Sunday, November 15, 2015

Let Me Be a Part of It

September 2015

I picked up Lilli from school and she was silent, unsmiling.. "She didn't want to work today," the teacher told me. She climbed into her special needs carseat and stared ahead.

This was the third day in a row I had come to pick her up and hear this news.

What was going on? She had been having wonderful days every week. School had been a complete turnaround since this time last year. It had been so good every week until now. I didn't get it. It was something about this week. Something was bothering her but as usual, I had to be a mystery detective to figure it out.

On Thursday, same thing. Only, in addition to not doing her work, the teacher informed me that at lunchtime Lilli took her arm and swept her entire lunch and ipad off the table onto the floor. He said she wasn't upset, There was no crying or anger. She just purposefully swiped everything onto the floor. It's not like her at all. She never does that. So uncharacteristic of her. The teacher told me if it had not been witnessed by the assistant teacher, he never would've believed it. We wondered together if this was part of hormones and middle school general moodiness and angst.

I lectured her on the way home about how everyone has to do work even when they don't feel like it, and why would you throw your lunch on the floor? I'd better not ever hear of you doing that again...etc.

She looked out the window solemnly.

Now that she is in 6th grade, I am more aware that there are factors I need to consider for her moodiness, such as hormones. This is new territory for me. Since she is our oldest, we are navigating through puberty with a child for the first time. As tricky as it can be for any parent, I'm especially stumped because Lilli has so many other factors going on, such as being non verbal, having physical limitations, and seizures. So how am I to know what is going on? If it was hard before, it's much harder to figure her out now that she is a "tween."

On Friday morning, I dropped Lilli off at school and noticed that the teacher was wearing a shirt that was out of character for him. He typically wears the same type of thing every day. "What's with the shirt today?" I joked. I feel comfortable picking on him because he always wears a black tee shirt and jeans. And I usually wear a black shirt and jeans. (Although since this has come to my attention, I have seriously tried to branch out to greens and blues in the last year). We who are fashion-challenged have to stick together.

"It's dress like a decade from the past day" he explained. A flashback Friday kind of thing.

"Oh...I didn't know," I said, feeling kind of bummed. "I would totally have dressed Lilli up for it."

"Oh does she like to do that?" he asked.

"Yeah, well, she doesn't like to wear certain hats...but yes, she likes to be a part of stuff like that..." I was feeling bad and wondering if this was going to be an issue today.

I mentioned that I'd noticed there seemed to be a lot of dressing up in the past few days, and he explained that this week was "Spirit Week." Every day there was a special theme and the kids were supposed to dress for that theme.

"Yesterday was color war day, and the 6th graders wore gray, the 7th graders wore blue, and the 8th graders wore white."

"Oh..." I thought about it. School colors. I'd dressed her in hot pink yesterday. That was the day she swiped her lunch onto the floor.

I looked at Lilli. "Lilli, is that why you were mad yesterday? Because you were wearing the wrong color and you couldn't tell me?" Up until this point, Lilli had been sitting silently, with no emotion, in her seat with the van door open while we stood outside next to her and talked. All of the sudden, a huge smile spread across Lilli's face and she reached over to me, grabbed my face and then grabbed my head. She pulled me toward her in a tight headlock hug and squeezed me, hard, while making a breathy sound that I can describe as kind of a smiley sniff. That's one of her happy noises.

 Huh. That must've been it, I thought. There is no question to those who know Lilli well, that she is always listening to conversations. Her timely reactions like this are meaningful and appropriate.

 Dressing up for Spirit Week. This kind of stuff is important to a 6th grader, special needs or not. I felt completely sad and guilty, even though I had no idea, and sorry for her in yet another situation where she had no control.

"Well, she looks great today, hey Lilli, I like your outfit!" the teacher complimented. Even though he's not into adult fashion, he can appreciate middle school fashion and knows it is important to Lilli.

Lilli wasn't super smiley as she walked through the door with her teacher, but she seemed okay. I said goodbye to her and drove off. But as I drove home, I thought about the whole week. And I teared up.

It was so unfair, that she went to school each day all that week and knew it was Spirit Week and that each day had a theme, but she had no way to tell me. She can only tell me a limited number of things on her ipad. Most of our communication is through yes or no questions. I had no idea to ask her anything about dressing up.

My tearfulness turned to focused determination and I gripped the steering wheel tightly. I realized I needed to go home and get Lilli an outfit, and go straight back and dress her up. I began to think of an idea using what I knew we had at home. By the time I walked into the kitchen, I had a plan. My husband looked at me and knew something was wrong. I explained, and told him I was going to get some things and go right back to the school.

"Go," he agreed.

When I arrived with my bag of stuff, I looked carefully at other students who were walking through the halls. I saw a lot of tye dyed shirts, a girl wearing a sparkly long skirt, and some other outfits that looked like they were supposed to be costumes of some sort. There were two male teachers standing in the hallway and one had a polo shirt on with the collar turned up and hightops on. The assistant principal was further down the hallway dressed like Cyndi Lauper with legwarmers and a wig.

