Monday, December 22, 2014

Hospital Jesus

The radio preacher’s words echoed back to me, “Without Jesus in our Christmas season, we have no reason to celebrate.” I knew he was right and I was ashamed that in my haste to check things off my list, I’d neglected to even think about Jesus of late. As I headed into work, I determined to find Him in my Christmas, beginning that very evening.
Except when I finally got home, I discovered that the abscess behind our little Serb’s ear had doubled since the day before and was clearly not responding to the prescribed oral antibiotics. A quick call to the ENT confirmed my suspicion that an ER visit was in order. So much for Jesus, I thought wryly...
Read more on my new blog, Grace For That.

Monday, December 1, 2014

Change is in the Air

I started blogging here shortly after the birth of Eon as a way of processing my feelings and experiences, as well as connecting with others on a similar journey. I added in my blog at Remnant of Grace as a way to keep my thoughts on faith separate from my musings here on disability. 

But my life is hard to categorize and my brain isn't that linear. It's time to converge my blogging spheres and allow myself the freedom to write whatever my heart feels. 

Please join me in my new space at Grace for That over on Wordpress. I started the new site off with a controversial bang because, frankly, it didn't fit into either of these spaces. 

Thank you so much to my readers here. I have treasured this season of my life and the support you've given me. I do hope you'll follow me there. 

Wednesday, November 19, 2014

Blessing The Special Needs Mom

I was asked to speak at a MOPS group on the topic of "encouraging, supporting, and loving moms of kids with special needs." Of course, I was thrilled to be asked and even more thrilled that they recognized that as a need to begin with. 

I thought I'd post my notes here for anyone who couldn't be there: 

Just like all families, special needs families are a varied group. So many possible diagnoses and then levels of severity within those diagnoses, medical complexities and complications, coping skills for the parents, support systems for the family, etc. It's a tough job to try and speak for all of them. So, I reached out to my Facebook groups and asked other parents what they want you to know, too. 

So why do special needs families need to be encouraged? I wrote this description on my blog recently: 
Families who have a child with special needs are often in crisis. Medical issues can be chronic and exhausting, but often they come on suddenly requiring emergency hospitalizations or testing and sending the household into a tailspin. Even without medical fragility, kids with special needs can have different behavioral issues that leave parents chronically stressed and sometimes with little hope. 
I wrote about the ramping up of behaviors of our little guy in a recent post here and the effects on my psyche and our family. I left out a lot of detail and failed to describe adequately the complete drain on my coping skills, our resources, and the overall toll it took on our family. We are on the right track now and seeking better supports which have infused us with new hope, but I would be a fool to think that we will be crisis-free in the future. 
Parents of kids with special needs are also lacking in restful sleep. Some kids have sleep disorders and require very little sleep (ours does), some need middle of the night meds or feedings, and sometimes the intense worry and anxiety of protecting and caring for our children can keep us awake. 
My point is, often times, we parents are shredded. We are at the end of our proverbial ropes and hanging on by a thread.
What we want you to know:

  • Know that we're just like you - We're not special and we're not supermom. Contrary to the popular adage we hear a lot, God does not give special children to special parents. That's just crap. What we're doing is what all good moms do - caring for our kids and meeting their needs. Don't tell us, "I could never do what you do." Of course you could! And you would, if your child needed you to do it. I think it's supposed to sound encouraging, but when I hear that, it makes me cringe and think of all the things I'm not doing that you probably think I am. No mom thinks she's got it all together, and if you do, just get on Pinterest for five minutes. You'll get over it. We're just like you and we all feel like there's more we should be doing.
  • Get to know our kids. We think our kids are amazing! While life may be tougher than average, we wouldn't trade our children for anything. We are not disappointed in them. When they meet a milestone they've been working on for months, we celebrate like they've scored the winning touchdown in the championship game. If you want to bless us, get to know our kids. Learn some signs if they use ASL or figure out their communication board if that's what they use. If they use a wheelchair, ask us if they can sit in a regular chair and how they transfer. Learn about their feeding needs, etc. In spite of their special needs, they are children first. They each have unique personalities and things that make them laugh and when you get to know them, their disabilities will begin to disappear. 
  • Reach out to us. This life can be isolating and we're lonely. Our kids' needs often limit our involvement. We may not be able to attend the mom's night out because we don't have reliable childcare. The morning Bible study may offer childcare, but not necessarily for our children. Even the group playdate in the park is not a social time for us as our child may need constant supervision due to being behaviorally inappropriate, or unable to physically manage the equipment. Please, continue to invite us even when we say no more than yes. It means a lot to know we're remembered. Forgive us when we get wrapped up in something to do with our child and are not as available or interested in your life as we want to be. We don't want to have a one-sided friendship and we're sorry if we make you feel that way. Don't give up on us when we fall off the radar. 
  • Give us grace when we're not very gracious. Often, the most difficult part of this journey is everyone else. This life is one of constant advocacy. Our children face discrimination from the school system to the insurance companies to looks from other parents to comments on blogs. We have to fight for the rights of our children in almost every arena, sometimes for their very right to exist. Because of this, we often have a chip on our shoulder. Please give us an extra measure of grace. We've learned that the best defense is a good offense and It's hard to shut off "mama bear". We forget that there are safe places and safe people. 
  • Be our support when our child is hospitalized. When our child falls ill and goes to the hospital, our world collapses. Gift cards to local eateries are so helpful to keep us from eating expensive and awful cafeteria food. (Moms aren't provided a tray unless they are breastfeeding.) Bringing healthy snacks when you visit is wonderful, too. Often, we don't feel comfortable leaving our child and having a stash of protein bars and fruit is helpful. And do visit, even when you don't know what to say. Just sitting with us helps break up the monotony and reminds us that there is an outside world. Organizing meals and childcare for the family at home is huge, as well. 
  • Offer babysitting/respite. So many of us don't have anyone reliable to watch our child. Marriages in special needs families are often strained. Allowing us a date night would strengthen the whole family.
  • Offer to take the siblings to fun events/extras. Siblings sometimes miss out on those and we feel guilty about that. While we prefer the whole family be together, sometimes it's just not feasible to take the child with special needs to certain events. It stinks for all of us when that means their siblings miss it, too. 
  • Please don't use the R-word. Ever. When you say, "I'm such a retard!" or "This phone is so retarded!" it cuts deep. We know you didn't mean it "like that", but nothing you can say is going to make it okay with us. It is offensive and hurtful to an entire people group and their families. Please, choose a different word. 
  • Become aware of how your church handles special needs. Advocate if necessary. We love it when someone comes alongside and advocates for us. People with disabilities and their families are among the least churched group in America. I know of many, many families who used to faithfully attend, but have been wounded and made to feel unwelcome because of insensitivity toward (and, in some cases, outright rejection of) their child with special needs. I mentioned earlier that we are often shredded and feel isolated. We need to be there. Please make sure your church is making a place for us. 
I don't have the answer for every family. My biggest piece of advice? Ask your friend how you can bless her. Tell her you don't know much about special needs. Would x,y,z be helpful? I know she'll be touched. She may never take you up on your offer, but she won't forget it, either. 

