How We Saved Our Wet Ipad After it Took a Bath

I see you, desperate ipad owner, Googling my first wet ipad post. Hopefully, you have come to the right place. I have also been a desperate owner of a wet ipad.

Two different wet ipads, actually.

I wrote about our first wet ipad experience a year ago, and I can see that my first post is still Googled every week. Probably by a mom or dad freaking out, holding a sopping wet expensive mess swaddled in a towel while yelling at someone and googling "Wet ipad" at the same time.

Such a shame, because that post was probably not very helpful.  I am sorry that my first experience and post was such a disappointment. Putting that wet ipad in the bag of rice did NOT work for us. Alas, that ipad never came back to life.

This wet ipad post might actually help you. There is hope: our second wet ipad came back to life! Now working as perfectly as it was before it took a short swim in the tub. No side effects at all; it has completely gone back to perfection, much to our surprise. I will tell you how we saved it - quickly, because you are probably stressing out and skimming this post anyway.

Our ipad was plunged into the FULL bathtub by our daughter who has special needs. Yep, pushed down under water. I do not know for how long...and does it really matter? Because the ipad was COMPLETELY UNDER WATER. Our daughter has a fascination with water, and don't ask how it even ended up in the tub in the first place. All that matters is that it was completely submerged.

We put it on the heater so the heat could go up into this hole.
Good idea? Probably not, I guess it could have melted something.
But hey, it worked!

My husband propped the toweled-off ipad up on the heater. We left it there for a day. Then I picked it up and tried to turn it off. We could see water underneath the screen. No, not the decorative little water droplets that are just there to tease you - and can I just say, that joke is just plain mean, Apple. No, there was a huge, obvious puddle underneath the glass in the middle of the screen. It was tricky to turn it off and took a few tries. Once it was off, I left it alone for two more days. Propped on the heater so that the heat could go up into the charging hole.

Please ignore the dust and focus on the handle
where we propped the ipad.

I will show you a picture so you can see that we propped it on the little handle that adjusts the angle of the vent. This allowed the ipad to be sitting right in the middle of the grate, or whatever you call that thing. This also happened around the time of the "polar vortex," so the heater was working hard.

The actual wet ipad. NOT a dramatization. 

After (im)patiently waiting, I turned it on and held my breath. It worked! The first few days, there were two little teeny streaks of water still under the screen, but the apps all functioned fine. A few days later, the streaks were gone. I probably should have left it on the heater for one more day.

Yay for dry, January heaters that make you wake up desperately wanting a drink of water. I think our last ipad got wet in the middle of summertime, and rice seemed like the only best option at the time. This time, when I blurted, "Quick put it in the bag of rice!" (because parents like us happen to have a gallon size zip-lock bag full of rice stored on a shelf for wet device moments such as these - true story) my husband said, "No, that didn't work last time. Let's try something else." Good idea, honey. It worked.

(I just want to add that if his idea had been a bad idea, as in... if the side of the ipad completely melted and oozed down into the heater vent, I would have been mad at him for the next ten years. But fortunately for all of us, that did not happen.)

Our ipad is back to fully functioning, the water is all dried up and gone, and we have all done multiple happy dances about it.

Best of luck to you and your ipad. I feel like this is where I should insert some kind of disclaimer or legal mumbo jumbo: this advice is unofficial, please don't sue me or send me mean comments. This might even be reeeeally terrible advice. You should not even really listen to me, because I am the one whose child managed to get not one, but two borrowed ipads from the school district completely wet. All I know is that it worked this time, and the huge bag of rice did not.

However, if you have a victorious wet ipad story to tell, please share in the comments. Other desperate wet ipad owners will thank you.

Good luck!

The bag of rice that is still floating around. Oh, I have
two message buttons in there that...um...our daughter also
threw into the bathtub. Have not checked yet to
see if they still work. Guess I should have balanced them
on the heater.

Gift Giving, Toys and Autism, and Putting Elmo to Rest.

It's January and I am so glad. Not just because it is a new year, but because December is over. It was a tough month.

We were all sick on Christmas. I will leave it at that.

There were great things about the December of 2013. Lilli got to go to school and be in a class for Polar Express Day. She went in pajamas with her homebound teacher, Leslie, by her side. She went caroling with her new class that she visits twice a week - other mentally high-functioning fourth graders who have autism. She seemed upset at first. I wondered if it was because she is non-verbal and cannot sing. I took a few pictures and went over and whispered in her ear, "You don't have to sing, Lilli! Just smile! You're just spreading happiness at Christmastime." Then I left to go to Josh's classroom, and whispered a quick prayer that she would just be happy. Leslie told me she DID have a great time and was happy after I left, hugging with classmates and laughing. Lilli has some new friends at this school that really adore her. I was so thankful. (I just didn't get a picture of the happy moments.)

Caroling in the main office. Lilli  is in the back, leaning against her homebound teacher, Ms. Leslie. Not happy yet. But happiness came later. Maybe it was because her embarrassing mom was there taking pictures of her, who knows.

Gift Giving Challenges

As Christmas crept closer, I felt myself begin to slide down into my annual mental pit of feeling upset and frustrated about Christmas shopping for Lilli. This is the part of Christmas tradition that sends me into mixture of excitement and dread.

I love, love to give thoughtful gifts. I think it might be my "love language." I keep a "gift idea" notebook and write down ideas for people all year long. If time allows, I love to make gifts for people. If money were no obstacle, I would haapily act like Santa Claus, all year long.

For the last five years since we made this life change, moved and Jasen went back to school, I started the habit of Christmas shopping at yard sales for my kids during the summer. For obvious reasons- living on student loans with three children- we needed to keep the gift budget extremely small, and I discovered that there are lots of strangers who sell perfectly awesome toys, cast off from their (very possibly spoiled rotten) children, in their garage sales for practically nothing. Maybe these people have money to throw away. Maybe they are very bad at budgeting. Maybe they forgot that they spent $20 each on those four Disney princess dolls in perfect condition, and plopped them on a card table masking-taped together with a $1 price sticker just to get rid of them. Or maybe they just wanted to bless someone who could not afford to buy them new. Thank you, perfect stranger who gave away like-new Disney dolls for $1, Chloe loved them.

My kids had great Christmases and birthdays while Jasen was in chiropractic school, partly because of this planning, partly because of the awesome year-round yard sales here in the south, and mostly because this weird thing happens with me. I just think of something we need or I would like to give to someone, and I find it a week later at a yard sale for a quarter. I sometimes specifically pray to find one thing, and there it is in someone's garage, like-new for a buck. God knows what I need. He knows what I want. He is a crazy awesome Giver. People say "God will provide" a lot, but not everyone knows what that really means. I'm telling you, this one way God provides for us. Ask anyone who knows us well, and look around our house. It's pretty amazing.

Five presents each. One from Santa, one from Jesus, three from Mom and Dad. That's how we do it here. If Santa can give presents, Jesus can too, goodness.

Those lean school years taught me how to get creative and find ways to give great gifts on a shoestring budget. I learned much about money and spending. I learned you do not have to spend gobs of money in a panic in late December on expensive new plastic toys to make a child extremely happy on Christmas morning. You do not have to wait until the weather turns cold and then rack up hundreds on your credit card for a few moments of screaming on December 25th, only to faint when you get the bill in January. It's a weird thing we Americans do every year. It does not make much sense.

Josh and Chloe are easy. This fall I went to a neighborhood yard sale and found Chloe an awesome disco ball light and Josh a huge box of Teenage Mutant Ninja Turtles and superhero action figures for a few bucks. All were things they wanted and asked for. Thanks, God. (We put "from Jesus" on the gift tags. Cause they were.) Gift ideas, and the process of finding them is a thrill - when it's for Chloe or Josh.

We've got almost every super hero now. Even Aquaman and Wolverine are in there somewhere new in packaging. Five bucks for the box, thank you, kind yard sale mom who just wanted to get rid of her teenage son's junk. Chloe wanted Uno Moo a few months ago. $1. 

Lilli, however, is not so easy.

Searching for a gift for Lilli dredges up a mixture of unwanted emotions from deep within me. Inside, Lilli is almost ten. Outside, Lilli is much, much younger. The ages collide for her in many situations. One of them is toys. When I begin to plan Christmas for Lilli each year, I feel a small sense of hopefulness and the challenge of finding a fabulous gift - mixed with sadness and frustration. I have no idea what to get her.

The longer I dwell on finding a good toy to give to Lilli, my oldest child, the worse the feeling gets. I hate it.

I know it must sound so completely shallow. It's just that Christmas shopping reminds me of what Lilli cannot do. Playing with toys is something that has not come easy to Lilli. For Lilli, even learning how to play has been very hard work.

Learning to play is part of her therapy.

For those who are confused by this statement, I will share an experience I had when Lilli was much younger.