When I walked in the classroom, Lilli was sitting in her usual spot on the floor, with the speech therapist next to her and a pile of Legos. I got down on the floor and took the ipad.

"Hey you, I brought you a hippie chic outfit so you can dress up like you're from the 70s, do you want to go change?"

I showed her the choices I brought. I had a small selection of skirts or jeans, and jewelry and hair accessories. She used the ipad to tell me yes or no for each item, and we went to change. After I had changed her, I saw a little hint of a smile. But she still was upset, I could tell. I think the damage had been done. It was almost too little too late. All week, she had missed out. And today she hadn't gotten to wear her outfit into the building. Now everyone was in class, and there were only two other students in her room, one of them non verbal. Who would even see her? As I tried to give her a happy pep talk in the changing area, she tried to tell me something. I wish I knew what it was.

Her sign for wanting to say something.
Unfortunately, if it is not pre programmed onto
her ipad, she can't tell me.

Trying desperately to get out a word. All she said was "Ggggh."
Could this, the Spirit Week thing, have been why she had been having a tough week and not doing her work?  Was this the reason behind the moodiness and "unwillingness to comply"?

I certainly believed it, but I didn't know if others would. It takes a lot of faith to give Lilli that kind of credit. I like to err on the side of giving her more credit as opposed to less. We would see if this outfit change would make a difference in her day.

When I brought her out, the teacher made a big deal and took her picture. I left.

She can't get the word out. This kills me. Every time. 
When I picked her up later, he told me yes, she had a better day. Her attitude had improved a little. She had done work.

I wasn't surprised.

Later, I talked to her about it all. She smiled and hugged me. I truly think that was it. She wanted to participate and be a part of what all the other students were doing. I just did not know, and since she cannot tell me or dress herself, she was stuck wearing what I dressed her in for the week. I do give her outfit choices every morning, and she approves or vetos the choices. But I never offered gray clothes on Thursday or a 70s costume on Friday morning, so she could not tell me.

The teacher sent me a video that the school had made, talking about Spirit Week and showing pictures of all the costumes from staff and students all week long.

Lilli had missed almost all of that.

It broke my heart.

I know, it is so ridiculous. Such a small thing. So what, spirit week... so what? I tried to tell myself. But my heartbreak was because she could not tell me. And it's because she is already so unable to participate in many other middle school activities. These little things are hard. I want her to be included. I know she is different but she can still be included to the extent that she is comfortable.

I hadn't known there was a school dance until I heard about our neighbor going to it. Lilli couldn't go, could she? I thought back to my own middle school dances. Memories flooded back of acting like a giggly, boy crazy, just-turned teen, running back and forth to the bathroom with groups of girls, checking my hair and lip gloss in the mirror, talking about boys we had crushes on, and dancing until we were sweating. Getting dropped off at the curb out in front of the school and picked up hours later.

There is just no comparison to my middle schooler Lilli. I am navigating through what should be a typical middle school experience in a completely different, unscripted way. Nothing feels nostalgic, like, Oh yes, I remember this from when I was in 6th grade....ah, memories. No. Everything is a step back, trying to figure out how to make the situation work in a much different way for Lilli, and trying a bunch of ways to make it be OK.

Nothing is typical.

And I am dealing with my own feelings and realizations throughout all of this. Can Lilli participate in this? No. Can she participate in that? Maybe in a tiny way. She is in middle school, but she is in a different category. I am trying to balance what she can realistically participate in with what I know middle school is all about.

Remember back to when you were in middle school. Remember those kids in the special class, at the far end of the building and you hardly ever saw them? That's my kid. But her classroom is right in the 6th grade hallway. So she is closer to everyone, but she is still different. She eats lunch in her classroom. Someone helps her eat. She goes to PE class....with the other kids who have disabilities. She could never participate in a regular gym class. Someone who does not know her might think I am just being negative, but no, she really could not handle it. CP and autism is a tough mix for someone  to try and follow directions and participate in a group activity.

"Mainstreaming" or "Inclusion" is a great thing, except for when your child can't really participate with other typically developing kids. That's why the small things are a big deal to me. She can't play sports. Band? Chorus? Nope.

Although I hate to be negative and say "Lilli can't." She..can't do those things. That's true.

But Spirit Week? Yeah, she can participate in that in her own way.

When I talked to the teacher about all of this, he asked me what I thought about the middle school dances. He was possibly being polite. He and I both know it is very far fetched. I would need a special kind of person to help me with this.

