Life Skills

Summer is a long time to have the kids at the house.

For two months, I have to keep this pack of malcontents docile and entertained. There is so much pressure in summer—pressure to have fun, make memories, go to new places and do new things. I don’t want to go new places and do new things. Honestly, I just want to survive. We have so much already going on that we are in essence tied to the house.

My thought was: how do I make the most of this limited time I have with the kids so that they are engaged?

I have long advocated that kids learn important life skills before they leave home for college. Part of this was spurred on by watching the college episode of “Chopped”. While I was not expecting these four pre-adults to be masters in the kitchen, I was filled with abject horror while watching round after round of frankly inedible slop being served because of simple cooking errors. My own trial run at self-sufficiency had its own hiccups, a fact my parents gleefully relive as they remember the time I called for instructions on boiling an egg.

There are so many instances you run into as an adult that you feel poorly prepared for--things like applying for school loans or getting your first apartment, filling out applications, managing a household. These are unavoidably adult undertakings that can positively or negatively impact the success your first few years out of the house.

With this in mind, I decided to make this a summer of Home Camps that teach life skills.

There are few (unofficial) experts I have called in for reinforcements. My mother is doing a bi-weekly baking camp. Last week, she taught all the Abilene grandchildren that are old enough to be taught, a group of six ranging in age from 2 to 10, how to make homemade bread. The two smallest, Clara (3) and Maryn (2) were not able to grasp some of the deeper concepts but they were able to help mix and measure, pour and knead. They were all so proud of the product of their work, which engaged them for several hours and yielded four loaves of bread, a dozen rolls, and a braided loaf.

It was Mom’s week off so I used the time to teach my own how to make communion wafers so that we could discuss the significance of the unleavened bread. I believe it was only slightly sacrilegious that I allowed the children to mold them into cat shapes with the cookie cutters.

Next week Mom is coming to show them how to make apple butter and pumpkin butter, how to peel and slice and can. Maybe we will do crackers or rolls to spread the delicious product on; we will see.

My brother Jarrod has also contributed a higher skill: reading and signing a contract. He is going out of town and needed someone to care for his pets while he was away; he made Emerald apply and interview for the position, then drafted a simple contract for her to read over and sign, making sure to note that as she is not yet of age that her parents had to sign as well. I am hoping to engage him for a robotics course later in the summer as well.

Cousin Jessica, who is a talented artist, has (schedule allowing) agreed to come do an art camp one day with the kids, and Cousin Justin is going to teach horseback riding while we are in that area.

Most days lay more firmly in my domain, however, and so I have written down a list of skills that I would like to see them master and have crafted lessons around teaching them.

One that shouldn’t be a thing but you run into it more than you think you would: making a doctor’s appointment.

Telephone etiquette, overall, is an often overlooked but crucial, dying skill--how to listen without interrupting, polite tone, not nodding when someone asks you a question (seriously, why do they do that? Do they think they are on FaceTime?). Making and keeping appointments is important. Especially for September birthdays, you can’t call day-of or week-of and expect to get seen. You have to plan and schedule ahead, get your spot claimed early because a flood of students are going to be getting their well-checks and sports physicals.

My sister Amber works at the doctor’s office where our children are seen, so I called her and gave her a heads up. Then I coached Emerald through--looking up the number, listening to the automated system, speaking clearly and at an appropriate volume, saying please and thank you, answering all the questions. Afterwards, I showed her how to add it to the Google family calendar so that she could remember it in advance and we could all see it when making other appointments.

Another important skill: Cleaning.

It was kind of a revelation to me when I realized that my definition of clean and the children's’ was vastly different. Mine was “everything is picked up and put in its place”; theirs, “there is a clear walkway”. To them, it didn’t matter how much stuff was under the furniture or up against the walls or on top of surfaces, as long as you could walk through the room without stepping on things.

My mother had been pestering me to watch Diane from Denmark who cleans by a popular system called “Zoning”. Basically, you divide your house into six manageable areas. Each day, you clean in that one area and that one area only. On the seventh day, you rest!