Autism and the Hard Work of Playing

When Lilli was four, she received the autism diagnosis. The doctor strongly recommended that she receive at least 30 hours of ABA (Applied Behavior Analysis) therapy a week. Yes, 30 hours a week. We talked to the school district where we were at that time, and they were all, "Huh? What's ABA? We don't do that here, no." (It costs a district money, you see. On a side-note, when we moved here we discovered that not every district is so stingy.)

So I went to a special school for children with autism and paid $500 to take a three-day seminar on ABA therapy. I was the only parent there. I sat with a roomful of special education teachers (from other districts who knew what ABA was) and therapists. I was like that annoying, nerdy non-traditional student who asks a million questions, takes notes and pays close attention to every power point slide. Everyone else seemed to count down the minutes to the snack break and tried not to fall asleep, because they were only there to get credit points toward their certifications.

I was riveted by every video clip example and page of notes. I was hooked. The idea of ABA gave me hope for Lilli.

Several times, we were invited into the special autism school to observe students receiving ABA therapy. They placed me outside a room of a four year old boy, bless them. They did that on purpose. He was an exact male version of my Lilli. He could not talk, and he did not know how to play with toys. He was not potty trained. He cried a lot. He did not know what to do with himself. He was so unhappy. I was amazed to see that my child was not the only one in the world like this. In fact, lots of children with autism are like this. I won't say most, because I really don't know. But maybe.

A therapist and little boy were in this room that was about the size of a large walk-in closet. There was no door. I sat on a child-size plastic chair in the hallway outside the doorway. I balanced my pen and notebook on my lap, and observed. I took it all in, and thought of Lilli the entire time. It was nothing I had ever seen or known about. The therapist, a laid-back 20-something guy wearing jeans and an untucked button-down shirt, was lovingly and patiently trying to teach this boy to play. He took a moment and explained to me that every time the boy even just made an effort to touch a part of a toy, he got a tiny treat. I think it was a tiny piece of a cracker or something.

There was a toy vacuum on the floor. My three year old Josh had one like it last year and he ran it all over the house and pushed all the buttons. This boy just looked at it blankly for a second and then stared at the wall. I watched with immense interest as the therapist showed the boy over and over...and over...how to touch one button on the vacuum to make music play. Then he would encourage the boy to do it.

This was hard work for the little guy. So hard. He obviously did not know how to touch the toy's button to make it do something. No matter how many dozens of times the therapist took his little hand and showed him, the boy would not do it on his own.

It wasn't the cool, fun, vacuum's fault. The therapist explained that this was a new toy this week. He was teaching the little guy how to play with it, and I was fascinated with the whole process.

He tried with other toys too. There were cars, action figures, boxes of awesome toys any typical four year old boy would love to touch, play with, imagine with, zoom around the room while making little boy car sounds. There were a few toys that the little boy did pay attention to. Those were the ones he had already "learned" to play with. He took a small truck and ran it back and forth on the table for about three seconds. That, I was told, was progress. They had worked for a long time to get him to do that. Many hours of teaching, and bags of snacks.

If anyone reading this is thinking, "Why such torture? Who cares if he doesn't want to play with those toys, let the poor kid do what he wants to do." I struggle to covey to you: that's just it. He did not want to DO anything. He sat and stared at the wall and cried. A child's whole job - whole life - is to play.

This little boy did not know how to play. And neither did my Lilli. It had to be taught.

This is autism.

Lilli and Elmo: True Love

For a long time, Lilli did not know how to make toys work. I think it might be called a processing problem. She could not make that connection in her brain that she had to push a button to get a toy to do something. It took a very long time to teach her. Weeks. Months. When she was one year old, she played. She reached out and touched and smiled at toys. She had words - real words, like ma-ma, da-da, dog, we remember she even said "poop." I remember even getting her to say the word "donkey." She began to regress around 15 months. She stopped playing with toys. It was like she forgot how. She sat in a corner touching sunspots on the carpet for hours and looking with fascination at her own fingers, while piles of fun toys sat nearby. She cried a lot. She watched movies.

That's an autism thing too - the sunspots and fingers. She would run a piece of ribbon through her hands repetively for an hour.

We were desperate to get her back. To have her play with toys, talk, be happy. 

The first time I remember her really "getting" how to make a toy work and playing by herself was when she was about four years old - shortly after we began ABA therapy with her.

My sister got her "Dress Me Elmo." If you squeeze his hand, he sings this little Elmo song about how "Get-ting dressed, there's nothing to it, now that we've - learned - how to DO it!" And I could sing the next part to you by heart, about zipping and buttoning...Anyway, Lilli was ga-ga over that little singing Elmo. But she could not get him to sing by herself. I would press his hand for her, and she would crawl off so super happy for about ten seconds. Then he would stop. And she would cry, and bring him back to me.

Fifty times in a row. All day long. The mood swing was ridiculous. Singing: HAPPY! Silence: SUPER MAD! Happy! Super mad! Every thirty seconds. She did not understand that she had to squeeze Elmo's hand, no matter how many times I showed her. This could be due to brain damage, or autism, or both, I don't know. It was very frustrating. Playing with Elmo was an extreme love-hate experience.

We hired ABA therapists who showed me how to take her hand in mine and make her hand press a toy's button, and not do it for her. Sometimes she was rewarded by a treat. Sometimes the music or action from the toy itself was enough of a reward to motivate her to learn. I will never forget that it took days and days of listening to Elmo sing that song and Lilli sob and bring it to me over and over. For hours straight.

I think this was teaching her muscle memory by taking her hand and making her hand do it.

And she finally learned.

She learned to press his hand all by herself.

What a glorious moment that was after days of Elmo torture, when she realized she could do it herself. To this day, five years later whenever I hear that Elmo sing about tying his shoes, I remember that he was the first toy she ever learned to play with by herself after her autism diagnosis. Well, she doesn't do the "dress me" part. She can't zip up his coat or velcro his little shoe. We never worked to teach her that part.

After Dress Me Elmo, I went bonkers trying to find toys that Lilli could play with on her own. Pizza Elmo was another big hit. We would do hand-over-hand and teach her what to press, and after a few days or weeks, she would be able to do it herself. It was a whole new world! We had the most annoying toys ever! The worst one was this big, super loud whirring thing with big buttons that had parts that spun around while music played under all that loud racket. But I was just so happy that she could finally entertain herself. As long as there was a big button somewhere that she could press, she could play with it.

Loudest, most annoying toddler toy ever, with nice big buttons and fun spinning action. Even the therapists hated it. I think we had a party when we got rid of it.

If we took a few days or weeks to teach her over and over where the button was, she could eventually get it. And then I would have a few blessed minutes of "peace" to do laundry or something else while Lilli played with a toy by herself - at the age of five.

As the years went on, we went through dozens of toys with simple buttons. And then we realized that she had more going on in her mind than we ever realized. I started to get excited about technology, thinking that she could use a Kindle to read books, or play new ipad apps.

Soon I realized that even those things would take a very long time for her to learn. It's just how her brain works.

Christmas Toy Shopping for Lilli

On Christmas morning, I want my children to open one fun gift that they love - just one special one that they shriek about and play with all day. One that I spent time thinking about and finding. One that I know they will be excited about when they go to school after break and everyone asks them what they got for Christmas.

I love to find the perfect gift for someone. And each year I have a tough time figuring out what NOT to get for Josh and Chloe. I narrow it down to a few gifts each.

But then there's Lilli.

I will see a toy I would love for Lilli to have. And then I think about it and I usually realize: it's too babyish. Or it's too complicated - she won't be able to play with it because it requires fine motor skills that she does not have. She won't be able to use it by herself, because she won't understand what to do with it. We will have to show her over and over how to play with it, and it will frustrate her.

Maybe it was wrong of me, but as I planned my gift lists, I just did not want to buy her another Elmo. I wanted her to move on. I want to find something that is pretty "cool" for an almost ten year old to play with, that she is able to do on her own. Had she moved on? I was not sure.

Maybe I'm the one that needs the therapy, not Lilli.

What does a ten year old do to entertain himself or herself? Besides watch movies or use a device?

I really was stumped.

I posted a question to the parents of children with cerebral palsy group online. I asked them what their older children did to entertain themselves, other than using an electronic device or watching a movie. All the parents agreed that this is such a tough issue that they all struggle with. They detailed how they are always either entertaining their children, or their child is using a touchscreen device. Because fine motor and gross motor skills make most activities very difficult for most kids who have CP. And self entertainment is difficult for many children with autism. Unless someone is sitting down helping Lilli, she cannot entertain herself unless she has the ipad or a movie, or a simple toy with one button. And kids do evetually outgrow Elmo. Well, maybe.

Was she finally over Elmo?

Not Down with "Elmo Up Up Up"

Right before Christmas, I was still looking for something for Lilli. I went into a thrift shop, and there was an Elmo on the shelf. He even had batteries. He sang a song about how Elmo loves to be picked "Up up up." I held him and stood there for a long time, listening to him and thinking. I felt a little excited that I'd just found a cheap Elmo just in time for Christmas. But then I felt a little sad, and I hesitated. I wasn't going to give Lilli another Elmo this year. It reminds me that her progress is so painstakingly slow. I didn't want her to keep playing with Elmos. I wanted her to move on, but move on to what...I did not know.