Sunday, November 2, 2014

Be the One

We did not attend church today as several of our crew are fighting the upper respiratory infection I brought home from work and we decided not to spread it around. 

A few of my friends posted videos of Facebook in commemoration of Orphan Sunday. They were my undoing. My heart filleted and laid bare. Salt rubbed in the wound that is always there, but sometimes below the surface of an apathetic life and my first world concerns. This is the day, one time a year, that the church notices, that we take a closer look and we see them. 

The numbers are overwhelming but we need to remember that each of those children has a name, a personality, a uniqueness...a purpose. 

It only takes one to make a difference in the life of an orphan. 

Then I watched this video and I wept. 

Did you see that? Did you see how these boys light up when shown just a little bit of kindness? Did you see them melt into the volunteer when she holds them? Did you see the bruises and the sores? Can you imagine what their lives are like when there are no witnesses?

It seems like so little that these volunteers come once a week to ease their suffering. But these children have nothing and for those with nothing, that little is EVERYTHING! 

I weep because I see my Bogdan in them. Their lives were what he faced. Instead, he is learning to speak and the joy of voicing his wants. After careful study of his brother and I, he is learning to relax into my snuggles and to seek them out. He is learning colors, and sorting, and sequencing. His personality is coming out more everyday. 

He has a future.  

And, like most orphans, they don't. But, unlike most orphans in the same situation, they have Friday. And Friday, those volunteers will come back and bring the light and the love and the music with them. And the next Friday, and the next. 

Because those volunteers know the power of one. 

It may seem like too little to sponsor an orphan, or contribute to a children's home, or volunteer with Big Brother's or Sister's, or be a Safe Family.

But it's not. 

Be the one to make a difference for one. 

Sunday, October 26, 2014


We were talking about adoption. She admitted that she's not open to special needs. "Not everyone can do that," she said.

I didn't hear the rest of the conversation, so puzzled was I by that last statement. 

Do what, exactly? What is it she thinks I do? 

Meet my kids needs? Love them? Sacrifice my time, energy, and self to make sure they're cared for? That's just good parenting and it's what all good parents do, regardless of the needs of their kids. 

What superhuman qualities does she think I possess that she doesn't?

The statement bothered me. It bothers me, still, and I can't quite put my finger on why. 

I feel like we're putting children into categories and those with special needs are a subspecies. In adoption, you get to choose. There are boxes to be checked. You get to decide what's acceptable. It's a measurement held up against a child to see if they pass the test to be in your family. 

Those with special needs are found wanting, time and time again. They are left languishing, usually dying, in institutions. They are left waiting in group homes, statistically more likely to be abused than not. They are shuffled from foster home to foster home until a permanent institutional placement is found. They are left behind. 


Because, while they have no facts to back it up and no first hand knowledge of what that actually entails, potential adoptive parents believe "not everyone can do that." It's too big. It's too scary. They don't want a subspecies. They just want a normal child. They don't see the child with special needs as a child, at all. 

Sadly, it's not just relegated to adoption. As prenatal testing becomes more sophisticated and widely used, the unborn must now audition to be a member of the family, as well. Score too high on the chromosome test or too low in grey matter, and you fail. Not only do you not get a family, your sentence is death and you don't even get a chance to prove your worth. 

We live in a society in which easy has become idolized. That which costs something, which taxes us in any way without great perceived reward, is to be avoided. Including children. 

