1. It may come as a surprise to some, but I will be retiring this blog in the New Year. Passing for Normal has served its purpose. If you read my posts in the spring, you watched me come to grips with the diagnoses of my children and my acceptance that their permanent inability to pass for normal will always cause me a portion of grief. But I've also come to accept that I will never pass for normal, so there we go. It's time to leave the past in the past and look forward.
2. Adolescence in children on the spectrum is much more exciting than that in neurotypical kids. Life with Miranda this year has run the gamut from fascinating because of the real live person she's turning into to hair-pulling frustration with her inability to get emotionally unstuck (love that ODD), with plenty of tears in between. She is growing and changing, which is good, but it's painful for all of us. But we do have support from friends and family and church and school and doctors and therapists, so we are constructing a new normal for her in 2018. She'll make it and will be stronger on the other side.
3. Then there are the kids on the spectrum whose adolescence is delayed. There's Alex, with his wonderful long hair (one year into working towards the goal of a man bun), but much shorter in stature than his younger sister and much more immature. We've been watching him carefully and will be consulting an endocrinologist in the new year about HGH. He's 14 years old now and his program at school has completely switched to a vocational pathway. Archway has been so good for him these last 2 years and we trust in their process.
4. My parents had a fun year, flitting back and forth to CA to see the other grandkids (they are very happy to have 7) and then a long vacation/pilgrimage to Italy. Dad had his second knee replacement and mom had cataract surgery on both eyes and both are well at present.
Love those darlings. Hope to see them next year.
5. My honey changed jobs in January and while, for the first half of the year, it was an appreciated new challenge, since August it's been crazy and crazy-making. Too much work, too few staff. Still, the opportunity for him to work from home on a regular basis was good for all of us. We miss him when he's not home.
6. I only read about 150 books this year (I think last year it was closer to 220) but that was partly because I read Nalini Singh's Psy-Changeling series 2-3 times over the summer and I don't count rereads. Fun books, but incredibly impressive world building. Other new authors I loved on first sight: Mariana Zapata, Ernest Cline, Ben Aaronovitch, and Loretta Chase. Plenty of old favorites in my reading pile; stalk me on Goodreads if you want details.
7. I didn't see enough movies this year, but I never do. Of course we saw the necessities (Jedi, Ragnarok, Guardians 2, Wonder Woman, Dunkirk, Blade Runner 2049, Kong, F8te of the Furious, and Logan). I still want to see Justice League, Jumanji, Darkest Hour, Logan Lucky, Baby Driver, Atomic Blonde, Valerian, Get Out, Molly's Game, Spider-Man, Cars 3, and King Arthur. Eventually.
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.
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.
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.
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.
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.
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.
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.
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.
My friend Jen introduced me to Introvert Doodles. I think I need my own copy of this book.
So, on Monday (4 days ago) I started writing my story, my real story for the first time since 2006. It's not like I haven't spoken anything true about my life in the last 11 years, but I was mostly telling people what was happening instead of reflecting about what it meant or how I felt. Or how the experience had changed me. "Hey, Internet, here's my soul." Right this moment, I'm feeling kinda ... shy.
People at church are talking to me about what I've written. I've seriously upset the usual chaos in the lives of my husband and my parents. Friends from childhood and high school who I haven't really connected with for years are sharing their hearts with me.
It's weird.
Since 2002, except for a maternity leave from 2006-2008 (thank you, Miranda), I have volunteered with the youth group (grades 6-12) at our church, Hope UMC in Voorhees, NJ. I'm on my third youth pastor. Seriously. For many years I was a (mediocre) small group leader for HS, then MS, then back to HS, but just the ladies. (For the last two years, I've transitioned into a position of prayer ministry, which fits me SO much better. Thank you, Dave.) Anyway, I used to tell the students, "I'm not an extrovert, but I play one on TV." I can put on the appearance for 3 hours on a Sunday night that I'm socially engaged and listening and actively praying for those in the building, and then I go home and collapse. Alone, because my husband's watching zombies. (I understand that The Walking Dead is an excellent television series but I need something a little more cheerful, thank you.)
The best thing I've learned in my years with other people's teenagers (the best kind) is that God honors your service, whatever it may be. All you really have to do is show up, and, truthfully, that's the hardest thing to do. Once I am out the door at 5 pm on Sunday night, in the car, on autopilot to church (we've been attending Hope since 2001 so I can pretty much drive there and back in my sleep), I am in my groove. But all Sunday afternoon I am dreading my departure. I tell myself, I can pray for these people from my house; why do I need to go to church? (While this is technically true, it's actually easier to do it there, especially when you're praying for specific things.) I whine and complain (to God) and count down the hours, but at 5 o'clock, barring illness or vomiting children, I walk out the door.