After a long few moments of listening to him sing, I gave in and bought him.

I hoped that maybe she would play with him and be excited about him, since I could not think of any other toy to get her.

She was not excited about him at all.

She got some cool clothes. She got new movies from Nannie and Pop pop. We pulled everything out of her stocking for her, and she didn't know what to do with any of it.

She got a "question-a-day" diary. My thought was that we can put the choices in her communication device and she can choose the answers. Maybe if she starts typing better this year, she can type things and I can print them out and put them in the diary. It's a long term, dreamy-hopeful goal.

She opened the Elmo, and didn't care.

Jasen said, "She's over Elmo. She's not into him anymore."

She played with her ipad and watched youtube movies on Christmas morning. Meanwhile, Chloe and Josh each played with their new favorite toys.

Lilli didn't play with her Elmo. And you know what? It's a good thing. She's moved on. Where we go from here, I do not know. But she will be ten at the end of this month. Her birthday gifts will be the next challenge for me. But the fact that she can make choices, and she doesn't care about new Elmo toys anymore....that is a good thing. It's progress.

Almost one per year. Except for the years when she got two. If there ever is a game show where contestants win by singing all the words to Elmo songs, I would win.  

Progress is so slow, it is hard for me to see it sometimes. I need reminders that we are on the right track, that I am doing the right things, that I should never give up.

I don't know where we go from here, but we are headed somewhere new.

Farewell, trusty Elmo toys. We have so many of you. Your songs and voice are unfortunately burned in my brain forevermore. But you are headed for Ebay.

It's almost like a gift...to me.

Five Minutes on Saturday

Sometimes, just one simple everyday moment in time can completely rock my world, and give me new perspective.

That happened to me last Saturday, simply because I met someone and spent five minutes with her. Five minutes that I will probably think about for the rest of my life.

The day before, on Friday, I had a moment with Lilli that I rarely get. Lilli still takes a nap every day. She gets tired out. She's almost ten, but something about her neurologically - maybe the seizures - maybe the brain damage - she still must take a fifteen to thirty minute nap every day. And almost every day, she naps in her special needs carseat while we are driving to pick up Chloe from school.

But Friday was different. Jasen had the day off, and he went to pick up Chloe. Josh had fallen asleep on the floor in front of a Batman cartoon. So I decided I would just try and lay down with Lilli to get her to take a short nap. We snuggled together, and she fell asleep.

Years of interrupted sleep since Lilli was born has wrecked my ability to nap. I have a lot of trouble sleeping. But I didn't mind the quiet time to lay next to her, thinking. It was so sweet, this moment with my daughter. I spend a lot of time helping, dressing, feeding, bathing, coordinating her school and therapy schedules and goals. Then there's Josh and Chloe, who need attention too. But I rarely get to have a quiet time with Lilli, where I lay down and take a nap with her in the middle of the afternoon. (Any mom will agree that it's a miracle to have all of your children nap at once.) I thought, wow, I wonder if I will still be taking naps with Lilli many years from now, when Josh and Chloe are older and are both at school all day.

Then I thought, I wonder how many other moms of nine year olds can do this? 

I hugged sweet Lilli, listened to her soft breathing, and I felt blessed.

The next day, Saturday, I met a girl. The girl I will be thinking about for a long time.

I had heard about her for several months, but I had never met her in person.

A friend stopped by to pick something up. She had this girl with her because she helps provide care for her on the weekends. I went out to the van, because I really wanted to meet this girl that I had heard so much about.

I went up to the window of the van, and introduced myself. I won't tell you her name. She is a twenty five year old girl who has autism. She is non verbal. She has no way to communicate. She cannot be left alone. She needs a lot of care.

She was silently sitting in the back seat of the van, looking down at her hands. I said hello to her though the window, and she looked up at me. Her clear blue, beautiful eyes looked directly into mine.

"I've heard a lot about you, lots of good things," I said. "It's so nice to finally meet you."

She was silent. I smiled at her. "How old are you?"

Some long-time readers will remember an old post of mine about talking to a person with disabilitites. (If you missed it you can read it here.) I knew that this girl could not speak. But she deserves to be spoken to. Everyone does. We talk to infants. We talk to cats and dogs. Some of us even talk to plants. I catch myself talking to toys on the floor, although it's not always nice words. If we talk to animals and objects, how can we ever ignore a person with a disability? It's a person. I know it's hard to know what to do when you see people in wheelchairs, people with missing limbs or people with mental challenges. This is what you do: smile, look them in the eyes, and say hello. That's all.

She reached out through the window and touched me.

I waited a few beats, and then asked my friend how old she is.

Twenty five.

This is what hit my heart: She's an older version of my Lilli. Sixteen years from now. Maybe.

Maybe Lilli will speak words one day. You know that is my biggest prayer for her. But maybe she won't, and that's okay.

I felt the urge to hang out with this girl. I wanted to paint her nails and read her a cool book. I looked at her and saw what looks very much like my future daughter.

And I felt overwhelmingly blessed.

The next morning, we went to church, and part of the message was about joy. That as we take communion, part of it is to remember that God wants to give us true joy in our lives. As we took communion together, tears ran down my face as I thought about how my life has not turned out at all the way I expected. We've missed a lot. My high school reunion is coming up. I cannot even consider it. I have missed weddings of dear friends. I have missed holding their new babies. We have missed trips and vacations. We might always struggle to find people to watch Lilli so we can simply go on a date. We might always struggle financially to live on one income so I can stay home with Lilli and provide for her needs.

But I am seeing that God's plans for my life were greater than any idea I ever imagined. And the blessings far outweigh the things we have missed.

When I was twenty-four with a fresh new teaching career, I never dreamed I would one day resign, because I have a child with special needs who I will likely be caring for full-time for the rest of my life. Some might see it as a burden. I cannot explain it well enough in words. And even when I say this, some will not understand or see it.

But it is not a burden.

It is an incredible blessing, and a privilige. A gift from God. A glimpse of Him. A tiny piece of an idea of heaven.

Even if that does not make any sense to you, I had to try and put it into words somehow.

It's true, I do have some very difficult, discouraging moments. It's hard. Very hard.

But it's a blessing. It is a joy. True joy is not always for happy times. Sometimes joy is most precious in the hardest times. When a person can go through a dark time and still know that God is with them, that God has plans for them, that God knows the future and it is all going to work out for our good, that is real joy.

I'm blessed that God had better plans for me than I could ever imagine. And I'm blessed to have met a future version of Lilli, so that I could have a glimpse of my own heart. I realize that I am not dreading the future. I am not afraid. I am not depressed. I am blessed. I have a purpose.

I am Lilli's mom.

Lilli and me at the pumpkin patch this week. 

Powerful Words About, and to the Flower Girl

After the ceremony in our hotel room.
 She did it! Happy girl.

My niece just got married. She asked Lilli and Chloe to be her flower girls, and Josh to be the ring bearer. What a beautiful wedding, and what a wonderful experience for my children.

How often do children with autism or cerebral palsy get to be flower girls in a wedding? I was not sure how Lilli would handle the job. Would she walk down the aisle? Would she hold a basket? Would she cry? I wondered.

My niece said, "She does not have to do anything. She does not even have to walk down the aisle if she doesn't want to. I just want her to wear a pretty dress and be a part of our wedding day."

Is that awesome or what? A pressure-free flower girl gig. Just wear the dress and look like a princess. If I never told my niece how cool she was about the whole thing, I'm telling her now.

More often these days, I try to let Lilli make her own decisions. She spent most of her non-verbal life having no say in anything at all. We picked out her clothes, chose her food, chose books and toys for her, picked movies for her, took her places we wanted to take her. We did not know what she wanted. We did not know how much she understood. We did not know she cared. She had no way to tell us. One of the biggest life lessons I have learned from Lilli is this: children with special needs should be be encouraged to make their own decisions, whenever it is appropriate. The simple reason why I do it is this: it makes her happy. People like to have choices. They like to have control. They like to make decisions, even if they are little decisions like "Which color shirt do you want to wear?" I did not do this a few years ago. It's hard to do this for a child that outwardly acts like she does not care. I am still learning to do this every day.

It is one of the driving forces behind why we strive each day to help Lilli to communicate, whether it is through an app on the ipad, a sound she makes, a sign, the yes no app on my phone, or some other way. We want to know what she thinks, and we want her to know that she has choices in life.

I wondered if letting Lilli decide for herself whether or not to be a flower girl would help her to be excited about it and, well, honestly I hoped it would help her handle it better if it was her choice to do it.

So I did what I thought any parent of a nine year old would do.

I asked her.

I explained to Lilli what a flower girl does. We were sitting at the kitchen table. She did not look at me or act at all like she was listening. She acted like she could have cared less. And she can't respond verbally with words. But still, I talked to her like I would have talked to any kid. Then I asked her with the ipad how she felt about it.

