We find ourselves well into our second week of school, and I’ll have to say that this year is so much better than last year I can actually breathe! Last year we were living with my brother and his family, homeschooling Edward at my brother’s kitchen table and trying to find a house because we had just left our all of our dear friends in South GA and moved to Middle TN.
What a difference a year makes.
Still, mornings are challenging with our group. We all like to sleep late, drink copious amounts of coffee before we can focus on anything whatsoever, and all require complicatedly different breakfasts with multiple tinctures and vitamins.
Today our morning began with the sighting of an enormous centipede in the middle of the kitchen floor!
Now it’s not like we eschew bugs in any way–we do have a giant pet millipede named “Mills”–but something about waking up to such a large insect prior to the ingestion of a single milligram of caffeine is unholy.
I immediately called for the boys in a loud (and apparently freakish) voice that summoned the whole family from their slumber, and was not the best way to begin a school day. Their frenzied tromping, not surprisingly, frightened the creature and s/he slithered under the toe molding.
We banged, knocked, blew, and shoved makeshift shivs into the space in an effort to coerce the fellow to emerge.
No such luck.
H even grabbed my hair dryer and tried to root him out.
S/he could not be moved.
This did not leave a lot of time for the preparation of gluten-free toast without crusts, soft-scrambled farm eggs or slightly undercooked grits. (One child likes the “grits crunch.”)
Repeatedly running back in to the foyer to see if the ‘pede had emerged was also a time-waster.
Still, we made it to school on time and we should have a topic to write about during journal period. Maybe our writing will even be legible today! Who knows?
It was just a centipede morning.
It’s come to my realization that I’m a “now” kind of Veruca Salt-like person with some weighty patience issues. I want everything fixed NOW! I want my house clean now, my new curtains made now, my dining room carpet ripped up now, and weight loss now.
And I want my child to pack his own backpack now, make eye contact with adults now, finish his homework legibly now, and gracefully lose a soccer game now.
NOW!
God, however, is not a “now” kind of person. His timing is always perfect, but it’s rarely the timing I would choose at the time I’m assessing the timing.
(How many people have I lost at this point?)
I have been fiddling around with our gluten-free/casein-free/egg-free pancake recipe lately, and have found it hard to attain a lovely golden brown color on the outside while at the same time rendering the inside reasonably fluffy. When I turn the burner on “high,” I get a perfect pancake center with dark, charred-like outside edges.
Yet when I turn down the heat to try a more moderate approach, the pancakes look lovely and golden on the outside, but are runny-raw on the inside.
(At one point my children actually asked me if the liquid part was some kind of “pudding filling.” That just proves how much I have snowed them regarding my own cooking abilities because anyone who knows me remotely well knows I would never be able to carry off such a complicated culinary feat as a “pudding filling.”)
The other day, however, I was attempting to multi-task and craft pancakes at the same time, which only resulted in an equal amount of black-lace pancakes and raw dough ones. I finally turned off the burner and walked away in disgust, leaving the last pancake to languish in the pan.
When I returned, however, lo and behold I found the most perfectly browned, delicately cooked pancake!
OK, obviously many lessons can be learned here. When I leave things alone, quit pushing, and stop trying to control everything I slide over and let God take the driver’s seat.
Below you will find a list of most of the supplements, treatments, tinctures, educational options that we have tried over the years with our sweet Edward. I must confess, that before I started each one of them, I fully believed that this treatment would be the one to help us round the curve, crest the hill, truly make a “night and day” difference.
NOW!
I would hold dear all the conversations I’d had in waiting rooms with other mothers who “ooowed and awwwed” over this therapy or that intervention that caused their child to finally be verbal, or, gasp, even lose their diagnosis.
Here’s our list:
*Floortime * Homeschooling * Tutoring * Kumon *EMDR * Music Therapy* BrightSpark* Focus Formula* Attend* Memorin* GF/CF Diet * Feingold Diet* The Listening Program * TOMATIS * Interactive Metronome Therapy* Chiropractic * Defeat Autism Now Protocol (DAN) * Occupational Therapy * Physical Therapy * Social Skills Groups & Camps * “How Does Your Engine Run?” Program * Joint Compression *Brushing Therapy * Hippotherapy * Homeopathic Attention Aids *Social Skills Camp *Private School *Public School *Part-time Public School *Swimming *Soccer *Gymnastics *T-Ball *Superflex Social Skills *Model Me Social Skills *
Now I can add *Stimulant and Non-Stimulant Medications* to that list. Yes, I have freaked out for years in fear of all things pharmaceutical for my child. We tried mild stimulants off and on a few times last year with no results, other than 48 hours of wakefulness and lots of stimming and perseveration.
