Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts

Thursday, May 23, 2024

Nonverbal

 Nonverbal 



Brows furrowed over deeply serious eyes, he uses his pointer finger to scrub the video to precisely 16 seconds into the ad. The tip of a raspberry tongue stuck out in concentration, he pushes Play.


“I don’t want to eat garbage, dad.” 


Remy the Rat has spoken, but it’s Rhett’s eyes that meet mine, insistent.


“It’s not garbage; it’s eggs. And I’m not making you anything else.” 


Rhett scowls, tapping the back of his first two fingers against his forehead.


“You call me stupid again, I’m gonna take that iPad away.” 


He continues to scowl, but puts his hands down. I go back to wiping off the kitchen counters. 


Forlorn, he pokes at the unwanted eggs with a spoon, willing them to be different. He looks up at me and decides to chance it again. “Duh-UH.” His voice is loud, lilting up at the end so I recognize this is a question.


“We can’t have donuts every day. The eggs are good, try them.” I do not sound convincing as the longer they sit there, the colder and more rubbery they become. The effort must be made, for his health. 


Rhett holds up both hands and flicks them a couple of times so the palms face me. I sigh, defeated.


“All done, huh? Not even one bite?” 


He dumps the cold eggs on the table.


“Okay, fine. We’ll get a donut. But tomorrow, we try something new, alright? Man cannot live on donuts alone. That’s Biblical!” He’s not even listening to me, gloating as he is in his victory. “Go get your shoes on, before I change my mind. Spoiled little monkey.”  


I’m rewarded for this defeat by a round of bouncing happy-flappies before he walks on his tiptoes towards the car.  


  ****


“We’re all gonna die!” screams a VeggieTales pea from his iPad. 


I don’t take my eyes off the road. “I’m not driving that fast, can you chill?” He giggles at his little joke and kicks his feet, playing the clip a couple more times. He is just as tickled every time. 


“What kind of donut do you want?” I ask as though I do not know the answer. 


“Ch-ch-ch-ch-ch.” Rhett’s response sounds like cheerful little maracas, rhythmic as a shimmy. 


“Chocolate? Again? They have so many good flavors, we could try something new. Like sour cream, or blueberry. You like blueberries.” 


He grinds his teeth loudly, the muscle working in his jaw. I’m transported back to early mornings on the lake, where the catfish call is so pronounced I can almost smell the bait. “Dude, can you stop? You’re making my face hurt just listening to it.” He chops one hand across the other. “Yeah, stop. All your teeth are gonna fall out.” He wasn’t agreeing with me though, just repeating; the grind continues until I hand back a silicone Lego necklace, an acceptable substitute.


The donut shop is brightly lit and overtly pink. It reminds me of the Barbie book I had as a kid where she opened an ice cream shop. The smell is yeasty and sweet, permeating the whole building. Rhett bounds up to the counter and loudly, proudly requests “DUH-uh!” 


A middle-aged woman is at the counter. She looks shocked for a minute, but turns on a hundred-watt smile. Speaking slowly and enunciating clearly, she says to him, “HELLO THERE. ARE…YOU….HERE…WITH…YOUR…MOMMY?” 


Rhett rocks back on his toes for a second. He is looking at the woman as if she is going to rear back and bite him. Nevermind that he has several inches and thirty pounds on her. I come up beside him and the woman turns her full attention on me as though Rhett suddenly vanished.


“Welcome to Bab’s Bakery, what can I get for you?” 


I turn to Rhett and ask “chocolate?” He doesn’t look at me as he whispers “ch-ch-ch-ch-ch.” 


“Can we get an order of chocolate donut holes? And a decaf coffee, black.” 


Bab starts punching in the order and filling the bag. “How old is he?” 


“Oh. Um. He’ll be 16 at the end of the month.” 


“16! He’s so tall though! My Chaz didn’t get that tall, but I suppose neither am I.” She gives a little chuckle. ``16 though. My gosh. Has he always been…” she trails off significantly, but I refuse to bail her out. “You know….like this?” Her voice has dropped to a conspiratorial whisper. 


My smile feels as thin as nori, and just as friable. “Yup. He was born this way.” 


“Oh, well bless your heart. I don’t know how you handle it. My friend Deb had a daughter who was, you know we didn’t have a name for it back then and everybody nowadays it feels like has this or that, but anyway: Deb’s girl, Ruby. They had to put her in one of those homes where there’s other people like her, and I mean, I heard it was nice; it wasn’t one of those bad ones. Ruby got to do arts and crafts and I think they had movie nights and she had her own room. Are you going to put him in a place like that? Your total is $4.58, dear.” 


I hand her the five I’ve been holding and take the coffee, squeezing it just a little too tight so the lid pops off. “We haven’t really discussed it.” Rhett rocks back and forth on his feet, staring out the window. He’s very quiet, and one hand has wound its way into his hair like he hasn’t done since he was a baby. 


Bab continues on as she punches buttons on the register, “well, better sooner than later. Y'all come back and see us sometime! GOOD…. BYE….. BUDDY!” she half-screams. 


Rhett carries the little baggie of donut holes to the car, dropping it on the floor and ignoring it. Donuts roll out on the floor. I don’t correct him as I back us out of the parking lot. 


We drive home in silence.


Thursday, March 1, 2018

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

Wednesday, November 29, 2017

Barriers to Inclusion

What can a church do to make you feel welcome, as a guest or when you are looking for a new church home?