Let me let you in on a little secret. Parenting children with special needs is rewarding. Personally, I don't think it's any more or any less rewarding than parenting typical kids. It's just different. Sometimes, it's amazing and filled with joy. Your child reaches a milestone they've been working on for months and you feel like your heart will burst within you. 

And sometimes, it sucks.  Kids are messy and demanding and exhausting. Kids with special needs are sometimes those things on steroids. 

But, once you say yes to a child, you love him to the moon and you wouldn't trade him for the world, even with the messy and demanding and exhausting, because he's yours. And he is worth that. And, actually, you find that isn't nearly as big or as scary as it once was. In fact, that kind of fades into the background and turns into something you now know simply as life.

And life is good. 

Sunday, September 28, 2014

I Don't Have My Sh*t Together

One of my co-workers made a crack the other day that hurt my feelings. While she said it in a joking way, she basically called me out on my slacker tendencies. I ruminated on it for days. I wanted to defend myself, but the truth is, I have no defense. I do leave stuff undone - paperwork late, equipment left out, co-signings piled up - things likely to drive her crazy. Don't get me wrong. My patients receive good care from me and I have complete confidence in the job I do for them. As a relationship-oriented person, I am likely to go the extra mile to make sure all their needs are being met, beyond occupational therapy, as well. But the other stuff, the mundane details, those are less likely to receive my immediate attention. 

I wanted to apologize and tell her I'll do better. But the staggering, deflating, and unabashed truth is I won't. I know this because I'm doing the best I can. 

A nauseating wave of knowledge hits me: This is truth in all areas of my life. As a wife, as a mother, as an employee, as a friend, as a sister, as a daughter, as an advocate, as a person, I'm doing the best I can. 

And I'm falling short. 

Appointments skipped, homework undone, laundry left in the washer, field trip money not delivered, emails unreturned, voicemails unanswered, text messages ignored, snacks not sent, basketball sign-ups missed, fine motor opportunities lost, reading practice shelved... The list is endless. 

For all I'm not doing, I can't seem to stop the thinking. My brain will not shut off. Constant ruminations of the above list, mixed with the current list of to-dos and an ever-running list of want-tos and time will not slow down. Catching up is an impossibility and my feet feel stuck in concrete when I do get an odd minute, unable to prioritize. 

Enter panic attacks. 

Now that Bo finally has a cocktail of medications that allow for more than four hours of sleep a night, my brain has found other ways to keep me from precious rest. If it's not rolling over the constant lists, it's worrying about the elusive "enough" known so well by those of us in the world of special needs. 

Do they get enough therapy? Should we add in outpatient speech again for Eon? I should call about the script for a communication device for him. Is he really in the right school placement? Does he get enough support? I hate that he is telling me about "mean boys" but can't communicate more than that. Is he just being dramatic as he tends to be or should I be doing more to investigate? What about Bo? He can't communicate at all. What if people are mean to him? I'd never know. Should I be demanding more communication sent home about him? I keep meaning to do flash cards for reading for those boys. Why do I keep forgetting? I need to spend more time in physical contact with Bo for attachment. I have not done enough of that with him. I don't do enough of his physical care, either, when I'm home. Do I do enough sensory stim...

It spirals on and on until the question becomes:
Am I enough?
And suddenly, my heart is racing and feels as if it will pound outside my chest wall and I cannot breathe. It takes all mental effort to slow my breathing, inhale, exhale, slowly now, breathe in, blooowwww out, over and over until I my muscles relax and normal breathing resumes. I am awash in sweat. I look at the clock. 3:07. Sleep will not come tonight. Which means I will be fuzzy at work tomorrow and the cycle will continue. Fabulous. 

So, I bought this shirt. 

I'm not one to use this type of language, but it called to me. It's true, obviously, but more than that, it gave me a glimmer of hope. 

If they made a t-shirt about it, maybe I'm not alone. Maybe someone else can relate. Maybe they are willing to own up to it, too. 

I don't know why it's true of me. I don't know if it's because I have eight kids or because some of them have special needs. I don't know if it's because I haven't slept through the night since January of 2013 or because I have ADD. I suspect it's because I'm human. 

Pride keeps us from admitting it, but I think most people are failing in some way. It's probably not on a colossal scale like me, but not many are living in a colossal family like mine. Worrying about all the ways I'm falling short only further distracts me from what I need to do.  

I'm a Christian. We tend to only present the side of us that has it going on. Maybe we think it will scandalize Jesus if we expose the truth that sometimes life just sucks, we wonder where God is, and we don't have our shit together. 

I hope it doesn't. Because this is me. This is where I am in the journey and Jesus is the one holding me in the middle of the night telling me to breathe in, breathe out, slowly now. Jesus is the one reminding me that I'm probably not enough, but He is, and His grace is sufficient for me. Jesus is the one loving the people through me that He puts in my path, even as I miss the details. 

He's the reason I can do my job with a smile, I can snuggle my little boys as I send them off to school, I can joke with my teens about pop culture, I can conjure up interest in hermit crab habitats and skateboard stunts, I can delight in yet another stuffed animal dressed up like Elsa, and I can laugh with my husband at the end of the day. 

In spite of all that I'm not doing, or doing wrong, Jesus is the only reason I ever get anything right. 

No, I don't have my shit together. I hope to, one day. In the meantime, there is grace for that.