If Lilli were to go to a middle school dance, this is what it would look like: She could handle about 7 minutes tops. Maybe only 4. She would be unsure and possibly overwhelmed, but maybe she would love the music and the excitement and being around the other kids, and maybe she would jump up and down and squeal and laugh loudly. She would stick out like a sore thumb. Everyone would look at her and wonder. Maybe some cruel kids would make fun of her, or maybe people would not know what to think. She would have to have a teacher right there with her, holding her hand or arm. She might enjoy the experience for just a couple of minutes, and if, hypothetically, a couple other sweet, amazing selfless girls were to hold her hands and encourage her, she might last for a few minutes more. Not likely, in middle school. Then she would look for the exit and pull on the teacher to leave.

But seriously, would that ever even happen? Other kids being accepting of a special needs girl at a dance? I sadly doubt it.

It's all about experiencing things, for a short sliver of time. And it will always be different for Lilli. She cannot participate in a lot of things. But still, she can participate in a few things.

Lilli went to the beach and loved it for the first hour, but then she was ready to leave, while her siblings wanted to stay for three more hours. Lilli can go to the library for a couple of minutes, but if we linger too long, she loses it. Lilli can go to maybe one store, for a very very short list. Like, two things. After that, she melts down.

So with anything, I think Lilli wants to experience things and take a little "taste." She could've worn gray to school on Thursday. She probably would not have lasted at the pep rally for more than a few seconds. But she would've seen and heard it, to know what it was like.

Tuesday was "Twin Day." Dress like your BFF. Lilli doesn't have a bff. Another stab to my heart. Will she ever have a bff? The teacher had dressed like one of the other students that day. I remembered now, as I reflected on the week. He had explained it, and I'd said, "Oh, well who is Lilli's twin?" He said he didn't know. I did not think too much about it until Friday, when the week had culminated into a disappointing realization. My neighbor told me later that the 6th grade girls had come up with a plan so as to not leave anyone out. They all wore khaki shorts and navy tops so that they would all be "twins" together.

I didn't know.

What she wore on "Twin Day."  But no one was her twin.
On Twin Day, Lilli had worn a cool new pair of coral colored jeggings I'd gotten her and a black and white tunic top, with a matching coral necklace. No one else was dressed like Lilli. Had she noticed? If everyone was talking about it, sure she noticed. That day when I picked her up, the teacher had told me she refused to do her work and they could not figure out why.

I think I know why.

So, the teacher did apologize and he felt bad, He did not think Lilli cared. He promised to send me the school news each week so I would know about special days and events.

As for the school dance, I guess we will just put that idea on hold for now. It is one of many situations where Lilli will miss out. I can't take her. I'm her mom. I know that's totally not cool. And maybe she will get to go one day and try it, or maybe she will never go.

This struggle I have as her mom will probably never go away. A parent wants a child to experience life to the fullest and follow their dreams. I am ok with saying, right, she cannot try out for the cheerleading squad. But I also think we all should lean towards giving someone the benefit of the doubt. So here is why I wrote this post. For all the parents, teachers, therapists, or anyone who has the opportunity to let someone be included. Don't assume they do not care. Especially about the little things. Try to include them. Even a few minutes is great.

Sometimes, the "little things" are all they have.

Lilli with a makeshift 70s outfit, right before I left.

The Next Step: A New Ipad

April 21, 2015

When we first moved here, we had a meeting with the new school district about Lilli.

In that very first meeting, (one of many to come) they asked me what we needed. The director of special education asked me if Lilli would need a communication device. She wasn’t just being nice, although she was extremely nice. She most likely asked me because the IEP, a legal document, stated that Lilli needed a communication device. 

Of course it is important to have this in writing. It means that the school district has to provide one for her. But… we had the NovaChat. So technically she didn’t need an ipad. She had the ipad for four years from the previous school district, but we had to give it back when we moved. I had asked the previous school district if we could please buy the school’s ipad to take with us when we moved. I figured, it's old, it's used, maybe they would let us buy it for a fair price. We had it for four years, and it felt like it was Lilli’s. But it wasn’t.

They said no.

I really didn’t have much time to waste lamenting about their decision and the loss of the ipad. What could I do? The answer was a firm no. I had to move on. I had to make plans.  

I took screen shots of as many of the speech app’s screens as I could until it felt like too many and I needed to stop. I took all the pictures and videos off of it and saved them to our laptop. I watched a few of the video clips and got sentimental about how far Lilli had come in the years since we had that ipad on loan to us.
This screen was used by the ABA therapist to ask Lilli questions. She moved the blocks around so they were never in the same place. She would ask, "What's your name? How old are you? What is your brother's name? When is your birthday? What does your dad do for work?" And Lilli would independently find the right answer and press it. This proves she can read. Or at least recognizes and reads these specific words that she has been taught.  I will stress that they practiced on this page a LOT. She was taught this and practiced it multiple  times every day with assistance until she knew it and could do it independently. Maybe this is one creative way to teach a child with autism how to read. 

I hope someone reading this might be a teacher or school administrator who has the power to change a student’s life like someone changed ours. It was a principal who looked at me and said all those years ago, “Well, that’s it. Lilli needs an ipad. Let’s get her one.”