A few years ago, back when we lived in Lubbock, I took Emerald and Gabriel to a VBS at a church down the street from our house. I had this huge double stroller, one of the really long ones, with 2 year old Gabriel in the back seat, and Emerald was four and she was in the front seat. This was maybe July/August of 2011 so I was also pretty pregnant--seven, eight months--pregnant with Ben because knowing me I was always pregnant with somebody. You know, pregnant enough that you don’t have to be awkward “is she? Isn’t she?” So I got them all registered and everything and I get to the building and I am wrangling this massive stroller, trying to hold open the door and shove it through and I got my enormous pregnant belly and I have my purse over here and the kids’ two bags on my other shoulder and there are people literally everywhere--standing in groups talking under the awning and all over the foyer and there’s the registration tables and nobody, anywhere, noticed me. Nobody offered to hold the door, nobody greeted me, asked if I needed any help. Like I wasn’t even there.

That was the church Michael and I had been attending for the last year. It wasn’t a random church we had picked out because it was nearby. Our kids were enrolled in the parent’s day out program, or would be until they were kicked out that December...but that was a different story. This was our congregation.  And nobody even noticed if we were there.

We know what a welcoming church looks like because we can recognize one when it is NOT.

Lucky for most of us, if we don’t like the attitude of the one we are visiting, there are more churches in Abilene than you can swing a cat at--if you don’t want me, I will go next door. I don’t have to settle for less. What if that wasn’t the case though? What if church after church after church said, through their actions or their attitudes: You aren’t welcome here, you cannot worship with us.

There is a greater need than is generally recognized for faith institutions to be welcoming to individuals with disabilities. Over the next four weeks, that is what we are going to talk about. What I want you to be thinking about while we go through this is: Why do you go to church? Is there a purpose, a benefit, to being here, at this building, with these people? This first week, we are going to discuss this unmet spiritual need of our community, why churches are failing this group. I encourage you to ask questions. Sometimes I take for granted that everybody lives in this world and knows all of these things.

Next week, my brother Jarrod (who is the head of special education at Abilene High will talk about coding and needs—what do these labels/titles mean, how they occur, and associated needs.

The third week, Jarrod will delve into what the bible says, scriptural attitude toward those with disabilities, sort of the biblical elements at play here. In the last week, I’d like to talk about how we can become a more welcoming church both as an entity and as individuals, how we can practically implement what we’ve discussed to serve this community.

For those that might not know me, my name is Andie Wearden. I am married to Michael, and have four children--Emerald who is 10; 8 year old Gabriel; 6 year old Benjamin; and Tula, who is 8 months.  I am the resource coordinator and Vice President of REACH for a Difference, a local nonprofit that provides resources, education, and advocacy to families and individuals affected by autism in the big country area. Functionally, we help people find the services they need in the area like therapies or legal aid or ARD advocacy. Our main goal is to bring those with autism and the community together in events like Restaurant Night Out, the Big Country Walk for Autism, and Sensory Santa, and to make life a little safer, through things like first responder training for emergency personnel and swim lessons. I do all of these things for my son, Gabriel.

Many of you probably know Gabriel or have seen him around—he is a member of this church. He is 8 years old and has autism. Autism is a neurodevelopmental disorder, which means that Gabriel’s brain formed functionally differently than what we call neurotypical brains which has resulted in global delays, sensory processing difficulties, and deficits in cognition and social skills. Because of the severity of his condition, he is developmentally around 2-2.5 years old, still in diapers, and has no consistent form of communication as of this time. He is able to express himself somewhat through a combination of sign language, picture exchange, and cobbling together phrases from his shows on his iPad.I will be using him as an example throughout a lot of this talk. I don’t generally like doing that because it makes it too personal, but I want you to hear this information how I hear it--to me, it is very personally.

Proverbs 31: 8-9 says “Speak up for those who cannot speak for themselves, for the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy.” I believe personally that Christians, and I in particular, have a calling to reach out to this underserved community, because they cannot always advocate for themselves. This is one of the most frequent requests I get through my work at REACH: helping families find churches that are both willing AND prepared to have a member with autism. Because it starts with an attitude of welcome, but it cannot end there. It is more than just saying, “sure--bring your kid, why not?”

So what is a special needs ministry, and what do I mean when I talk about an inclusive church?

A special needs ministry is accommodations provided for individuals with a range of disabilities that may hinder them from active involvement in the church, such as attending classes or participating in worship. For our purposes, a disability is anything that impedes vision, mobility, cognition, self-care, or independent living.

What I am talking about is more than just a dedicated class--it is an attitude of welcome that a church can have that carries over through all aspects of service. It is the way that you let these individuals and their families know that you see them and you want them there, not as warm bodies or seat fillers, but genuinely as contributors and communers, members of the body of Christ, not DESPITE their disability, but because of their ability.
There are many accommodations here at UCC in place that you may not really be aware of, things such as wheelchair accessible ramps, the elevator to the second floor, and handicap accessible bathrooms to name a few. Children’s church and the bilingual service are also forms of accommodations, methods of adjusting our approach to reach different audiences.

I use this infographic a lot--it explains the difference between equality and equity. In the first image, everyone is being treated equally and given the same supports. All three are standing on the same size box but the last one cannot see the game. In the second image, they are being treated equitably, each given supports that allow them equal access. Because each has what they need, everyone is able to equally see the game. That is the goal of an inclusive church: setting up accommodations and supports to allow individuals with disabilities to have the same access everyone is getting to know God and worship in our community.

Imagine you take your toddler to a church that does not offer age-appropriate bible classes. Your two or three year old is expected to sit and listen to a lesson that was written and presented with adults in mind. They are held to the same standard and expectations that adults are held to--sitting still and quietly, attending, engaging in ecumenical dialogue. It is setting up the child to fail, not because of intelligence or ability to learn, but because of unpreparedness of the class.

(In case you were wondering--the third image is where barriers were removed, the cause of the inequity addressed, allowing free access to all. This is a tall, often unattainable goal when we are talking about disabilities, but it is a war that is being waged behind the scenes by each of these families and an army of doctors, professionals, therapists, and educators. Gabe’s team is 16 strong in professionals only.).