Just kidding. There is no rest. There is only more mess.

On the seventh day, you clean the whole house. But the goal is 80% clean, 80% of the time, which means that on that final day you shouldn’t have too much mess accumulated.

We are trying the zoning system combined with another cleaning trend: the power hour. For one hour, and one hour only, you clean as hard as you can in that one area. After that hour is done, it doesn’t matter if you have anything left, you are finished. Michael particularly likes this because it sets a tangible end goal that isn’t “perfection”. Our zoning goals are:

Sunday: Yards
Monday: Bathrooms
Tuesday: Living Room/Playroom
Wednesday: Bedrooms
Thursday: Kitchen/Dining Room
Friday: Entryway/Hallway/Laundry Room
Saturday: Big Cleaning Day

I am not going to say much on that at the moment because we have only instituted it for a week so I cannot yet speak to its efficacy, but I will let you know more later on.

But during that time, I show the kids what you need to know--how to dust, avoid mixing chemicals or using too much, how to sweep and mop and load a dishwasher properly. It is somewhat slow going. My mind keeps saying “it would go so much faster if you did it…”. I have to keep reminding myself: if I don’t want to be the only one doing this forever, they have to learn it. With that spirit in mind, they are also helping do laundry, beginning to end.

Other life skills I have been working on teaching them:

Basic first aid and what to do in an emergency
Gardening and yard work
Grocery lists, meal planning, reading labels
Simple sewing
Letter writing, gift wrapping
Basic car care--how to wash a car, put in fuel, check fluid levels
Finance--how to make and stick to a budget, write a check, tithing

They are learning a lot and having fun doing it. We make a lot of time for entertainment-only pursuits, too. Days are very long in the summer so there is a lot of time to fit in everything, and we don’t have to have a lesson every day. Most days we wake up and eat breakfast, then go for a walk while it is still not too warm. Then we sit in the backyard and do devotional. They play while I do some writing or cleaning or working on whatever I have going at the moment; at the end, I have them come help clean as well--their power hour is only actually about thirty minutes because I have found you can get them to work really hard for about that long before they lose interest. Then there is lunch; afterwards, the younger kids go down for nap while Emerald and I have our bonding time. Afternoons we go our own way and do our own thing until Michael comes home and from there the day starts its steady downward slope toward bed.

It is important that I work as well to better myself, so to that end I am trying very hard to work on improving my temper and patience. Life gets so very frustrating and overwhelming when you feel like no matter how hard you try, you are falling behind. This diet can be discouraging--our choices feel so limited and prep time is outrageous. We eat five to six times a day: three major meals and two (to three) substantial snacks, and each time it requires nearly an hour of prep. I can’t make things in advance because Gabriel will find and steal them, like the homemade toasted almond granola bars I made for Sunday morning breakfast. He ate two dozen of them while we were sleeping. It was very frustrating.

Michael’s grandmother, Grannymom, gave me a lot of books that have actually helped with that. One of which Michael and I are reading together: “Don’t Sweat the Small Stuff...and It Is All Small Stuff”. It gives practical and insightful advice like developing your compassion, allowing yourself to be bored, and practicing patience. Every day, I try and focus on attempting a new skill to soothe my ferocious temper and low tolerance for annoyance.

I think we are getting better. More and more of our day feels smoother, kinder. The kids’ bodies and minds and spirits are being fed, and it shows. They aren’t acting as desperate for attention, their attitudes toward one another are softening.

And I feel, just for a brief moment, like maybe...we can survive this summer.


--Andie
(Rare Post Script: If you have a skill you would like to teach at Home Camp, let me know!!)

Million Word Reader Celebration: Guest Writer, Emerald

It was a long and hard journey, reader, getting to 1,000,000 words (or more accurately for me, 5,000,000), but oh was it worth it! Getting to go to ACU for fun and games was amazing! 

