In Which Andie Takes a Swan Dive Off the Deep End

I have been bent and broken, but - I hope - into a better shape. --Charles Dickens

Continued from….whatever the last blog post was called. “The Next Chapter” or something. Well, this is the Next Next Chapter.

It never ceases to amaze me what humans can adapt to. The frog in boiling water analogy probably puts it best--the issues with Gabriel arouse so gradually, we didn’t realize the sum total until we were firmly entrenched in it.

Our sweet son had been with us already for a year and a half. He wasn’t sleeping and would not give up that bottle or pacifier, but babies gained skill in their own time, you couldn’t rush it. And yeah, he was pretty sensitive to sound. But we kept the house so quiet all the time, he was probably not used to it! As for the social things--the lack of eye contact or meaningful play with other kids at daycare or his sister...well, I had read that girls were more socially motivated and boys more motor-oriented. Plus, no one would exactly argue that I was the friendliest little butterfly. Yeah, that makes sense. Nothing to worry about.

You also have to remember that at that time, Michael and I were wholly and fully nuts. We hadn’t slept--really slept--at this point for quite a while, and we were suffering for it.

Most can relate to the tiredness thing; we have all gone through stints of insomnia for one reason or another. Anyone with a child has fallen victim to a two-hour feeding schedule or an all-night vigil for a vomiting kid. Sacrificing your oh-so-important rest is just one of many you will make for your baby. When I talk about the dazed confusion of a exhaustion-addled mind, chances are that you are nodding along going, “Been there”.

We had adapted to the difficult circumstance; it was time to turn the heat up.

Gabriel started walking around 17 months old; just on the line of when I should be concerned, but not over quite yet.Emerald was a late walker too, so it wasn’t such a big deal. What always struck me is that he learned to climb before he learned to walk. Was that normal? The baby gate didn’t keep him out of anything--he just crawled faster and powered his way through. Barriers were scaled as though they were nonexistent. Putting him in the pack-n-play was only effective if he wanted to be in there; if he did not, he would throw his weight against the side until it tumped over and he could crawl away.

His crawl was an odd (but not so unusual to be concerning) bear crawl where he scuttled along on his hands and the tips of his toes. Almost freaky to see, like a spider crab creeping across the carpet with almost alarming speed.

There was a complete lack of regard for his own personal safety. He couldn’t be left anywhere unattended--he performed belly flops out of his crib, sat atop bookshelves, launched himself off playground equipment.

I remember at the time, my mom teased me, “haven’t you figured out how to take a shower while they are napping yet?” It was good-natured and probably instructional, but I wanted to take my toddler by the feet and hit her with it. I was never in a playful or teasing mood at the time; my nerves were jangled from having a near-constantly crying child that was determinedly trying to injure himself that hadn’t slept since he was a fetus. My main past-times were crying, yelling, and constantly chasing said child around to prevent a catastrophe.

Other parents would helpfully say, “You know, you can’t take your eye off of them for one minute,” while they watched me clean up a mess Gabe had just made. Thanks Mad-Eye Moody, for the advice; now either grab a broom or piss off because I am about five seconds from tearing you a new one.

Gabriel started going to the Parent’s Day Out program on Mondays and Wednesdays when he was 9 months old, the same that Emerald attended. We were getting more incident reports--he spilled the bottle warmer water all over himself, he dove headfirst out of the high chair, pulled a bucket of toys down on his face. Ha ha, boys will be boys, right?

The director of the daycare called us for a sit down meeting. Sitting in those tiny plastic chairs in a circle, we prayed for Gabriel and for this meeting, that God gave them the right words to help Gabe. What a weird thing to pray, I thought.

Gabe’s teacher, a kind, earnest woman, began to describe problem behaviors that she had noticed. He was struggling to walk, barely able to make it more than a few steps before he fell down. That didn’t stop him from trying to run away, though; he threw the door open and took off the moment the opportunity arose.

She described something she called “staring episodes”. She mentioned absence seizures, where the individual just seems to clock out for a few brief moments. Gabriel’s eyes would slide out of focus, glaze over. During this time, he was unresponsive to stimuli--she would clap her hands in front of his face or snap her fingers, touch his arm, say his name. Nothing would pull him back to reality until he pulled himself back.