I listen to John Michael Talbot's The Lord's Supper which is a basic liturgy and also about 25 minutes long, which is the length of my commute. This helps me to put my brain in the right groove. Then in the parking lot, I read through Francis MacNutt's Prayer for Protection and head into the building. And I'm on duty until we turn out the lights about 8:30. I chat with the students and the other volunteer leaders. I usually participate in the large group session for the HS students, keeping my hand in, as it were. Then, after snack (and we have great snacks; we even have Snack Mommas and one Snack Dad), I walk up and down the hallways and around the worship space, praying. (If I just sat somewhere and prayed, I'd fall asleep. I usually need to be doing something to pray.) I pray for the students, for the staff, for my family, for friends who are ill or just had surgery, for hope. For help.
At 8 o'clock, when the students go home, I meet with one of the small groups of leaders (HS ladies, HS guys, MS ladies, or MS guys) and check in with them. I ask them how I can pray for them and after they go around the circle and answer my question, I pray for them. And then we're done. I go back to the parking lot and read MacNutt's Prayer to Be Set Free, and then I go home.
This is what I do. But what does it mean?
I heard God's voice. Not all the time, but often. Hope Church is a sacred space, protected. God is easier to hear there. I hear that I am no longer the beggar woman but the older son, and after this week, I know that signifies that God's blessing never left me; my eyesight was simply obscured.
I am encouraged. Our youth pastor recruits a wide variety of people to serve the students. And praying directly for people is an intimate act. It builds ties between people that last. They care for me as I care for them.
I acknowledge the discipline of prayer. The more you do it, the easier it is to step back into it, no matter how hard my week was. I have a set routine because, remember, I like routines. When my mind is distracted and I'm having difficulty focusing, pushing myself into the groove helps.
I leave my home life at home. (Although, in another year, Miranda will be coming with me to YG. That will be interesting.) Since Miranda was 2, my husband has given me Sunday nights off. He does all the parenting and I don't worry about it. I can go to church and be there.
When we don't have YG on Sunday nights (June - August because, well, summer and mission trips and things and Dave should really get a vacation sometime), my weeks feel out of balance. It's like my touch stone isn't there. I may not really register how important this time is until I experience it's absence. And it's disorienting. Sigh. I hate change.
But if I measured my efforts of service versus the blessings I've gained through my service, God's scale far outweighs my meagre work. When you give, you are blessed. When you serve, you are blessed. This is what our pastor, Jeff, call's God's economy; you can't out give God.
So, my introverted self is just going to have to cope. I can't stop writing. I wanted to go to bed an hour ago, but the compulsion to write overrode me. I'm on retreat, for heaven's sake. But I didn't bring the power cord for the laptop, so I better be efficient.
So when you have a good doctor and two kids with a long line of letters after their names (ASD, AD/HD, and ODD), and you yourself have been taking antidepressants since the age of 19 (and really, if the drugs had been better then, should have started taking them at 12), you start to wonder if there are legal medicines that will help you out. The catch is, no medication is nor can it be officially tested on children. All of the responsibility is on you. Your doctor can run you through the options and describe possible outcomes, but you are taking the hit if it fails and things get worse. But, it might be better and it might be better enough to take the risk.
Back to 2007. So, Alex is in the disabled preschool program at Springville Elementary. Of course, being borderline hyperlexic, he's teaching himself to read on the side. But he cannot, for the life of him, sit still for more than 30 seconds in a 12 hour day. At this point, his AD/HD is doing more damage than his ASD because if he cannot sit and work through his ASD, our situation is never going to improve. His pediatrician is not comfortable diagnosing and treating his AD/HD, so we go to our family doctor, who agrees to help, and Alex starts taking Ritalin, the oldest and cheapest amphetamine based stimulant on the market. And life improves dramatically. For a while.
Growing children + amphetamines = a complicated life. Amphetamines suppress the appetite which suppresses growth which defeats the purpose of having a growing child. The child still needs to grow in order to be considered healthy. So you have to calculate the least amount of the medicine you can give them to reap the highest benefit. And then, when they grow and gain ten pounds and the efficacy of the medication starts to drop, you have to recalculate. And you do this again, and again, and again, and again.
Alex has been seeing Dr. Jay every 1-2 months since 2007. (A serious, responsible doctor will hand you the prescription but will require frequent returns because they want to monitor the results.) This has probably made us a fixture in the loss column for whomever provides our health insurance, forever. Yes, we have excellent employer-based health insurance. But we use it up, every year.