That principal gave us a priceless gift. She gave Lilli a huge chance that we could not give her at that time. It truly was life changing.

I wasn’t sure if we’d be getting another ipad anytime soon. With moving, buying a house, and many other expenses we had at the time, there was no way we could buy our own ipad right away. It might be a long time until we could save up for one. Should we take a chance on a used one? I looked on Craiglist. What about a refurbished one? I looked online at Best Buy and EBay. What about insurance programs? I did not know if getting a used one without an insurance plan was a good idea. We had already been through that before, with one ipad put under a running faucet, and another ipad dunked in the bathtub.

It wasn’t just the ipad, we would need Proloquo2Go, the $200 speech communication app. Also a good strong case to protect the ipad, and a screen protector. This could all add up to well over $800, easily, depending on what type of ipad we chose.

Even so, I wanted to remember what it all looked like, in case we got another ipad and I wanted to program it all the same way again. I needed to document it all somehow.

The whole reason we got the Novachat in the first place (which was paid for by health insurance as medically necessary equipment) was in case we moved out of the district and we needed to give the ipad back. It was kind of like our back-up plan. And now it was actually happening.

I could not believe how much was on that ipad. There were hours, days, months of work put in by the therapists and the teacher and myself, making buttons, taking pictures of Lilli’s things and putting them onto new buttons. It took me a few hours to copy things and then research how to delete all of our information off of the ipad. I erased the entire ipad and put it back to factory settings. It was sad for me. It felt like a total loss.

All of these buttons? It takes time to make each one. It takes time to put all this stuff in there.
There was a lot of time put into her old ipad. There were hundreds of buttons. It all got erased.

Except that it wasn’t a total loss.

We had gained valuable experience. We now knew so much more than I ever imagined I would learn about using an augmentative communication device. This was yet another stepping stone. We were moving closer to our goal of Lilli being able to communicate her thoughts to us clearly. The only problem is, we didn’t know what the next step was. It wasn’t until we moved that I realized what the next step should be.

We needed another ipad.

I explained in the meeting about all of this, but I didn’t ask for an ipad. In that meeting, my focus was on something completely different: Lilli’s happiness. I know that it seems trite to want my child to just be happy at school. It almost seems apathetic. But we had just had a year of daily extreme unhappiness (crying, collapsing on the floor screaming or sobbing, refusing to work) with new teachers. I wanted Lilli to turn the corner and start fresh with a new, happy attitude. I wanted an ipad for her, but I wanted her happiness way more. So when the topic of the ipad came up, I didn’t say much. She had been using the NovaChat for some communication anyway. Only some. Better than none. She used it to tell us yes or no, choices of food for meals, sometimes she used it to tell us she had to go to the bathroom, and mostly she used it to make choices for movies and music. It was progress. She had learned about categories and using describing words and action words. She had used it to take to school and say hi and do show and tell. Her homebound teacher Leslie had used it for spelling and math. We had worked for a long time to help teach her about expressing opinions and making decisions with the NovaChat. 

It was progress.

Lilli had used the NovaChat for many purposes with her teachers and therapists. But still, I could not shake the feeling that this was not the best device for her to communicate effectively. It just wasn’t as easy to use as the ipad was. She couldn’t even turn it on all by herself like she could turn on the ipad. I was not sure what the answer was, but I was pretty sure it might be that we needed another ipad.
But this time it would be slightly different. I knew what we would need to do when we eventually got another ipad…  I just figured it would be a long time until we would actually purchase one.

The teacher scheduled a meeting with the speech, occupational, and physical therapists. It was not like any of the many meetings I had attended in years past. I'll tell you what it was not: I was not sitting there feeling…how do I describe this…like I was invited to be there and listen to others. Like the meeting was about my child but someone else was running the meeting. This felt different. They were there to listen to me. I almost felt like I was in charge of this meeting. The teacher had suggested that I bring my laptop as I had before, and show the therapists the videos I had of Lilli in therapy and school sessions. There were polite introductions, and then they all looked at me and waited quietly, ready to take notes. It was really unbelievable. 

I had the floor.

Where to begin? I told them some things about Lilli, they asked a lot of questions. I showed them pictures and told them what Lilli was like, things she could do, things that frustrated her, things she loathed. I turned on my laptop and showed them many short video clips in a row, most were about 30-50 seconds long.

Before the meeting, I went through years of video clips and chose the best ones to show what Lilli could do. These were my final choices. They were all about 30 seconds long. I was so glad I had taken these videos. There is no better way then to show someone what Lilli can do. Much better than telling someone or having them read something.

Some were videos of Lilli jumping, walking up steps, selecting category buttons on the communication device, learning to answer multiple choice questions on the ipad, and listening to music with headphones on.  There were others. 

I felt a little awkward at times, like, when do I stop? There is so much to tell. I told them about how Lilli does not like to be talked to in a baby voice, like she is a toddler or like she is dumb. We talked about her interest in fashion and her sense of humor. I told them about my frustration in not knowing what reading level she is on, and that there really were no appropriate assessments for Lilli.