We had noticed this behavior at home; we just attributed it to him being a deep in thought. Thank you for bringing this to our attention, we will certainly take him to a neurologist. -Nod nod- Absolutely, thank you.

That is when they dropped the million dollar word:

Autism.

….I wish I could describe how I felt in that moment. All the cliches come to mind--floor out from under you, breath knocked out of you. It felt like everything and nothing. Surreal. Clarifying. Dreamlike.

It felt like the universe held up a giant sign that said “DUH!!!”

How did I miss this? I mean, if you were to paint a picture of classic autism, Gabe is the perfect candidate. The aversion to touch and sound, the sleeplessness, recklessness, avoiding eye contact, the perpetual motion, lack of speech. Everything clicked so neatly and beautifully into place that I was shell-shocked for days.

What...what was I going to do with a special needs child?

Forget for a moment that, strictly speaking, I had already had one for eighteen months. This felt like a death sentence that things were not going to get better. It was a theft of hope, because the prognosis for autism...it is one big, life-sized question mark. You have no idea where it is going to go, what it is going to look like. Hell, you don’t even know what you are supposed to do. If you get strep throat, you get an antibiotic, done and done. You have autism? Welllllll…..

Despite all the advancements, how far we have come in understanding ASD, you would be genuinely shocked about the rampant misconceptions that still linger.

To Michael, who was somewhat of a layperson when it came to autism before this, the term "retarded" kept floating to mind. As offensive as some of us will find that now, the terms went hand-in-hand for so long that it is an understandable connection to make. What was his quality of life going to look like? What sort of impairments are we talking about here? How we were we possibly going to care for a child with a disability we knew so little about?

I was still enrolled in school at this time. I don’t know who I thought I was fooling, attempting school that semester. I’m not the type to fail a test, but I hadn’t gone to class since the meeting at the daycare, and I failed in a glorious blaze of humiliation. Below my score, the teacher had written in red “see me after class”.

We sat in the hallway and he said he didn’t know what was going on with me, but he was there if I needed to talk. I said nothing, my eyes filled with tears. I couldn’t say anything, because if I did, then this was real. My son was autistic and my dreams of being a doctor were officially dead. I did not return to that class for the rest of the semester, an easily-avoided F that haunts me.

Our pediatrician at the time, Dr. Striping, was great. He didn’t want to talk about autism until Gabe was older--he was old-school in that regard--but he was happy to write referrals to whoever we wanted to see.

With medicaid and  many insurances, you have to get a referral from your primary care physician to get in to a specialist, a fact that has stalled more than a few parents as they have sought answers.

If you have a good pediatrician and speak with knowledge and confidence, you get your referrals to get evaluated by therapists, to see specialists, get tests done. If you are unlucky, have a pediatrician that is stingier with referring out, if you don’t insist in the right way...it can be a lot more frustrating of an experience. Personally, from this side of the bench, I really can’t understand why a doctor would deny the request honestly. That has been my line as I serenely smile: “What does it hurt to check?”

Should ECI comes out and see there is no need, they will say that and you will be denied services. They have such heavy caseloads and get paid salary, not hourly or by the patient, that they will never fudge the numbers on a kid “just to get paid”.

A friend of mine--Stacy, who did continuity of care for a home-therapy company--put it best when she said, “You don’t take a sore throat to a speech therapist and expect a diagnosis; why would you have a general practitioner evaluate a speech delay?” And she is absolutely right. Doctors, send it out. What exactly is it going to hurt?

Obviously, I realize there is another side to this, and if you would like to read more from the other perspective here is an excellent article: http://health.usnews.com/health-news/patient-advice/articles/2016-04-07/whats-behind-that-medical-referral

Off my soapbox, I promise. Sorry.