Honestly, in the ten years of medicating Alex, I don't remember all the different pills we tried. I remember that Ritalin worked for about two years and then we had to try a different stimulant. I remember we added an anti-depressant/mood stabilizer around first grade to help with his rollercoaster-like emotions. The summer before fourth grade, nothing was working, so we changed schools and went cold turkey on the meds, starting from scratch with new ones after he'd had about 6 weeks with nothing in his system. I think we added the tranq in fifth grade and changed to a different one last year.
Many people blanch at the idea of giving a child so many medications every day, even other medical professionals. And the truth is, we are experimenting on our children with psychoactive drugs. We are trying a variety of medicines in search of better outcomes. We try to explain Alex's emotional state as being a person going through life without a top layer of skin. Without medication, he has no emotional buffer; he feels everything and falls apart. These legal chemicals provide a barrier between him and the world that enables him to manage his emotions better. And the AD/HD meds mean that his isn't literally bouncing off of the walls. (Seriously. Not Kidding.)
Because Miranda is higher functioning on the ASD plane and less debilitated by her AD/HD, we didn't have to start her medications at age 3. We were able to wait until she was 7. In this world, estrogen is an advantage, even though we don't know why. So, for second grade, she started her own stimulant and then the following year we added an anti-psychotic which, for many kids on the spectrum, works as a terrific mood stabilizer. I still remember the lecture I got from a pharmacist last year about giving this medication to a little girl. She did fill the prescription, but she wasn't happy. We decided that this medicine helps Miranda tremendously, so we're going to keep giving it to her.
There are always risks. Side effects are difficult to monitor when your children can't tell you how they feel. I am perpetually paranoid about their weight (I think Alex has been ten pounds overweight once in his entire existence; Miranda never has) and I used to monitor every bowel movement (looking for signs of constipation). For some reason, they don't want me to do that anymore. And none of these medications can be given on an empty stomach so I spend all those early hours before school forcing them to eat something.
I have plenty of friends who have done what I've done, trying everything and, like me, ended up finding a cocktail that works. I have one friend who tried everything and ended up with only one drug that helps some. I have friends who have avoided chemicals entirely, trying therapeutic and naturopathic medicine instead. Every parent has to make a choice about what's best for their child.
Medication is not a perfect solution; there are always drawbacks. We've decided we prefer this outcome to our other current options. We do wonder if cannabis oil would be something that helps Alex further along the road. But what we have now is working, and, "As I always say, if it's not baroque, don't fix it!"
Yes. It's a ridiculous title. But if I'm blogging anyway, I might as well rejoin the Friday 7 thingies group, right? If this is your first visit to my blog, you can read Parts 1-4, if it interests you, by clicking on the links to the right.
1. When I look at your children in longing, it doesn't mean I want your children. I love my children. But there are many times when I wish I had your problems. Neurotypical children do not regularly shred their clothes (either because "it's touching me!" or it's the closest thing to fiddle with and I've already chewed up my pencil), wear noise cancelling headphones every time we leave the house (sometimes I could live without the billboard over our heads screaming "AUTISM! AUTISM KID RIGHT HERE!" I mean, this blog is called Passing for Normal), or stamping around the backyard while reciting Green Eggs and Ham for the 3 trillionth time (I'm not even kidding about the 3 trillion and, thankfully, I have very kind neighbors).
Miranda's issues are milder but still very specific: she just recently went into a clothes changing room for the first time in her life to actually try on clothes before buying them. Previously, I would go out and buy something and bring it home. It would sit on the floor for 3 days until I could beg her, while she was changing her clothes anyway, to try it on. And if it didn't fit, I would take it back. She didn't wear jeans until 3rd grade because she hated the way they felt against her skin. I haven't put tights on her since she was 18 months old and I'm kinda scared to try.
2. We don't really do playdates. Both kids get along with their cousins and other dear friends we consider extended family, but for Miranda to have a friend to the house means we have to explain about Alex (although she is now old enough to explain to her peers what autism is and what he is like) and prepare them for him to float in and out of their playing. I have left Miranda alone at a school friend's house 3 times in her life and she's ten years old. It's risky. She's impulsive and still has difficulties reading social cues. And sleepovers that are not at Grandma's house are out of the question until she can reliably take her own meds.