Our first station was outdoor fun and games. It was filled to the brim with games, including mini golf, marble run, sticks, tic-tac-toe, bowling, and more! Our second station was science! Fire, electricity, pressure, and explosions made that station truly worthwhile. 

Next up was lunch. Reader, mere words cannot describe how the wonderful grilled chicken, sour cream and onion chips, and White Chocolate Macadamia cookie tasted in my mouth. My beloved father joined me for this eventful lunch. 

Up next--my probable favorite station-- Zoomba! The dancing- oh, the dancing!- nearly changed my life forever. However, my blood sugar crashed to the 30's and I had to eat peanut butter crackers afterwards. 

The final station- Code Bracelets! We picked 2 colors and picked up a Morse Code paper, and we set to work figuring out what our message would be. My good friend Ian decided on “ Tacos for life “ for his message. The goofball. Mine was going to be an emergency bracelet ( AAA SOS AAA ) but sadly, my bracelet popped at the last second and I had to put my beads in a plastic bag and finish it at home. 

After that, we all raced outside for water and fruit snacks (don’t even ask me how all of my fruit snacks were red ) while we waited for the bus. We zoomed back to school- this time our bus had seat belts -and got back to school, where we told our fellow classmates the tale of our adventure. 

Reader, if you are a young child in the GT program, I encourage you to read next year! My personal recommendations are: “Harry Potter”, “Percy Jackson and the Olympians”, and “The Heroes of Olympus” series. Pretty much every book ever written by Rick Riordan. “Levan Thumps and the Gateway to Foo”, “Gregor the Overlander” (and the sequels), and “The Mother-Daughter Book Club” series, too. Any book you can find! 

Reader, Go out there! Accomplish what I could accomplish! 

-Emerald

Mr Gables

Gabriel is the sunniest baby in the world--he is quick to smile, constantly cooing, giggling,
and seeking out companionship. His very first smile was for his Big Sister, Emerald,
because I sincerely doubt there is a single person in the world that adores him more than
she does. She is forever giving him kisses, loving on the baby with hugs and trying to
hold him, reading to him, sharing toy, and generally trying to make sure his life is as happy
as humanly possible.

He enjoys watching Baby Miracles, including Jonah and the Whale--its a video of kid's singing
church songs and classical music to the story of Jonah, as well as live videos of the things
Jonah would have seen while he was sinking (turtles, starfish, etc).

Mike likes to play a game with him called Tooty Airplane--since he is literally the gassiest baby there ever was, Michael flies him around the house increasing the speed every time he toots. Gabriel loves it--he thinks his daddy is so funny.

The Price of Being Different

I hate spending money.

It is the possibility I am reluctant to part with. In my pocket, $20 could be a pack of diapers or a half a tank of gas or a couple of groceries. Once you spend it, all the possibility dissipates. Since I was little, I have preferred saving to preserve option to spending. Spending feels so final, so...decisive.


The topic of money is vulgar to me. Don’t like to talk about it, don’t like to think about it. Do not care for the fact that it is an unavoidable, definitively adult undertaking. It is kind of like toilet paper to me--everybody uses it, each in their own way, but please let’s not discuss the particulars, shall we?


Money is distasteful. On “Cutthroat Kitchen” when the contestants are first handed the cash, what do they always do? They raise it to their face and inhale that horrid smell. The smell of books, new or old, now that is intoxicating--it is the smell of adventure, prose, romance. The smell of money is sweat and butts and squandered potential.


So, if I dislike it so much, why talk about it?


It is one of the things people are most curious about. Probably because it is a borderline taboo subject--it would be impolite to inquire about someone else’s finances, in any scenario. We know the statistics though. Raising a child with special needs or chronic medical concerns is hair-raisingly expensive and we have three. I have panic attacks when confronted with it because need is where possibility and decision collide--inaction is rarely an option.


We have been incredibly blessed. At exactly the right time, the Lord has provided for us, through the kindness of others or an open door, talking to the right person at the right time that points us in the right direction. He has guided us through.


It is a substantial consideration on our part, whether I like it or not, a determining factor in a lot of our decisions. I figured I would offer you a glimpse of the inner workings here, some of the elements at play.