Anyway, we got lucky. Excellent physician that we loved very much. Even though he was not personally concerned, he knew that we were and he was happy to send us to whoever we needed to see to get peace of mind. Dr Stripling said that the staring episodes needed to be evaluated by a pediatric neurologist; the other symptoms we saw, they could be attributed to difficulty hearing. He got us in with an allergist/immunologist to do some testing, see if his considerable allergies were causing chronic sinus infections that would interfere with his hearing. We also got one for ECI to start evaluations, for an ENT, and an audiologist. Finally--and he warned us that it would take months to get in--he faxed over a referral to a developmental pediatrician.

The first specialist we saw was Dr. Brown, the neurologist. Potential seizures are serious business that cannot wait. This was October of 2010. Dr. Brown ordered a “sleep deprived EEG”. The nurse explained in the pre-appointment phone call that we would be required to keep him up all the night before to perform the test.

Michael stayed up with me that night so he could drive us the next day. It was honestly harder for us to stay awake than it was to keep Gabe up. We just watched movies and prayed for daylight.

Once in the car at 6 in the morning, Gabriel started to relax and drift off. Michael would stop suddenly and jerk him awake because we couldn’t let him fall asleep now--it would ruin the results of the test and we would have to reschedule, do this horrible thing again another night. At one point, he was nodding off and I had to pinch his little baby leg to startle him. He and I cried all the rest of the way there, but we made it.

There were wires attached all over his head and he looked so small and fragile, just a baby connected to a machine. He got to sleep through the test; we were glad he was getting the rest he so needed, but we were also aware what this meant: we ourselves would not get to rest when we got home. It was okay. As long as our little guy was taken care of.

After forty-five minutes, they peeled all the little sensors off. His hair was absolutely wild from having the things stuck all over his head. They sent us home with the promise they would call within the week with the results.

With the first specialist down and four more to go, we took our now well-rested and wakeful child back home.

--Andie

The Next Chapter in Our Story

This is story is continued from “God Is My Strength”.  “http://weardenfamilynews.blogspot.com/2016/05/god-is-my-strength.html”.

Gabriel had just been born, and Michael was fired from his job at the call center.

There is a concept in video games known as draw distance or render distance. Put simply, it is the maximum distance you can see out in the fictitious land from one immobile place. Done well, it can convey the enormity of an open world; done poorly, it is like wearing bad glasses where the further out you go, the more blurry and distorted it becomes.

Metaphor within a metaphor, better get to my point.

The time after Gabe was born is a lot like poor rendering. I feel as I stand here in my clarity like everything from that time is shrouded in a thick fog, isolated events and moments fairly obscured. Part of it was because of baby brain--I was pregnant more often than I wasn’t in those couple of years, and my body was having trouble recalibrating to its new normal.

The biggest cause may have been the sleeplessness. Gabriel did not consistently sleep through the night until perhaps the last year, and even now I say ‘consistently’ with a significant amount of hesitancy. From birth until the age of three when he could receive nighttime medicine, most 24-hour periods he got a nonconsecutive two hours of rest.

Someone had to be up with him during that time. Michael worked full-time; I couldn’t because the cost of daycare was outside our means, and because I was still going to school part time. All days and most nights fell almost exclusively to me. That is not to say that Michael had it easy or that he was not contributing. It is just one of those things.

That is why I have had such a time writing this; why it has been two months. The next page in our saga was not the most difficult; steadily our lives were improving, things were getting better. We would look back and laugh at some of the parts that made us want to cry at the time. Some parts, like the dirty taco restaurant near our old apartment, we would remember almost fondly. Others, like the day we got evicted...we don’t really talk about those. We bundle them up in the smallest parcel possible and stuff them way in the back of the closet of our hearts where we don’t have to see or think about them anymore. This blog series has been our first revisit to many of those memories.

A reluctant return in some cases; there is quite a lot I'd rather forget, let the render fog just….wash away.

To know Gabriel now, you couldn't even imagine anything bad about him. He's so gorgeous, loving, affectionate. His beautiful brown are always deep in thought. He likes to cuddle up next to you and give sweet kisses, loves Veggie Tales and docilely flipping through the Bible.

I don't want to take that image from you; that is who he is. There is kind of this unspoken code that you don't talk about the worst bits. People start to think the worst of your child, of autistics in general. Wonder if they are a danger to be around or allow to be with your children. It makes daycares feel justified for turning away special needs kids as liabilities. Churches feel like it is appropriate to ask a family to worship someplace else.