"Would you like to be a flower girl?" I put the ipad in front of her with the "Yes or No" buttons on her communication app.

She touched the "yes" button. I was satisfied. We have had this scenario many times now. I know she is listening. I know she wants to be a part of decisions. I know she understands.

We had many months to prepare her mentally for this new experience as a flower girl in a wedding. I was resolved to prepare her for this trip in every way possible. I was determined that this one would be different than the last wedding trip. And it was. I want to tell you about my favorite moment of Lilli at the wedding. But first I have to tell  you about why this trip made such an impression on me, and how very different it was than the trip we took two years ago. This wedding post became much more in depth than I had intended, so grab a cup of coffee, and learn from my parenting mistakes that I am willing to share with you.

Words About Our Children

Two years ago, we took almost the same exact trip for my nephew's wedding. I wrote a blog post about it when we returned, called "Autism and the Unattended Wedding." Unattended, because we took turns with Lilli and each of us missed large parts of it. Lilli missed it all, because she was so unexplainably upset. On that trip, we drove for two days, saw as much family on my husband's side as we could in three different destinations, and ended the week in yet another state with everyone in my family at my nephew's wedding. But things were completely different then with Lilli. She had her new ipad, but she did not communicate with it yet. We had not started asking her yes or no questions using the velcro cards or ipad yet. We did not give her many choices - actually, the only choice she really had were which movies she wanted to watch.We did not do a good job of preparing Lilli for the trip, because we assumed she did not understand or care. I had prepared myself, not Lilli. I'd hoped and prayed for the best - that she would not cry, not have seizures, not cause an embarrassing commotion. I was very stressed about Lilli, always anticipating a potential meltdown, worried that she would be anxious and upset in all the different places we went. I spent much of my time explaining to others about Lilli's behavior and special needs. Many times I talked about Lilli while she was right there in the room.  I am sure I probably told people right in front of Lilli, that she was easily upset and might not participate in certain activities. By speaking these predicitions in her hearing, I practically set Lilli up to be anxious and unsure in all the situations. This is a huge regret I have. I am still not sure what happened by the fountain at my nephew's wedding ceremony, but two years later I wonder if it would have helped to let Lilli have a say in what she wanted to wear, where she wanted to sit, and how we spoke to her and about her.

This is a mistake I have made as a parent of a non verbal child. But I think it is a mistake all parents make from time to time: talking about their children while they can hear what is being said about them. It depends on what you are saying, of course. But whatever words you say about your children, your children will hear and believe about themselves. Our pastor said that once in a message, and it stuck with me. It makes me think of words that others spoke about me as a child, many years ago - words I remember even now as an adult, both positive and negative. I'm sure anyone reading this can think of similar memories of words spoken by others long ago. Words are incredibly powerful, and they last over time. So parents should make sure that the words they speak about their children are encouraging, not critical. Predict success and express confidence in your children when speaking to others. Speak words of belief, love, and hope about your children, not criticism, disappointment, and doubt. If you believe and speak those things about your children, your children will hear and believe those things about themselves.

There are so many conversations I wish I could take back over the years, where I expressed doubt about Lilli's capabilities and understanding. I have made this mistake many times, but I try not to make it anymore. Being the parent of a child with autism, this is something I have had to figure out the hard way. Seeing how Lilli's little sister reacts to my words has helped me.

I now notice that Chloe always listens to hear what I am saying about her to others. She runs into the room and questions me.

"Mommy, what did you just say about me? Why did you say that?"

I realize that Lilli listens too, but she never acts like she is listening. Her body language usually displays indifference. I now realize that she has excellent hearing, and she has heard every word we have spoken in her presence for her entire life. Scary, because that includes all the professionals who have spoken about Lilli in front of her over the years. Some spoke in encouraging, loving ways, but many have spoken things that Lilli never should have heard. I have experienced several conversations where teachers or therapists spoke about Lilli with words that never should have been said in her hearing. This is really something to remember for everyone who has children or works with children, especially children with special needs. Parents, teachers, babysitters, therapists who work with non verbal children with autism, please be mindful of how you speak in front of these children. You do not know how much they understand. It is always better to assume that they can hear and understand, even if they do not act like it.

When I look back two years to the last wedding, I see how far we have come. Yes, Lilli has come a long way. But I'm talking more about us. Her parents. We have learned and grown. When I compare the two wedding trips, something about this one we just took seemed easier. Better. I know the kids are older and that is part of it. But there was something else. I really thought about it, and reflected on the differences. There were similarities, such as how awesome our extended family was in so many ways, helping us and helping our children.

But the big difference was really how Jasen and I treated her. How we talked to her, and about her to others. And because of that, it made a difference in Lilli. Because Jasen and I now realize more about who Lilli is, that she is smart, and that she understands and hears everything.

The Second Wedding Trip

I think any parents out there will agree, a happy trip with three young children is something to be very thankful for. Everyone was just happy the entire trip. We had a great time with everyone we saw. We didn't have any major mishaps, like a flat tire. We didn't even forget anything or lose anything. Really, it was probably a small miracle that the trip went so well. It was just a happy time of seeing loved ones and celebrating a new marriage. But I think the fact that Lilli was happy the entire trip was a huge difference from the last trip.

It was the little things that made this difference. On this trip, I noticed that we encouraged her more. We sought to build her up and compliment her. We believed in her more, and gave her the benefit of the doubt when we could not figure out what she was trying to tell us. We asked her questions a lot, and respected her answers.

I think we focused on her more in an older, "she's a big girl" way on this trip, which takes effort because she can become easily unnoticed in the corner for long periods of time- especially if she has an iphone with youtube. We all talked to her (including Chloe), not at her or about her. I love that most of our family members do this too. It takes a lot of effort to try and talk to a non verbal autistic child that seems to ignore you. Words spoken to and about Lilli are important to me, because I know now that she is listening.

I overheard Jasen telling family members how smart Lilli is, that she just took a standardized math test at school with her ipad and did very well on it. Lilli heard him too. I heard Jasen sweetly explain to a couisn, "You can talk to Lilli just like you talk to Chloe. She might not talk back, but she understands everything you say. She's smart and she likes it when people talk to her." I looked across the room just in time to see Lilli smile to herself. I knew she was happy he'd said that about her.

We'd not said anything like that two years ago, because we did not know it. Our view of Lilli has changed.

We spent a lot more time on this trip explaining things to Lilli in advance. We tried to prepare her mentally, and answer any questions she might have, even though she could not verbalize them. It is sort of an odd thing, to talk to someone who can't ever talk to you. It's not like talking to a baby. Lilli is nine years old, so you have to talk to her like a nine year old. Otherwise it is condescending and insulting to her. It's part imagination, part courteousy, part love. Chloe can ask us tons of questions, but Lilli can't. And she gets anxious. I would be anxious too if I did not know what to expect, and if I was not able to ask my questions. Wouldn't you? I have to try and think of what nine year old things Lilli might want to ask us or tell us, and talk to her about those things.

When we drove to my brother's house to have Lilli and Chloe try on their flower girl dresses, we explained to Lilli that she was going to try on her new pretty dress to make sure it fit. We told her that she was going to look beautiful, and we could not wait to see her in it. When we put the dress on her, everyone ooohed and aaahed. My nieces told her she looked beautiful. My sister in law told her she looked like a princess. My brother played Legos with her and talked to her. All the cousins paid attention to her. I saw Lilli smile to herself multiple times, and I knew she was very happy about that dress. But mostly I think it was because everyone made a big deal out of her being a flower girl. It was really sweet.

At the rehearsal, our family and the people from the church were amazing. They asked what they could do for Lilli, if there was anything the church could have to help her feel more comfortable. I loved when others complimented her and paid attention to her. I did not feel anxious at all, and I think our calmness helped her stay calm. We encouraged her and walked her through it all.

At the wedding, we tied a little sprig of flowers at the top of her dress so she would not have to try and hold anything. Right before she was supposed to walk down the aisle, she got a little anxious. Jasen held her and softly sang the Veggie Tales theme in her ear. We told her she looked beautiful and that we knew she could do this. When it came time, she did it. My nephew walked with Lilli and Chloe, while Jasen and I raced up the side to the front to meet her when she got there. Halfway down the aisle, she buried her face in my nephew's side and stopped. She looked around with an anxious look on her face. (Probably thinking, "there are so many people looking at me!") He gently encouraged her and put his arm around her, and she kept going. She made it to the front! We were so proud of all of our children. But I was really proud of Lilli for walking up the aisle in front of everyone. Chloe and Josh soaked up all the attention. But it was a very big deal for Lilli to walk down the aisle with people watching her.

A Special Moment at the Reception

I have seen a lot of pictures from the trip so far, but there is one picture from the wedding that I am waiting for. At this wedding, my nephew and his wife were the professional wedding photographers. There was this one moment at the wedding reception, one memory of my children. It might be the most meaningful moment of the entire trip to me, and my nephew snapped a picture of it. In this one moment, I have a bundle of a thousand feelings wrapped up together in my heart.