After meeting several times with a new psychiatrist, we have decided to try a different medication that, guess what, takes a rather long time to potentially work. The irony of this is certainly not lost on me.
Am I saying that my child is a slow-cook pancake?
Maybe.
Am I saying that God is teaching me to be more of a slow-cook pancake type of person?
Definitely.
Tomorrow we meet Edward and Joseph’s teachers for the new year.
I NEED MORE TIME!
I said I would go through the Greek and Latin vocabulary book with them over the summer. I even made color-coded index cards.
We learned three words. I hopes these words and their derivations are what my children encounter when they take the PSAT.
Instead or learning Greek and Latin, we:
Fed dead white mice to rather large Caiman crocodiles at a local reptile store.
I intended to organize my house, structure our days and create nifty chore charts.
Instead we:
Learned that it’s not that difficult to sleep in a damp swimsuit and coverup two, or even three, days in a row since then all you have to do is pop up in the morning, brush your teeth, grab a Rice Krispie treat, and head for the pool or beach. Such a time saver!
I planned to lose 12 pounds and finally fit into a two-piece swimsuit for the first time since Edward was born.
Instead, I created a self-portrait of myself at the beach as a “shadow” or “shade.”
I think I look like a Sleestack.
I intended on teaching my children that the most quiet, patient fisherman always catches the most fish.
Instead we learned that sometimes the loudest, most active fisherman catches the only fish…
Like it or not, school looms…
A common frustration of parenting a child on the autism spectrum is the reality that most insurance policies will not cover social skills groups, and those helpful groups are generally quite pricey. Our occupational therapist has wisely combined OT, (which is covered by our insurance), with social skills, and we recently began doing joint sessions with another boy of a similar age and diagnosis.
So the second time we met with this boy, he and Edward were playing contentedly in the waiting room, bandying some kid’s meal car back and forth while the therapist and I discussed the plan for the hour. All of a sudden out of the busy din of waiting room conversation rang a clear, rather piercing question:
“So, do you have Asperger’s like me?”
The little boy glanced sideways at Edward as he asked, almost, but not quite, making eye contact.
Edward looked at him, looked at the car, and continued playing in apparent oblivion.
To his own credit, the boy could not be deterred, and he fired the question again, this time more loudly to the packed waiting room:
“So, Edward, I said, do you have Asperger’s like me?”
Edward met his gaze, and in mildly exasperated tone of voice fired back, “I do not know what you keep talking about, but I do not have that!”
The therapist and I exchanged a troubled glanced with the boy’s father, and the boys were quickly ushered into the OT room.
Later, our therapist told me that she felt it was time to share Edward’s diagnosis with him because it appeared he was ready to understand it to a certain extent and because more and more of his peers knew about their own diagnoses and would be asking him questions about his.
This is not the first time I have heard this particular advice. I have also heard a plethora of advice against sharing a diagnosis with a child this age.
A bit later in the van, I asked Edward what his friend kept talking about. His response? “Yeah, I don’t know what he was talking about. He kept going on and on about ‘ass boogers‘ and I most certainly don’t have those. That sounds kinda gross…”
(insert grin here)
I went on to accurately pronounce the term and describe some of the characteristics of Asperger’s–how it was similar to ADHD, with which he is quite familiar–and how people who fall into that “camp” sometimes have challenges with social skills and making friends, paying attention and sometimes handwriting and a few other things. We also discussed many of the amazing advantages of having a brain structured like his, and how God had created him so uniquely for a specific purpose.
“Oh, well, yes, then I do have that. I absolutely have that Mom. That’s me…”
You could have knocked me over with a hummingbird feather.
Something I had agonized over and fretted over, something that had kept me up countless nights debating and praying over, was as easy as telling a child he needed to use a special pencil grip or might hit a baseball further if he used a lighter weight bat.