Alex doesn't have a lot of friends. One of the greatest things about Archway has been his development of a best friend. He realized several years ago that his classmates weren't actually his friends and he refused to call them that anymore, even though that had been accepted previously. But now he has a BFF; life is good. I've never met the boy's parents and have no idea where they live, but they are at school together and that's enough.
3. Going out to eat as a family is not going to happen, maybe ever. Miranda can now safely be taken to a diner or other casual dining facility because her father has trained her over the last 2 years about what the expected behavior is at such an establishment and she's decided she will eat certain things at restaurants, like the chocolate chip pancakes her mother refuses to make for her. Alex only eats 8 foods and the smells and sounds of most other foods upsets him (don't even try to eat an apple in front of him; he can't stand the crunch). We did manage to take him to a taco place in San Antonio in 2016 where he had tortilla chips for dinner but I think that was because he was so tired and hungry from hiking through underground caves and we were all together with our friends.
In previous years, he did a summer program at school that planned activities for special needs kids "in the wild" on purpose to help familiarize them with the outside world. Several times, this included a restaurant. The teacher ordered pancakes for him, because they were something he usually ate, but he was irritated to be asked to eat "foreign" pancakes and so he took a bite and then purposefully vomited the bite back into her lap. She cleaned it up, scolded him and told him to eat the rest of his pancakes. Special education teachers are made of stern stuff; just think what the world would be like if they ran it?!
4. Miranda is convinced she is the only kid in her class who's never been to Disney (it's a big thing here in Jersey). I'm not sure that's true but it's probably closer to true than it was 3 years ago. When Alex was younger, we expected that if we waited long enough, he would mature enough to chance the massive expenditure (BTW, I grew up going to Disneyland so I am a lifelong fan). Now we're wondering if just taking Miranda would work better, but he understands what Disney is now (thank you, YouTube commercials, for that) so I think he would be disappointed. Although, I'm told that the Fast Pass thing might go a long way towards helping a kid who hates waiting in lines. (Not that there are kids who like waiting in lines, but some kids tolerate it better.) Still, it's not on the near horizon.
5. My kids have never had a moment of seperation anxiety in their lives and "Stranger Danger" is completely preposterous to them. They truly believe that every person (child or adult) they encounter is already their friend, wants to talk to them and is perfectly safe. I'm sure part of this is because they are rather sheltered because we don't take them a lot of new places because, well, new things are hard. As you may already know, part of being on the autism spectrum means you have tremendous difficulty reading non verbal social cues and the adults responsible for you hardly ever leave you alone because, well, impulsivity is a thing. I'm not sure how Alex has never electrocuted himself by chewing on power cords; it's a miracle. Miranda managed to shock herself pretty well by putting my metal meat thermometer into a open light switch but also, miraculously, came away none the worse. This is when I worry about helicopter parenting, because if I'm not there, they might actually try to kill themself accidently by jumping off of a tower, walk off with a sex trafficker, or be perfectly fine.
I still remember the first time Alex realized that the kids at the park didn't want to play with him. It was about 2 years ago and it absolutely broke my heart. They were not rude; they were just playing with their friends. Miranda is still able to make younger kids into her pets at the park, which is easier than playing with her peers, anyway. But now that he's 13, Alex is pretty much done with going to the park, except for occasional trips. Sigh. We have a lot of good parks here.
6. Leaving my children with anyone else is complicated. They each have a specific schedule of medications, morning and night, prefer certain foods at certain times and morning routines need to be followed to the letter. But they can dress and shower themselves now, mostly. Bottles of shampoo still disappear mysteriously down the drain, and the guilty party could be either of them. A few weeks ago, Alex "washed" his hair with 3 handfulls of conditioner. I had to help rinse it out.
We went away for a weekend in March and even though I was leaving them with my parents, I left them nearly 3 pages of instructions and when they had a babysitter for part of Saturday, I left her 2 pages as well. Most of the time, it's just easier to do it myself.
This is not to say we never go out (thank you, grandparents, because you are wonderful!) or we didn't have other babysitters when they were younger. We did. It just takes a lot of work to get everything ready. And it was years before I really felt comfortable leaving. Now, since my children love everyone and Alex thinks that every single person who comes through the front door is there for him personally, they have pushed us out the door for years. Mommy is reliable, but Mommy is boring. And she makes you clean your room.
7. My job is hard. Please do not pity me, but empathetic listening is always welcome. And, honestly, I am happy to talk to your sister/aunt/roommate/second cousin thrice removed if they have a child they suspect is on the spectrum. Give them my phone number or my email address. Truly.