Two years ago, we could not get Lilli to even enter the room where the reception was at my nephew's wedding. She was so upset the entire time. She had even cried while we had our family pictures taken. This reception was just as loud and crazy as the one two years ago. But something was different about Lilli, and something was different about Jasen and me. We took her right into the reception room and found our seats. She held my iphone and watched her favorite YouTube clips. She sat quietly at the table and did not try to escape the room. I realized Josh and Chloe were missing, so I ran out into the hall and found them lined up with the whole wedding party.

When I saw everyone lined up, it dawned on me what they were getting ready to do. I looked at the bride and groom at the back of the line with Chloe and Josh.

"Oh! Are you going to be introduced? Do you want Lilli out here too?" I asked them.

"Yes, if you think she'll do it!" They answered. "Just tell the DJ her name!"

Oh, she's gonna do it, I thought, as I ran back in determined to get her. I wove through people and shouted the information over the loud music and happy chaos to Jasen. He quickly took the iphone out of Lilli's hands and scooped her up to take her out in the hallway.

As each couple edged closer to the doorway to be annouced, I looked at Lilli. She had both of her hands over her face and looked like she was about to cry. The music was booming, and we could hear cheers erupt from inside the reception room each time the double doors opened and another bridesmaid and groomsman entered onto the dance floor. Then the doors would shut and the sound would be muffled as we moved up in line. Josh and Chloe were bouncing around smiling with confused excitement. They had no idea what was happening, but they were having a blast. I took Chloe and Lilli together and stooped down face to face with them.

"Ok listen, Lilli, you can do this. All you have to do is walk into the room. They are just going to say your name and everyone is going to clap and cheer for you, it's going to be great! You don't have to do anything except walk in the room! Don't be nervous, you look beautiful, I'm so proud of you and I know you can do this with Chloe and Josh."

I looked at Chloe. "Chloe, can you hold Lilli's hand? Or hold her arm, you know how she doesn't always like her hands to be touched. Can you hold her wrist gently and walk with her and Joshie into the room when they open the doors? Do you think you can do that?" Chloe nodded seriously and said "Yes, mom! I can do that!"

I looked back at Lilli and confidently told her, "Chloe will help you, Lilli. Hold onto Chloe, and you'll be fine. You'll be great!" I smiled and realized that I genuinely believed Lilli could do it, and I hoped she would try. It was important that she try. I did not want to leave her in the corner, watching youtube on my iphone. She might not act like she cared, but I believed this would be an important moment for her.

Later I thought about how two years ago, I would have just given up and said to someone else nearby, "She can't do this." And I would have taken her outside, alone, and felt sorry for myself and her as we distanced ourselves from the loud music. This is what I mean when I say that Jasen and I have grown.

We inched closer to the doors, and I said to the woman who was opening and closing them, "I'm going to coax them into the room and then slip out of the way." I positioned them together. She opened the doors, and I gave them all a little encouraging tap. "OK go go go!" and off they went.

And this was the moment that I hope was captured by my nephew's camera: the moment all three of my children walked into the reception by themselves to be introduced.

Maybe to some, it would not make much sense as to why this particular moment meant the most to me of the entire week. But to me, silly mom who has tears even now as I write this, it just made me so proud. Lilli was included. All three of my children were arm in arm, linked together, doing what they were supposed to do. And Jasen and I had encouraged her to do it. We did not whisk her away and assume she could not handle it. We did not take the easy way out and keep her in the corner with the iphone, away from the chaos.

I had become so accustomed to avoiding potential meltdowns. I knew this moment had the potential for Lilli to stop and crumble into a crying heap with her hands over her ears. But I was so confident that she could do it. I wanted her to do this and enjoy being cheered for in her princessy flower girl dress. I think all children can tell a lot about what grown ups think. They can tell deep down if we believe in them...or don't believe in them. And that can really make the difference in whether or not they try things.

Lilli walked with her siblings into that music-booming, crazy, filled-with-people-and-dj-lights-swirling-reception room, and she did not stop or cry. She held onto her sister and trusted her, and she walked through the doors. She might have been nervous, and she might not be smiling in the picture. But she didn't cry, and I know that took so much concentration and effort from her to do something so overwhelming. A flower girl gets a lot of attention. I wanted her to be cheered for just like Chloe. I knew she could do it.

And she did.

The three of them walked over to the dance floor together as everyone cheered. I looked at my nephew, who had just taken a picture of them, and I said, "They did it!"

It was more than just my three children walking into a reception to be annouced as ring bearer and flower girls. It was more than the fact that none of them cried, and they followed directions in front of that large, cheering reception party. I often see things in a symbolic way. It was just once again that picture imprinted on my heart of my three children, linked together, walking forward side by side in life. That despite Lilli's differences and disability, she held on to her sister and did her best. I hope and pray that they will all grow up loving each other deeply, and helping each other selflessly. I see Chloe's heart already, as she has come to understand that her sister has "special needs." Chloe has moved past the questioning, frustrated with her sister stage, and become a wise, helpful, loving and supportive sister.

I was proud of Chloe, for lovingly guiding her sister, complimenting her, and encouraging her so many times on this trip.

I was so thankful for all of the people who made a big deal out of Lilli and overcame the awkwardness to either pick her up or hug her or talk to her. I was so thankful that my niece asked Lilli to be in her wedding. I am thrilled that my nephew took a picture of one of my favorite moments.

I was grateful to see how simple encouragment spoken directly to Lilli from Jasen and me helped Lilli time and time again throughout this trip.

And I was so very proud of Lilli, for being an awesome, happy, beautiful flower girl. 

This is right after the ceremony. Most people know now that when Lilli puts her hand on her neck like this, she is "saying" something, but the words just won't come out. What do you suppose she is saying here? 

Why I Appreciated "Chick-fil-A Cow Appreciation Day"

Our day began with Chloe spinning too much in Lilli's therapy swing, crying, and throwing up from being dizzy. Then some sibling fighting, a messy breakfast, some potty training issues with Josh, and cleaning up all of that. Two baths later, we were back on track. Just another typical day here. Except that today, in this house that's usually filled with therapists working with two of my children, there was one highlight we were all looking forward to:

Cow Appreciation Day at Chick-fil-A.

We had plans to meet friends there for lunch for this fun annual event where everyone dresses up like a cow. I looked at the clock and figured we would need about an hour and a half to get all three kids and myself dressed like cows and out the door to Chick-fil-A.

I was wrong, it took two and a half hours. No helpers for Lilli here today. I explained multiple times to Josh that we were not dressing up like Spiderman to go to Chick-fil-A, we were going as cows, for Cow Day. We went through several Spiderman and cow outfit changes. Chloe cut out black spots and tails, and I dug up white clothes and made ears. Lilli was quiet and tolerated me dressing her in a white outfit and sticking spots on her. Finally, we were driving down the road covered in black construction paper spots with "Eat More Chikin" signs taped on our shirts and floppy black paper ears and tails. I took care to tape a barrette with cow ears on top of Lilli's head because headbands bother her.

When we pulled into the completely full parking lot, I was relieved to see one available handicapped parking spot for Lilli right next to the door. I parked and picked up the phone to call my friend. She is a new friend. She does not know us very well, and I knew I would need help getting these three inside. She answered her cell phone, and she was just telling me that they had saved seats for us when I glanced at Lilli in the rear view mirror.

She was having a seizure.

"Lilli's having a seizure, I gotta go!" I yelled into the phone and dropped it. I climbed back into the back of the van to her. Chloe covered her face with her hands, upset.  "This is terrible!" she said over and over as I tried to stay calm and tell all three kids that everything was going to be OK. Even though I was panicking inside, and I didn't really KNOW that everything was going to be OK. "Here, call Daddy," I said to Chloe. "I don't know how!" she wailed. I hit Jasen's number and handed her the phone. This was a mistake, because Chloe did not have the phone right on her ear. She kept saying, "Lilli's having a seizure, this is terrible" but she could not hear Jasen. I had to take the phone from her and tell him what was happening.

Even Josh was scared, I think because Chloe was saying over and over, "Lilli's having a seizure!" Josh started to say it too, yelling "Mommy, mommy!" Fortunately they were all still strapped in their car seats, so I didn't have to keep my eye on them as I pulled Lilli out and helped her.

She came out of the seizure, and I started to breathe again.

Now what? I wanted to get back in the driver's seat and drive back home. So many times I have been through this. It never gets easier. It is always just as shocking and scary. Just then my cell phone rang. It was my new friend. She had not heard me say that Lilli was having a seizure, because it was so loud and crazy inside Chick-fil-A  They were just sitting inside waiting for us. I explained that Lilli had a seizure, and she said she'd be right out to help. I told her we might not stay. I had to get my bearings because I was so overwhelmed. I gave Lilli a drink of water and she choked on it, coughing and sputtering.