Over the past few weeks, we have had occasion to discuss Asperger’s in much greater detail. He now knows that several of his friends bear a similar diagnosis, and that has made him feel like he is most certainly not alone.
Based on a few comments he has made, I believe he is even recognizing how his difficulty reading facial expressions and body language often confuses him about what a friend is trying to do or say, and now he knows that Asperger’s has something to do with that. All of a sudden the social skills classes make more sense to him.
What was before so confusing, now has a name. That name gives meaning to his own feelings and experiences–both those that are challenges and those that are gifts.
I’m sure that in the days and years to come, this conversation will develop further complexities and nuances that are peacefully lost and absent today.
Yet today, I will revel in the simplicity of an eight-year-old who hears this diagnosis and does not cringe, does not question and does not fear.
That’s what I embrace today.
Since Elizabeth is at the beach this week with our kids, I’ve received permission to “guest post” here and offer my own perspective into the meaning of “Three Channels”.
I am Elizabeth’s husband, and am the one in the relationship that remembers our anniversary each year and can accurately recall the year in which we were married. We have a crafty-looking paint-your-own-pottery plate that Elizabeth decorated and presented triumphantly; it describes our family and boldly says “Est. 1996” – it is a beautiful plate, but we were married in 1994. We did acquire a pretty good dog back in ’96.
I like to drink coffee and Tab (not together); Tab reminds me of my grandparents and, without the continued support of folks like me, we may be in the final days of Tab. Drinking Tab makes me a statistical outlier, and I like that. I think it’s fun when a waiter or waitress asks “what would you like to drink?’ to reply, “do you have Tab?” So far they don’t.
Today, sales and marketing professionals collect consumer information and analyze buying patterns on a massive scale. They define market segments, and develop marketing campaigns and targeting strategies to appeal to prospects and individual customers. Technology is enabling mass customization and personalized marketing that would have been impossible to achieve even on a small scale just a few years ago. Chief marketing officers take great pride in how creatively they can personalize their brand and message down to an individual consumer. While this may seem cutting edge, it’s a concept that is as old as time itself.
On the sixth day of creation, God foreshadowed both Jesus and the Holy Spirit when he said “Let us make man in our image.” Even since then, God has been executing His plan – a plan that leverages His absolute knowledge of each of us into personalized and easily accessible opportunities for relationship with Him.
It is difficult for us today to imagine the Old Testament concept of God these early people had as neither Christ nor the Holy Spirit had been fully revealed to them. Prophets began to hear from God and foretold the next epoch of God’s manifestation of Himself to His people – Christ’s ministry on earth. How unbelievable it must have been for the few people who actually got to see or hear Jesus, the Lord incarnate. The overwhelming population, however, as a circumstance of time or geography, could not participate firsthand in Jesus’ life events.
Jesus’ disciples were appropriately sad when He told them that He was going away. Jesus explains in John 16:7 “But I tell you the truth: It is for your good that I am going away. Unless I go away, the Counselor will not come to you; but if I go, I will send him to you.” These were men whose best friend was, literally, the Son of God. Because they would have rightfully considered Jesus to be irreplaceable, the idea that a complementary third channel of God, the Holy Spirit – equal in power, relevancy and relationship – was abstract to them.
At each stage in the Lord’s revealing of Himself – first as God, then as God together with His Son Jesus; and finally the Trinity of God the Father, Son and Holy Spirit – God is in direct fellowship with an increasingly large number of people. Because of God’s infinite capacity, through the perpetual ministry of the Holy Spirit, He is able to have an ongoing, individual relationship with an infinite number of people. It is a degree of complexity and personalization that is incomprehensible.
So while the Coca-Cola Company probably doesn’t know me, and has no idea that I drink Tab, God does and I’d like to believe He thinks it’s funny – because, after all, that’s just how He made me!
A ten-year-old may ignore the start of stomach troubles and insist on consuming a Number 5 Mexican combo to impress his 11-year-old friend. Later, in the wee hours of the morning, this same boy, might run for the bathroom, sailing over ten feet of carpet and his sister’s giant wooden doll house, yet not making it to the bathroom before a Mexican eruption takes place throughout the room.