There were many, many special needs parents that I didn't know but who knew my parents or my pastor or my friend who talked to me and helped me through some really, really tough times. And I don't care if it's a one and done conversation. You don't have to friend me on FB or call me with updates. If you need help right now or next week or next year, I'm right here.
(I just did a Google search for an image of an exploding shoe and mostly what I got was shoes made with the pattern of the exploding TARDIS from Doctor Who. As a Whovian, I find this amusing.)
So, in our house, long ago, we stopped using the phrase "waiting for the other shoe to drop" and replaced it with "waiting for the other shoe to explode." This amused our case managers while puzzling other people who didn't live in the special needs bubble, but we felt it was an apt description. This was because that for many years, we had to be prepared for at least one of the children to suddenly "melt down." Meltdowns are painful and take hours to withstand and recover from, unless it's bedtime and you can just put them to bed and let them cry themselves to sleep. I remember when Miranda was about 3 (she must have been at least three because when she was 2 she called me Daddy and didn't learn the word Mommy until one day when Alex taught it to her in the backyard, where they could alternate yelling at me at the top of their lungs), she hated to go to bed and would scream for me as she fell asleep, at least once a week. Even if I lost my nerve and went in to her, she didn't actually want me. She just wanted to cry and scream my name as she fell asleep. I think this was when I started watching baseball in the evenings. If I turned the game up loud enough, I couldn't hear her at the other end of the house and the patter of the commentators was very calming. It didn't hurt that the Phillies were decent back then. Before the dark times. Before the Empire.
Anyway, meltdowns. Meltdowns are different from tantrums. A child (or an adult) throws a tantrum when they do not get their way, hoping that by making a large fuss they will get their way, and, when they do, they calm down instantly. A meltdown is when a special needs child overloads, not unlike a nuclear reactor, hence to borrowing of the term. We say they "fall apart" and cannot easily be "put back together." They can experience a sensory overload (too much noise, too many people, too dark, too light, etc) or a behavior overload (too many new things, too many questions asked, too many tasks assigned). We learned quickly with Alex that when we were planning to change something or go somewhere, he needed to know 20 minutes ahead of time, and then 15 minutes, and then ten, etc. Then he was expecting the change and we had a better chance of a smooth transition. When he started school, we needed to get ready in the same manner every morning, at the same time, and do everything in the same order. That was true at 3 and is still true at 13, although it's earlier, dammit. My alarm goes off at 6:10 because he needs nearly an hour to wander through his morning routine. He will not be rushed, and his school is now 45 minutes away and I'm not going to drive him all the way to Atco so he better be ready when the bus arrives anytime after 7:08 am. Ugh.
We have done the same with Miranda because, well, Alex trained us, and it was easier. What's interesting about the two of them is that Alex is a morning person. He wakes up cheerful and happy every morning, while Miranda, like the rest of us, moans and struggles to get out of bed and eats breakfast silently. I can't wait for her to move to the Intermediate school next year, where the start time is half an hour earlier, so her bus will be at least half an hour earlier, so they will probably get ready and leave at the same time. Boy, that's going to be fun.
The reason it's going to be so fun for me (not) is that their grooves are my grooves. I do everything the same way on school mornings because I can do it without thinking (I am not a caffeine first kind of person; my stomach won't tolerate it) and this way, everything gets done. I shove them out the door and get on with my day. And as I get older, I'm having harder times shifting my grooves. When next September comes, I will probably have to write out the new morning schedule with all of their activities intertwined so that nothing gets dropped and no one goes to school without their mood stabilizer. That would be ugly.
I had lunch with a friend today and when I talked about schedules and habits, she reminded me that we humans like schedules and habits because they do not require extra effort. We can go through the motions, literally, and still get the job done. But as I pondered this, I remembered the primary reason we got stuck in our grooves: if the child knows what's coming next and what's expected of them, the statistical chance for a meltdown decreases significantly. I spend so much of my time explaining to my children what comes next. "Remember, tomorrow Grandpa will be here when you get off the bus because I will be out with Grandma." "Remember, tomorrow is a half day at school so you will come home at lunch time." "Remember, we have to leave in ten minutes to take Miranda to choir." "Remember, you have to wear your school shirt tomorrow for the field trip." "Remember, in July, Mommy and Daddy are going away and Grandma and Grandpa will be here to take care of you and everything will be fine." And these are just things I've said in the last couple of weeks.
We don't experience the awful meltdowns of their younger years anymore. Miranda just flounces off to her room to calm down and Alex is able to explain now why he is upset and cry a little, but not explode. I remember when she was two, we had to wrap her up in her blankets and sit with our legs over her body to hold her still while she screamed until she calmed down (or was too tired to cry anymore) because nothing else would help. But she was easy, compared to him.