Tuesday, September 9, 2014

Disability and Friendship

"So proud of my daughter," she gushed. "Out of all the kids in her class, she chose to befriend the child with a disability and now even wants to have a play date with her!"

I'm used to hearing that sort of stuff. 

I'm even used to seeing moms beam with pride when they notice their typical kids being nice to my boys with Down syndrome. 

I get it. I used to be the mom of the typical kid thrilled that her daughter was playing with the "special needs boy" in preschool. 

I volunteered in my oldest's preschool class one day and was startled to realize that her classmate, Collin, didn't have hands. Due to some sort of congenital anomaly, he had a few digits on one arm about where his wrist was and a thumb-like appendage at the end of the other wrist. Collin was equally as startled that the parent volunteer that day happened to be an OT and didn't let him off the hook for the cutting task, but modified it, instead. 

My daughter, three-year-old at the time Michaela (Mick), was completely undaunted and included Collin in every game she played. 

I was the mother bursting with pride on the way home and having the enlightened conversation with her daughter:

Me: I'm so proud of you for including Collin in all your play. It can't be easy for him to do everything you can.
Mick: What do you mean?
Me: Well, without hands, it has to be hard for him to do some of the stuff that you can do. So, it's really nice of you to help him and play with him. 
You're probably going to be surprised to hear me say this, but what a terrible message to send to a young child.  

I'm all for encouraging friendships with kids of all abilities, but I'm also very sensitive that we send the right message when we do so. Let me point out what I did wrong. 

Instead of encouraging friendship, I introduced the concept of pity, ie, "it's hard for him to do things." By congratulating her for doing what came naturally (playing with a same-aged peer), I highlighted the difference and gave her superiority in the relationship by telling her he needs help. Collin was no longer an equal and I removed all reciprocity from the friendship. Her focus was then on attending to his perceived needs and her desire to be nice, rather than on his killer kickball skills (her favorite game) and his keen sense of humor. 

I don't know if Mick played with him differently after that. I hope not, but I'd be surprised if she didn't. 

I wish I could apologize to Collin's mom. I get it now.

Prior to our conversation in the car, Mick had no idea that Collin was different. Most little kids don't notice difference like adults and if they do, they seldom care. The rest of our conversation:
Mick: (Baffled) What are you talking about?
Me: (Plunging ahead like the idiot I was) Collin doesn't have any hands. Haven't you ever noticed that?!
Mick: What? No. We just play and stuff. I don't look at his hands. 
 Me: Well, it's important that you keep being nice to him anyway. 
If I could go back fourteen years to my then-self, I would've handled it differently:

Me: Hey, you seemed to play with Collin a lot. What do you like about him?
Mick: He plays kickball really good and he has his own ball! And he's funny.
Me: That's great! Should we have him over to play? 
Mick: Yeah!
Me: Okay. I'll call his mom.
 See how easy it could have been? Encouraging friendship without passing along my own hidden disability prejudices?

I know what it's like to be proud of your kid's choices and character. If you have a child that willingly friends kids of all abilities, well done, parent. You should be proud. There are a lot of kids out there who would bully and malign my boys. More still who wouldn't give them a second glance. 

But almost as much as I want a world in which no one would think to bully them, I want a world in which it wouldn't take a hero to befriend them, either. 

That begins with parents, even those of us who have other kids with disabilities. The initial quote was from a mom who also has a child with Down syndrome. While I get her pride, I hope she kept it cool with her daughter. I hope she stayed away from the traps of pity and superiority and focused on the friend and not the disability. 

It is said that disability is natural. So is friendship. Let's start there.

Saturday, August 23, 2014

In Living Color

When Eon was born five years ago, someone said to me of the special needs journey, "The highs are higher and the lows are lower."

They were right. 

I see it in colors. Fuchsia, puce, burnt orange, aqua, sunflower for the highs, and indigo, charcoal, grey, and black for the lows. 

I wrote of my fears of sending Eon to kindergarten in a recent post. While he's perked up and seemed to be enjoying school more as time went on, I really didn't know for sure how successful he was.

Until his teacher called a week ago. 

She wanted to ask me if I felt ready to send him in underwear starting the following Monday. We'd been working on potty training, but he still needed reminders and had frequent accidents before school started, so we'd been sending him in pull-ups. Mrs. V. assured me he had not had one accident since school started, something we had noticed at home, as well. 

(He wore underwear all this week, including night time, and had zero accidents. I think he's finally got this!)

But she went on to tell me more. "I was just telling our inclusion specialist that I was looking forward to having him in my class this year, but I was concerned with how well he would transition into it. I am so impressed! He has far exceeded my expectations! It's like he's been in my classroom all year." (And yes, they have an inclusion specialist! Who knew?!?)

She went on to give an example. Each morning, the students are expected to hang up their backpacks, take out the blue folder and place it on her desk. Then they fill out their lunch menu and put it in the lunch box, get their seat work and begin working. "Eon does that every morning without reminders." 

Cue the bright colors! I am over the moon! 

We have seen other positive changes in him since school started, too. (Although, there anything better than fully potty trained?!?) The other day, he came into the kitchen, fixed himself a jelly sandwich, and put everything away when he was done. Well okay, Mr. independent. Help yourself! 

