Saturday, May 27, 2017
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
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.
Wednesday, May 24, 2017
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)
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
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.
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.
Friday, May 19, 2017
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.
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.
And here's Kelly.