The staff in Alex's classes have always been trained how to put him in a therapeutic hold. It's kinda like a human straight jacket. Every year, at the annual IEP meeting, we sign the permission slip for them to continue to do this as needed, no questions asked. THE reason this school year has gone so well is not measured in his academic prowess or expanding musical talent, but in the amount of time since he's been put in a hold. It's been so long, I can't actually remember when the last one was. That has never happened before, in his entire academic career, which started in September, 2006.
The good thing is, Alex is not a self-injurer. You don't have to protect him from hurting himself. The bad thing is, you have to protect yourself and everyone else in the room. I don't think he's every had a teacher he didn't bite. I am not one of those parents worried about my kid being protected from a bully. I am the parent of the bully and I take it personally when he injures his teachers and aides. I joke that he may be the smallest in the class, but he's the meanest, but it's true. He can be effortlessly vicious.
I think his teachers in third and fourth grade stopped telling me about his bad days because of how badly I took the news. It would absolutely ruin my whole day. I started getting anxious at 2 pm because that's when I would get an email or a text about his behavior for the day. Strangely, it never worried them, which tells you just how often special education teachers get punched and bitten and worse. That's terrifying in and of itself. But as the parent, I felt responsible and I felt guilty, even when I knew, logically, that there was nothing I could do about it.
Eventually, in December of sixth grade, the district recommended a transfer to an all special needs school, which, again, felt like a failure on our part. But Archway has been a revelation and a haven and they are particularly suited to teach Alex how to cope when he wants to melt down, which is what they have done. No holds needed in recent memory. This is how I know God is good.
So blogging frequently is not conducive to a clean house. And my house cleaner is on vacation, bless him. Do you know why I have house cleaners? In January of 2007, Miranda was an infant and Alex was adjusting to going to school every day and working at school every day, I couldn't keep up with the house. I felt helpless and alone. And the Wednesday Women's Bible study took a collection and paid for my house to be cleaned in January and February. I don't have the original cleaner anymore. She went home to Brazil so she handed me off to her sister, also wonderful, who had a baby and handed the business off to her good friend. So now I have Rhawan. And he saves my life regularly. I have his number, if you want it.
When Alex was a toddler, I started seeing a real pee-sychiatrist (to quote Dr. Scratchandsniff) who diagnosed me with OCPD, Obsessive Compulsive Personality Disorder. It's not quite as debilitating as OCD and can be helpful. Can be. It still means I see every dust bunny rolling through the hallway and feel guilty about it but I can live with it, for now.
So why am I writing again tonight? Why do the words just keep flowing when for years--11 YEARS--I could barely write my feelings down to my dearest friends?
As I said (wrote), I've been talking with my therapist and my husband, and praying a lot more with my mother (it's wonderful; you should try it) and I felt ready.
I had a very frustrating winter. Marshall started a new--much better but still a little too exciting--job in January, leaving a long-time difficult position for something only 20 minutes away. So he's happy. Alex is thriving at Archway. Miranda had a very difficult third grade year but in fourth grade this year, it's been a lot smoother. She's more mature and, consequently (?) more cooperative. Marshall's father passed last August but by winter I was really moving past my intense emotions about him and remembering him wistfully, grateful for the good times. So everyone's good, but me. And I can't even lose myself effectively in books. I started listening to Ngaio Marsh's Inspector Alleyn books which are dry but usually interesting. Currently stuck in #19 (of course, I read them in order!), Off With His Head; such a boring start. They are the kind of books that you can listen to with half an ear, while you play Words with Friends.
Anyway, I was feeling stuck. Going through the motions. Nothing was engaging me. So much so that Marshall almost--seriously--bought me a convertible to cheer me up. And then I had the minor procedure on my shin that put me in bed for two weeks with a low grade fever and nasty antibiotics. When I complained to my dermatologist, she brushed my complaints aside, saying it looked like it was healing well and there's no more precancerous anything on my body. Well, that is what we pay her for. Redheads do not always have more fun.
In April of 2014, I found this article about Ongoing Traumatic Stress Disorder and blogged about it here. Apparently, it's a real thing now, called, by the experts, Continuous Traumatic Stress. Special needs parents are prime candidates. Aren't we lucky?
Anyway, last week, Marshall and I were talking about this and talking about how I feel so disconnected from everything. Stuck is the best way to describe it. I'm not moving like everyone else in the house. I should be feeling better, and I'm not. So we wondered if I'd finally moved into Post Traumatic Stress Disorder. The extreme stressors no longer exist, but my brain has been rewired and I can't just switch it off.