We are a single income family. I have been unable to work, largely due to Gabriel but also because of Benjamin and more recently, Tula. Daycare runs about $35 a day for a decent one, but in this town, the waiting lists are substantial for any reputable child care in town. It amounts to $500-$600 a month, or the bulk of anything I would be able to bring home. Jobs that have the same hours as school can be obtained, but I have to be available to pick up kids afterward or pay for after school care, which would deplete the rest of whatever I could earn. There are no after school programs that accept children with disabilities; there are no after school programs that can manage the girls’ diabetes.








If I could work, Emerald and Tula have to have doctor’s visits every three months; Gabriel has to have doctor’s visits every three months in Lubbock. Which accounts for at least three missed days of work--one to travel to Lubbock, one of the doctor’s appointment, one for the girls if I take them both at the same time--every three months. Those are specialists, they still have to see their regular pediatrician, and like any child they will get sick occasionally.


Gabriel’s school calls an average of two to three times a week for me to come up there. Children with autism often present with chronic gastrointestinal issues and Gabe is not exempt, so often he has had a bad poop and I have to bring him home to shower and return--sometimes it is a blowout, sometimes he gets into his diaper and smears it. Disgusting, but it is something we have to deal with. Other reasons they call are because he is agitated and not calming himself down, he is being aggressive, he is having issues with his clothes or shoes and needs me to deliver new ones, he is falling asleep and cannot keep himself awake, or because he is “just not acting like himself”. Between me and Michael, my hours off are quantifiably worth less than his, so I end up taking off again and again.


Let’s establish--that is just out of the ordinary stuff, not accounting for school trips or class parties and other parental involvement activities, most of which I am still unable to attend because siblings are not allowed (after all, I am of limited help when my arms and attention are full of baby).

We’ll do Diabetes first because I am holding Tula so it makes logical sense to me.


Insurance will cover 100 test strips--the little strips that we use to monitor the girls’ blood glucose levels--a month. Emerald has to test her sugar a minimum of four times a day, six on PE days, for a total of around 140 test strips used a month. Tula has to test her sugar around 6 times a day, for a total of 180. That is if we never get an error reading or they never have high or low blood sugar and never get sick--those all call for additional strips. The test strips we buy--the cheapest on the market--are $0.18 each, for about $40 out of pocket a month after insurance covers $60. Glucometer, the meter that reads the blood sugar, can vary. The ones we use at home the pharmacy actually gave us for free because insurance won’t cover those particular test strips (Glucocard). Insurance prefers the Tru Metrix test strips and meter, so we have two meters for each of the girls at home--one that uses the test strips insurance covers and one that uses the less expensive test strips we have to pay for out of pocket.


To complicate matters, Emerald actually has a THIRD glucometer at school--ReliOn Prime--that we provide test strips for. It is a cheap one, only costing $15 so it can be replaced as needs be.


Tula also has a third monitor, but that one is a combination Ketone and Glucose monitor that we only use for the former purpose. Whenever the girls’ blood sugar is over 300 or whenever they are getting sick, we have to check for ketones in their blood so they do not go back into ketoacidosis. Emerald has strips that you check her urine with; Tula has one that checks her blood. Neither of those are covered by insurance. Tula’s NovaMax Test Strips are around $2 a piece, but will last a few weeks because she doesn’t go high very often. Emerald’s are considerably cheaper at about $0.15 each, but she has to be tested more frequently. Combined, it is about $37 a month.


Lancets are cheap--we use them to poke fingers and toes to draw little bits of blood for testing blood sugar. They run about like $5 for a box, but insurance covers those and they last forever. Alcohol swabs run out quickly and are not covered, $2 for 100 for a total of $8 a month. We use those to clean before we prick or poke and wipe off the top of the insulin. Diabetes logbooks were $5 each and last the whole year. Emergency sugar supplies are like packets of sugar or honey that we have leftover if we eat out, but we could also put dum dums in there. Negligible stuff. Pen needles are the mini needles we put on insulin pens; they are $9 a box of 50 generic. We have to buy four of those a month--insurance covers $36, we cover $36.


