Tuesday, August 22, 2017

Vision, or Lack Thereof, Otherwise Known as Wandering in the Desert

When I was a child, when Keith Green's "So You Wanna Go Back to Egypt" (1980) was familiar background music, I did not understand why the Israelites of Numbers 13-14 refused God's direction to leave the desert and move into the Promised Land. They saw that Canaan was full of Canaanites who would have to be moved out by force, and they were afraid.

The child I was who was reading a children's Bible full of exciting stories remembered the miracles of Exodus only a few pages previous and was puzzled and scornful of a people who forgot God's faithfulness so quickly. I must have thought, God said he would help you. Why won't you move?

Ah, the innocence and inexperience of youth. When everything seems easy, your parents know everything, and every decision is yes or no. I miss the certainty I had as a child. It helped that I rarely had to make my own decisions about the future; I just followed my parents and trusted they would take care of me. And they did. They had a Vision of where we were going and I was happy to tag along, even though, at the time, I was highly suspicious of the two younger brothers they provided me with for the journey.

My pastor at Hope Church spoke eloquently about Vision last Sunday (you can hear the message here). He defined Vision as "a picture of a future possibility that can only be realized through effort and determination, a blueprint and fuel for decision making." And as he continued to talk about what Vision is and how it influences your life, I realized, sadly, that I don't have a Vision for my life right now. All I have is the day to day existence of survival. And I feel that lack of Vision keenly.

Friday marks the one year anniversary of the death of my father-in-law. And I thought, after all these months, that I was done with my grief. (I associate this Jars of Clay song with grief since I first heard it at my cousin's funeral in 2003.) I guess I thought a year was enough time to be reconciled to the loss of a parent, but it's still there.

I am reminded of my favorite quote from Everwood, from S02E01:

"After my mom died, everybody told me I was going to be okay, that it would take a little time, but I'd heal. That didn't ever happen, not really. What you're feeling right now, ... it doesn't ever really go away, not completely. It's not like you're going to go back to being the person you were before they died. That person's gone. It's more like . . . something inside your body breaks and your body finds a way to compensate for it. Like if you busted your right hand, you figure out how to use the left one. And, sure, you might resist for a while 'cause you get pissed off that you have to learn all this stuff again that nobody else does. Eventually, your body takes over for you and figures it out because if it was up to you, you'd just . . . look at your busted hand forever and try to figure out what it was like before."

I think grief has cooperated with my constant depression to act as a blindfold that prevents me from seeing an adequate, supernatural Vision. I have been able, in this past year, to walk in the familiar footsteps. I'm still the mom of two special needs kids, the household manager, my husband's lover and confidant. I participate in the church functions already on the calendar, see my doctor, see my shrink. But I always feel weighed down. All those things that previously energized me--prayer ministry, youth ministry, Bible study--I still do, but automatically. The good news is that when you invite the Holy Spirit into your activities, he still shows up, even if only half of you is there. But you remember how it felt before, when your heart was lightened by the process of sharing God's grace with others. And the absence echoes all around you.

Perhaps I am still trying to reach backwards, to the child who saw the world as black and white and found God's commandments easy to follow (or thought she did). Or to the 21 year old bride who was delighted by the kindness of her new father-in-law. Or even to five years ago when death didn't hang over my husband's family. I had a different Vision then. The way through seemed clear. I could see the Vision. But then life shifted and I lost my sight.

But, here, now, as August is falling away and September, the time of new beginnings, is nearly here, I can almost feel the hope of change. The boy will start 8th grade, happy in his school and friends. The girl will start fifth in a new school but with old friends and the promise of new ones. The husband now understands the new job he took in January and will have to decide how to fit the rest of life around it. And I, I can ask for a new Vision. A new pathway. A new hope for this future that is now, here, in my 42nd year. Altered by grief but refusing to let sorrow have the last word. I'm tired of wandering around in the desert. I want to walk in the Promised Land.

Sunday, June 11, 2017

7 Reasons Why I Haven't Been Blogging

So the last two weeks have been rather quiet around here, for a number of reasons. Let me innumerate them:

1. Both kids got the stomach flu, but not at the same time. Miranda had it last week and Alex had it this week. So by the time I got her all cleaned up and healthy, I had a headache for two days and then he got sick. However, I am happy to say he does vomit in the toilet now. Big improvement. She was not to skilled. She has a loft bed so when she got sick, she just leaned over and covered the floor, and then went back to sleep. Not a drop on her. I, however, discovered that gravity is not your friend when cleaning up slop. It creates a rather impressive splatter pattern.