And I told them that I believe Lilli will talk one day.

“I know it sounds crazy, but I don’t care what anyone thinks. I pray for this every day, and I just believe she will talk one day. I just do.”

They smiled politely and said nothing.

I appreciated that they were silent. There isn’t much to say about that. Not right now, anyway. It’s my dream. No one can talk me out of having a dream.

Then we talked about the ipad, and how far Lilli had come in communication over the past few years. I explained PECS…they had heard of PECS (Picture Exchange Communication System by Lori Frost) and seemed to nod like it was sort of familiar, but none of them had training with PECS. I mentioned Lori Frost, and one of them picked up a pen and wrote something down.

The speech therapist had heard of Proloquo2Go, but hadn’t ever really used it. I explained about how we used ABA to get Lilli to use PECS and Proloquo2Go on the ipad. The OT had heard about ABA but no one in the district did ABA or had been trained to do ABA.

The tech people were android people. No one knew about Apple products and no one had ipads here.
I wasn’t discouraged, I was kind of in that “It is what it is” frame of mind, focusing more on how to help Lilli transition into this new classroom and be a happy, willing student.

I never dreamed that they would buy Lilli an ipad. And then Proloquo2Go.

This is the email I got from the teacher about a week after the meeting:

I just had a conversation with Mr. [the principal] and it appears we will be able to purchase an iPad for Lilli’s use in the classroom. I will recommend that we buy the one with the most memory and features. I will need your help to recreate (as best we can) the iPad you used in SC that was so beneficial to Lilli.
This may take a few days but I wanted to share the good news.

I was blown away. Anyone who is reading this that might be in our type of situation should know that a small school district can do this type of thing. It is only a matter of the right staff member with power being involved with your child's education.

The past two school districts we have lived in were small, with good people in place. Not a ton of money, mind you. Just good people who knew about certain funding that can be used for this type of thing. Not a lot of red tape, not a ton of paperwork or meetings to go through. Just one teacher going to the principal and saying, “This kid needs an ipad. How can we get one for her?” and a principal saying, “Yes, I can find money for that, no problem.” When I tell people about our experiences, I usually get shocked reactions, and teachers in bigger districts say things like, “That would never, ever happen in our district. That is amazing.”

Why is it so amazing? Shouldn’t it always be like this for any student?

If you had a child, and they really needed something that could really benefit them in their education, shouldn’t they get it? Is it really just that simple?

If I hadn’t been a classroom teacher before, I might not have as much of an understanding of how things work behind the scenes. I know from experience that there are things that go on behind the scenes. There are budgets, there are people to please, there are legal issues, there are reputations, there is always a money issue. There are many many issues in school districts. I want to say that from a parent’s perspective, it is so refreshing when things are just kept very simple.

What does your child need? Does she need an ipad with a $200 speech app? Has it really helped her with school and communication in the past?  Ok. We’ll get one. Hopefully next week.

That’s a good school system. That’s meeting the needs of the child.

This is the next step in Lilli’s life. The teacher is going to give me the ipad next week to completely program Proloquo2Go by myself, since no one here knows anything about it. Then we will have a meeting with the speech therapist, and come up with goals for getting Lilli to use it. I feel that Lilli should not even see the ipad until it is ready and programmed. I will have to take it home and work on it when she is not watching.

I feel strongly that we should put NOTHING else on the ipad except the Proloquo2Go app. No Youtube, no movies, no games. Not at first. We learned from last time that these things are a distraction to Lilli. If she gets to choose between telling us something with Proloquo or playing on a game app, she will always choose the game app. It is too much of a temptation for her.

This ipad will have strict rules from the beginning. It will just be her voice. No other purpose. Nothing fun. Then she will have to use the ipad every time she wants something, to get what she wants.  We will use everything we have learned in the past four years, to make progress toward independent communication.

This is the next step. And it is the next chapter in Lilli’s story.

I think it's going to be a really good chapter.

The Betterness of it All ...Catching up on Spring and Summer 2015

I have some serious catching up to do. You are all wondering what the heck happened with us. I've left my blog readers in the dark, I'm sorry. My facebook friends see happy pictures and glean that things here must be going pretty well. I have not shared much publicly about the details. I confess, I have still been writing. I just need to get my act together and post them. This post right here has been holding me up. I could not figure out how to sum up spring and summer and everything that happened without writing a book. So this is kind of like a few "chapters" from April through the summer. 

July 2015

I woke up in the middle of the night, smiling in the dark about good things.

We had been living in our new home for six months now.

For those past six months, I had been waking up in the middle of the night feeling anxious and uncertain. On that morning in July, I woke up thinking about only good things. That was a gift. It meant something to me. It meant that maybe we had turned a corner.

I wrote in March that I was looking forward to the day when I would be able to write the words, "It got better."