Syringes, which we have to use for Teeny Tula’s half dosages, cost $30 (covered) a month.


Insulin gets tricky. Medicinal insulin has been around since the 1900s, so you’d think it would cost less. Generic will actually raise your insulin resistence, meaning you will need more and more over time. We invest in the better stuff. Both girls have Lantus Solostar pens, which are $280 a box. A box has six pens, each with 100 units of insulin. One box will last Emerald a little over two months. Tula has a vial of 100 units that costs $190; it will last her about a month.


Insulin is only good out of the fridge or open for a month so we have to toss it after that or it can jack with their sugars.








That is their long acting “basal” insulin. The also have bolus insulin--Emerald has Novalog Flexpens that are $600 for a box of six pens. Those will last us about a month because she has to take it more frequently, after each meal and for correction. Tula is on Humalog pen that is about $550, but because she eats so very little carbs and only gets the tiniest little doses, it will last her a while.


They both have to have the glucagon emergency kit in case they crash. Most families do not have to use it, but you always have to have it on hand and replace it once a year. It is sort of like an epipen. They are $300 apiece. Zofran is a medicine that will prevent them from vomitting when they are sick because it could cause them to crash which would be dangerous; we get a supply of that a year for $250.


So just for medicine and supplies, most of which is covered (thankfully) under our insurance, runs us about $24,000 a year for both girls. We are personally responsible for about $1500 of that, if insurance is playing nicely and there are no issues.


Emerald’s insurance lapsed last year so we had to pay for it out of pocket for a while; that was kind of killer. I thanked God every day that we were able to do that.


Visits to the endocrinologist happens for each of them every three months; we have no copay, but the visit would be around $120 because they do discounts if you pay up front. That adds up to $960 a year for both. Each time they go, they also have to run full blood work including a1c, totalling around $1000 or $8000 for the year. We meet with the registered dietitian at each visit ($100 an hour, times two for each girl, times four visits a year for a total of $800 a year). If there are no hospitalizations and we keep up with our routine office visits, that is just shy of $10,000 a year.


I don’t want to get into hospitalizations because YIKES and because I am sincerely hoping none of that happens. Normally, we will make an emergency room run once a year because we can’t get things under control and they need fluids or if we run out of insulin before insurance is willing to cover it again. Depending on what needs to be done, an ER visit will set us back about $1200. I also won’t go into things we are not currently doing, like special camps or insulin pumps or continuous glucose monitors because while I could look up the information on that, it would be meaningless--they do not currently affect us.


Whew. That was a bit of an odyssey. Catching my breath before I move on to Autism.


Alright, took a quick Facebook break and now I am back.


Autism Speaks estimates it takes around $60,000 a year to raise a child with autism; $90,000 if the individual also has an intellectual disability. That is roughly four times higher than the cost of raising a neurotypical child.

I did the math after a friend of friend asked me. All things considered, Gabriel costs $46,000 a year more than Benjamin. That is counting incontinent supplies, medication, specialists, therapists, personal care services. Breakdown is something like this:


-Personal Care Assistant: $1000/month ($12,000/year)


-Incontinent Supplies (diapers, wipes, changing pads): 200/month (2400/year)


-Medication (clonidine, risperidone, hydroxyzine): 450/month (5400/year)


-Therapy (speech, occupational, physical): $28,800/year*

*This one actually went down substantially because we cut back—insurance doesn’t cover Applied Behavior Analysis so we had to pay out of pocket for each session; got too costly and we had to quit. We also scaled back, dropped PT at home, decreased at PT/OT school so that he could have a little break. It was getting to be a lot.


-iPad maintenance and repair: $130/few times a year. Because it’s his communication device, we have kept it available, but that means it has had a few accidents. He ruins cases, takes it into the bath with him, leaves it outside, or gets mad and cracks the screen. Currently, he’s taking a short break from screens because he has annoyed us too greatly by being uncareful. It also covers new chargers.


