forward and we rounded the corner, a friendly, energetic, and determined teacher approached the car. Our conversation had reached a fevered pitch. Austin lurched forward, wrapping his arms around the headrest of my seat, and locked himself into a death grip. She literally pried him out of the car. I shouted and feebly assisted, removing a finger here or there, locked by fight-or-flight and feeling mostly like I was in one of those nightmares where you are trying to run or punch and physically cannot. His perseveration at least changed topic, and he was at that point fake whimpering. "Mommy! Mommy!" over and over and over. She wrangled him out of the car and onto the sidewalk. I know this because I watched it all in the rear view as I gunned it out of there. Ok, I didn't gun it, it was a school zone afterall, but my flight response had finally kicked in, and I wanted to be a million miles away and there holding him all at the same time.

Inevitably, I received a call from school that day, and every other day that week. The honeymoon had ended. I met with the school that day for our prearranged meeting and strategized solutions.

The following week, under urging from his psychiatrist, we upped his dosage of Zoloft and started Ritalin. Though there were a few green days at the end of that week, this week began with hiding under lunch room tables, tearing apart his classroom and pretending to be an Angry Bird toward the sweetest, most loving little girl in his classroom, which resulted in him sticking out his tongue and blowing spittle into her face. That is what prompted his most latest suspension, and my going to school as a kindergartner today.
 
I am:
...caught up in this inner turmoil of understanding that there will be no quick-fix, like I once imagined, and wanting desperately to fix it.
...concerned that I am not doing enough, or doing the right thing, yet I have no idea what that might be???
...aware that euphemisms like 'antics' sound funny in a blog but are horrifying when it's your child's face he is spitting in, or your classroom he is destroying. 
...terrified of understating the impact of his behavior, but knowing, too, that I have to stand up for his rights and make sure he is being given every opportunity. I'm his mom. If I don't fight for him, who will?

Dealing with Austin is exhausting. I have cried Every. Single. Day. for the last two weeks. I would never want to give the impression that I am minimizing that, but I am also resentful of those who fail to remember the impetus. This will not be fixed by sending him home from school every day, or whipping him into submission, yet, his behavior must not go unpunished.

There is no denouement....I am off to school, like any other kindergartner on her first day, with every good intention that today will be a green day.

SISA

Early in the year under urging from a friend, we signed up for soccer. This was beginner stuff, 50 bucks to play all season, and that included the t-shirt. Austin told me from the outset that he didn't want to play, but I insisted. I couldn't wait to introduce him to a new skill, and begin to let him explore a little. Plus, I was really excited to see my friend every weekend.

The first Sunday we arrived at the field amidst what seemed like 800 or so other families, wandering aimlessly looking for an ambiguous color "stone blue." We eventually found it, team name "Smurfs," and my conversion to soccer mom began. I wasn't convinced it would be completed. I wanted to see if we actually made it through a game.

It started off promising. Austin actually mounted the field with his team. A full head taller than any other kid out there, and armed with a shiny new Umbro ball, I thought, "yes! This might actually work!"

Mmmm, not so much. Almost instantly, we were out. Head hung low, Austin sulked off the field into the adjoining field behind us. Andy stayed on the sidelines while I stalked after Austin to cajole, threaten, and outright force him back onto the field.

He returned; this time the coach approached us and said that if Austin had a problem sharing his ball that it might be best just to keep it with us. I was floored. I am not the biggest sports fan but I like to think I am a pretty good observer of human nature. How had I totally missed that SHARING had been the problem? But it seemed to be another piece of the puzzle. I agreed, sat tight on the ball as if wishing it would hatch, and watched the "game" now in progress.

Time and again Austin completed a play, and ran screaming banshee-esqe from the field. Time and again we carted him back onto the field. I was embarrassed, exhausted, and ready to call it quits in our latest endeavor with our four-year-old, but we stuck it out.

The end of the game found Austin searching for wild clovers to pick for me in any and every surrounding field, and the coach flooring me for the second time by asking us to let him know if there was anything going on that he could help with. How could he possibly tell that from this one meeting that our son had special needs? However observant he was also humble and kind and a volunteer coaching for the first time since his own 4-year -old was on the team. I told him I appreciated the gesture.