What is keeping churches from becoming incusive?
The biggest hurdle is Ignorance--even if you see the need, is is hard to know where to start. Special needs families often stick to themselves. We don’t get out much. Mostly, we stay at home where our child feels safe and comfortable and the only things they can tear up belong to us. The people talking about disabilities tend to be family members of individuals with disabilities--parents, siblings--but there has to be both active participants in the church that understand the process of getting a ministry up and running AND individuals that know about disabilities and have a passion for special needs.

There is also Fear--we are afraid of what we don’t know. Will these kids be dangerous? Is this a liability? What if something goes wrong? I can't tell you how hard it is for me to find a babysitter. People know just enough about autism and diabetes to be terrified that something might go wrong while they watch my little ones. Honestly, I can barely blame them. It IS a little scary. Churches are not immune from getting sued, and you have to guard yourself against litigation.

There is a lack of vision--you have to see a need before you can fill it. We just don’t run in the same crowds.  In one of the books I read for this presentation, Unexpected Guests at God’s Banquet (which is available to read online for free, and which I highly recommend if you are interested in the topic), the author tells a story: he was called in to help set up a special ministry, and it came up during the question portion that four of the elders present had children with considerable disabilities, which no one else in the congregation knew. It isn’t something we talk about, unless you’re me and you can’t STOP talking about it. Our kids are in their own class at school and can’t go to many of the public venues your family can, so there isn’t a ton of cross-interaction in the community.

Priorities--there are a lot of ministries, a lot of good causes that you are already focusing on; getting the congregation behind this can be difficult. I am not saying that this should take precedence or displace any existing ministries, but rather supplement our current practices to reach a broader audience. There are individuals with disabilities of every age, race, religion, socioeconomic class--every ministry we have could benefit from considerations for disability.

Humility, to ask for help of the people that know. The information is out there, you have just have to sometimes phone in some reinforcement. Families won’t reach out to a church until we know that our unique child will be safe and welcomed there. But saying we can come is just one step. It is all well and good to yell down at a person in a wheelchair “Hey! Come on in!” but if you don’t have a ramp or a door they can fit through or a plan and volunteers to carry them up and down every single week, the invitation does them no good. 1 John 3:18, “Dear children, let us not love with words or speech, but with actions and in truth.”

I am not trying to underplay it--this is a big job, especially when you have so much going on, but the payoff is unbelievable, for the individuals and their teachers and their families and for the congregation. We will talk more about the benefits later on.

In the end, we justify it, “what difference can one hour really make?” Sometimes you just don't know what is getting through. Gabe’s wandering around the classroom going “ah ah ah ah ah”; is he even paying attention? Can he understand what I'm saying? And those are the good days. Bad days, he's screaming and trying to leave the classroom and yanking away and you didn't sign up for this. Isn't this basically just babysitting?
I ask you again--what difference does it make to you? What do you get out of that “one hour”?

Why do we need a special needs ministry? Brace yourselves, I am about to hit you with a lot of numbers--it's statistics time.

6.5 million children in the United States received special education services last year, around 13% of all kids enrolled in public school. Over 460,000 in Texas alone--3200 right here in Taylor County. That is just ages 3 to 21.  Being enrolled in special education can look several different ways--whether that is adaptations to stay in a mainstream classroom, all the way down to a self-contained classroom with a modified education plan. What it means for all those students is that a panel of professionals and educators has determined that the child will not have success without some sort of interventions put into place.

Those numbers are only the kids enrolled in public school--it does not take into consideration children under the age of 3 or adults over the age of 21 or the many families that choose to homeschool; Abilene also has a state supported living facility, so it's numbers are tend to be higher than other parts of Texas.

The latest census put people living with some sort of disability between 19% and 22% of the population--nearly 1 in every 5 Americans. In the southern states like Alabama and Tennessee, that number is closer to 1 in 3. We aren’t certain why it is higher in the south, but there is high rate of chronic diseases like diabetes that can be associated with disability.
8.4% of Americans are unable to work because of their condition; 5% are categorized as “severe” and need daily assistance.

Of those with disabilities, 13% have trouble with mobility--serious difficulty walking or climbing stairs; 10.6% cognition: concentrating or remembering things or making decisions; 6.5% independent living: doing errands alone or going to the doctor; 4.6% vision: difficulty seeing, even with glasses; 3.6% self-care, like bathing and dressing. There is a high rate of “comorbidity”, or multiple conditions existing alongside one another, which means that it is often not just one of these categories an individual will fall into. Gabriel for example would likely be listed under “cognition” maybe, but also fits the criteria of independent living and self-care.
Because so often we keep to ourselves--we don’t go out in public for fear of judgement or mishap, we don’t socialize much outside of the special needs community--it is hard to get a good picture of how great this need is. When I talk about this group, it isn’t some small fringe niche, but a massive ministry waiting in the wings to be embraced.

Here’s the big one, you ready for it?

90% of families with a disabled person do not have a church family.

90%. That is a troubling number. That is not just the person with disability we are failing to reach, but their family members as well. I would like to explore why that is, what is keeping these families away so that hopefully we can address the problem and fix it.

Church is a burden to special needs families. Surveys given to parents indicate that churches rank number one in least supportive and understanding in consideration to their special families. 27 years ago, the Americans with Disabilities Act (ADA) was released which prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and public places. The notable exception there is that religious institutions are not obligated under the ADA to adhere to the same standards or make their facilities handicapped accessible.

Dealing with a special needs child is stressful and challenging. Getting ourselves and our kids ready and to church is more difficult for our family than it is for a typical family. On average, a child with special health care needs receives about five hours of special health care per week, but almost 12 percent require more than 21 hours of family care per week. Here is a video of a special family’s morning routine.