"Wipe her mouth, mommy!" Chloe sat and watched her drooling sister with concern. I looked at Josh, who was still upset, and I said calmly, "Lilli is OK, we are all OK. Ok?" I fixed my headband with floppy black ears, and grabbed my cowbell. A bunch of black paper spots had fallen off of me onto the van floor when I was helping Lilli. I scooped a few up and slapped them back onto my white makeshift cow outfit. Really I did not even want to go in. My friend came out to the van and helped take Chloe and Josh by the hand to go inside.

When we got to the counter to order, I could not even think. Lilli was probably not feeling that great, and she was crying and shrieking with anger. After one ear-piercing scream, I heard a person nearby mutter, "Whoa." I know. It's loud. I'm sorry. I do not know what to do for her when she gets like that, except either leave, or push through it and hope and pray she gets happy again.

I had given her my phone to watch her favorite YouTube videos, and Youtube would not work. The sweet girl at the cash register was patiently trying to take my order between shrieks, and I said, distractedly, "Hi, um, ok, it's me... and three small cows. We'll take...whatever you want to give us." She laughed and nicely tried to help me through our order. If she only knew why I was acting so weird. I did not tell her that Lilli had special needs, but I'll bet she could tell something was up. My friend took Josh and Chloe back to the table, and I tried to balance the full tray and hold Lilli's hand. Lilli reached around in anger, shrieked, and grabbed the side of the tray, almost spilling it. I kept taking deep breaths. This was hard.

We got to the table, and Lilli was still upset. Finally I gave up on having them eat anything, and took all three of them into the play area. As soon as we did that, Lilli was happy. She loves being around other kids. She did not even climb up into the tunnel, she stood at the bottom and flapped her arms happily with a smile. I saw another mom I knew and we chatted a little. I kept trying to ignore the feeling of wanting to bolt out of there. The kids were having fun, while our food got cold on the table. I never even took one bite.

I realized suddenly with the instinct that only the mom of a potty training toddler has, that Josh needed to go to the potty, NOW. Or there would be trouble in the Chick-fil-A tunnel. I took Josh and Lilli by the hands and told Chloe to stay with my friend, we'd be right back. As I tried to steer the kids through the crowded restaurant, another friend I didn't even know was there popped up from a table and offered to take Lilli for me. What perfect timing.

When Josh and I got into the bathroom, my emotions threatened to overtake my mask of calmness. I felt the tears coming up, and had a thought that might have ruined it all: Lord, why did you give me these dear needy children? I'm not very good at this. And then this thought: Stop it. Get back out there.

So another deep breath, and back out we went. The kids played for a little while longer. I thanked my two friends for helping me, and saw the other mom I'd chatted with earlier. I told them all, "This is hard. I almost didn't come in because Lilli had a seizure in the van when we pulled in." The one mom hugged me, and said, "You're amazing. Bless you, you're a good mom. I can't believe you came in." My friend said, "You did it! You got through it, you came inside with your kids after Lilli had a seizure. Good job, you can go home and write down that you did that." (and I did.) My new friend that we'd sat with packed up all of our uneaten food in a bag and said, "You did the right thing. The kids had fun." She carried the food and my other friend carried Josh.  They helped us all out the door back into our van.

As I drove away from that experience with the free Chick-fil-A food we would heat up and eat later, I had one thought: I don't want much in life, just a little help from nice people. Cause life can be tiring and hard, but when you have people help you along the way, it's more bearable. Friends and family can make you smile through the craziness and tough times. And I know why Chick-fil-A just gave away all those meals to customers dressed like cows. They are just being nice. It was simple kindness.

When people are nice and help me, it reminds me that a little tiny bit of being nice and helpful goes a long, long way. The people that helped me today made my day. The nice girl at Chick-fil-A that sweetly placed my order and said "My pleasure" with a smile, despite my confusing order while my daughter with special needs had a meltdown, made my day. Kindness is worth way more than any chicken sandwich.

Thank you, kind friends, and thank you, Chick-fil-A. Just for being nice. I appreciated it.

Church. Part 3: "The Church that Had a Plan."

(This is part 3 of a series of posts on church with a child that has special needs. Part 1 is about how Lilli was born into a church, but grew out of the nursery and had no place to go. Part 2 is about what we experienced when we moved and visited churches, and discovered how hard it is to find a church that had a place for Lilli. This continues the story of church visiting...)

In the Bible, there are tons of stories about people with special needs. Jesus paid particular attention to them. He spent time with them, healed them, and loved them. I love these stories. Jesus heals people who cannot speak. He heals people who have seizures. He heals children. I love these stories the most, because I have a little daughter who has seizures and cannot speak. I love these stories because they show how He cares about people with special needs. Those stories were important enough to be written in the Bible. That is very significant to me. I always imagine how Jesus looked at these people in their eyes. He did not look away and act like He did not see them. How He did not feel awkward or uncomfortable, he just loved them. He touched people that no one else wanted to touch. He spoke to people that no one else felt comfortable speaking to. I love that so much about Jesus.

People with special needs matter to God. They need extra help. A lot of extra help. In the Church, they belong to part of the church family. If they are missing from the church family when we gather together on Sunday mornings, it might be because we are not making it possible for them to get there. If the building is handicapped accessible, (which of course it should be), the family might get inside and find that there is no place for their child. Who wants to go to a church where they feel like there is no place for one of their children?

When my niece told me about a church nearby that had a class for children with special needs, we made plans to visit it right away. We looked at the website and decided it looked like a great place to try.

On Sunday, we packed up the girls and diaper bags, followed our directions and drove a half hour away to visit this church. On our way, we passed the small church we had first visited, two minutes away from our house. I looked at it out the window as we drove by, thinking about our awkward visit there. I hoped that this visit would finally be the church that had a place for Lilli.

It was a huge church. When we arrived, parking attendants waved us way to the back of a packed parking lot. A golf cart driver from the church picked us up and drove us up to the door. Never did I dream that we would visit a church like this. It was big, and not at all traditional.

We found our way to the “First Time Visitors” station to check in our kids. Yes, they had a special class just for Lilli. The volunteers escorted us to Lilli and Chloe’s classrooms, and this is the moment I remember vividly. A young, smiling teacher came out of Lilli’s classroom and got down on the floor in front of Lilli. She smiled big, right at Lilli, and looked in her little face and said excitedly, “Hi Lilli!!! My name is Morgan! We’re so glad you’re here!”

Lilli instantly wrapped her arms around Morgan’s neck, and hugged and kissed her. “She just kissed me!” Morgan said, and looked at us like her heart was melting.

I could have cried. We felt relieved and welcomed. Even now I am feeling teary just remembering it. They were not afraid of Lilli. They were happy to just meet her! They looked right at her and talked to her instead of asking us about her special needs first. That made the difference for both Lilli and us. When we began to explain about her seizures and special needs, Morgan and the other volunteers listened intently with confidence. They were fine with all of it. It was no problem. There was a medical team that could be called if necessary. They would put our name up on the screen in the service if they needed us. They had toys and fun things for the kids. Most of all, they were excited to play with her. There was not one hint of awkwardness or discomfort. They encouraged us to go and enjoy the service.

We walked away, child-less, and a little stunned.

During the worship songs, we both got emotional. I could not believe that we had just dropped our kids off and went to the service, together. It felt so…normal. Jasen took my hand and squeezed it. We looked at each other, knowing that we were both overwhelmed with the simple fact that we had not been able to go to a church service and sit together in a long time. The service was dark while the worship band played, and I was glad. I had tears of thankfulness streaming down my cheeks while we stood and sang. When we sat down together to listen to the message, I felt rest in my soul, the rest that I had been yearning for.

Some parents have never experienced that.

I do not have any hard feelings about our experiences with any of these churches. Instead, I have a passion for change, because I realize that our story is common.  I think that before change can happen, there needs to be awareness. This is taking me down a new path as I serve in our church, seeking to serve families like ours and help them to be able to experience what we ourselves experience every Sunday.

Visiting a new church is hard. Going to church with young children is even more difficult. But going to church with a child that has special needs, seems almost impossible for many families. But it doesn't have to be. I think about our personal experience, and wonder what would have happened if we'd given up. I think about the hundreds, well, thousands of other families just like us.

And I just want the Church to know:

It wasn’t the size of the church. It wasn’t the music. It wasn’t the color of the walls, or the graphics or the videos. It wasn’t any of that. We mattered. We were not invisible. We were not made to feel unwelcome, uncomfortable, or ignored. Our child was welcome, and there was already a place for her when we arrived. A fun place! They were not afraid of her. They were not intimidated by her needs. There was no scrambling or awkwardness when we checked her in. It seemed like the easiest, most natural thing to just find her class and drop her off. This church had thought about the fact that families might come and have children with special needs, and those children would need a place to go. And it already existed.

I know what some of you skeptic-types are thinking. Well, you can have a program like that in a big church. You have more people to help. You can’t do that in a small church.