Everyone I tell this little tidbit to (particularly Christians) are absolutely horrified by it, but that doesn't detract from the truth:

I do not know a single special needs family that has not been kicked out of a church.

The manner, the politeness, may vary, but every one I have encountered shares this common experience. I have a friend that took her child to Sunday School, one they'd be attending for years, to find a group of parents clustered around a notice posted inside the window like Martin Luther’s theses nailed to the door. It was a letter from the church with her name clearly at the top telling her they would no longer accept her child in bible class or the church-run daycare.

People who hear that balk, and insist that surely their church would NEVER do something so horrible. How is that a Christian attitude, they demand. For didn't Jesus say, “suffer the children unto me”??! That is simply and utterly outrageous!

….except that it's not. Should be, but that's not how it always works out. Having a neurodivergent or differently-abled child is one of the most cripplingly, devastatingly lonely journeys. You feel like the whole world has turned their back on you, this is something you have to face--and bear--alone.

You'll often hear me say how lucky I am to have Gabriel, and I still fully, emphatically mean it. I adore him. Plain and simple--I've loved him hopelessly since the day he was born and every day since.

I find myself trying to sugarcoat it. Pulling my language; don't want to scare you away, dear reader.

Then I ask myself...who softened the blow for me and Michael when we were 22 and 24 (respectively)? Who pulled punches to protect our innocence? We made it through; this story is one of triumph, not defeat. We were not especially blessed, uniquely qualified, or graced with particularly robust patience. Quite the contrary: ask anyone that knows me well and they'll tell you I'm a cantankerous, ill-tempered troll better suited to scaring children from under a bridge than rearing them.

I'm resilient though, and stubborn as they come. Michael, too. And we have a God that has not abandoned us or failed us for a second.

Gabriel as an infant had to be in motion. Benjamin as a baby was squirmy--he liked to roll in your arms like a manatee on crack, but Gabe was different. If his body stopped, he was gale-force squalling.

It was so pervasive in our lives that Emerald, at the tender age of two, developed anxiety and started showing signs of stress. Her parents day out program called us to in to have a sit down meeting. They were concerned because whenever the classroom got louder (which it is wont to do, full of toddlers), she would wring her hands, twist her shirt, and yank out her hair, babbling incoherently. If it got to be too much, she had a meltdown or ran away, behaviors generally frowned upon in daycare.

I internalized this, of course. Blamed myself for keeping our house too quiet, not exposing her to more at a younger age. We called for an Early Childhood Intervention (ECI) evaluation, where she qualified for speech and occupational therapies. ECI is a government-funded program being part of the school, so you can go ahead and judge me for being on that one as well. Medicaid reimbursed them for coming, which is weird that the government insurance was paying for a government program, but I'm not going to overanalyze it. Even if we weren't on Medicaid, ECI saw you--if you qualify for services, you get services.

Speech helped her gain language; OT taught her self-regulating, soothing techniques. For her brief stint as only child, she really was the perfect baby. Bright-eyed and intelligent, eager to please. She was so happy all of the time. The transition was difficult for her. She adored her baby brother, always wanted to hold him, play with him. It was a big adjustment, though. Always is.

For one thing, we were co-sleepers. We tried to do the crib thing, cry out, read all the books on getting her out of our bed, but honestly, I liked holding her. She was warm and squishy and smelled like milk and lavender and undiluted joy. It made me feel safe having her close-by in case there was an emergency, and it helped me bond with her when it didn't come as naturally to me as it should.

When Gaby was born, I had to be available to him for feeding. I had the night shift then. Emerald stayed in our bed, but I slept on the sofa near Gabe. Over the next several years, I tried to move back into my bed with my husband, but more often than not I was on that tomato red couch. It was where Gaby was, and Gaby needed round-the-clock care.

Writing it all out, things fall into place a bit better than they had at the time. I didn't know I still harbored feelings of guilt for Emerald’s anxious behavior until just now. I can also see how we arrived at the place where our family was divided neatly down the middle: Daddy and Emerald, Mommy and Gabe. Michael and Emerald had our bed in the back; Gabriel and I took the other end of the house. No reason for everyone to be up.

