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.

Tuesday, September 5, 2017

BenjaFriend

I lost some momentum with the story of our lives. I petered off around the exhaustion-blurred haze of Gabriel’s toddlerhood and diagnosis. Though it is more recent, it is the most difficult to recall because of the sheer muchness of it all. If we stop there, though, we miss one of the very best parts: my baby Benjamin.



Gabriel’s school had the sit down with us in late October 2010, which led to the doctor’s visit, flurry of referrals, and sleep-deprived EEG in early November. I remember a weird moth epidemic remnant from the summer, which left winged corpses all over then.


Most of the specialists we had been referred to would not have openings until the spring; the neurologist we had to see right away, but the rest were not pressing. We were suspended in this purgatory of waiting for answers.


Somehow we made it through the holiday season. Things weren't at a huge disconnect for us yet, Gabe being only shy of two, his behaviors obviously immature, his development delayed, but not so glaring or unmanageable. Those that knew of the diagnostic process we were undertaking were highly skeptical, and voiced their doubt. He seemed for all the world like a “normal” little boy.


That January, I decided to take the semester off school because all my attention was focused on Gabe. I never went back.


At the beginning of February, I took one of my semi-regular dollar store pregnancy tests to make sure I was still flying solo. Imagine my surprise when it informed me I had a tiny passenger aboard!


The day I got the positive test I remember vividly. My friends Beth and David came to take Emerald and Gabriel to the mall, where there was a new bounce house play area that had just been installed. They knew Gabe would get kick out of it. We got an afternoon pass and let them play while I talked to Beth about what I had just learned. Before we left, Beth wanted to stop in Barnes and Noble to pick up something.


Maybe he was overstimulated, maybe he wanted to go back to the play place...I'm not entirely sure. But Gabriel had his first big meltdown. He grabbed shelves full of books and was pulling them down; bright red in the face, sweating, hysterical, squalling like a fire engine. When Emerald throws a temper tantrum, I get angry and irritated. This wasn't like that. I was scared because I had no control.


All the way back home, I worried until I was ill about how I was going to handle him AND a new baby.


The pregnancy itself was not bad. We told Michael's family a couple of weeks later at his mother’s birthday party. We got a picture frame that had a grandparent quote and inside was a sonogram. Beth made cupcakes that said “boy or girl” on them. Everyone seemed happy by the news.


There was no sickness this time around, and the only craving I recall was hot dogs. As I do not eat hot dogs, I sat in the parking lot of Wienerschnitzel with the windows rolled down so I could smell the air. I had terrible acne, and for two weeks I had a carnitas monster burrito from freebirds twice a day.


In the mornings I would get up and do pregnancy yoga to make room for my big baby Ben. Next to me, Emerald would mimic the motions, down to sending love to the “baby” in her tummy like I did. Gabriel crawled beneath my legs and under my arms, laughing as he wove his way in and out, trying to knock me down.  


Early on, I asked Michael what he wanted to name this baby. Right away he said “Benjamin Reilly”. It was a name we had liked for Emerald, and the name of a Spider-Man character (Scarlet Spider, clone of Peter Parker. Look it up--good stuff). If it was a little girl, we decided on Gwendolyn Fern.


Toward the end of the pregnancy, I was dreadfully uncomfortable. I couldn't eat, couldn't sleep. I was too hot all of the time. Every night around 11 pm, that tiny fetus would get to doing loop-de-loops and barrel rolls inside me and I would lay there feeling every bit of his bony body. His head was stuck down in my pelvis and it hurt to walk, to sit, to stand. I was enormous.


He was born at lunchtime on Labor Day Sunday, one of two that day. The other was an emergency, but we were planned.



Everything was going so smoothly when gradually I fall asleep. They had sedated me, and I didn't know why. They pull out the baby and I hear the nurse say, “where was she hiding that thing?” I am confused and a little offended; what's wrong with my baby. Michael whispers in my ear that he was 7 pounds, 14 ounces. I am relieved because this enormous weight has been lifted off of me and I can breathe again. I slip off to sleep.


Michael and my little Benji baby left; I was in a drug relaxed state, in and out of consciousness. There was a carousel of blood, and the doctor saying there was a bleed somewhere. They had to fill my bladder to check for leaks.