I've noticed him playing with and interacting with Bo a lot more when he's home, as well. I think he misses him. I'm not sure Bo agrees that attention from Eon is a positive change, but he'll come around. 

It's been a week since that phone call and I'm still seeing color. He's in the right place. It makes my heart happy. 

Chef Eon helping Mom in the kitchen.

Monday, August 18, 2014

To the Woman Who Gave Birth to My Son...

Dear Bogdan's birthmother,

Five years ago today, your dream of motherhood became a reality. I imagine your trek to the hospital. After ten long years of infertility, the wait was finally over and your precious gift would soon arrive. 

They told me his was a normal delivery. Having delivered seven of my own, I can well imagine your tears of elation and relief as you caressed him and held him to you after that final push. Did you see signs right away? Did they? Were there hushed whispers and knowing looks? Did they whisk your boy away for further observation? Or did you get time with him to bask in the glow of new motherhood before the darkness descended?

At some point, you did find out. Down syndrome. That news I don't have to imagine. I've been there. I know the air was sucked from the room in that moment. 

But the weight of it was heavier for you than it was for me. 

The only choice that you could see was dark and devastating. And, in contrast to the overwhelmingly long but hopeful road that brought you to motherhood, the trip out of it was abrupt and rife with grief.  

And so I can't help but think about you on this day, and wonder if I'm loving him well enough for you. 

As he sits next to me when I write this and pinches me hard, I try to react with grace and remind myself that he's overtired from a full day of school and therapy. I tickle him and he smirks and climbs off the couch. 

Can I be honest? 

He wasn't what I was expecting, either. 

I was expecting Down syndrome. I wanted Down syndrome. I would've welcomed the usual medical conditions that often accompany it. We checked boxes and boxes on the adoption papers of all the things we felt we could handle. So many things we were willing to accept along with a Down syndrome diagnosis.

Autism was left unchecked. 

Autism was something of which I knew so little about...and cared to know even less. It scared the crap out of me and I knew there was no way I could handle that. 

I was absolutely right. 

The road to where we are has been rocky, full of potholes and unexpected turns. We didn't know what we were dealing with. I watched other children come home from worse situations and make amazing progress and our boy seemed stuck with no efforts to sign, to speak, to wave bye-bye, even. A year in and he was still drinking from a bottle. It took months of therapy to teach him to look at us and interact beyond a suspicious stare. 

When behaviors ramped up around the one-year-home mark, I was beside myself with worry and fear, but also beginning to finally accept that God, in His infinite wisdom (and sense of humor) had checked the autism box for us.  

There were times I worried I'd lose myself in learning to love our boy. While he has a smile that can light up a room, his pinches leave bruises, his bites leave teeth marks, and his incredible aim has left bumps on more than a few noggins. 

I confess that I don't always react with grace. Frustration and fear have too often colored my response. I sometimes wonder what you would do if you were in my stead. Because I've no doubt that you have wished for a do-over at least a thousand times. Would you do this better than me? I fear you would. As with all my kids, I fail him much. 

He's learning so much! I wish you could see him now. 

As I was going to put food on the table for dinner, I felt him brush past me as he raced to his seat, pulled it out, and climbed up in it, always ready for a meal. 

He's no longer content to sit in the background and play with shoes, but wants to join in, often painfully scratching my feet in his version of tickling, which he finds hilarious. I can't help but laugh, too, because I'm so overjoyed that he wants to be apart of us and is trying so hard to play appropriately! 

Every once in awhile, for reasons I will never know, he gifts me with the most fabulous spontaneous neck hug. And it sends me to the moon. 

You see, it was tough going for awhile. But, I love this boy of ours. I accept him fully now, no matter a diagnosis, no matter what's to come. I am blessed and honored to be his mom. 

Thank you for nurturing him when he was in your womb. Thank you for birthing him well. I hope somehow you can see across the miles that he's good and that he's loved. I hope it eases the hard of this day for you. 

And, thankfully, I did lose myself in learning to love him. Pretty sure that's what God had in mind all along. 

Bo's mom

Saturday, August 9, 2014

The Dawn Breaks

What's the expression? It's always darkest before the dawn? I can certainly relate to that saying. 

My posts have been dark as of late, full of worry tinged with despair, colored with a lot of frustration. I was honest with what was going on with Bo, in our home, and in my heart. It was a difficult time for all of us, much of it based on the reality of daily behavior we felt we couldn't control, but some of the difficulty was based on the fear that we would never learn to control it, to control him. 

Although Bo is our eighth child, in many ways we feel very much like first time parents. He has issues we've never before encountered, coupled with the fact that we are still, eighteen months in, getting to know this little boy whose first three and a half years of life are virtually a mystery to us. 

Like a first time parent, my instinct is to react to every negative behavior like this is how it's always going to be. When my current bag of parenting tricks fails to produce results, I'm overcome with despair that we don't know what we're doing. When, in reality, he just may need more time to learn consequences to behavior and we just may need more time to learn antecedents to it. 

Together, we're figuring it out. 

He did get an autism evaluation (although it was a terrible excuse for one, in my opinion) from an autism center. In retrospect, seeking an evaluation from a place with little/no experience in Down syndrome was a mistake and he did not receive a diagnosis of ASD. Rather, he was tagged with the cop-out diagnosis of "global delays." Awesome.  