Families come to church for spiritual fulfilment, to learn and grow in our faith, but often it is more trouble than it is worth, more stress than we can deal with. We overcome all these obstacles and somehow get ourselves and our kids ready and to the building...and then, more often than not, we are sitting in the foyer or the ‘hall of shame’ because our child was making noise or being disruptive or drawing stares. We are asked to stay with our child during bible class, to hear a lesson geared toward a much younger audience. If we are just going to babysit our own kid, we would both be more comfortable in our own home. The next week, we just don’t go.

Having a special needs child takes a toll on every aspect of our lives--we are more likely to divorce than our peers, suffer from addiction, struggle financially, and deal with higher levels of stress that affect us physically, emotionally, and spiritually.

Our marriage can take the biggest strain, which is why so many of them fail. Some studies put the divorce rate of parents of children with autism at 85%. Parents accept diagnosis in their own time and in their own way. Often, one parent becomes consumed with trying to cope with the situation. When you're exhausted and stressed and burned out, you want to lash out at the child that is frustrating you, but you can't because you know he doesn't know any better and it is harder for him than it is for you. So you lash out at people around you. Sometimes it's a person on the other end of the phone; most often, it's your spouse, out of sheer proximity. It's unfair but life's unfair and you can't always help it.

According to the U.S. Department of Agriculture, it will take roughly $240,000 to raise a child from birth to age 18.For a special needs child, those expenses can quadruple. It costs a typical family $60,000 per year to raise a child with a disability because of special equipment, prescription medications, therapies, tutoring, special schooling and more. A lot of expenses like sensory items, genetic testing, and ABA therapies are not covered by insurance and must be paid for out of pocket. The majority of special needs families require one parent to quit their job and stay home, trying to handle these additional costs on a single income. I tried working...it was three years ago. I worked for a while in a preschool as a teacher’s aide--got out in time to pick the kids up from school. During that time, I got called at least twice a week to come and pick Gabriel up from school because of behavior problems or because he was “sick”. If I picked him up, I wasn't allowed a lot of the time to send him back the next day so I would have to keep him home again, which meant I was missing 2-4 days of school every week if I didn't find someone to watch him. They'd call my boss and have her relay the message if I didn't answer my cell phone. Can't keep a job like that.

Philip K Dick said “it is sometimes an appropriate response to reality to go insane”. Accordingly, the stress and cortisol levels of parents of special needs children is considerably higher, and they are more likely to experience anxiety and depression. Poor coping mechanisms lead to dependence on drugs and alcohol. They have higher rates of morbidity and mortality and lower quality of life; they stand at increased risk for heart disease, and suffer weakened immune system that leaves them more prone to coughs, colds, and fevers. There is a phenomenon called Caregiver Burnout, where a caregiver’s personal needs have gone unmet for so long due to tending the high demands of raising a special child that they snap--best case scenario, they become emotionally detached; worst, they become a danger to themselves or their ward.

Our faith can take a hit, too, asking heavy spiritual questions that we are not getting satisfactory answers to. Here is one I get a lot: in the Church of Christ, how do we get to heaven? Confess our sins, repent and be baptized. Easy.
What if an individual cannot confess, cannot repent? What if they cannot understand the rite of baptism? Do we dunk him to cover our bases, or is that just a glorified bath?
Does Gabriel get to go to heaven when at current functional level, he will not ever be able to complete the spiritual transaction that our faith dictates as the only path to salvation?
It kinda feels like when we were kids and asking “okay, so what if you DECIDE to get baptized and you’re on your way to the church and get into a car accident?!!” But for these parents, it is a real concern and salvation issue--where in the Bible does it say that our child gets a free pass? If we don’t do the right thing here, we missing the opportunity to save our child. When you start pulling at loose threads in faith, things start to unravel.

The attitudes of people in the church can be discouraging, and we often feel rejected and isolated, like we are going through this completely alone.

At churches in general, people with disabilities are less likely than their typically developing peers to attend worship service, bible studies, and other church activities. They are more likely to reject organized religion and become atheists. More than half of parents polled reported their child had been excluded at church; 67% have been asked to leave a congregation.

There was a woman in her 40s--she had four kids, and some mental health problems. She had spent the last decade in a mental health facility and when she got out, she got involved in a local church that offered a ride assistance program. She attended for a year, meeting friends, participating in their social activities, making a home for her and her family. One week, the bus didn’t come to pick her up. She waited and waited, but it never came. That happened every week for six weeks. Her social worker went to talk to the pastor and figure out what the problem was--the congregants were no longer comfortable with her coming. Their chief complaints were that she sang too loudly, answered questions that were posed to children, and her odor was offensive. None of these things had been broached with the woman herself so she never knew there was a problem.

This story is not uncommon--there isn’t a special needs family I know, mine included, that has not been asked to leave a congregation. Again and again I hear that it came out of nowhere, that no one had discussed it with them so they couldn’t fix the issues. It is sad and infuriating and devastating because we don’t see it coming and we aren’t given a chance to do anything about it.

Churches named “Problem behaviors” as: being too noisy, not sitting still, having complex needs, touching others, being unpredictable, aggression, and unable to understand lessons. These are legitimate concerns--these behaviors are ones we struggle with and are trying to correct in the child, but can only improve through repetition and practice and exposure to situations where we have established rules for the child to exhibit. Through trial and error and moving literally all over the auditorium for the last year, we have found nearly the perfect spot for our family--on the lefthand side and end so we can sneak out without being too distracting, surrounded by older members that don't seem to notice if Gabe sneaks some sound on his iPad if I sing loud enough to cover. He's getting better. Good Sundays we can stay until the sermon, if we provide several snacks, lots of reinforcement, and marking off the bulletin as we go. I usually have to hold and rock him, but he's getting the hang of it.

Benefits of going to church for individuals with disabilities.