2. My doctor changed my anti-depressant cocktail. I've been having pretty serious nausea from my meds and we tried one variation last month that didn't improve matters, so last week we tried something else. If you've taken SSRI's, you know that you should pretty much give up on a regular sleep schedule for at least two weeks. Caffeine and naps help, a little. You mostly just wait it out.

3. Since I've been mostly brainless for two weeks with sick kids and an unsteady neurological system, I've read 11 books, mostly by Nalini Singh. I am definitely enjoying her Psy-Changeling series, which is part of the para-normal romance genre. Her world building skills are excellent and I like most of her main characters. A couple of them haven't worked as well, but no one can write the perfect novel, year after year after year. I'm now in the middle of book 12.

4. End of the school year! Alex's last day is this Wednesday and Miranda has 7 more school days. I did manage to get Alex's teacher gifts delivered last Friday (more fudge, like at Christmas, because it's just easier to do in bulk; Alex's "teachers" number 12 people). I'm not sure I'll have enough fudge in this batch to finish up Miranda's people because she is leaving behind her elementary school and moving on to the Intermediate School next year so I might need to make more this week for extra people we don't usually honor.

5. My parents are on pilgrimage in Italy. I'm so glad they are able to take this trip but it makes life a little more complicated here at home. Thankfully, Mimi the Great is still here and one of our favorite babysitters is back from college for the summer.

6. My aunt and uncle from San Diego were here visiting this week and we were able to share two evenings with them. We haven't been able to travel to see them recently so it was nice to catch up.

7. The words just aren't flowing as easily as before. I wrote the first ten blog posts in minutes with very little revising and so I've probably picked all the easy topics and it's going to get a little more challenging moving forward. Or I have lots of memory gaps; 2007 is pretty hazy for me. But I hope to get back to it when things slow down again around here. In a week or so.

Here's Kelly.

Sunday, May 28, 2017

An Exquisite Kind of Grief, or I Hate Change, Part 13

My mother-in-law's favorite cartoonist is George Booth; this cartoon is her favorite, ever. I read The New Yorker for many years (I gave it up about 6 years ago because it was always so damn depressing) so I was familiar with his work, but I don't think I really appreciated his perspective when I was younger. When you are young and fresh and just out of school and starting your marriage, you imagine that someday you will reach this level of calm or balance or happiness or SOMETHING, and life will be ideal. But when you're older (41 and counting), you realize life is never going to reach this pinnacle of perfection and stay that way permanently. It's going to be a series of compromises and adjustments, especially when you don't get the kids you expected. George Booth specializes in drawings of real people (who may or may not have a lot of cats), and I appreciate him more now than when I was younger and still deluded about what it means to be an adult.

So, last week was Spring Music Concerts for both children. Shout out to my parents who never missed a one, which with 3 very musical kids, meant for a lot of really boring and painful concerts with a few good ones sprinkled in there at the end. Miranda had her fourth grade school choir concert, which was lovely, but we had to sit through the beginning violinists first. It was only fair; last year she was one of those beginning violinists. That was Monday night.

On Wednesday and Thursday mornings, Archway Lower School had it's spring musical show. They run it two days in a row to help out the parents with difficult schedules and, probably, to give the kids a chance at a do-over. I went Thursday morning because I didn't want to miss my Bible study on Wednesday. I was hoping Marshall could come too, but Alex nixed that. He only wanted me to be there. (Alex has been having some, "I don't like you, I only want Mom" issues for the last year. Some of it was probably because Marshall was gone so much last year--his father was dying; that was the way it was--but there's also some teenager obnoxiousness mixed in there. When I came home from the ladies retreat last Sunday, he was more upset with me than he's been in a long time.) Anyway, on Thursday morning, I made the 40 minute drive to Atco (it's almost 18 miles, door to door) and tried to "gird my loins" for the performance.

This is not like sitting in a room of 25 neurotypical third and fourth graders scraping their way through Frere Jacques on violin. That is a painful experience because they are beginners and are really still young children. They are trying something extraordinarily difficult and still only barely managing to produce notes. But if they practice a reasonable amount, they have the opportunity to be much better.