-Specialists: $250/visit($1000/year) he see a developmental pediatrician, which we have to travel to Lubbock for, so tack on another $40 in gas.


There are other costs like locks for the fridge and pantry, bolts for the front door, back door, and our bedroom door. We get items to work with him between therapy—trampoline, swing set, weighted blanket, compression garments, sensory brushes, hammock, exercise ball, privacy pop, noise canceling headphones. Those vary in price from $10 to a few hundred. We were doing horse therapy for a while, but have taken a break. That was at no cost.


All of that adds up to...right under $50,000 annually for Gabe, before calculating for lost wages. As he gets older, the price will increase exponentially to include a nurse or residential living (though we hope he wants to stay with us), transportation, and other expenses.


I try not to think about all of this, but when it comes together…

Yuck. No wonder I don’t like thinking about money.


When I do think about it...it’s a tangible, definable way to express how God has cared for us. A lot of families of special kids go bankrupt trying to handle it all; though we rarely have excess, we always have what we need when we need it. I think that is such a beautiful thing. I am very thankful for it, because it once again opens my life up to possibility.





—Andie

Lunch Box Dilemma

I try my best, I really do.

I wish I could be the type of mom that packs the gorgeous bento box lunches full of pseudo-sushi rolls and homemade fruit jerky, a handmade crossword puzzle that spells out “you are a superstar!”.

The beginning of the school year, I usually start out relatively strong. All the kids are bathed semi-frequently, all their clothes are matching, and I have prepared for them nutritious yum yums for their lunchtime tum tums. They leave the door with shining faces and a cheerful, “hustle up, buttercup!”.

By the close of first semester, we are flagging a bit.

By May, things have taken a decidedly dreary turn. The kids receive a cursory wet wipe to the face; their outfit is whatever clean but wrinkled clothes I dig out of the laundry basket. Lunch is a fistful of fast food ketchup packets and a tube-sock full of yogurt.

Obviously I tease. Honestly, it is easier and cheaper to get school lunches. I can appreciate school lunches for what they are. As we have already discussed in this blog, it is hard to offer great, nutritious food at a low cost point, and what they manage is not that bad.

They can’t really cater to a specialized diet like Emerald’s though. Gabriel is difficult because of the lactose thing, but Emerald can get pretty tricky based on the offerings.

Between Emerald and her (very dear) school nurse, they are able to craft a meal out of the choices available that falls inside her requisite 45-60 carbs.

The cafeteria tends to have a lot of repetition. We do at home, too, but we are able to adjust according to seasonal availability easier than they are, and can incorporate more fresh fruits and veggies, whole grains, and carb-friendly options. You’ll see pizza a couple times a week, a few breaded options such as nuggets and steak fingers, plus burgers and hot dogs, mac and cheese. The perennial kids favorites.

Those tend to be carb-prohibitive for Emerald, though, making already small lunches even smaller. Our nurse is excellent at crafting maximum impact with minimal glycemic index, but as these foods are heavy on the simple sugars (fruits) and refined flours (breading, pasta) for bulk, they are still not the best option.

Sending lunches can get costly, and it is hard to throw something together first thing in the morning, and whatever I send I have to add a note about how many carbs are in each item and what the total is so that she can calculate her insulin and administer her shot based on what she actually eats. I know I sound whiney, but it becomes quite burdensome.

I am trying a new system this year to see how it works. I got index cards and put meal plans on one side. Each meal has protein, grain, dairy, fruit, and vegetable. I also have a little filing box for the cards.

My intention is that before going grocery shopping, I can reach in and grab a card. She and I will bulk make the meal at the beginning of the week, and she can take her lunch two to three times that week, buying her lunch the other days. That way she is getting some variety in her diet, good nutritious food, and I don’t have to make new cards every day.

On the back of the cards, I included a bible verse. If you are reading this and have insight, I would love to get your feedback because I am undecided on this:

I was toying with the idea of making the deal with Emerald that if she memorizes the bible verse by Friday, she can buy an ice cream in the cafeteria.