I have always been inexplicably drawn to the Christian concept of “the fountain”. This place where weary souls can come for rest and rejuvenation, a place “you can get lost inside” (to quote NeedToBreathe). That is why I come to church--God is something I carry with me wherever I go, but I come here looking for peace because that's not something I can generate on my own. Life feels so overwhelming and chaotic, but church feels safe and predictable and sure. That is why I come. I come because it gives me hope in and beyond this life, hope for peace and for rest, hope that one day it won’t be this hard. I come because I want to my children to experience this.

Everything we get out of church, individuals with disabilities are able to get too, but they stand to benefit even more, as they themselves are blessing and benefiting the church by being a part of it.

Here's a million dollar word for you: social role valorization. SRV is creating social roles for devalued individuals that enhance their image and personal competencies. It is easy to get caught up in what someone with disabilities cannot do so that you start overlooking what they can. Society views them as a chore, responsibility, burden. Active involvement in the church offers a different perspective, one that makes the individual feel useful and engaged. Gabriel does not need to speak to be able to hand out bulletins, for example, and if he is smart enough to take control of the smart board in his classroom, he can be taught to make copies of class materials. As part of the body of Christ, we all have different functions--giving jobs helps shift the perception away from “burden” to “contributor”.

Conceptualization of oneself beyond diagnosis. There are many descriptors each of us claim for ourselves, whether that is parent, professional, scholar. When I introduced myself, I said “mother”, “wife”, “resource coordinator””. When you have a disability, you have one label: Disabled. Membership in the church shifts that, gives them a new calling, new purpose, new identity as “follower of Christ”, “Christian”. It feels so good, something you can be proud of--not something you were born with but something you chose to be.

Friendship, acceptance, sense of belonging. On the one hand, we come here for that too. I've made some very dear friends at every church I've attended, this one included. But for most of us, we can make friends at work or school or MOPs; we are not reliant on church for our social group if we choose not to be. Opportunities for inclusion and socialization are not as readily available for special needs groups or their families.

Social skills correction. The problem behaviors we mentioned before--being too noisy, not sitting still, having complex needs, touching others, being unpredictable, aggression, or unable to understand lessons--it would be so nice if you could explain to a child preventatively, wouldn’t it? How much embarrassment it would save us! My sister probably would have much preferred sitting her one year old down and saying, “Okay Maryn, while you’re at school today, you mustn’t bite your friends! Have a great day!” It doesn’t work like that though. Kids learn through exposure and by doing the wrong thing so we can show them how to do it the right way, over and over again.  The older they get, the more inappropriate the behaviors come across and the harder it is to correct--they need exposure early and often in order to learn what is expected of them and ingrain it.

Adaptation and resiliency. Church gives us the tools we need to survive in a  hostile world; if you think of the slang associated with intellectual disability--retard, feeble-minded, moron, imbecile...that is the perception people have in general of individuals with disabilities. It can be crushing. But sitting in a pew, hearing that you were made in God’s image and you are beloved and wanted by a creator that made you this way for a purpose, for His glory. That is something you carry with you in your heart when you are going through health scares and setbacks and regression. When you are facing the reality of your situation, it gives you something to hold on to.

Lowering of stressors. This is a benefit that can be attained through long term commitment to a congregation, because at first, going is hard. There is a significant period of adjustment while the individual gets used to new environment and new expectations and new people, where the church gets to know these families and how to integrate them. Over time, the kinks sort of work out and then...one day, you’re sitting in class, holding a cup of coffee, and just... breathing. For forty-five minutes or so, you don’t have to jump up or chase anyone or hold a child. You don’t have to listen to a never-ending loop of “Jingle Bells” or the VeggieTales theme song played back to back to back..to back...to back until you’re pretty sure the iPad is going to have a foot-related accident very soon. For that beautiful hour, you are not on-call--you are just you, and that is all anyone expects you to be. Man, I gotta tell you--during bible class, I couldn’t be more relaxed if I was laying in a beach chair with an ice tea in my hand.

Improves quality of life. We have fully expounded on the challenges facing the parents and families of those with disabilities. The average lifespan of an individual with autism that also has cognitive disabilities is just under 40. Under the age of 14, the leading cause of death for a child on the spectrum is drowning; after 14, it is suicide. Because they are often unable to communicate what is going on with their bodies, they suffer from preventable diseases and poor health related to improper nutrition and poor hygiene. 70% will suffer abuse in their lifetime. Those are my two least favorite statistics when it comes to these presentations, and things I try very hard not to think about when given the choice. Regardless, with all these other benefits--adaptation, lowering of stressors, sense of belonging, all of these add up to making a happier, better life, for the individual and also for their families, and a support system for when things get tough.

Religious coping is simply the positive psychological effect faith has on a person. “For I know the plans I have for you, declares the Lord. They are plans for good and not disaster, to give you hope and a future.” That is one of Gabriel’s favorite verses. He plays it over and over and over, rewinding it again and again so he can hear God’s promise to him, the same promise God gave the Israelites through the prophet Jeremiah--not that He is going to end our suffering or deliver us from our enemies and our trials, but that He is our hope and our perseverance. Religion gives purpose and meaning to a life that seems otherwise chaotic and random and cruel.

If there is one thing that we are really, really good at is rituals and predictability. After sixty years of bickering about it--should it be two songs, communion, and THEN sermon, or song, communion, song, sermon?--we have gotten pretty great at keeping things rolling without mixing it up too much. There is comfort in routines and knowing what is coming next and what to expect, but for individuals with disabilities, it is a compulsion almost to the point of physical need. It makes them feel safe and confident, like they are in control of at least this small part of tuuheir world.

Finally, it does decrease marital stress of the parents. Getting that break, getting to focus on their spiritual health and be alone as a couple, having the support of their brothers and sisters in Christ, and shifting the familial focus from earthly things to eternal can all contribute to a strengthened marital bond.

It is not just good for the families with disabilities, though! We have a lot to bring to the table that can benefit the church body on the whole.