Concerts at Archway are painful to watch and listen to because they reveal just how disabled these students are. There are several classes of higher functioning kids where they do produce something resembling music, but that is the exception. The music teacher at Archway is excellent, truly. Each classroom is responsible for performing their own song and then there are a couple of other special solos or trios or whatever. This means that everyone participates. Everyone. 

Alex played drums for his class song, which was "Man in the Mirror." Three of his classmates took turns singing the chorus and a few verses. It was actually pretty good. And then Alex did a trio with his best bud and another friend, some Dvorak (currently, his favorite composer, after John Williams' Star Wars soundtracks, of course). Alex and best bud played piano and their other friend accompanied them on string bass.

Now, since Alex is mine, I happen to know this happened because of 3 months of practice in private music lessons on Saturdays. 3 months worth. Are we back to ABA territory? Oh, yeah. And Alex has actual musical gifts, including perfect pitch. But the autism "gets in the way."

I actually didn't find this year's concert as emotionally crushing as last year's, which means my perspective is improving. For all of these students, this is really hard work. They work for months on this one piece of music, just for these performances. And, honestly, I clap enthusiastically for each and every one of them. One of my favorites this year was a student who bounced on a small trampoline while he played his bells with his class. You just do what works.

But there is still that exquisite kind of grief that you feel when you acknowledge the disabilities of these students. When you hear the other parents weeping because of what their child has achieved, which should be applauded, even when you know what is lacking. You can forbid everyone else in the world to compare your child to neurotypical children, but you can't help but do it yourself. For all that Alex can and will accomplish, it will always be "classified," that is, conditional to his diagnoses.

There are plenty of people who will be outraged that I consider people on the spectrum "disabled." Yes, Alex's brain is wired differently than most. Yes, there are plenty of ways in which he "passes for normal." But this is a kid who is so obsessed with the end of Return of the Jedi that he can narrate it to you, with all of the correct drama and inflection, timed perfectly to the soundtrack. Because he does this at least four times a day. And he is so opposed to trying new things, even new media (Episode 7 and Rogue One are so not acceptable, even though he can tell you in detail how incensed he was at the death of Han Solo), that he just cycles back through the old ones, again and again. I was not happy to see Max & Ruby come back into rotation this week; I was tired of it 6 years ago, although I do kinda miss Screaming Green Alien Gorilla. But only slightly.

Somehow there has to be an emotional balance between accepting and loving the kid that you have and mourning the loss of what he could have been as a neurotypical kid. But I haven't found it yet.

Saturday, May 27, 2017

But I Don't Want All the Feels, or I Hate Change, Part 12

If you don't read XKCD, you should. But this one is still my favorite. And it describes perfectly how I feel right now.

[Sidebar, if you want a great catalogue of wrongs, you should read Anne Kennedy's blog, Preventing Grace. She keeps a better tally than I ever could and writes with a lot more polish. She even has a book!]

But I digress.

One of the results of reexamining traumas of the past, of unwrapping all the crusty bandages I've wrapped around my heart, is that my emotions are rather more, well, present. And I have spent the last 24 hours irritated with everything. Lots of someones on the Internet are wrong, but so is everyone else, including me.

I read this cartoon about women shouldering more of the burdens at home and even though it barely applies to me (dear husband is actually very helpful in the home, in addition to working a full time job in order to provide our daily bread), I was irritated. I spent most of the last week getting ready for the people who clean my house to come yesterday afternoon (yes, it really does take us that long to pick up our crap!) and when they were done, it was wonderful for about 5 minutes. Because then I remembered all the piles of stuff that I had just stacked higher instead of sorting them and throwing away half of it, because I was in a hurry to clear all the flat surfaces for cleaning. Half of the clothes in my closet don't fit me. I'm sure I have at least a dozen pairs of shoes and I only wear 4. What is wrong with me? Why can't I just let go of the stuff?

I have no difficulty sorting through my children's possessions. Books are recycled (if they got partially et), given to cousins or donated to the library. Alex shreds most his clothes before he grows out of them, so I rarely have problems there. Miranda's clothes go to her much smaller cousin in hopes that someday, she can wear them. Stuffed animals go in the trash when we're done with them. We had bed bugs once; once paranoid, always paranoid. Miranda, our budding artist, is having a problem with keeping every scrap of paper she ever drew a stick figure on but even then, paper doesn't take up that much space. Alex has two bins of birds. Here is a small sample.