For hours most every night, I would walk the baby in circles: through the living room, across the dining room, into the kitchen, front hall, then back again. At the start of the night, I would sing. That's what you do for babies, right? You sing. Gaby hated my singing though, so after a while my voice would peter out until all you could hear was the rhythmic patting of my bare feet on the linoleum. If I stopped, my tiny son would start to cry again, so I kept going for as long as I could stand.

The swing didn't move fast enough for Gabe’s liking, the gentle gliding motion not neatly vigorous enough; when I needed to rest, I strapped him in and coaxed it along with my foot, nodding against the wall and jerking back awake until dawn.

In June 2009, Michael got a job selling cars at Scoggin Dickey. It was often thankless work, 10 hours of standing on scorching asphalt six days a week to sell cars to the rudest, most ill-informed consumers in existence. Everyone buys into the crooked, cheating car salesman so full-heartedly that it has almost become encoded in our DNA to mistrust them. The company treated him very well, though--as long as he was trying, they took care of us, sales or no sales. The paychecks were inconsistent amounts; we never knew how much we would have to work with until it came through on payday. We made do. It was no extravagant lifestyle, but we were surviving.

The demands of the job were taking a toll on Michael; it is exhausting work, and he was unaccustomed to the sheer force of hatred directed at him from perfect strangers. He periodically applied for other jobs all over town, but nothing else ever came of it.

He left at 7.30 to get into his office by 7.45. The kids and I would go out on the front porch and have picnic breakfast in the cool morning, watching people heading out. Emerald would color with sidewalk chalk or play with bubbles while I would gently push Gabe back and forth in the stroller. When it got too hot, we’d go inside. Emerald’s favorite movie at the time was “Meet the Robinsons”, so we would all three pile together in the recliner. Run time at 1 hour, 42 minutes, if I could get Gabe calmed enough to sit--or, if I was exceptionally lucky that day, asleep--I could get an hour or so nap, so long as I kept the chair rocking while I did it. It wasn't the ideal situation, but it worked.

The commute to the dealership wasn't far--ten minutes each way--but gas prices were so high that we tried to drive as little as possible. Despite the cost, Michael drove home for lunch most days. I couldn't make it an unbroken nine hours; if he was with a customer, it could be even later. He could have saved the money and take his lunch at work, but he trekked back and forth to offer relief to me.

Living it, I didn't realize anything was wrong. I knew I was tired, and that I actively dreading going to bed at night because night was the worst time. Children are all different though; probably just colic. A phase. He’ll grow out of it and things will get easier.

With reassurances like that, our days faded in and out much the same way for a year and a half.

A Day in the Life

Prompted by my dear Karla Black, who asked: What is your typical day?

Our day starts precisely when Gabriel decides it should. He is our rooster of sorts, for whatever time he has deemed appropriate on that particular day is when he--and consequently the family--rises.

If his tablet is within reach, he will turn on his shows at maximum volume (so that every family member may enjoy) and wander up and down the main hall of the house, laying down with each of us in turn until we all resign ourselves to being up for the morning. This usually occurs somewhere between the hours of midnight and 6 am.

If Michael or I has had the foresight to plug in the iPad the night before, Gabriel assesses his immediate needs. Is he hungry or thirsty? Then his first stop becomes the kitchen, where he jimmies the lock on the fridge or hulks the door off the cabinet in order to obtain something appetizing; this (if he is able to open on his own), he dumps the entirety to the kitchen floor, eating perhaps 1/18th and smashing the rest beneath foot. Should the tantalizing treat be too tricky to open unassisted, he brings it to his somnolent parents and throws it atop us, repeating as often as necessary to achieve desired results.

When urination is his first and primary concern, he will lay down next to his father, nestle close beneath his arm, and let loose the golden rinse (the outcome with mom on similar treatment has been met with angst and ire, prompting young Gabriel to avoid her for this particular need).

Mostly however, he will lay between Mom and Dad and spin and cackle like a drunk witch performing broomstick-barrel rolls.

Michael and I are then grudgingly up for the day.