1 Corinthians 12: 17 and 18 says “If the whole body were an eye, how could it hear? If the whole body were an ear, how could it smell? God placed each part in the body just as he wanted it to be.” Every person has unique skills, talents, and perspectives that can be used to glorify God. Famously, Helen Keller, who was blind and deaf, helped found the ACLU. A non-verbal girl with autism, Carly Fleischmann, has given us amazing insight on how the autistic brain works and how much they understand because she learned how to type out her thoughts on a computer. Everyone has something to offer, something to give; they just need the opportunity to do it.

Increases pool of knowledgeable volunteers. When churches start taking members with disabilities, you get not only them, but their family members as well. You get the professionals and those passionate about special needs. This is a ministry that attracts a big, diverse group that have the heart and motivation to be involved in the church this way.

It opens up avenues of ministry for other members of the church. People can’t feel the calling until the opportunity arises--special needs ministry can peak the interest of members looking for their place, or point individuals down the path that becomes their calling. The way I got involved in special needs was actually not when Gabriel was born or diagnosed, but way back in third grade. I was disruptive and lazy and wouldn't complete my work, until a lady at church asked mom if she could try something with me. She was the sped teacher at my school and she paired me with a student from her class and had me help them with their work. It kept me focused and engaged and out of trouble. I continued to volunteer like that for the rest of my scholastic career. God puts this in our hearts; we just have to have the door opened for us.

Lessons in compassion, understanding, and different abilities. Earlier, we discussed fear and ignorance as major obstacles for churches. The way to overcome fear and ignorance is exposure--sitting down and having lessons like this, answering questions, preaching about disabilities, spending time with these families and individuals will help dispel misconceptions and allay uncertainties. It will also help stop the cycle of ignorance because our children, the future of our church, will be growing up alongside these special people, getting to know them and see that they aren't scary or dangerous or a liability, they're just...kids.

Finally, they're doing it--why should we?

There are two special needs church ministries in Abilene. One is at Beltway Baptist, the other is an all autistic class at Aldersgate Methodist. Highland has King David’s Kids support group which meets twice a month on Tuesdays, but no Sunday school class or Wednesday night, no accommodations during service.

Two programs, for 3200 kids. Even the deepest coffers and most enthusiastic volunteers could not support a population that size, not for long. Families are forced to choose between doctrine and a program that can help their kids. Our church back in Lubbock was wonderful but a bit of culture shock because Michael and I had both been raised staunchly conservative church of Christ and this had (-stage whisper-) instrumental music. It was also clear across town and we couldn't afford to pay gas back and forth every week.

Families don't often plan on having a special needs member, it's just one of those things that kind of just happen. So if one is born to your existing members, the church is forced to make a decision--either scramble to meet their needs on the spot, or ask them to leave.

Next week, Jarrod will be teaching about disabilities and doctrine; the following week, I will be back up here to talk about how we can implement this information, and what we can do as individuals and as a church entity to prepare for special needs. Thank you so much for coming tonight.

Sunday, August 20, 2017

Retarded

I remember the exact day I became physically, consciously aware of the word “retarded”.

In high school, my algebra teacher patiently explained to the class that she would not tolerate the use of retard or retarded in her room, saying that it was hurtful. I didn’t understand at the time. Old people are so sensitive, amirite? They just don’t get it. I don’t mean anything by it. I’m not a hateful person, don’t look down on those that are differently abled. My intentions bought my absolution.

Several years later--June 23, 2011 to be exact--we were driving home from Dr. Driskell’s office in our worn-out Jeep with holes in the seat. My phone at the time was a Motorola Razr 2 in bubblegum pink that made that satisfying -clack!- when you slammed it shut, but cost a fortune per megabyte to look anything up on the painfully slow internet. We were going to have to wait until we got home to get on Michael’s computer and research this new-but-familiar word, Autism.

Back then, we knew nothing. Misconceptions at best. Google, unfortunately, would not be much more helpful as no one can agree on anything regarding the issue (at least it feels that way).

We could see Gabriel in the rear view mirror behind us, placid and content staring out the window at the houses passing by. One hand was in his straw-colored hair, the other holding on to the pacifier he was chewing on noisily.

Our baby.

Michael hesitantly asked, “Does this mean….is he retarded?”

It was a fair question. This was actually at the cusp of a big change to the Diagnostic and Statistical Manual of Mental Disorders, the fifth edition that would not only combine the subtypes of autism under the umbrella term of Autism Spectrum Disorder, but would replace the diagnosis “Mental Retardation” with “Intellectual Disability”.

(Note: the World Health Organization’s International Statistical Classifications of Diseases and Related Health Problems--ICD--still utilizes the term mental retardation. This is expected to change with the release of the 11th edition of the ICD, which is projected to take effect in the United States by 2023.)

Gabriel was first diagnosed in the summer of 2011 with classic autism: moderate to severe under the diagnostic criteria of the DSM-4.

Autism has a high rate of comorbidity--meaning two chronic conditions that are simultaneous in an individual--with epilepsy, ADHD, depression, anxiety, and intellectual disability, among many others. Intellectual Disability (ID) means limitations in adaptive behaviors (practical and conceptual skills such as social interactions, language, and activities of daily living) as well as a below average IQ. You can see how autism would often go hand-in-hand with that, as one key characterization of autism is impairment to adaptive behaviors.

So, when Gabe was diagnosed, the manual they used still held the phrase “mental retardation”, which he had a better than likely chance of being diagnosed with in the future.

In that moment, the word made a new kind of sense to me.

I can't say anyone’s intention behind saying phrases like “that's so retarded” or “don't be a retard”. Frankly, I'm sure there is little malice intended. A wise woman once told me, “you are an expert on your intent; I am an expert on your impact”. That's what this post is about, then. I can tell you the impact these words have on me, and likely on many more people affected by learning or intellectual disabilities and disorders.