(Come to think of it he does look a little peaked here.)
This vesuvius might lead a weary mother to scream into the night, “This will never, ever, ever come out of the carpet! It’ll have to be ripped up! There’s no hope! No amount of steam cleaning can get this up! I don’t know why I ever agreed to buy a house that had carpet again!”
This mother will then need to sheepishly apologize to her ten-year-old for Mexican fest throw-up blame.
The next morning, this same mother may reluctantly rent a steam cleaner and proceed to spend seven full hours steam cleaning not only the upchuck room, but also every other wretchedly carpeted room in her home.
She might overzealously attack the playroom, vacuuming up gallon after gallon of muddy, play dough tinged soup. Exhausted, she may proclaim the entire house spotless, and go to bed at 8 pm.
The next morning, however, she may awaken to a troubling, moldly smell emanating from the playroom. She may rush to Home Depot in a panic, be told that she has soaked the carpet pad and will need to rent an industrial sized dehumidifer as well as several oversized fans in order to have any hope of drying out the carpet pad.
As directed by the Home Depot professionals, she may spray a mold deterrent product all over the carpet and work it feverishly into the carpet pile using her bare hands. She may discover this is an effective way to remove her own fingerprints, and may spend the next several days with band aids covering each raw fingertip.
In a fit of anger over the destruction of a rather complicated artifact out of floam, an irrationally impulsive 8-year-old boy might “accidentally” shove a plastic throw-up bucket on his five-year-old sister’s head. (The bucket was rinsed out, but still!)
(The above is a reenactment.)
If this boy does such a detestable act, he will most likely find himself locked in his room, Mead Composition journal in hand, with a command to write ten legible sentences in cursive detailing why his actions were wrong. He could possibly miss a coveted trip to an agricultural museum and a promise of actual goat milking.
(Below you see this child convincing his sister to push him around on her “princess choo choo” while he simultaneously consumes a Rice Krispie treat and balances a hard wood floor sample piece my husband brought home after I told him the carpet would never come clean.)
While locked in his room, he might write the following:
“I dumped a box that Joseph barfed in on Sue. I’ll never do that again. Now I’m in big trouble and have to write sentences. Right now I am on #4. This is my best handwriting. This is also hard. The words that I am writing are a punishment. I’m missing my lunch. I can’t think about anything else to write. I’m starving. This is my last sentence.”
I haven’t even started writing about the goat milking…..just wait!
I’ve experienced run of rather dry gluten-free cupcakes of late, so I decided to try Arrowhead Mills Gluten-Free cake mix for Sue’s 5th birthday.
(I don’t think I’ve mentioned this, but Sue was recently diagnosed with a gluten intolerance so we are forging ahead now with two gluten-free children!)
The cake turned out quite well, and was a bit dense but not at all dry like the Betty Crocker. Sue and Edward thrilled to the gluten-free confection after suffering through a ridiculously large batch of gf cupcakes I made a few months ago and froze. (Maybe the freezing dried them out further…)
Even Joseph ate a large slice of cake and he is the biggest gluten-free snob I know.
I’ll be using this mix again!
Disclaimer: I bought this mix myself and was in no way compensated for this review!
One of the most frustrating aspects of parenting a child on the high-functioning end of the autism spectrum (whatever that means these days) is the incredible disparity in behavior. Since we recently moved to a new town, we have had so many situations where Edward attends an event, behaves in a rather typical way, and things go rather smoothly.
Other times his behavior is so outside-the-box that both parents and children are looking at all of us oddly. Sometimes I have to give an explanation to the parents.
It’s this roulette wheel of behavior and expectations that absolutely exhausts me. Despite my best efforts at maintaining a great sensory diet prior to the event, making sure he is well-rested and well-fed, often times my best-laid plans just fall into an abyss of tantrums, incessant questions or just abject hyperactivity.
We’ve had great experiences, however, at our neighborhood pool during the past several weeks. The combination of the water and activity coupled with frequent snack breaks makes for a relatively calm outing. I have even allowed him to run off with his brother to the other end of the pool for short periods to play hide-and-go seek with the other children their age. And he has stayed with his brother! This is a big milestone for us, because before, he would run away the first chance he felt any taste of freedom.