On a typical summer day--let’s say it is a Monday, as our schedule is fairly static at this point but differs from day to day--I will go wake the remaining two rather grumpy children at around 7 and instruct them to dress before I go to the kitchen to start making breakfast. Dressing is an activity I do not have to oversee for them because I have simplified the process: on every hanger in their closet, there is an outfit complete with shirt and matching pants.

After changing Gabriel’s diaper, Michael will prep the dose, dissolving a risperidone pill in a small amount of soda/juice/gatorade, really whatever we have on hand. Risperidone is an antipsychotic that helps control the extremes of autistic behavior. Michael then goes to do his morning routine.

Breakfast nearly ready, I call for the kids to wash their face and hands and for Emerald to do her finger poke--it tells us where her blood sugar is at. She tells me her number and calculates how much insulin she will need to give herself to cover her blood glucose. I tell her how many units she needs to cover her meal, which she adds to her number, and administers her fast-acting insulin, Novalog. (For example, she gets 1 unit of novalog for every 50 over 150 that her blood sugar is,  up to 5 units; if her blood sugar is below 150, she receives no insulin for that portion. She also gets 1 unit for every 20 carbs she eats. Say her number is 150 and her meal was 60 carbs; she would give herself 1 for her blood sugar and 3 for her meal for a total of 4 units of insulin before breakfast.)

Michael meanwhile has gotten ready for the day, so he dresses Gabriel and administers the dose of Risperidone combined with Quillivant, a medication used for ADHD, while I make plates. The kids file into the kitchen to pick up their breakfasts. If we have nowhere to be first thing in the morning, we take our breakfast picnic style in the backyard while it is cooler. This week, we actually had food camp for Gabriel so we let the kids eat alone at the kitchen table while I get ready to go.

But food camp is not every day, so back to our regularly scheduled Monday.

Daddy kisses everyone goodbye and heads off to work while we sit in the sun and enjoy our meal. I spend the next hour cajoling, coaxing, and convincing the children that fresh air and exercise is good for them while they lay in the grass and complain that it is too hot and that they want to go inside, their legs are tired and why can’t they play with the hose.

Upon returning to the house, they begin the chorus of “why don’t we ever go anywhere or do anything fun?”

This is our cleaning time. I send Emerald and Benjamin to picking up toys, putting laundry in the baskets, and putting away their belongings from the main rooms of the house. I will occupy myself with laundry or dishes, stopping every few minutes to check on my sweet little ducklings, who are happily singing as they joyously and lovingly put away their belongings.

Right. In truth they are laying half draped off their beds, bemoaning their difficult lot in life, cursing the cruel fates that have stuck them with such a meddlesome mother, and emphasizing how exhausted they are from the undue burden I have placed upon them.

The house (passably) clean, I send the kids to play while I try and get work done for REACH. Depending on how much I have going on, I may have to skip the cleaning that day and just focus on getting as much done as possible. Currently, I am corresponding with local agencies to get informational brochures and flyers for the resource packet I am assembling.

Depending on the weekday is which therapist we see. Mondays and Wednesday is Speech; our sweet Speech Language Pathologist (SLP) comes and attempts for a half an hour to teach Gabriel functional language while the siblings desperately vie for her attention. (And let’s be honest, I am, too.)

Lunch time, Michael generally comes home from work. To maximize his time here, I usually have something prepared and ready to go when he walks in the door. Emerald does her song and dance routine of diabetes again with the fingerpoke and the insulin shot and everything. Either Michael or I prepares the second dose of the day, a risperidone and clonidine. Clonidine is a blood pressure medication that helps Gabe sleep.

Gabriel has not yet learned to sit down during mealtimes, preferring instead to wander the length of the house. He will use his entire fist to scrape a handful of food off of his plate (thankfully, he is not a particularly picky eater) and attempt to transfer as much as he can into his mouth. A significant portion ends up on the floor, walls, furniture, and his person; he requires a full bath after most meals.