After that day, the way those words are used, colloquially, casually to insult situations, behaviors, words, or people was no longer this innocuous, innocent ribbing. It was labeling something as inferior, worth less than our value.

We like to take words and repurpose them, meanings changing and adapting over time. When I say something is “cool”, listeners do not think I am referring to the temperature of the item; if I say “that sucks”, one does not assume the situation is creating a vacuum. Words are somewhat cheapened this way, being used to assign value or denote worthlessness instead of as descriptors. “Blonde” has much more usefulness to describe the shade of one’s hair, after all, than to imply unintelligence. There are so many other words--ignorant, senseless, foolish--that could have been used, but we insist on derisively saying, “ha! What a blonde!” Why?

When we categorize someone like that, we are unconsciously dividing it into an “us” and a “them”. If “they” are stupid/worthless/bad/wrong, then by virtue of not being them, the “us” are intelligent/valuable/good/right. It is much more pervasive than we realize once we become aware of it.

Our thoughts and our words matter. Proverbs 18:21 says “death and life are in the power of the tongue.” In Matthew 15:18, “But what comes out of the mouth proceeds from the heart.”

When someone says “retarded”, “retard”, or “-tard” words (ie, libatard), I feel it on my skin, a stab at a perpetually exposed nerve. Sometimes, I call people on it, if I think it will help. Most of the time I just flinch hard and exchange a look with Michael. He felt it, too. One thing we definitely never do is not notice.

It feels like every hateful thing people have thought about Gabriel because of his condition.

Like every struggle, every setback he has ever faced is being tossed back at him.

Like no matter how far he comes or how much progress he makes, he'll always be seen as inferior, broken.

Worthless.

Because when that word is being bandied about, it is not describing a chemical process. I hear that a lot, and my general rule of thumb: unless it is in a chemistry lab being used to actively describe a chemical process, then it's probably best not to use it. It has been co-opted from its original use like “cool” and “suck”...”faggot”.

My mother used to say, “Jesus knows what you want to say”. She was specifically referring to our teenage use of the word “freaking” as stand-in for a more colorful and exciting f-adjective. That has stuck with me because means that I need to be aware of the subtext and intention behind my words before I say them.

The DSM changed in May of 2013. The term MR was quietly laid to rest with the last edition. As of this post, Gabriel has not been diagnosed with Intellectual Disability. His developmental pediatrician has not even broached the subject, so he has no medical diagnosis of
it. At his 3-year complete Full Individual Evaluation (FIE) for his academic diagnosis, they suggested adding ID to his coding, but Michael and I politely and firmly declined. They tried to pretty it up and insist that it was something that could help Gabe, but I maintained that autism covered and explained the deficit in adaptive behaviors, but as he is unable to comply with an IQ test, it would be premature to affix an unproven label to him. AU gets him into Special Education and ensures his academic needs are being met; ID is not going to change that.

I can now definitively reply to Michael of 2011 that no, this does not mean Gabriel is retarded.

Doesn't stop me from flinching every time I had to write that hateful word for this post.

Because that is what it is, whether it is meant that way or not. It is a hateful word, one that has been hijacked from its original meaning and used as an insult, belittling. Regardless of intention, the impact is still being felt, keenly and unavoidably.

So please. Let this word die a dignified slang death.

Friday, June 16, 2017

She's a Natural

People think parenting is instinctual.

I have to assume they base this on observing nature. Look at God’s creation, who know exactly what to do to care for their young! Surely man, who was made in God’s own image, is even better equipped to rear their offspring!

This only works of course if you don't look too close. Black bear mothers, for instance, are lauded as one of most protective and nurturing, but will often deem single births as not worth the time investment and will push singlets outside the cave before going to sleep and trust the situation to resolve itself. Pandas will choose the most promising offspring and ignore the other completely, devoting all her time and energy into her favorite.

There are many species that treat their young callously, making you wonder how their kind has managed to survive at all. It is no surprise then that the extent to which humans are inherently nurturing extends precisely to not eating our babies when they are born and not much further.

I have mentioned before that I myself was not born maternal.

My mother likes to recount the story of a Christmas when I was small that I received a babydoll. This was a special babydoll that made crying noises, just like a real baby! I named him Christopher, and before all the wrapping paper had been picked up from the floor, I had stuffed the squalling nuisance in a drawer and left the room.

If you had asked me when I was younger if I wanted children, it would have stumped me. Honestly, I never thought about it. I liked names--Stephen and Varian for boys, Scarlett and Charlotte for girls. Names were pretty and interesting, things I enjoyed studying. Children were scary and unpredictable and more than a little gross. I went out of my way to avoid interaction.

Cousins tempered me a little. Jacob was close to me in age so he was more of a peer, but the rest were considerably (nine or more years) younger. Jessica it took me the longest to warm up to. Justin was always wanting to do stuff and be outside and move. I didn't see Sean very often, but he was sweet and didn't bother me excessively.

Tyler, who Benjamin reminds me a lot of, was probably the one I...it sounds harsh to say “tolerated”, but it is somewhat apt. I loved all of them, but Tyler was the easiest to spend time with for a while. He would get a stack of books and sit in my lap and twirl my hair while I read to him. This was the kind of kid I could handle.

When Emerald came along, it was like handing me a rubix cube with a bomb inside.

I never baby talked to her. It was matter-of-fact speech. “Hello, infant. I am your mother.”

Had she known better, I'm sure she would have been terrified.

She didn't though, and so we set on the path of learning together. Nursery rhymes were not in my wheelhouse, so she was lulled to sleep by Mom crooning Matchbox Twenty and Queen. Growing up Church of Christ was a boon because I had a positively endless trove of worship songs memorized.

One particular afternoon, I sang “Down to the River to Pray” (from the “O Brother Where Art Thou” soundtrack) for an impressive four hours, inviting every familial name I could invoke to “let’s go down, come on down”. It kept her from crying at least until Michael got home.