The following week Andy and I were both otherwise committed to work functions. I asked my dad to help out by taking Austin (it was our snack week, too.) They schlepped to the game with chairs, snacks, drinks, and everything they needed loaded down and in tow. Everything, except Austin.

Austin flat out refused to go down on the field. After following the same cadence set by me the previous week, my gracious father delivered the goodies and returned to his grandson high on the embankment overlooking the field. They left.

The following two weeks we tried to attend, and either weather or circumstance prevented that from happening. I texted the coach and eventually we really did just give up. Conversion to soccer mom: pbbbt...FAIL...after only one game.

The Birthday Party Circuit

Ah, spring; the birds begin singing, the flowers start growing, and invariably, the birthday party invites start to flow. Perhaps it is just my particular circle of friends...something about the late summer and fall of 2006 that made us, collectively, er, amorous, but the cluster of birthdays that begins in May and runs clear through the summer is undeniable. It also seems that the peer pressure among the parents to have parties began around the age of three, and we haven't looked back since.

Selfishly, I love the birthday party circuit. It is the reason that I finally have like-minded friends again 10 years post college. Our kids get to play with other kids their age with whom they are familiar, in a structure someone else has organized and is responsible for, all while the adults gab and nosh on leftover pizza and cupcakes. What could be better? Seeing the same adult group weekend after weekend, and often multiple times during one weekend offers a chance to form and develop relationships of the kind I have sorely missed. Married couples with kids the same age all trying to climb the corporate ladder in their respective fields.

Except, yes, yes. SPD/AS/and ODD...I'd almost forgotten. My vision of hanging out with friends and allowing my inner social butterfly to emerge has more than once been shattered by attending a nightmare of a birthday party. Planned and perfect in every way, birthday parties often just aren't compatible for a child with Austin's combination of disorders. There have been multiple occasions where I have vowed to the heavens that I would never return to another party until Austin was a teenager, but by the next weekend the wounds have healed and my overwhelming need to return to the circuit persuades me to try again.

Along the way I have come up with the following set of guidelines, helpful for any parent, particularly those with multiple children.

1. Arrive late, and leave early.
Most birthday parties subscribe to a similar formula in which the kids free play for the first 30-45 minutes or so before any actual party activities begin. Getting to the party early or on time allows plenty of time for sensory input eventually leading to sensory overload, and subsequently uncontrollable behavior. Arriving in the middle of the pre-play not only affords less time to build up to a meltdown, but also allows you to seek out the parents already there for a lay of the land, "That way to the restrooms, gifts go there," etc. Plus, forecasting from this shorter time frame also proves valuable. Bribing your kid to be good from the outset is a lot easier when pizza is a mere 10 minutes away.


2. Keep the parent-child ratio 1:1.
This cannot be underestimated. It's not always possible, especially if your spouse shares the same crowd anxiety as your child, but definitely helps. At times I have even dragged my poor, unsuspecting mother with me to assist. In true sportsman style, you agree at the outset, "You cover your man, I'll cover mine, see ya at the end of the game."

The other alternative to ensure adherence to this rule is to leave one child at home. Your sanity during the party is worth the payoff of ice cream or a new robot or whatever else you'll have to offer up to the one left behind.


3. Dress your kids in the same color. 
The brighter the better. One of the benefits of being on the circuit during spring and summer, there is always a plethora of neon and pastels to go around- none of the earthy colors of fall blending your children into the surrounding foliage. This may not necessarily be the most fashion forward choice, but you can be almost guaranteed that there won't be another set of kids dressed identically to yours. Day Glo is your friend.

4. Accept the assistance of others
How often have I wanted to hug the neck of a friend who, upon reading the desperation in my eyes, said to me, "I'll take CHILD A with me and my child so you can look after CHILD B." While this doesn't exonerate you from having responsibility over the child you actually gave birth to, no matter how tempting, it is such a relief to know that when the going gets tough you're not alone. I only hope to one day not be the parent so wild eyed that I can actually reciprocate.