Possession is also a concept that is beyond him, making it difficult to identify which food is “his” and “not his”. Whichever plate is closest is the one he will remove food from. We have progressed to the point where he will primarily steal from Benjamin exclusively, Mom and Dad being persons you do not cross and Emerald having developed impressive protective skills. This causes great consternation to our youngest, who will scream, cry, stomp his feet, and holler “NO GABY!” approximately ten thousand times per meal.

One trait of autism can be “dumping”, where the child upends containers to spill the contents about. Gabriel is a devout practitioner of this particular custom, letting us know that he is finished with his beverage by pouring it to the floor and throwing the cup atop it. His food likewise will be upturned onto the table and spread about for maximum coverage.

While one parent cleans up Gabriel and sets him up with his tablet, the other lets the dogs in to clean up the mess. Depending on what we ate, there is a fairly significant amount that did not end up consumed. Everything has to be cleaned and wiped down before it sets in and becomes a total pain to scrub off.

Michael heads back to work and I lay the kids down for nap. This quiet time is really mostly for me--I need a few minutes to reboot, have quiet thoughts and recenter myself before facing an afternoon with the gremlins. During this time, I may write or start prep for dinner, do laundry or dishes. If it has been a particularly hard day or we were woken particularly early, I may play a video game, read a book, or take a nap. This is a very good time.

Nap time can’t last forever (no matter how much I want it to) and we head outside for snack. During the summer, it is often popsicles because of the low sugar content and how refreshing it is. If I am feeling particularly amiable, I let the kids put on their swimsuits and play with water guns, water balloons, or the sprinkler in the backyard.

Dinner on Monday has to be fairly prompt a little after 5 so that Michael can take Gabriel out to Buffalo Gap for therapeutic riding. The kids are banished to play, read, or quietly engage themselves while I cook. Gabe’s third risperidone is prepping on the fridge.

Emerald does her third fingerpoke and shot of the day, we repeat the chaotic food flurry from lunch ending in the same mess, letting the dogs in and cleaning Gabriel, wiping everything down.

Buffalo Gap is around 25 minutes away from our house, depending on traffic and the route you take, so Michael leaves with Gabriel at around 6.30. If they have been exceptionally good that day, Emerald or Benjamin might get to go as well, but I like to use this as Gaby/Daddy time.

While they are gone, Emerald and Benjamin get baths. Benny is still in the phase where he hates to get his face wet; it is a lot like bathing a cat, him clawing to get out and you trying to wash whatever you can reach and atttempting to keep the howling child in the water.

Kids ensconced in pajamas on the couch, we cuddle and watch cartoons and wait for the rest of the family to come back home. I have got Gaby’s last dose of the day--two clonidine--cooking on the top of the fridge so we can administer it as soon as he walks through the door. After bath, Emerald did her final finger poke and shot of the day, this time the long acting insulin Lantus. That amount stays the same every day, regardless of her blood sugar--9 units, every night at 7.30.

Michael walks back through the door, sweaty and exhausted. Gabriel is considerably calmer than when he left. He gets his dose, and the four of us--me, Mike, Emerald, and Benjamin--trudge off to the back room to all put away the laundry I have been folding all day. Emerald makes the beds that Gabe has pulled the sheets off of, Ben hangs up things for me and puts them in drawers. (Or, more likely, throws them on the floor where I can pick them up and wash them again the very next day).

Gabriel’s sleepy time medicine takes an inconsistent amount of time--it could be an hour, it could never kick in and he just powers through it. The latter is becoming less common; he usually has to be pretty worked up to burn through the dose, and we have gotten pretty good at keeping him calm.

Perfect world, he takes the dose at 8 when he gets back from his horseback riding and falls asleep around 9-9.30. Clonidine seems to make him thirsty, and he’ll drink 4 or 5 cups of water before falling asleep. We have to be careful and change him before he gets too drowsy or he will pee out while he is sleeping or wake up when we change him and never calm back down.

But perfect world, so he is asleep at 9. The other kids have been sent to bed at 8.30, so Michael and I get to snuggle on the couch and fight over the xbox. He lets me win, and watches me play Fallout 4 until I start falling asleep on his shoulder around 9.30 or 10.

I kiss him goodnight and go lay down, knowing the next day will start anywhere in between 2 and 8 hours.

--Andie