We didn't play games like peek-a-boo or hide-and-seek. I explained to her what I was doing, showed her how things worked. I shared facts with her about everything--things we saw on walks, the nutritional value of food we were eating (if any), the science or history behind everyday items.

Eventually we amassed a collection of children's books, but before then, I read aloud to her whatever I was reading, be it scripture, textbooks, or classical literature.

And let's just say, people like me are the reason there are instructions on the side of the diaper box.

She and I didn't know what to expect from each other, so we learned with and from one another.

As a child, I spent a lot of time around animal babies. Mostly cats, my Sassi having a litter of darling kittens what seemed like every few months, but also chicks and ducklings, little bunnies and puppies and goats. All those that were born at our house knew right away had to find their mom for food, even with their little eyes and ears still shut.

Why then was breastfeeding so inexplicably, intricately difficult? With each new kid, it was like riding a bike. Except the bike is on fire, you’re on fire, everything is on fire and you’re in hell.

A lot has changed in the decade since Emerald was born. She taught me a great deal, the least of which is every subsequent kid is a totally new creature. You'll feel as inept and out of your element trying to figure out each new little person.

I remember bringing Gabriel home, thinking I was officially old hat at this newborn thing, when he ended up peeing all over my living room wall during a diaper change. (Gotta watch those boys; I know this now.)

It serves us well to start parenthood out as a blank slate, I think. Excessive programming would have made it that much harder to acclimate to the unusual circumstances each of us face in our unique children. It helps us stay innovative, trying new and different things in an attempt to nurture these lives we have been entrusted with in better ways.

If you had told a fifteen year old me that I would turn into mush over a baby, I would have thought you were crazy. But Tula here transforms me into a pile of mashed potatoes, she's so cute. I have a virtual arsenal of nursery rhymes and lullabies (though I still sing my fair share of Queen), and a closet chock full of picture books to share with her.

And would you know it, I coo and baby talk with the best of them.

There's still so much more to learn, though. This is the first baby I've had that was mama’s--she cries if I'm not holding her constantly. Even Michael has trouble getting her happy sometimes.

And would the powers that be just decide what is safe and just leave it at that? I just read an article the other day on why you definitely should not use Dreft laundry soap for your infant. I didn't even know babies needed different laundry soap until two kids ago!

Like any vocation you dedicate yourself to, you are going to get better. I have spent the last ten years perfecting my craft at a rate of nearly 24 hours a day.

People often ask how I do it--how I know what Gaby is thinking or what he needs, how I wrangle one kid while nursing another while making a plate and calculating carbs and taking a phone call and baking an award winning pie (yeah, right. Like we get pie).

Hey, I guess I was just born for it.



Yup. This is good.



--Andie

Monday, February 20, 2017

Gabriel's 8th Birthday



My son, Gabriel, is a devious little imp.

He possesses a singularity of mind, a unique driven focus that allows him to get away with pretty much any scheme he can concoct.  


In our backyard, there is a large trampoline.  Gabriel loves to jump on the trampoline, he’d stay on it all day if we allowed him to.  But occasionally, the time to jump has past, and it is time to come inside. Gabriel and I often disagree as to when that time should come.  However, I am bigger than he is, and can usually throw him over my shoulder to bring him inside.  


This is does sit well with Gabriel, and so he begins to put his plan into motion.  You see, Gabriel is quite clever.  Almost disturbingly so.  Through a long set of trials and errors, he has determined a series of facts.  He knows that Daddy will come running if he hears a loud crash at the other end of the house.  He knows that Daddy will come through the main hallway, instead of the side route through the kitchen.  He knows that Daddy will spend at least a few seconds scanning the room, looking for signs of injury.  And lastly, but most importantly, he knows that the front door will be unguarded during that time.


And so he waits for me to get comfortable in my chair, and then climbs behind his dresser.  He pushes, with his back against the wall, and the large heavy dresser topples, making a terrible noise.  Immediately, he ducks into the kitchen, narrowly missing Daddy as he comes down the hallways to investigate. He slips into the living room via the kitchen entrance, unlocks the front door, and is outside.  By the time Daddy realizes that he’s been duped, Gabriel has run around the side of the house, scaled the fence, and is back jumping on the trampoline just in time to giggle at Daddy as he comes out the back door.





It does not matter that Daddy will simply pick him up again and carry him inside.  In fact, at this point he will willingly and of his own determination walk back inside himself.  Because he won.  HE decided when it was time to come inside, and made a fool of Daddy in the process.


As our regular readers know, Gabriel has Autism, and enough has been said on that subject here that I will not rehash it.  Instead of talking about Gabriel’s ‘condition,’ I’d like to talk today about who he is outside of that diagnosis.  And on that topic, I’d like to rehash what I stated at the beginning.  My son, Gabriel, is a devious little imp.





He is also the most affectionate child I have ever met.  Anyone who has ever met Gabe has been on the receiving end of genuine, heartfelt hug.  Most do not escape his grasp without a big wet kiss as well.  He loves to be held, and he shows a certain empathy and compassion for others in this, because he assumes that everyone else does as well.  He goes out of his way to make sure you know that he loves you, regardless of how long he has known you.  Without ever making eye contact, he will find you and sit in your lap, cuddling against your chest.  He appreciates physical contact, and he assumes you do as well.














If you ever do manage to make eye contact with him, you immediately notice a fierce intelligence behind those twinkles.  His mind never rests.  He is constantly scanning the room, marking the exits, looking for people that will and will not let him get away with his tricks.  If you are eating something that he likes, you’d better guard it well, because the second you set it down, he will be keenly aware.



















Gabriel loves to eat and drink, he loves to run, and he loves to laugh.


I think we all could learn a lot from him.

Happy Birthday, Gabriel.  Daddy loves you.