Immediately following that dismal experience, we had the privilege of attending the National Down Syndrome Congress Convention here in Indianapolis. We took most of the workshops on the ASD tract. I can tell you that every video and description that was shared fit Bo like a glove. We came away absolutely assured that we are not crazy, that we are not alone, and that our son indeed has a co-existing diagnosis of Ds-ASD. 

And we can do this. 

Before we even had a chance to implement anything we'd learned, Bo was already making progress. While throwing, spitting, pinching, and biting are still in his repertoire, they are not constant or even anywhere near it, anymore. We are less likely to be dodging flying food during meal times, too. 

The biggest change I have noticed is on the playground. A few weeks ago, I took these pictures of him experiencing the playground in typical Bo fashion. I missed photographing the end of our time at the park when he was pouring mulch over a lady's foot and trying to remove her shoe. I also neglected to get a picture of him sampling the mulch for taste and texture. Ew. 
He could lay in the bubble for HOURS!

He rolls these over and over and OVER.
As soon as KJ came to join him, he scooted out of the way. Soon after, he turned away completely.

Last week, we went to the park and I didn't even have time to take pictures because I was too busy keeping up with he appropriately explored every aspect of it. He climbed the stairs and went down the tunnel slide at least a dozen times. He climbed through tunnels, climbed a ladder (with close supervision), and was aware of other children waiting behind him, once even letting one pass without cuing. When other kids were around, he didn't shut down, but continued playing. He retreated to the mulch only once, but was easily redirected to the sand box. (Where he still sampled it and I tried really hard not to think about it. Ew.)

It was a great day and a HUGE gain for our little guy! We are looking forward to seeing what he'll show us next. 

Monday, August 4, 2014

First Day of Kindergarten PANIC!

Tomorrow, I put a kindergartner on a bus for the first time. While he is my sixth child, he is my first ever to attend public school. All the rest are homeschooled. 

Honestly? I am terrified. 

Not because I am afraid of public school or secular education or socialization or any other such thing home educators are accused of hiding from. But simply because I have no idea if this is the right course of action for my son with special needs. 

Eon will be fully-included in a general education classroom with only an extra paraprofessional in the class during math and reading instruction. He will receive pull-out instruction in the resource room thirty minutes per day for extra instruction as well as weekly therapies of various lengths. 

It's what we wanted. It's what his preschool team recommended. According to the research, it's the best-case scenario. 

But for our family, for our life, for our kid, is it the best option?

I honestly have no idea. 

Will he miss too much family time? Will he feel left out? Are we creating too much distance between him and the neuro-typical kids, therefore highlighting the difference in Down syndrome?

Will his teacher get him? Will she embrace having him in her class as she appears to be? Will she support him, yet maintain high expectations, or will she coddle him and treat him like the class mascot? Will he learn academics or just pick up negative behaviors?

Will he be safe on the bus? Will bigger kids pick on him? Will he stay in his seat? Will they lose him in transition from bus<->class as they keep promising me they will not do?

What about lunch? How does a mostly nonverbal kid indicate what he wants for lunch in the cafeteria everyday? How many people know the ASL sign for "french fries"? He will have a guaranteed meltdown if french fries are on the menu, but not on his tray. Should I have shown his teacher the sign at open house?!? Oh, crap! I should have shown her the sign and explained! UGH.

And then there's this:
You don't even want to know how long it took me to do this. Seriously. It's embarrassing. If I had to do one for each of my children, I would run away.

It took me the entire day to get this one child ready for tomorrow's school day. And then, at the end of it, I failed to do the one thing I've been promising we'd do since his teacher gave it to us at open house. 
When I realized I forgot, Eon had been in bed for about a half hour. Shawn reminded me that he's a great sleeper and would go back to sleep readily if I woke him for this sweet ritual. 
I ran upstairs and approached his bed. "Eon, Eeeeeon....Dude, wake up. Eon? Siiiimeeeeeon." Shaking his leg...his arm...his torso. Lightly at first, then more vigorously. 
Nothing. I moved on to patting. "Eon! Wake up!" Finally, I pulled him to a sitting position and he opened one eye. I showed him the story and quickly reminded him that his teacher told us to read it. "No! Sleeeeep," he mumbled before collapsing back on the pillow. Undaunted, I began to read:
Once I hit the line about being hard to fall asleep, I looked at my sleeping boy and laughed as I walked out of his room. 

I think Mom needs this confetti way more than he does!

Tuesday, July 8, 2014

Trapped in Church: An Update of Sorts

Three weeks ago, I wrote a blog post documenting our experience visiting a church for the first time and feeling trapped in the middle of a row, wrestling Bo to keep the other attendees safe, with hairstyles intact. 

Since that time, I've written two other posts about special needs and church in general, and started the longest discussion ever on my Facebook wall between those with special needs in the church and those without. 

That conversation was exhausting to me and felt very much like a hamster wheel at times with repetitive questions of program how-tos, complaints of lack of volunteers, and admonishments to have more grace. One thing I tried to emphasize is that it's not about programming. Again, as my friend Ellen Stumbo says, "Ultimately, it's not about the ministry; it is about the willingness and the hearts of acceptance."

The next week, we went back to the new church only this time, I sent Shawn and Ellie to drop off the kids while I raced to the auditorium to secure seats near the back. I had to ask someone to move to the inside but, thankfully, it was someone I knew and they happily complied. We didn't end up needing to take Bo out, but we breathed much easier knowing that we could have. 