My concern is that I don’t want to use food as a motivator for her, because that can be a dangerous habit to start and sends the wrong message about eating healthy. On the other hand, I tend to be too strict when it comes to sweets and ice cream is actually a fairly viable option as not super carby. It would give her a fun treat to look forward to.

Regardless, there will be motivational scripture on the back of the cards so that she can read and meditate on them.

I have quite a few cards already written, either from my own thoughts or from ideas gleaned from the many, many articles I have now read on the subject. Many of the articles recommended skipping the veggies as her kids would just toss them in the trash; Emerald is an exceptionally agreeable eater so I do not have such qualms. I am listing them here as future reference for myself, and in the hopes that it may be of use to the reader. I use whole wheat tortillas and bread and pasta, unless otherwise stated. There are a few so feel free to skip ahead if uninterested.

• Salmon and Quinoa Salad
• Canned Salmon, multicolor quinoa, arugula, strawberries, feta. Milk, cookie.
• Roast Beef Roll-Ups
• Roast beef, cheddar in a tortilla. Carrot sticks, apple, popcorn, water.
• Pesto Pasta
• Pasta, pesto, cubed mozzarella, cherry tomatoes. Milk.
• Diced chicken, peas and carrots, butter crackers, milk, small orange.
• Goldfish crackers, raisins, cheese stick, ham slices, small apple, water.
• Pastrami, havarti cheese, rye bread toast crackers, pear, bread and butter pickles.
• Pizza Dippers
• Breadsticks, pepperoni, mozzarella cubes. Side salad, milk, berries.
• Lunchmeat Sliders
• Lunchmeat, swiss cheese, tomatoes on hawaiian rolls. Cantaloupe balls, milk.
• Pasta in olive oil, baked chicken drumstick, snap peas, grapes, water
• Taco Roll Ups
• Tortilla with cream cheese, taco seasoning, black beans. Jicama, banana.
• Hawaiian English muffin pizzas with canadian bacon, pineapple, bbq sauce. Radishes.
• Pumpkin Pie Smear
• Pumpkin pie dip made with cream cheese, honey, canned pumpkin, cinnamon, and nutmeg. Mini cranberry bagels, celery sticks, boiled egg, water
• Ham Pita Pocket with cream cheese and ham. Raisins, cucumber and tomato salad.
• Stackers
• Turkey pepperoni, swiss cheese, butter crackers, grapes, celery, water
• Ham or Turkey Roll Ups
• Lunch meat, cheese, tortilla. Pretzel sticks, apple, baby carrots, water.
• Boiled egg, small banana, cheese stick, milk, bell pepper slices, english muffin.
• Chicken quesadilla
• Tortilla with monterey jack cheese and shredded rotisserie chicken. Bell pepper strips, ranch, small banana.
• Pizza Roll-Ups
• Tortilla, mozzarella cheese, turkey pepperoni. Marinara to dip, bell pepper, milk, small orange
• Breakfast Pocket
• Cheese, egg, spinach, and tomato scramble in pita pocket. Sliced peaches, milk.
• Sausage Wrap
• Sausage, pickle relish, mustard rolled up in tortilla. Veggie straws. Pear. Water.
• Ramen with boiled egg, peas and carrots. Milk, fruit cup.
• BLT Salad--bacon, lettuce, tomato, ranch, croutons. Juice box, oreos.
• Baked Potato with shredded pork, cheddar cheese. Side salad, sliced watermelon.
• Cowboy caviar
• Black beans, black eyed peas, corn, bell pepper, onion, cilantro, tomato, lime.
• Trail mix: chex cereal, dried fruit, sunflower seeds, stevia chips, popcorn.
• White bean tuna salad on crackers, sliced cucumbers, grapes, milk
• Ants on a Log
• Celery with cream cheese and currants. Turkey breast sandwich with sweet potato mustard
• Boiled egg, pretzel sticks, apple, cheese cubes, carrots, bleu cheese, water
• Waffle Sandwich
• Ham, sweet potato mustard, cheese on frozen waffles. Cantaloupe, tomato slices, milk.
• Spinach Fritatta with mushrooms, english muffin, small orange, pudding cup, milk
• Refried beans and cheese burrito, jicama slices, bell pepper strips, jello.
• Spaghetti
• Pasta, sauce, steamed broccoli, parmesan shreds, side salad
• Meatballs, buttered egg noodles, corn on the cob, water.
• Tortellini Salad
• Tortellini with peas and butter. Side salad.
• Hot dog mac and cheese, honeydew melon balls, cauliflower
• Penne pasta with artichoke hearts and spinach, lemon vinaigrette
• Chicken salad made with Greek yogurt, sliced grapes, carrot matchsticks in pita pocket. Pretzel sticks. Jello
• Baked sweet potato with chorizo. Raisins, side salad, ranch.
• BLT Roll-Up
• 2 Tortillas, turkey bacon, shredded lettuce, halved cherry tomatoes. Milk, jello.
• Sweet Potato Mac
• Pasta in sweet potato cheese sauce with diced ham. Dried cranberries.
• Hot Dog on bun with mustard and relish. Corn on the cob. Berries.
• Spinach and mushroom quesadillas, black bean dip.
• Salmon patty on kale salad, watermelon slice, milk, pickled okra.
• Chili with cornbread muffins, mandarin oranges
• Tomato soup, grilled cheese triangles