5. Wear sneakers.
When all of the above measures fail to happen, or simply fail, this is your fail safe. At some point during every party/event/outing, I have had to break into a sudden sprint to regain possession of my child(ren.) I can read it in their eyes now, at least; that fleeting look over their shoulders, their measured steps quickening into a steady speed walk and then a trot, daring me to dart after them. I know that it would pain Stacy and Clinton to read this, but you have to ask yourself how cute you are really, sweating and breathing heavily, lugging a writhing toddler through the masses. Would it really matter at that point if I was wearing pointy-toe flats? In this case function trumps form.

6. Remember that you know your child better than anyone else, and you don't owe anyone else an explanation.
Even if you hear, "But we haven't had cake yet!" or "Let me run to get you a gift bag," know when to call it quits. Trust your instincts, respect your child's tolerance threshold, and leave when you know things are getting hairy. If it's nap time, go. If they are sensory overloaded, go. Your child and the birthday child will remember one another being there, they won't remember whether or not they stayed for cake. Too often I have kicked myself mid-meltdown as I lugged my boneless child bodily through a parking lot, tears in both of our eyes. Meltdowns never take me by surprise. Austin has learned to self-regulate enough to warn me now. "I'm tired," or "I'm ready to go." I just have to listen and respect him and not push it when I KNOW he can't handle more. He's telling me as much, even though he may not be in the throes of a meltdown yet.

7. Learn to relax a little.
At the end of the day, everybody's kid is running around and playing and shouting like a lunatic, a least some of the time. Learn to shrug it off. They're only kids once. They have a lifetime to fall short of someone else's expectations, so why not cut them some slack and allow them to just be who they are?

The Naked House

Early on in the process, Austin, Andy and I visited a Behavioral Pediatrician. This was long before we had any diagnosis or any idea what to expect. On the drive we chatted about what we wanted to discuss with the doctor. I took notes and prodded Andy to participate. I read aloud to him the list I had been keeping on my Blackberry: "Meltdowns, transitions, bedtime..." Andy said, "Can you ask them why he always wants to be naked?" I looked over at him, unblinking, and shrugged. "I guess. But I don't really think that's related."


I didn't grow up in a naked house. Neither did Andy. Our parents were/are extremely modest. No one ever changed in front of one another, or walked around in their underwear, much less naked. To this day my father will change clothes if he finds out anyone is coming over, even his children, if he is wearing shorts. He doesn't want anyone to see his legs.


As a matter of fact I didn't even realize that naked houses existed until I got to college. One of my best friends grew up in a naked house. She had no problem flaunting her skivvies for the world to see all the while flat ironing her hair or smoking a cigarette. This phenomena floored me. No self-image body issues to be had, no embarrassment, just 'Here I am world, love it or go home to your own apartment." I had another friend who preferred to sleep naked. That was equally as baffling to me. What if there was a mid-night emergency and we were forced to run outside unexpectedly? Heck no. Not chancing it. Plus, I just liked the feel of something between my bare bottom and the sheets. Anything less just plain creeped me out.


Fast forward to the mid 2000s and imagine our bewilderment in having a child that, if given the opportunity, would never ever put on clothes. It didn't come up that day in the doctor's office. It wasn't until Austin was diagnosed with SPD and we entered occupational therapy that it finally made sense. A pre-visit questionaire went something like this:
__ distressed by clothes rubbing on skin; may want to wear shorts and short sleeves year round, toddlers may prefer to be naked and pull diapers and clothes off constantly


Jackpot.


I actually wrote out to the side of this bullet point and said that he would never wear clothes if he could get away with it. Our first appointment to the occupational therapist he wore his Halloween costume. I just chalked it up to his quirky-ness and took the path of least resistance by letting him wear it. She pointed out that it was spandex and tight and therefore soothing. 

It is still a daily battle to get Austin to wear clothes. Even underwear. Once a week at least both boys will tear streaking out of the bathroom after a bath and Andy can be heard above the fray, "NO NAKED WRESTLING." It still creeps me out. How many times can I tell this kid: "We don't want to look at your penis. It is only for you to see. In private." Yet I continue trying to explain it. The best part about the therapy and diagnosis is that at least now I understand tactile defensiveness, and when I get really desperate, I pull out the Halloween costume and all is right with the world.