But I have my childhood stamp collection in a bag in our bedroom, where it's been for nearly 18 months, because I want to give it to someone who'll use it instead of just throwing that part of my childhood away. I have all my favorite books from childhood on one shelf of the magnificent bookcase dear husband built me several years ago (Laura Ingalls Wilder, Janette Oke and L.M. Montgomery) that my children ARE NEVER GOING TO READ. And then there's all the clothes.

It is a truth universally acknowledged that parenting causes weight gain. I was one of the fortunate few who didn't keep my pregnancy weight more than a couple of weeks post delivery. I am, however, one of the many who "eats my feelings," usually in chocolate, from the stress my children cause. And the more stress you add, the less likely you are to take the time to eat healthier foods and exercise.

So I weigh more than I used to and most of my clothes don't fit. But, like almost every woman I know, I haven't given up the dream of someday weighing less and wearing those clothes again. At what point do I give this up? Should I just give away the size 12's and keep everything else. (Actually, I think I did do that last year.) I could get rid of some of the shoes I haven't worn in a dozen years and then I might be able to actually see the floor of the closet. But is that just a token response to a larger problem. And I am the larger problem.

When I started blogging again almost two weeks ago, words flowed easily and I thought this process had a foreseeable end. Now, the more that I look into the abyss, the deeper it gets. I raged at my father in law for years for his hoarding, but here I am, doing the same thing. Grasping my stuff in order to hold on to my past. I hate change.

Friday, May 26, 2017

7 Reasons You May Have Brain Fog, or I Hate Change, Part 11

It's cleaning day but I have at least 3 hours yet until the cleaners arrive and I'd rather blog than do the dishes, again. (I don't know why the sink keeps filling up with dirty dishes. Do I really have to keep feeding them?) I'm still doing laundry. That counts, right?

So, brain fog. What is it? According to the Internet, it's a kind of mental fatigue that makes you absentminded. You lose things, you can't finish your sentences, and you never feel completely awake. I'm pretty sure I've had brain fog since adolescence. Not pretty.

Okay, here are a few reasons cited here:

1. Lack of sleep. I remember when I graduated from college and got a "real" job (after getting married a week after graduation which caused 6 months of insomnia; 3 months before and 3 after. I don't recommend this cramming together of momentous occasions to anyone.) Once I started working my first "adult" job, I was getting less sleep than when I was in college. This made no sense to me whatsoever. Adulting sucks.

Then, when Alex came along, I quit my "real" job and started parenting a newborn. Yeah, you don't get a lot of contiguous sleep then, either. And by the time he was reliably sleeping through the night, I had another one coming. This mom thing is crazy.

By the time Miranda was reliably sleeping through the night (and this took a lot longer; maybe 4-5 years old), I had trained my body to sleep lightly enough that I would hear a crying child and run off and take care of them. I'm not sure this ever wears off. I take medication to help me get to sleep now.

We used to joke for years that we experienced "phantom baby syndrome." We were sure something was wrong with one of the children so we'd creep into their rooms to check on them, but they were fast asleep.

Nowadays, my alarm goes off at 6:10 to get Alex on the bus at 7:10 and it is a rare night that I am in bed and falling asleep by ten, so I'm probably not getting enough sleep. Still.

2. Neurological Disorders. Depression isn't mentioned in their list but it does fall in this category. I have a diagnosis of chronic depression and not just that, medication-resistant depression. I'm so special, and not just that, I'm a redhead. There is a genetic variant that comes with the hair that causes all kinds of fun things, and not just a propensity for melanoma. In my life, this means I need three times as much novacaine at the dentist as the average person and I get all the fun, rare and very strange side effects from most medications.

My husband doesn't not remember these days fondly: I was prescribed a sleep medication between pregnancies that, if I forgot to take some Benadryl with it, would cause me to wake up screaming. I was convinced a spider was coming down from the ceiling right over my head. It was the same dream, every time, and it didn't matter where I was sleeping (in CA or NJ); it would cause me to wake up screaming. I am extremely arachnophobic. But this was a new one for my doctor.

Back to depression. I've pretty much accepted that I'm always going to have some level of brain fog due to my faulty brain chemistry. It doesn't make me happy; it's just the way things are. And that leads directly to...