If you have any additional ideas, I am still compiling. I need something with rice, but I haven’t fully formulated anything on that yet. For now, I am just taking it a week at a time and hoping we end up with something sort of resembling health. Obviously I have grown distracted and lost steam with this post, but I promise to be more engaging next time around. Or at least as engaging as I am generally.

Blessings and love to all of you!

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.

Back to School!

It's the first day of daycare for the Wearden duo, the second year for Emerald and the first for Gabriel! Needless to say, Mama was tense all day!!

We got up early this morning--I had packed as much as I could before going to bed, which means Emerald's lunch, diaper bags, etc. Emerald is in the monkey class (which I think fits her to a T!) and Gabriel is a caterpillar (he's so adorable!).

Emerald was really surly from the moment she woke up--she was never a morning person. Gabriel watched the Batman Animated Series while I changed and dressed Emerald--he is always very agreeable.

We left super early--Emerald snacking on apple bars--so that we could stop and see Rhonda on our way to daycare. Unfortunately, we didn't realize until we were at college campus (between our house and daycare) that Rhonda was home sick, So I took the kids to the financial aid office so that I could make sure everything was turned in (it is! awesome) and then off to school.

Maya is not in Emerald's class any more, nor is Cooper, but Drew and Mady are. Drew is the son of the director, and really chubby and cute; Mady was BBFF (Bald Best Friends Forever) with Emerald last year. She has the cutest headbands--thick things with giant flowers atop them. I wish I had as many as she does!!

Anyways, other new students include Sadie and Garrett (more about him later). Emerald we dropped off at class first, and she ran in and started playing, didn't look back once.

Gabriel we dropped off next--he was curious more than anything else, and I really worried about him, but his teacher said he was the sweetest little boy all day, and when I showed up, he was asleep in the swing.

After I got out of class, I went and got them back--Emerald started fussing the moment she saw me and insisted I pick her up. Her teacher said she wouldn't take a nap until she said "Pat, hold!" and her teacher Ms Pat rocked her to sleep =) She apparently was more fussy than Gabriel, and is being really clingy now.

We gathered all our stuff little Garrett (just precious little blonde haired boy, and the only baby I have ever seen that is bigger than Emerald) jumped up and ran to the door where Emerald was leaving yelling "BYE!! BYE!" and blowing Emerald kisses. Emerald, always the cool customer turns to him and says "Bye, Jake". Oooh, cool use of the "wrong name", doll ;)

All in all, we are looking forward to a great year!

~Andie~