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 to class. 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.)