3. Medication. I remember about 18 months ago my doctor was changing my antidepressant regimine and we tried something new. It didn't do squat for my depression but for the first time in several years, I could actually finish my sentences! It was wonderful, but it only lasted a month. This medication wasn't working in any other sense, so we tried another medication and while this one helps alleviate my depression, it sent me right back into brain fog. I miss being able to finish my sentences.

4. Stress. Yeah, maybe I've got a little stress in my life. I'm working my way through that at present. (See parts 1-10, below.)

5. Menopause. I'm not there yet but it is coming. I have a hard time imagining the brain fog worsening. That could be bad.

6. Nutritional Deficiencies. I have been struggling with recurrent nausea since December. It may be caused by my primary antidepressant, but in hopes that it wasn't, I started throwing out everything else, sequentially, to try to find the cause. I changed everything I ate in the morning (which, as a person who hates change, was almost traumatic. I like to be in my groove, which means I tend to eat the same thing for breakfast for years at a time. It was ugly, and I was still nauseous.) I changed the time of day I took my medication. I started taking one antidepressant with breakfast and the other before bed (in this house, we all have medical cocktails; it's just the way it is.) No improvement. So last month, my doctor added Zofran, which solved the nausea problem, but do I really want to take it forever? Every couple of days, I try to go without it and the results aren't pretty. Dang it.

But this also means I haven't been taking my vitamins since I tossed them in December, trying to find a better solution for my stomach. I really need to get back to them.

I was hoping as my stress decreased, which it really has in the last year, my nausea would follow suit. No such luck yet. This is annoying. But as we have come to realize, stress can reprogram your body on a biological level; the way back is not always possible or even if it is, it's not easy. So annoying.

7. Bad diet. I am an indifferent cook. I was getting along okay until last summer, when I just gave up. My father-in-law was dying. My body's hormones got entirely out of whack which meant my body wouldn't stop bleeding so then my gynecologist gave me all kinds of progesterone which made me sicker but stopped the bleeding. Finally, now, almost a year later, my system is back to normal. But that's a long time to be out of the habit of cooking real meals for dinner. And it doesn't help to have one child who only eats 9 things (white tortilla chips, chicken corn taquitos from Whole Foods, turkey bacon, buttered toast, Libby's corned beef hash, motzarella cheese sticks, Wheat Thins brand crackers, Honey Nut Cheerios, and McDonald's French Fries. That's it; that's the whole list. Wait, I forgot the candy: Hot Tamales) so he has to have a meal cooked for him and my daughter is slightly better, and will share about 5 of the meals we eat, so half the time I have to cook something separate for her. Many nights, after that, I'm done. I have instant peach oatmeal and some sort of breakfast meat. My poor husband has become very fond of soups, so I keep a stash of them in the pantry.

So lots of fresh fruit and veges? Not really. Non-processed dinner foods? Not a lot of them. Possibilities for change? Maybe. I'd love to go back to cobb salads for dinner but they stopped making my favorite salad dressing. I really hate change.

Here's Kelly.

Wednesday, May 24, 2017

Bleeding Heart ______, or I Hate Change, Part 10

I will give you a new heart and put a new spirit in you;
I will remove from you your heart of stone and give you a heart of flesh.
Ezekiel 36:26 (NIV)

[Sidebar: No, you haven't missed anything. I haven't updated this blog since Saturday night. Read a few books. Caught up on Twitter. Watched a bunch of Honest Trailers (see YouTube.) But the drive was gone. I was waiting for something to come to me, but I had nothing. Well, not exactly. I had the title and the verse for this post, but I didn't want to write it. I figured that if I waited long enough, something else would come to me. Nope. Nada. So, after 4 days of lollygagging, here is my attempt.]

We often use the term "bleeding heart ______" in a derogatory fashion. Bleeding heart liberal. Bleeding heart activist. Idiotic bleeding heart. It signifies someone, of any political persuasion, who expresses excessive emotion towards the plight of someone else. But in my first post last Monday, I described my condition as someone whose heart was still wounded, still actively bleeding from the life changing event that was Alex's diagnosis of ASD. But what does that mean?

Medically speaking, when your heart is bleeding, you find some heart surgeons and they stitch your heart right back up again. It may not work as well as before and your recovery time is probably lengthy, but it is often survivable. But we use the word "heart" to describe both the organ in our body responsible for pumping blood but also, metaphysically, as the seat of our emotions. And just as our physical heart may be wounded and require healing, so can our emotional heart.