Yesterday, however, I learned an important lesson about how Edward sees the world. He had been playing with Joseph and two other boys we met through baseball. The older boy wears glasses, so about half the time he wears them at the pool and the other half he takes them off. All four boys were playing hide-and-go-seek peacefully, giving me a chance to help Sue with her own swimming endeavors.
When we got in the car, however, Edward started talking about there being two boys named “Joshua.” Joseph said something like, “Well, I don’t know who you are talking about. We only played with Joshua Smith. There weren’t any other boys around.” And Edward said, “Well, there was the Joshua with the glasses who is eleven and pretty tall, and then the Joshua without glasses who is also eleven and pretty tall. We played with both boys, right?”
At that moment I realized that Edward could not read the boy’s face well enough to tell that he was the same person, glasses on or off. I suddenly felt this great rush of empathy for him, and how confusing the world must be for him at times. I started to feel so bad for the frustration I feel toward him when he doesn’t recognize a friend’s parent or a teacher he’s seen many, many times.
It was a good learning experience for Joseph, too. I believe it is incredibly difficult for Joseph to have any concept regarding what the world looks like from Edward’s perspective. Because he doesn’t understand these differences, he has little patience. This event, however, gave Joseph a little taste of how Edward sees the world.
It’s a taste we all need more of…
I decided today was the day to try to do something about the troublingly stained champagne-colored carpet in my dining room.
Yes, dining room.
Who puts carpet in a dining room, you ask? Well, the person who owned this house before I did. She had three young children, too, so I’m not sure what she was thinking but this carpet is nasty.
I even thought about pulling it up and painting the subfloor a distressed white but I took a gander at the subfloor and it is far to splintery for my household.
So I settled in this morning with a fresh white cloth and a brand new bottle of carpet cleaner. It was actually quite peaceful. I listened to talk radio and tried to catch up on current events, as relaxing as that could be in this day and age.
I was well into my project, faithfully scrubbing away at a deeply set-in spaghetti sauce stain when Edward shot past me at record pace, a panicked look on his face as he screamed,“Ohhhh noooooo! And it was a permanent tooth, too!”
I actually kept spraying and blotting. I think I was giving myself a moment to compose my thoughts and prepare to meet a ten-year-old missing one of his two front teeth.
I mentally calculated how much some sort of dental implant might cost, along with the knowledge that most dental insurance plans don’t cover cosmetic dentistry.
I could hear Edward in the background wailing from his self-imposed exile: “A permanent tooth! A permanent one. They don’t grow back! Aghhhhhh!”
Then I remembered some rule about putting knocked-out teeth in milk to preserve them for a possible re-implantation and realized I had to face the truth. I hurried over to the playroom where I found Joseph and Sue on their hands and knees searching through carpet and wailing, “It’s got to be here somewhere!”
Sound familiar?
Joseph stood up, clutching his mouth, and delivered the news with a hopeful look, “Only part of it is gone. It was a permanent tooth, but part of it is still here, and the other part is in the carpet somewhere. I think.”
He jumped back down and dutifully continued to sift through the shag. I knelt down next to him, steeled myself to the possible blow, and asked him to open his mouth. To my utter relief, only a half-moon shaped chunk was missing from one of his lower middle teeth.
A sharp shard poked forward to be sure, but it was nothing like the horror I had imagined.
I smiled. He looked afraid.
“If I find the piece, do you think they can graft it back on?” he asked, hopefully.
“I’d just like to hear the story, if you please,” I said calmly, fully expecting the dreaded word “wrestling” to be front and center.
Joseph began sheepishly, “Well, I was just sort of wearing these boxing gloves…”
“I don’t need to hear any more.” I countered, my confidence building as I imagined the scenario.
“Well, it was his head that knocked into my mouth.”
Isn’t it always?
We’ll be visiting the pediatric dentist in the morning to find out what can be done. In the meantime, the dentist warned us that further wrestling, roughhousing or consumption of crunchy foods could make the situation worse, or cause the jagged tooth shard to impale the lip.
A few hours after the event, everyone was eerily quiet. I hunted them as I typically do in these situations and found them piled on Edward’s bed…reading the Bible together.
They are good.
Too good.