And it did get better. Overall.

I wasn't waiting for things to be perfect, great, or even good. I was waiting for the day when I felt like we had finally come up for air.

I wanted Lilli to be settled into her new life and routine and be happy. I could try and describe to you what it's like to have a non verbal eleven year old crying loudly for much of the day everyday, bored, angry... so dependent on us in all ways. Wandering around not knowing what to do with herself, watching endless movies, sobbing and shoving me in anger.... I just can't do it justice.

So many details, so much emotion, so much hard work, the months that came before July. I can't even go through all of the details in a blog post. It would be sixty paragraphs long and you all would be like, this is so depressing, when will it end? 

But Lilli started school in the spring, and it was good from the very beginning. It was good. She was happy. When Lilli is happy, we are happy. When Lilli is crying, it affects us all. It is frustrating and unnerving and unsettling, because much of the time, we cannot figure it out or fix things.

She cried for months after we moved here. So when I say she was happy to go to school, it's a big huge deal.

Back in April

I sat in the van in the parking lot every day for three weeks in April, while Lilli went to school. It was only for a couple of hours. I had to or she wouldn't have been allowed to attend school because of a hold up with a legal document about medication for her seizures, waiting for a doctor appointment and insurance issues.

Well, I did not have to. I wanted to. And it was worth it.

I sometimes look back on that time with a little nostalgia. Mostly because I had a newborn, and I spent much of that time holding and snuggling him. But sometimes I look back on April 2015 and I just shake my head. Really, overall I think the whole experience was just another way of making me thankful for what we have here in America. We just assume our children will get to go to school, because they do - it's the law. Except that for a child with special needs, it's not always easy. Most times it's actually really hard. We special needs parents don't focus on new backpacks, fun new outfits and shoes and school supply lists and who is the room mother....that stuff is way down on the bottom of a long list (if it's even on there at all) after medical stuff and making sure my child is safe, special diets, communication devices, adaptive classes and equipment, and what happens if my child has a seizure, a meltdown, or poops in her pants at middle school.

Special needs parents worry about a list of "other things." Getting to go to school is monumental.

Getting Lilli to the point of being able to go to school was one thing (I'm mostly talking about her autism and being able to even handle going to a new place with new people, and use a device to communicate her needs.)

Getting all the documents and legal stuff in place was another. She actually was not allowed to attend school unless I had an in-state doctor's orders for administering her emergency seizure medication if she were to have a seizure at school. This was much trickier than I had anticipated. I will spare you the ridiculous details of the hurdles. Really, to sum it up, it took dozens of daily phone calls for many weeks, and ultimately my unconventional decision to simply sit in the parking lot so she could walk into the building and go to class. While I waited. For two hours.

It was a memorable time for me. In many ways, I can't believe I did that. But I had to. I am not a supermom.

I am a desperate mom.

I watched my unhappy eleven year old flounder and sob and melt down in our new home for months since we moved here. She needed this. She needed to go to school. So I just did it. I sat in the parking lot for two hours every day for three weeks.

I sat with my five year old, Josh, and we read books, colored, talked, and watched movies on a mini DVD player. I nursed the baby and just held him, many days while spring rain poured down the windows around us.

It was kind of forced rest from unpacking. And I needed the break. It wasn't really "restful," because keeping an energetic five year old entertained for two hours while holding a baby in a teeny space is challenging and requires creativity, but it made me just sit with my sweet boys and do nothing but spend quality time with them. And the pay off was huge: I got to see Lilli bounce into the school all smiles, and bounce happily back out again after two hours.

Holding a baby in the van for a few hours on a rainy April morning. Not so bad. 


When Lilli started school, I was nervous for her. I wanted her to be happy, to love the teacher, to love the other kids, to not be overwhelmed by the newness of it all. Lilli's teacher emailed me long detailed messages about how she did, who she interacted with, what she did. I was in tears, joyfully sharing the news with others, telling them of the great news that Lilli was finally happy and doing well in school.

This was what we had wanted. Happiness.

My, how our perspective has changed over the years. We, her educated, strongly advocating, go to every three hour IEP meeting and pour over every word in every document (both of us former teachers), heavily involved parents, just wanted Lilli to go to school and be happy. Forget about the goals and all that work stuff for now. Let's just get her to walk into the actual school building willingly and want to be there.

Lilli went in with her little backpack with her her favorite cheesepuffs, a potty button, and  "Yes No" choice cards. I wish I would've taken her picture as I watched her bounce away with her teacher each day.

The very first day in her new school, the teacher asked Lilli if she needed to use the potty, and she tapped the "no" card. Each day, the teacher asked her, and sometimes she touched "No," but sometimes she would touch "yes" and the assistant would take her, and she would go. The teacher told this news to me like it might not be that big of a deal, but it was huge to me. He did not know the history behind hard we have worked to get to this place of simply telling someone yes or no about having to pee. She did not even know these people, and she was telling them accurately if she had to use the bathroom.