I think what happened in 2006 was that I didn't have the time or energy to seek healing for my broken heart. We had to get Alex through the doctor appointments and behavioral evaluations and then Early Intervention and then preschool, all the while, Miranda had to finish growing inside of me. If I didn't have the energy to pray, I certainly didn't have the energy to heal.

The problem was, when we survived 2006 (we had buttons made and everything, "I Survived 2006"), 2007 wasn't that much easier, so the bandage that I'd wrapped around my emotional heart to stop the bleeding got thicker and thicker and, as time continued to pass, turned into a hard crust. I was under the delusion that if my heart was "hard" enough, it would protect me from future damage. It should have been easier when, in the spring of 2008, Miranda was also diagnosed with ASD. But it was still devastating. Familiar, but just as painful.

The new reality did nothing to change my behavior. I threw myself, once again, into Early Intervention, working with new therapists but the same case manager. And even though Miranda's speech started improving at a rapid rate, her behaviors got worse. I don't have a lot of good memories of the year she was 2. What I do remember is wrapping her in her blankets while she screamed and thrashed, and sitting with my legs over her to keep her from hurting either of us. It seemed to last for hours, but was rarely longer than 30 minutes. She would wear herself out and recover and then I would go get a handful of York Peppermint Patties, and, as my friend Robin says, "eat" my feelings. You would not be surprised that she was eventually diagnosed with ODD as well, but not until first or second grade.

[Sidebar: Both of my children have the diagnoses of ASD, AD/HD, and ODD. It is not unusual to find these syndromes as a part of a package deal; it's called comorbidity. But it is helpful medically to separate them out because treatment options are different for each diagnosis, and the school district treats them separately when allocating resources in your IEP. Also, the severity can fluctuate. Alex's AD/HD often gets in his way of being able to participate in therapy for his ASD. Miranda's ODD can block her classroom participation completely; she just gets stuck and often cannot reset without a change of scene. When your doctors and teachers know all of this, it really helps them to help you move forward.]

So, here I am, with a heart hardened by years worth of bandages. I had intended those bandages to protect my heart until it could heal on its own (didn't happen; not impossible, but didn't happen) or to prevent further damage (which also didn't happen). In the end, what I ended up was a heart hard enough to prevent healing but soft enough to keep bleeding. Lose-lose.

As I was writing this, I was reminded of a passage in Hebrews:

So, as the Holy Spirit says:
"Today, if you hear his voice,
do not harden your hearts
as you did in the rebellion,
during the time of testing in the wilderness,
where your ancestors tested and tried me,
though for forty years they saw what I did.
That is why I was angry with that generation;
I said, 'Their hearts are always going astray,
and they have not known my ways.'
So I declared on oath in my anger,
'They shall never enter rest.'"

See to it, brothers and sisters, that none of you has a sinful, unbelieving heart that turns away 
from the living God. But encourage one another daily, as long as it is called "Today," so that none
 of you may be hardened by sin's deceitfulness. We have come to share in Christ, if indeed we 
hold our original conviction firmly to the very end. As has just been said:

"Today, if you hear his voice,
do not harden your hearts
as you did in the rebellion." Hebrews 3: 7-15 (NIV)

Pretty hard stuff. Pretty serious words. A hardened heart not only damages you, it separates you from Christ and thus leads you into sin, and from there, it damages the community around you. It starts as a quick fix and then becomes a habit which leads to separation from God. This is a problem because only God can heal a damaged heart.

Go back to the top and read the verse from Ezekiel again; a new heart and a new spirit go together. When the Holy Spirit is within me, my heart is renewed, old wounds are healed, and I live in hope again.

So, in the end, my goal in writing these blog posts is "bleeding heart healed." Lord, may it be so.

Saturday, May 20, 2017

Your Mother Is Always Right, or I Hate Change, Part 9

I am still on retreat with some of the ladies from my church, sharing a room with my mom and enjoying the time with her. And yes, I did just tell her the title of the blog post I was going back to our room to write and she had a good laugh. She asked if I meant her, as in my mother, or in general, everyone's mother, and I mean both. Let me explain.