This week, Bo and I arrived early and walked up to the back row to find it empty with these signs on the chairs: 

At first, I wondered if maybe they were expecting a special group or something. I took one of the signs to an usher and asked him if just anyone with special needs could sit there. He looked amused as he answered affirmatively. Still not believing it, I asked, "Can we sit here with our son? He has Down syndrome and autism." He looked at Bo, smiled and said, "If you plan to keep him with you during the service, I think he fits the bill." I'm sure I said something inane as I thanked him profusely. 

Still a bit stunned, I moved the sign over and put our stuff down. When Shawn came in I showed him the sign and he was as blown away as I was. I admit to bawling through most of the worship service, tears streaming, mascara running, snot stringing. It was lovely. I felt like Sally Field in her famous Oscar speech, "You like me. You really like me!"

This is what acceptance feels like, I thought.

No programs or volunteers needed. Just some inexpensive laminated signs that let one family know they are welcome here and they matter. 

"Reserved: Special Needs Seating said to me: "No need to climb over people. We'll reserve you a spot for easy access in and out with your child. If caring for your challenging child has you running behind, don't stress! There will always be a place for you." I couldn't help but weep with gratitude.    

I had no idea why the signs seemed to suddenly appear. I didn't know if someone read my post and responded to the need or if it wasn't about us at all. There are two services at that church. I'm sure there are others with special needs among them. 

As we investigated, however, our friends later told us, "Oh, those signs have been there as long as we've been attending, at least a year." 


What? Why had we not noticed them before? How come that row had been filled in the previous weeks, excluding us from sitting there? 

Confusion replaced my elation. 

And then, slowly, reality dawned. We hadn't seen them because the signs had been ignored. People are parking in the handicapped spots. While the church leadership had attempted to welcome families like ours with those signs, church members decided we didn't matter. In fact, I'd watched on Sunday as several couples parked themselves in that row, picked up the signs and turned them over or put them in the pocket of the seat in front of them. At the time, I thought they just didn't understand what the signs were for because it was a new thing. But this information re-framed it for me. 

It wasn't that they didn't understand; it's that they didn't care.  

And, for the second time that day, I cried. 

Friday, June 27, 2014

Special Needs And The Church, Revisited

Yesterday, I wrote a post on what the church can do to help those families dealing with special needs. It was a good post. I made some valid points.

Today, I want to disagree with myself. 

I wrote:
We won't always be in crisis. Personally speaking, my family has a lot to offer. We have gifts and passions that we would love to share.
I wish I hadn't included that. The world is constantly telling us that our children are a burden. I attempted to offset that perceived burden for the local church by promising a return on its investment. I made it sound as if we are worthy of love because of what we can bring to the table.  

How pitiful that I felt required to do so. 

The truth is, some families may very well remain in crisis. Their gift to the church could simply be their neediness and ability to receive graciously. We may never be able to give back in the traditional sense. We may never have the time to volunteer for VBS because of the demands of caring for our children. We may never have the resources to add to the missions fund because of outstanding medical bills. We may not be able to be a regular attendee because of unexpected and frequent illnesses. 

We, like our children, are worthy of love and acceptance from the church, not because of what we can do for it, but simply because we are.

I'm reminded of the lyrics of an ancient Margaret Becker song, "It's never for nothing, when you love with no return."

Church, we need to love these people because that's just who we are. It's what we do. We love people. Not just the pretty ones, not just the happy ones, not just the easy ones. We love people. It's the second commandment and we need to do it better.

Special needs parents spend all our time trying to prove our kids worthy in every other setting...worthy of a quality education to the school system, worthy of therapies or procedures to insurance companies, worthy of story time to the local have to do the same in the one place that claims all life has value, is really too much to take. 

One of the saddest realizations for me when it comes to the American Evangelical Church is this:

If I waddled toward an abortion clinic at twenty-two weeks pregnant, fetus prenatally diagnosed with Down syndrome, the church would be the loudest in convincing me that this baby is worthy of life, has value, and that I need to continue to term. They would preach that he was created in the image of God, that he's being fearfully and wonderfully made, and that God has a plan for his life, and rightfully so. 

But say five years later, my son was given an additional diagnosis of autism. He now has behaviors which include spitting, hitting, and biting. He throws things. He uses diapers and drinks thickened liquids from a bottle. I am exhausted, worried, and stressed all of the time. I decide I need to get back in church. I need spiritual help. I need support. I want my son to know about God. He needs other people pouring into his life. I can't do this alone, anymore.

Only this time, those same people would tell me, "Oh no, he can't come here. We're not equipped to deal with special needs.

It's this type of hypocrisy that is causing people to leave the church in droves. 

It makes me incredibly sad. 

Ministering to families with special needs is not about programming. It's about walking out what we say we believe. 

Thursday, June 26, 2014

What Is The Church To Do?

A blogger friend of mine posted a letter she received from her church informing her of the new policy in the children's ministry department and how it will affect her family. Her daughter with special needs will now be required to attend with a 1:1 parent or other adult caregiver that the family provides. My friend is reeling. 

I felt sick when I read it and my heart was broken for her and her daughter, but also for the church that is so missing the opportunity to be the hands and feet of Jesus. 