[Sidebar: In this house, we treat diagnoses as helpful descriptions of behavior that lead to helpful solutions and treatments. We try not to treat them like existential death sentences that limit all we will ever be. I learned this from another mom of a special needs kid who was incredibly kind to me right after Miranda was officially placed on the spectrum. She prayed for me and reminded me that God is never limited by labels and I should not see them as burdens but avenues towards help. Thank you, Amy. God bless you, too.]
So, if I have a working diagnosis of PTSD, that means I can get help. I am not condemned to live like this forever.
When I discussed this with my therapist on Monday, she thought it was a good idea to play with and told me to go home and pray about what it is that could be what's triggering me. And that lead me all the way back to 2006. All the way back to the beginning.
Why now? Everyone else is doing okay. Marshall's father is ill no longer (he was sick for a very long time), but is with Jesus. And something inside me said, I'm ready to say (write) all the words, look back through the feelings of helplessness and anger and grief and panic. Of feeling betrayed by God for having broken children.
The verses that I returned to again and again were from Matthew 15: 21:28 (MSG):
...[A] Canaanite woman came down from the hills and pleaded, "Mercy, Master, Son of David! My daughter is afflicted with an evil spirit."
Jesus ignored her. The disciples came and complained, "Now she's bothering us. Would you please take care of her. She's driving us crazy."
Jesus refused, telling them, "I've got my hands full dealing with the lost sheep of Israel."
Then the woman came back to Jesus, went to her knees, and begged. "Master, help me."
He said, "It's not right to take bread out of children's mouths and throw it to dogs."
She was quick: "You're right, Master, but beggar dogs do get scraps from the master's table."
Jesus gave in. "Oh, woman, your faith is something else. What you want is what you get!" Right then, her daughter became well.
This is how I prayed, as that beggar woman, for years and years and years.
Then, when I was at church, praying for YG last fall, (I think; I didn't write it down!), I was reminded of the story of the prodigal son from Luke 15. My father has spoken of identifying with the older son in this story, who has always done everything right and is incensed when his younger brother is treated to a feast simply for coming home and reconciling with his father. (If you do not know Keith Green's Prodigal Son Suite, you need to listen to it right now! How did we live before YouTube again? Here is the helpful link.)
As I was saying, while I was praying last fall, I heard God say "All I have is yours." This is what the father says to the older son who never forsook his father. All I have is yours. I was no longer the beggar woman, but the faithful child who is bitter that the father is celebrating a reunion with the screw up child. Jealous for favor that I had never lost but couldn't see through my anger.
I was a parent railing against God for the suffering of my son, and my own consequent suffering. I was looking at my friends whose kids weren't broken (not true, but it looked that way) and I was so angry, which is the emotion I've always used to cover up my grief. If you are familiar with the Enneagram, I am a very strong One which means my besetting sin is anger. Ah, anger, my old friend. It works as fuel for a while, but then it leaves you empty and more miserable than you were to begin with.
When I was growing up, after eleven, I was the good child. Oldest child, a daughter, hyper-responsible, rule following. Or, I thought I was. In my pride, I think I've kept this image of myself: if I do everything right, then God will bless me. God would never send me special needs children. But then he did. Didn't I deserve better?
Grace is unmerited favor. Forgiveness for EVERYTHING. God doesn't rate sins like we do, on a sliding scale. And it's a broken world. I am a broken person, but so are my children, just not in the way I talked about earlier. They are precious, no less worthy than any child. Their unusual wiring often makes them harder to live with, but I am not cursed by God to be a special needs parent. I am blessed by God, the same as other believers in Christ. My suffering is living with autism. It's a broken world and knowing Jesus will not save you from suffering. But Jesus says, "Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world." John 15:33b (NLT).
The song posted at the top is by Jars of Clay from their Good Monsters album, which was released in 2006. Funny thing, that. "I have no fear of drowning/It's the breathing/That's taking all this work." That's how I described my life in 2006 and for many of the years following. Begging for crumbs. But now I'm here, a blessed child of the father. God's favor never left me; I just couldn't see it.
All praise to the God and Father of our Master, Jesus the Messiah!
Father of all mercy! God of all healing counsel! He comes alongside us
when we go through hard times, and before you know it, he brings us
alongside someone else who is going through hard times so that we
can be there for that person just as God was there for us. We have plenty
of hard times that come from following the Messiah, but no more so than the
good times of his healing comfort—we get a full measure of that, too.