As a part of our retreat, my mother set up a room where we could worship God through exploring our creativity. One activity was using clay to make holding crosses, which is just an object roughly shaped like a cross that fits nicely in your hand. I wasn't so keen on the activity when she mentioned it to me a few weeks ago, mostly because I'm not really a gifted crafter. I can do cross stitch and do it well, but that's a very straightforward project that requires little imagination and has lots of very specific directions. I like structure. I like directions. This was not one of those kinds of projects.

But I'm in the room with 19 other people and it would be impolite if I didn't participate, so I start working the clay and following her directions. (If you want to know more about our history with Super Sculpey and its adherents, go talk to her. It's a fun story with really cool handouts.) Yesterday, when I had "helped" her set up the room, I picked out a shell from my childhood (we still love you, CBS!) to use in my own cross. And today I picked a dark blue to work into the beige and left it in streaks instead of mixing it all the way in. You can see in the picture above that it's a decent effort. But what I didn't expect was that after it's trip through the oven, how comfortable and comforting it feels in my hand. I don't think I put it down for two hours this afternoon, when we were laughing and sharing stories with several ladies in the craft room.

You see, my mother was right. It was a good activity to do together, to allow ourselves to go in different creative directions (I will try to get a picture of the cross made by my friend Ally; it's beautiful), and I have something I really love to take home with me.

Where am I going with this? For a moment, let's go back to 2006 and Alex working with Melissa in Early Intervention. One of my biggest questions for her was whether or not the basic rules of politeness apply to special needs kids. Should I expect Alex to say please and thank you, hello and good-bye, and not make excuses for his bad behavior? Not surprisingly, she said yes. But, she did tell me, it's going to be a lot of work to get there.

If you're not a special needs parent, you probably don't know what ABA therapy is. Take a moment and glance here and then come back. For the rest of us, we know more than we every really wanted to. In brief, it means breaking tasks down into small pieces that a developmentally disabled child can better understand, and then repeating all the steps 3 million times (slight exaggeration) until your child has grasped the task.

Most parents understand that in order to teach their children new things, they will need to demonstrate and practice more than once for the child to learn and be able to replicate the task. I remember hearing one of the many therapists tell me that a neurotypical child will need 5-15 repetitions and a child will autism will need upwards of 100. Or more. It's a little daunting, let me tell you.

It isn't true of everything. Alex taught himself to read by age 4 and there are some things that we only show Miranda once (like where I hide the chocolate) that she picks up right away. My mother-in-law joked that we should never let her watch someone hot wire a car or we'd be in real trouble.

In true ABA fashion, let's break down a task:
"Alex, hang up your coat."

  • Take off the coat.
  • Hold the coat in one hand.
  • Find a free hanger in the coat closet.
  • Grab the free hanger in the closet.
  • Hold it by the top.
  • Slide one sleeve onto the hanger. 
  • Wrap the coat around and slip the other sleeve onto the hanger.
  • While holding the hanger with one hand, make room for the coat in the crowded coat closet.
  • Hang up the coat in the space you just made. 
Done. Now, do this for everything in your life. Getting dressed, brushing your teeth, taking a shower (this is still problematic and sometimes I have to come back and review the steps with him again to keep him from washing his hair with Miranda's conditioner). And that's just the easy stuff. Let's not think about potty training; we can revisit that later. Maybe.

Now consider how much more complicated social interactions are.

  • "Alex, don't take the toy from your cousin. Say, 'May I play with the train please?'"
  • "Alex, don't interrupt when we are talking, Say, 'Excuse me please, Mom.'"
  • "Alex, don't scream at your sister. If she is bothering you, please tell me, 'Mom, Miranda is bothering me.'"
  • "Alex, just because your classmate says he hates Star Wars doesn't mean you can hit him. Not everyone has to like it."

It is never ending; some of these conversations I had with him just last week.

Still, my mother was right when she taught me the rules of basic politeness and good conduct, to treat other people with respect, to love my neighbor like I loved myself. And Alex does need to learn all these things as well. His diagnoses do not excuse him from bad or disrespectful behavior. They might explain it but they never excuse it. When he poured all of Miranda's toothpaste down the toilet last week, he went to the store with me to buy her more and paid for it out of his own meager stash of coins.

We are still, 11 years later, a work in progress. I know, I know, everyone is a work in progress. Whatever. But Alex's road, and ours along with him, is a lot longer and harder. With a lot more of life stuck on repeat.