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.