Maybe that’s true. But maybe…it’s only partly true. I wonder how we might have felt if we had visited any of the other churches, and had the greeters or the childcare check in people treat us a little differently. I wonder what it would have been like if they had not seemed so instantly uncomfortable and unsure of what to do with us. Their awkwardness made us feel awkward and unwelcome. I wonder if we would have felt a little better if the church staff had prepped their teachers to make a plan for what to do if they ever had a child with special needs come to visit their church. What if there was something on their website that said, “If you have a child with special needs, we would love for you to bring your child, please contact us before you come so we can make arrangements for our wonderful volunteers to be ready to care for your child….” What if the last church had simply called us back? They obviously did not have a plan.

This is the difference: “Hi, we don’t know what to do with your child!”

Or: “Hi! We are glad you are here! And we are glad you brought your child with special needs with you too! We were thinking of you, and we have a place for her!”

I said this in a post a few weeks ago: if you look around your church, and you do not see any children with special needs, ask yourself why. Is it that there just aren't any children with special needs in your community? I doubt that. Where we live, there are hundreds of families. Hundreds. But I see them all the time, while you might not know about them. I see them because there are special needs classes in the schools. We see them when we go to the clinic for therapy. We see them at our church. The therapists and teachers that work with our kids see other children with special needs all day long. All you have to do is look at your local school or hospital. Do you know a nurse, teacher, doctor, or a therapist? Ask. You will find these families. Look up the local therapy clinics nearby. They are going there for appointments every week. I know that I am leaving out the fact that if there are children, they grow up to become adults. If you do not have any adults in your church with special needs, that is yet another problem.

But when you think about these families, would you feel comfortable inviting them to your church? Would there be a place for their child?

Back when we first started going, for a few months, there were Sundays that Lilli was one of just a handful of children in that class. Some Sundays, she was the only one there. It did not matter. They treated her like gold. They prayed for us, sent us cards of encouragement.  Lilli loved going to church. They had a ton of great toys, music, and a fun tent for her to crawl in. I was worried that the church might decide that it was not worth it to have a whole room with volunteers for just one or two kids.

I was wrong to worry.

Because now, there are new families with children with special needs that have found out about our church. The word has spread, and it will continue to spread and grow. This is my new passion, to spread this word to families in our community. I want other churches to take a good look at this need.

If you create a place for these children, and you invite a few families, the word will spread. These families have nowhere to go to church! Some of them have actually been made to feel bad about their childrens’ autistic behavior and disruptions by ignorant members of their church family. This ministry is sorely overlooked in many churches.

I recently asked a friend about her church. I have known this family for over a year, and they go to a different church than we go to. They have two boys with autism. A few weeks ago, I asked her, “What do you guys do when you take the boys to church? Is there a class for them?”

Want to guess her answer?

“We take turns.”

She and her husband take turns sitting with the boys while the other parent goes to the service. They have done this for years.

You can make a church building handicap accessible. But once the person with the handicap gets inside the church building, will they have a place to go? Adults with special needs can sit in a service, if they are able. But what about the adults who are not able to sit through a service? What about the children with special needs? The teenagers with special needs? If the current CDC statistic for children diagnosed with autism is one in fifty five, where are all of these families going to go to church? Theoretically if you look at fifty five families in your church, one of those families will have a child with autism. But if there are no children with autism, or any special needs at all in your church, there is a problem.

I want churches to look at this issue. My heart yearns for families like ours to be able to simply go to church – for parents like Jasen and me to sit together in a service, and not worry about their child. I want to find other families like ours, and tell them about my church. I want them to come to visit our church with their children. I want other churches to have a place like this for children!  I desperately want families to come and experience what we experience, because it is so rare! Should it be this rare? I want them to feel like their children are loved, expected, and welcome. I want them to know that their children can come and squeal, crawl, jump, flap their arms, and run around in my church, and it will not be awkward. Their children will be shown the love of Jesus in my church by people who have a heart for serving children who have special needs.  I want them to know they there is a place for their child at our church. Wow, do I love our church. Big, and far away, and imperfect and all, I love it dearly. For so many, many reasons. But mostly, because of one simple reason:

We can go, because there is a place for Lilli. 

For the rest of the story, about our serving and small group experience, please click here

Church. Part 2: "No Place for Lilli.”

(This is part 2 of a series of posts on church with a child that has special needs.)

No church is perfect. They all have flaws, because they are run by people, and people are imperfect. Our pastor has said, "If you have not been unintentionally hurt in some way by our church yet, you probably will, and we're sorry." Because churches are run by people, and people make mistakes. But I still love my church, passionately so. And I love the "big C church," which is all of the churches together as one. I hope the tone of these posts reflect my loyal love for the Church, despite the areas we need to continue to work on. The Church is a work in progress, as we all are.

Our family of four when we moved here...Josh is on the way.

Continuing the story, we left that state and moved to a place where we knew NO one. We moved so Jasen could go to school, leaving everything and changing careers so he could help Lilli and others like her. (But that's another story.)

When we got here, we were stumped. How do you find a new church in a new town, with kids? It seemed much easier when we were just a couple. We had two children now. Lilli was five, and Chloe was two and a half. Then, surprise! I found out I was pregnant the week we moved in. Now we were going to have to find a new church with a child that had special needs, a two year old, and me with morning sickness.

I didn't want to look for a new church. I felt completely overwhelmed, being in a new place, pregnant and unpacking. But we needed to start sometime. We wanted to worship with a group of fellow believers. We wanted to serve others. We wanted to find another church family to be a part of. We also knew that we needed a break. Honestly, we felt a little burned out, and needed to find a church where we could attend for a short while and get settled in, before we started serving again

We were in great need of rest and time together. A few minutes to just breathe. And yet we were unable to find it. We were learning the new area. We did not know one person. Certainly we did not have a babysitter we could leave Lilli and Chloe with.  We were basically older "college students" now with student loans and a strict budget. We did not have the money to go on a date, let alone find a babysitter for a child with special needs, and a toddler. We left our old circumstances with the hope that we could help our daughter more in a new set of circumstances. We were following the obvious signs that God was giving us, to move and make this change. Even though we knew it was the right decision, it was not at all easy.

It is important that you have a feeling of tiredness in your heart for us as you read the next part of the story. It was a stressful time for us, filled with unknowns. Everything about moving to a new state was magnified by the “special needs” aspect of our oldest child. New doctor for Lilli, new neurologist, new therapists, new insurance, new programs with paperwork for a child with autism, new school with new teachers, tons of meetings, new IEP paperwork, new house for her to learn to navigate without bumping into walls. Then we had to figure out everything for the rest of us, including the baby on the way. During that time, I wrote in my prayer journal over and over that I needed rest. Just rest. And I was not finding it.

That first Sunday in our new home, we put the girls in the car and drove a few minutes down the road to a new church. It would feel strange to stay home on a Sunday. We always went to church. We simply picked this church because it was close by, and we liked the name. It looked small. We thought small might be good, since we came from a small church that we had loved.

We did not have a handicapped parking placard back then. I was in denial about that for a few years until I finally broke down and admitted that Lilli needed one. So we parked in the main parking area and Jasen carried Lilli in his arms because she still tripped and fell so much. Greeters met us at the door. Introductions were made, and they asked about putting the girls in Sunday School classes. I felt like I was going to be sick from being pregnant in that summer heat, but I tried to force a smile. Chloe was holding my hand, and Lilli was in Jasen’s arms.

"This is Chloe, she's almost three."

Then we all looked at Lilli, paused, and began the "Explanation Process:"

This is our daughter Lilli. She has special needs. (Awkward pause while the uncomfortable person tries to figure out how to ask what's "wrong" with her without using the words "What's wrong with her?")

Lilli has autism and cerebral palsy. She has seizures. She can't talk. She has a hard time walking and she trips a lot. What, oh Chloe? Yeah, ok, she can go in that three year old class, that's fine. Great…. Um…

Another pause while we try to figure out where Lilli goes.

Lilli? Uh, okay, no, she can't really go in with the other five year olds... (In a whisper: She's not potty trained.) She can't have regular snacks.  Lilli chokes sometimes, she can only have the food we brought for her. She's on a special diet for controlling seizures. No, she can't have a juice box. She usually does not have seizures when she is awake so as long as she doesn't get sleepy, we're OK. Oh but sometimes she does have seizures when she is awake, and we should tell you what they look like in case…

...ok...we'll...just come into the class with her. We'll just...take turns.

We all ended up in the toddler classroom. It was Chloe, Lilli, Jasen, and me, in a small room with two other three year olds and two teachers.

Awkward!