In our world, Lilli telling new acquaintances that she has to use the bathroom is monumental.

Progress. Yes, she had made progress even since last year.

Lilli made friends with the other students very quickly. The teacher explained that at this point in the year, the kids were nearing the end and it was great to have a new student come in and create a little excitement in the classroom. (Such a positive attitude! You would think a teacher would have had the attitude, oh no, a new student? What? At the very end of the year? How inconvenient.) But no. That is not how things went down. Not at all. Lilli got lots of attention and the whole experience was very happy for everyone.

The other students sat on the floor with her and listened to her music with her and built Lego towers with her. Lilli delighted the new teacher with her affection and laughs. She bounced happily into the building every single morning. All of the positive bits of news that came from the teacher each day buoyed my spirits and confirmed that this was all going to be a good change for Lilli.

I knew it was the "honeymoon period" and that it would not always be all happiness and Legos, but for now, it was good. She was happy, And so was everyone else.

Good things. The betterness of having a great new teacher and fun new classmates. This was our spring, and it was good.

Then came summer, and school ended.


There were great things about summer. Like how we were getting things done around the house... ripping up nasty carpet and unpacking and rearranging...looking at paint samples, fighting about paint samples... putting the paint samples in a drawer and just...not painting.... but it's been fun to fix this place up and know that we are going to live in this house for a very long time. We can take our time to pick out the color of the walls, because we are settling here. No more moves. We moved boxes and furniture around, and then we moved them around again. Pretty much all summer we just moved our junk from room to room. We are not very good at decorating. At least there are less boxes laying around now. Sorta.

We celebrated the 4th of July by having family come over. We set off our own fireworks instead of fighting the crowd, and it worked out better than I thought it would. We were not sure how Lilli could enjoy fireworks. Only one time did we ever see her enjoy looking at them, which was when we were in Disneyworld. Being in a crowd of people is always a risk, and being near lots of smoke from fireworks could trigger a seizure. So we have to get creative.

On this 2015 fourth of July, Lilli watched small fireworks through our front picture window as my husband set them off in the driveway. She was interested, and stood with me and watched the fireworks and sparklers through the glass.

Watching our little fireworks in the driveway through the window.

Sometimes I get caught up in thinking that we need to do what all the other families around us are doing, like get in the car and drive to a field with hundreds of other families and watch the awesome huge fireworks while sitting on a blanket together. But that just doesn't work for us. That's not our family. With Lilli, we can't do that. And it's ok.

Our way of celebrating was great too.

The best thing about the summer was that we moved to a street with wonderful neighbors. Josh and Chloe played outside every day. They would beg to go out as soon as they woke up. They played for hours and hours with the neighborhood kids. It was a dream come true for me, to have this for my kids. We own a Wii. They played it less than 5 times total the entire summer. They had hardly any screen time all summer except for movies we checked out from the library. They tromped through the woods and played until it became too overgrown with summer leaves. They swam in the little KMart pool we had and jumped on the trampoline. We went nowhere. We did nothing special. It was the best summer ever.

Except for Lilli.

Lilli did not have the best summer ever. She does not do well with a go-with-the-flow summer schedule. She did not want to go in the pool much, only a few times. She had a bunch of seizures all summer, and that was tough. Really tough.

She was just so unhappy much of the time, and all she wanted to do was stay inside and watch the same movies over and over. It was hard for her. If I made her go outside, it usually did not last long. She would melt down and collapse and sob, yanking at the door to go back in.

Lilli had summer school a couple of hours a week for six weeks, and that was a bright spot in her week. She loved the teacher, and she did great. I was so thankful the day the teacher brought Lilli out to the van after a school session and said, "She's very smart! She knows what's going on, she absolutely does." I appreciate when others point out Lilli's intelligence in front of her. Lilli needs to hear it. It validates her. You should see the reaction from Lilli whenever someone sincerely complements her brain. She so wants others to see this in her.

I could not wait for school to start for Lilli. She needed it so much. Summer yanked me in different directions every day. I wanted Josh and Chloe to have all the outside playing time they wanted. I wanted them to experience what every kid should during summer months: catching fireflies, riding bikes, swimming, playing outside and imagining.

I wanted Lilli to have a schedule and activities that she enjoyed too, with other kids her age. I looked into therapy horseback riding, since that is something she has always done and enjoyed.

Therapy Horseback Riding

$50 a lesson here. A lesson. Actually that's the reduced rate, because it is technically $100 a lesson but they have some sort of funding that lowers it to $50 for a 30 - 45 minute lesson.

I don't know what I'm going to do about that one. I need to do more research. I just assumed when we moved here that she would continue with riding. I play little mental games with myself and try to pretend by thinking, $200 - $250 a month is no big deal, so what if she just sits on the back of the horse while someone else leads her around a ring for a half hour, it's good for her. It's helping her with balance, self confidence, she's interacting with others, she has something to look forward to, she has something to be proud of, she has an interest besides movies, it gets her outside...the list of positives is long.