1 Corinthians 1:3-5 (MSG)
My mother gave me this scripture on Tuesday, right after I wrote "I Hate Change, Part 1," and was weeping when I described it to her. Many of my friends, in person and on FB, have come to me in the intervening days to tell me how much they appreciate my words. And this is one of the reasons why I'm sharing it so publicly. Another is that I think with my fingers, processing my emotions as I recognize them coming out of the words I am recording. I am not a journaling person, I am a correspondent. If I really wanted to remember some of the events of the last 11 years, I would ask a friend in Seattle to send me back the letters I sent her. Or read earlier blog posts. If I'm just writing for myself, it doesn't go anywhere. So, back to 2006.
We lived through the summer of Early Intervention. Sometime in August, my Early Intervention Case Manager escorted me to my first IEP meeting with the district. I have only vague recollections of the meeting. I signed what they gave me. I still didn't really understand anything and was having enough contractions to scare my doctor into prescribing partial bed rest. So I begged my mother to come stay with us to help with Alex. We just had to get through September, to 36 weeks. My due date was early November (I can't remember the actual date) but Miranda ended up coming by scheduled c-section on October 30, 2006. She was breach and not interested in coming out on her own.
Back to August. On your child's third birthday, he or she becomes the responsibility of the public school district. Alex's birthday was October 4, but the Mt. Laurel Child Study Team Director, Dr. Willard (who is still there, God bless her), decided it would be easier for Alex to start in September with everyone else. He would be in class every day from 8:30 - 12 in the Preschool Disabled program. There would be door to door busing (which he still has). Springville School is where the special education preschool students were in 2006. There were two classes then, one for high functioning kids, and one for everyone else. We were in the everyone else class, where the ratio of adults to children was 1:1.
I remember orientation day very clearly. All the parents and kids were invited to come see the classroom and meet the teacher (who was new to the district) and the aides. I wore one of Marshall's brightest, most obnoxious tye-died shirts and some sort of skirt that fit. I tend to borrow his tye-dies when I need cheering and want to make a statement. The other parents were and are lovely people. I'm still close to several of them. But it was a sobering experience to be in that classroom to see just how disabled the other students were.
And to understand, this is where Alex belonged.
I must have been in some kind of denial. (I was pregnant and certainly not thinking straight.) But it didn't come home to me until this moment just how far out of plumb Alex fell. Because for all they pretty talk about not comparing your kids to others because each child is an individual who has their own path, blah, blah, blah, blah, the ONLY way to discover just how much help Alex needed to make progress was to hold him up to the record of a child with NORMAL development and record all the ways he fell short. He was placed in the lowest functioning class in the district and, as I did discover over the years, it was the correct place for him.
Maybe, for the first time since the spring when he received his formal diagnosis, I understood just how far underwater we were. And it was devastating. In many ways, it was the providence of God that I was pregnant with Miranda for all of this time. I didn't think so at the time, since I was terribly sick for the whole pregnancy, had all those early contractions and had difficulty eating anything up until an hour after she was born. (Seriously, I was in surgical recovery right after they sewed me up and I was hungry for the first time since March and wanting as much food as soon as possible. I ate well during those 4 days in the hospital.) But God knew what was best.
If Alex had been diagnosed before Miranda's conception, we probably would have chosen not to have any more children. Statistics don't help families with one child on the spectrum; the chances that all your kids will have ASD go up from 1 in 70 to 1 in 7. But the world would have missed out and so would we. And Alex is far better off having a sibling.
And since I did this whole process as a pregnant woman, I was forced to take care of myself. I had to eat and sleep and visit the doctor frequently. However depressed I was, there was never a point when I considered self-harm because I wouldn't for anything have hurt Miranda.
There's probably another factor here: I don't think I would have otherwise accepted all the help offered to us from both our church family and our blood family. The church made us meals all through the summer. One of my friends watched Alex for all of my ob/gyn appointments. The women in the Wednesday morning Bible study prayed and prayed and prayed for us. The pastor and his wife, whose son has Down's Syndrome, encouraged us and listened to us at length. One friend gave me her teenaged daughter to help me at home about once a week at no cost to me and she did half the driving. I think I remember my brother in law both mowing the lawn and shampooing the carpet in our living room, just not at the same time. And my mother, who was working at the time as a part of the Urbana 2006 prayer team, spent a whole month with us. But I was so desperate that I swallowed my pride and said yes to everything. And accepted all of the grace offered.
I remember saying once that I don't think I prayed for that entire process. I couldn't get there. I had no words. But many, many, many others prayed for me, and it was enough.