We sat in teeny chairs and told the teachers about Lilli's special needs. We could hear the music coming from the service down the hall. After a little while, Jasen asked me if I wanted to go into the service. I didn’t want to go to the service, late, by myself. Frankly, I just wanted to leave all of that awkwardness and go back home. I asked Jasen if he would go to the service and I would stay with Lilli. I weakly made conversation with the teachers, who had no idea what to do with Lilli.  They seemed nice, but scared of her. They were quiet and unsure with us. They told a Bible story to the children. I sat on the floor with Lilli next to a pink dollhouse, and repeatedly  pulled the dollhouse people out of her mouth. They tried to get the children to the table to color a picture. I explained that Lilli could not color. She could not hold a crayon. I felt so uncomfortable being in the classroom with the teachers. They were a young couple, newly married and they said they had not been teaching that class for very long. I felt like we were making them feel uncomfortable. Lilli and I sat on the floor with the toys in the corner and I counted down the minutes until we could go home.

We did not go back to that church.

They were nice. But we were tired. Even if we had continued to try and go there, it would take a long time for us to get to know people well enough to figure out who could watch Lilli. What class would Lilli go into? She would need a one-on-one helper. I envisioned months of taking turns and re-telling Lilli's special needs to every single person there, and taking turns sitting in that toddler classroom. It was too much. I did not want to feel that uncomfortable feeling every Sunday. Somehow, now, a small church seemed... too small.

We had visited one church so far. Finding a new church takes time. You have to visit more than one.

The next Sunday, we tried a second church. A bigger one. A little further away. My sister and niece were visiting, and they offered to help with Lilli so Jasen and I could go into the service and check it out. We parked waaaay far away from the door because the parking lot was packed, and carried Lilli in. It was a large church, built in an old warehouse, with parking attendants, and a little coffee cafe near the entrance. It had a nice appeal to it, building-wise. It was impressive as we walked in the door. We went straight for the kids section to find out where to check in the girls for class. The kid's classrooms were adorable. The hallways were painted with bright designs, and there were tree sculptures and park benches in the hallways. We were hopeful.

But then we got to the kids check-in person. She did not know what to do with Lilli. It really threw her off. They did not have a place for kids with special needs. We all stood there for a moment, trying to figure out what to do with her. It was awkward. It was upsetting. It made me feel so out of place. How could this be? How could there not be any other children with special needs in this huge church?

The service was starting. My sister and niece insisted that we go to the service and enjoy it, and they would sit with Lilli in Chloe's classroom. Again, we put her in with Chloe, the two and a half year old sister that had already surpassed five year old Lilli in development. My sister waved us off, telling us to enjoy it and they would be just fine.

Jasen and I sat in the back in case we needed to leave because of Lilli. We knew it seemed rude, but we kept our cell phones on vibrate on the seat next to us in case my sister needed to get us. Seizures trump social etiquette.

When the service was over, we went to Chloe and Lilli's classroom, but Lilli wasn't there. My sister was sitting with her in an empty classroom down the hall. She explained that they took Chloe and Lilli to the classroom together, and the teacher seemed stressed and unhappy. She completely ignored my sister and niece, and did not even acknowledge Lilli. My sister tried to explain to her that Lilli had special needs, and that they were there to stay with Lilli so we could go to the service. The class of toddlers sat at the table and made a craft, and then they had snack. Lilli could not participate in any of that. She could not even sit in a regular chair at that age. My sister took Lilli out. Lilli was happy to explore an empty classroom, making squeals and chirpy noises for a half-hour while they waited for the service to be over.

My heart sank. It seemed like a great church. It was certainly big enough that I thought there might be a class for Lilli, or volunteers who could help us. There were tons of young parents and kids. It was so bright and cheery. But there was no place for Lilli. Without my sister and niece there, we would have been in that empty classroom with her during the service.

We did not go back to that church, either.

I felt frustrated. I looked at the church ads in our new phone book. I searched online. When I typed in the name of our town, "Special needs" and "Church," I came up with nothing. We asked our new neighbors. Jasen asked professors at school. We decided to try a third church.

This church was medium-sized and pretty traditional. We found the kids' check-in desk and filled out paperwork with their information. Then we began "The Explanation Process" again.

Of course there was no class for Lilli.

We made the plan to take turns, again. I wanted to go in with Lilli first. I lost interest in this church the minute I realized that yet again, there was no place for Lilli. I was tired of this already. I thought maybe we might start watching church online, or just read some really good books. Was this really worth it? Jasen was more motivated than I was. He was meeting people and shaking hands. I wanted to go home. This is coming from someone who was raised in church and loved the Church. Only a few months ago, we were standing up front leading the worship songs. How could we find a church in our new town when there was no place for our daughter? I was starting to see that this was a problem, not just in one church, but many. What did other families with children with special needs do about church? I wondered.

Again, we put Lilli in with Chloe, but this time the class was multi-aged. That was a little better. It was a large class. The children sat on the rug while one teacher told a story with a puppet and some pictures. Lilli wanted to touch the walls at the back of the classroom, because there was a large painted mural of a forest scene. She liked the deer in the painting. She touched it, and sniffed it. She stuck her tongue out to lick it but I stopped her. She was distracting some of the children who were sitting over on the rug for the lesson. They were watching Lilli instead of the teacher. I tried to make her sit with me on the rug with the other children for a few minutes. I held her in my lap and held both of her hands, trying to distract her and keep her with me. She made happy, loud chirps and squeals that interrupted the teacher’s lesson. Every little head whipped around to look at her every few seconds as she made noises and tried to crawl away. I felt so out of place. I tried to smile. But I was battling with that uncomfortable feeling of curiosity and stares we always get from others. I did not know anyone there. The children did not know what to make of Lilli. The teachers didn’t either.

When it was snack time, the older teacher passed out cups with Fruit Loops, and I inwardly groaned. "Would she like a snack?" she sweetly asked me. All of the kids were happily eating their Fruit Loops at a long brown table, while Lilli stood across the room with her nose stuck on the window, looking outside. "No thanks," I answered for Lilli.

"Are you sure? Here, let me get her some. Here, honey." She walked over to Lilli in the corner by the window.

"No, that's ok, really, she can't...have those. She's on a special diet to help control her seizures..and, thanks... no thanks." She stood there and paused for a minute, not knowing what to do for us. I felt so uncomfortable. Really I can be a pretty bold person. But who enjoys being the new person in any situation? I don't.

Jasen came in and switched places with me. Saved! I snuck into the back of the service by myself, so obviously late, and obviously a visitor. But later, I found out that Jasen ended up taking Lilli out, and he sat in an empty classroom with her for the rest of the service. She was not participating at all, and she was distracting to the other children, so he just chose to take her out. When the service was over, I met Jasen at the classroom. We spoke with a few people and shook some hands while Lilli tried to play in the fountain. Again I felt disappointed. I desperately wanted to leave. I could not wait to get out of yet another situation where we did not seem to fit.

Later that week, Jasen spoke with the pastor of that church on the phone. They had a long discussion about Lilli. The pastor suggested that we come to that church and start a program there for children with special needs, and that we run it. We had only visited there once! My husband explained to the pastor that we were not in a place to do that right now. I was pregnant, he was starting school, we had just moved here and we were overwhelmed and just plain exhausted. It depressed us, to think that if we wanted to go to church, we might have to start our own, brand new program, for Lilli.

We did not go back to that church, either.

Three churches. Nothing in ads or online about a church with a class for kids with special needs. I thought maybe Jasen might just go and find a church without me, and I could stay home with Lilli. I was born and raised in church, I'd been to church all my life. But having Lilli made it so hard to visit new churches. I felt so discouraged from those three visits and all of our asking around, I just didn't even want to go try anymore.

One day, I saw a neat looking bumper sticker on the back of a car. It was the name of a bigger church about ten minutes away. I looked it up online and found a great website, with cool graphics and music playing. OK, this time we were going to be smart. We would ask before we went. There was a "contact us!" link on the website. I wrote a detailed email, explaining that we were looking for a church, and our daughter had special needs. I wrote our phone number, and sent off the email. No one responded. So Jasen picked up the phone a few days later, and called the church office. He left a detailed message on their voicemail, again explaining about Lilli, and how we were wondering if they had anyone that could be with her in a class to help her while we attended service.

No one ever returned our email or called us back.

That made a big impression on us. I know some of my Facebook friends go to this church, and they might be shocked to know that. I wish someone would have returned our email or phone call at least, and told us nicely that they had nothing like that for Lilli. But we waited and heard nothing. We never went to that church.

We did not know what to do. It was beginning to look like we would not be able to go to church unless we took turns. We continued to ask people we met, "Where do you go to church? Does your class have a place for children with special needs?" No one knew of a church that had a class like that. Maybe it did not even exist.

Do you feel a little tired after reading this experience? Do you think that the average family would continue to try visiting churches, when they have to split up and one has to sit in an empty classroom with their child for the service? Maybe you can understand why there are not many children with special needs in some churches.

Then, my niece gave us the news that changed everything. She'd heard from someone she met at college about a certain church. It was a half hour away from us, in a nearby city. She looked it up online, and they actually had a class for children with special needs. We were ecstatic. All from one little blurb on the website. We checked out the rest of their website and decided it was definitely worth a visit.

I'll tell you about it in "Church: Part 3. The Church that Had a Plan."

December after our move...Lilli was 5 and Chloe was 3... Josh was coming in two months.