I, and so many others, shared the post on Facebook and there has been a firestorm of comments from the special needs community sharing my disgust and dismay.

But it was this comment from a friend with neuro-typical children that prompted this post:
Tara, what would you suggest churches do? How should they handle special needs children, especially knowing that volunteers are hard to come by in any form, much less those that are able to handle special needs? I think asking a parent to come to class with their child is acceptable, but clearly others don't. What are the alternatives?
Excellent questions! I want to address all of them.

But first, I want to give a picture of what life can look like when it involves special needs. 

Families who have a child with special needs are often in crisis. Medical issues can be chronic and exhausting, but often they come on suddenly requiring emergency hospitalizations or testing and sending the household into a tailspin. Even without medical fragility, kids with special needs can have different behavioral issues that leave parents chronically stressed and sometimes with little hope. 

I wrote about the ramping up of behaviors of our little guy in a recent post here and the effects on my psyche and our family. I left out a lot of detail and failed to describe adequately the complete drain on my coping skills, our resources, and the overall toll it took on our family. We are on the right track now and seeking better supports which have infused us with new hope, but I would be a fool to think that we will be crisis-free in the future. 

Parents of kids with special needs are also lacking in restful sleep. Some kids have sleep disorders and require very little sleep (ours does), some need middle of the night meds or feedings, and sometimes the intense worry and anxiety of protecting and caring for our children can keep us awake. 

My point is, often times, we parents are shredded. We are at the end of our proverbial ropes and hanging on by a thread. If we make it out the door to church at all, it is a major coup. 

A typical Sunday for me recently included cleaning up my son who had removed his diaper, pooped on my carpet, and then painted himself from head to toe with the resulting mess, which of course, prompted a necessary change of clothes for me, as well. If I knew I then had to care for him when I got to church, why would I even bother leaving the house? The truth is, I don't. 

By writing that letter, this church is not really asking the family to provide an aide for their daughter, they are asking them to stay home.  

Which brings me to my next point, written so much better by my fellow parents in their comments about this on Facebook:
Dear church -- please serve and love your families who have children with special needs. They need you -- and really, you need them. There is so much to be gained and learned from those relationships. If you have a huge budget for missions, etc. yet are basically turning away families in your own community, what kind of message does that send? A mission field in your own back yard...  - Lisa Mai Olsen
It gets very interesting when you think about the church being very vocally pro-life --- then shouldn't they be the first ones to embrace and include everyone? - Lisa Mai Olsen
But really, the disappointment for me comes in the fact that the Church is supposed to be the hands feet and heart of Jesus. I have adjusted to the disappointment that comes with the public school system....but God's people are supposed to be different. - Yvette Kelder Bilello
Soo... parents coming to church must be prepared to watch their own child? Why not just send out a note "kindly" requesting families to just stay home and hide their child(ren) from view lest they get in the way. What happened to "Suffer the little children... forbid them not"? Hmmm... - Krista Dunn LaRocque 
This is why I am so passionate about the church embracing disability. This is why it is so important that we teach that all of us, every single one of us, is an important part of the body of Christ. Wonder why special needs families don't attend church? ALL kids are worth investing in, everyone has something to contribute. This breaks my heart! - Ellen Stumbo
Valid points, all of them. We can do better. We should do better. 

What has worked in many churches is the "Buddy Program" in which children with special needs are assigned a person to accompany them to class. That person is specially trained on that child's needs and gets to know them. They can support that child however they need to get the most out of the class. Some churches even have an "individualized spiritual plan" for each child to ensure their spiritual needs are met. 

Some churches have sensory rooms in which children who are experiencing sensory overload can be calmed. Ellen Stumbo has a great post about how her little church is building one, and whyhere

Sometimes just having a room where a parent can take a child and still hear or view the sermon can be huge

Now, as for the question of volunteers. I get it. I am a pastor's daughter. I know that finding church workers is so difficult, especially in small to mid-size churches. 

But I also know that when the heart of a church is worship, there is usually no shortage of willing musicians. When it is missions, the missions budget can surpass that of a much larger church. When a church emphasizes meeting the needs of the poor, the food pantry flourishes. 

We have got to start making these families a priority. 

As my friend, Ellen, so eloquently puts it, "Ultimately, it's not about the ministry; it is about the willingness and the hearts of acceptance." We know when a church is trying. We don't need perfection. We just want to be welcomed and for you to be willing to help us find a way to belong. 

We won't always be in crisis. Personally speaking, my family has a lot to offer. We have gifts and passions that we would love to share. Bo has a lot to offer in his unique package. We have grown so much from knowing and loving this little boy. We just want a church to see beyond the behavior to the gift. We want him to be wanted and welcomed. 

A friend of a friend shared this story in response to the letter. I cried when I read it. I would be undone with gratitude if someone responded to and accepted my Bo this way: 

This is heartbreaking. Our new piano teacher is part of a church with a passion for providing ministry to families with kids with special needs. We started going there and when I said I felt bad that Peter had spit on and slapped his assigned helper in kid's church, she responded that Jesus was spit on and far worse, so they guessed it would be just fine. THAT is what Jesus is looking for in His church body. NOT what is represented in this letter. - Jennifer Loque 

(I wrote a follow-up post to this one, in which I disagreed with something I said here and further expounded on some other ideas. Check it out.)