I drifted away again.


A little while later, I feel the doctor's hand on my shoulder. I swim back up to consciousness. Not sure why I'm still in the operating room; why haven't I moved to recovery? The doctor tells me there were some complications but it was under control, but that I shouldn't get pregnant for five--he glances down at my abdomen, and corrects-ten years, if ever again. I give him my most winningest smile and say that I was OUT of the baby making business.


In recovery, I was back there for so long. The nurse with the pretty eyes said that I could sleep, just sleep. Family would keep me up, but back here I could sleep.


When I finally did emerge, I didn't realize how doped I was--I grandly and expansively told everyone how much I loved everything and everyone. I was so happy. My baby was so perfect! Beautiful! He had this dark fuzzy hair and he was chunk chunk chunky. I was quite pleased with myself.


The drugs took a while to wear off. When they finally did, Michael brought me up to speed on how concerning the day before had actually been.


The surgeon had seen a “window” where a former scar had separated, thinning the muscle of the uterus enough to make it transparent. He had run his finger across it, and it ripped open beneath his touch. The dehiscence was severe enough that they were able to get the baby out through the tear without cutting more open. As soon as they saw that, I was quietly sedated so they could control the bleeding and try and repair the damage.


I had no idea. Everything had been so calm and peaceful. The recovery was much more uncomfortable than the previous two, but this was my third.


He was so good. His newborn cry sounded like someone had described crying to him but had done a poor job; he just said the word “wah” in this deep throated absurdity.


Because of gestational diabetes, he had a narrow lower body with a proportionately larger head and chunky shoulders and arms. It was kind of funny to look at, but he was beautiful.


The first day we had him home, I set him in the bouncer to get some water. When I returned less than a minute later, Gabriel had flipped the bouncer upside down--Ben was happily cooing facedown in the carpet.



That was the only sign of aggression we saw from Gabe to Ben for several years. Ben would play too rough or hurt Gabriel, and time and again, Gabe would kiss his hand and put it back in his lap. Gabe wasn't above stealing a pacifier or bottle, but he was always exceedingly gentle with his baby brother. During OT, we would put a pillow inside a laundry basket with Ben laying on top and let Gabe push him up and down the hallway, both of them laughing all the way.


Emerald took delight in Ben. She wanted to feed him, hold him, change him. She was the first to make him laugh. She'd read stories to him and share her food and toys. Everyone she met, she would tell them about her new baby brother, of which she was so proud.



Benny is and always has been a joy to be around. He's so kind and tender hearted. Whenever Emerald gets in trouble, he comes in, shaking head to foot terrified but firmly telling us to leave his sister alone. If she can't have tablet time, he offers to give her some of his.


This post is largely influenced by my Benjabuddy’s 6th birthday, which was yesterday. The kids ask me what they were like as infants. I tell them Emerald was “Chill”, Gabriel “Curious”, Tula “Gassy”. Benjamin, my darling little one, was “Happy”. That would change to “Reckless” when he got a bit older, but as a baby, he was my cheerful fella. We would go to the store and get coffees buy-one-get-one-free (decaf for him) and walk around the store singing. He'd always loved to sing. He’s babble back to me “a doka doka? A doka doka doka doka”, intonation of speech but utter, adorable nonsense.

People ask me if it was a bigger adjustment to go from one to two, or two to three kids. As close as I had them together, everything was essentially assembly line--feed three, bathe three, dress three, kiss three, one right after another. Ben just slipped into our lives like he had always been there.


(In answer to that question, I say every addition is an adjustment and every change has a learning curve.)


I wasted so long worrying, worrying about how I was going to handle this new baby and a possibly autistic toddler, how I was going to manage with all these changes. A lot of good it would do me; life was changing, whether I wanted it to or not. I couldn't have foreseen or prepared for how difficult it was going to be, that's for sure. But I would have never gotten to see how good and gentle Gabe is with babies, or what a wonderful teacher and guide Emerald would make. Benjamin has brought so much joy and love into our family, hope when we needed it most.

God knew just what we needed when he sent our little Ben.


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.

Monday, August 14, 2017

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!