But $200 a month IS a big deal. We used to pay $10 a lesson for a wonderful program where we used to live. They did a lot of fundraisers and kept the fees low, bless them. I really don't know how other families with special needs can afford riding therapy. Maybe they do their own personal fundraisers. I have thoughts about doing a fundraiser for about ten seconds and then I get overwhelmed and stop thinking about it.

So Lilli didn't have therapy horseback riding this summer. I'm still working through that one. It's the one "extra cirricular activity" (even though it's technically therapy) that Lilli looked forward to each week. She can't participate in sports, dance, or other typical activities like other eleven year olds can. I want to be fair to my kids and let them each do activities. It just doesn't always work out to being fair.

I will figure this one out. Eventually. There are still so many things to figure out.

It's Better

The summer had ups and downs, but that morning in July, I took my first sigh of relief. We had come through a stressful row of months of transition, and the dust was finally settling. Even though there were still some tough things to work out, I felt hopeful. Lilli would be okay here. She would start school in the fall and hopefully have a happy year in the sixth grade. Even though she struggled through the unscheduled, summer days, I knew things would get better when we started the school routine in August.

When I bought school supplies for Josh and Chloe, I did not have a list for Lilli. Lilli doesn't use supplies like Josh and Chloe do. She can't write with a pencil. She didn't need folders or pencils, erasers or notebooks or glue. For her self-contained class of four students with special needs, there was no list. So I bought her a brand new backpack and it sat empty, next to the stack of supplies I had to buy for the other kids.

Lilli is always in a different category, and it's always hard to try and make things "even" or similar to what her siblings are experiencing. Even so, she seemed excited about that backpack and her new ipad.

It would be a better school year for her. It was already better.


For the first time in Lilli's entire life, she has some girls who are extending friendship to Lilli. They are friends with Chloe and Josh, but they try to include Lilli too. They ask if she can come out to play, if she can come jump on the trampoline with them or they push her on the swing. This is priceless to me. It is not easy to be friends with a child who has autism and cannot talk. Any child who extends friendship to Lilli, and is willing to step out of their comfort zone to learn who Lilli is and spend time with her, is an absolutely amazing young person.

It's good. It's better than better. Having another child show friendship (any kind, even the very smallest acts) toward Lilli is the sweetest gift ever.

My favorite picture from the entire summer. Most people know that Lilli puts her hand on her neck when she has something to say but she cannot say it. Notice that this is a "two-hand" on the neck gesture. Like she is shouting. Or just saying something with excitement and delight. The look on her face is priceless. She is playing with other kids. They are including her. This might have been the best moment of her whole summer.

Therapy and Doctor Stuff

Lilli charmed the new pediatrician here. By the time we left, she was giving the doctor hugs and kisses, and we were all chuckling. The waiting room time was stressful, but meeting the doctor made it all worth it. Wow, right off the bat, we found a fabulous doctor. What a gift.

Working through the ridiculous insurance issues still, we got therapies in place and Lilli started receiving speech, occupational, and physical therapies. The speech therapy was what I was most concerned about. It is not easy to find someone who will have the knowledge and expertise of augmentative communication and believe in Lilli's capabilities and potential.

We were blessed to find a wonderful speech therapist, who stepped right into place where Lilli had been in therapy before we moved. Speech therapy has been amazing.

It's good. So good.

An Unexpected Surprise

Not long after Lilli began school in the spring, they ordered a new ipad for Lilli. I just now remembered that I wrote a blog post about that, while sitting in the van for two hours in April every day when Nate was napping. I will have to look for that post. The new ipad brings good news and much more to tell.

I had fears about moving here. But more than fear, I had hope.

When the future is unknown, you can choose to have fear or choose to have hope. You don't know what is going to happen. It might be hard. It might be a bumpy ride.

But it might be better than what you already have.

Tuesday, September 1, 2015

How a Necklace Led me to Thankfulness

I carefully unclasped my daughter's necklace and took it off of her neck before I put her in the bath. I had put the necklace on her at 8 am, before school, and she had worn it all day until 8 pm.

Before she got out of the car for school in the morning, proudly wearing her necklace.

This was the first time my eleven year old with special needs has ever in her life worn a necklace all day for that long without ever once trying to rip it off because of sensory issues.

It made me thankful for the amazing therapist who used to patiently help my daughter to try and get used to the feeling of wearing jewelry without yanking on it and breaking it. So I sent that therapist a message and a picture of her wearing the necklace. We texted back and forth, rejoicing together about something so small - a little necklace - but it was huge to me.

Still wearing the necklace all afternoon...

Why such a big deal, to learn to wear a necklace without ripping it off? Because it was important to my daughter. She loves jewelry and fashion. She wants to wear necklaces. She had to learn how to wear one, and it took years to get used to it.

When I unpacked her backpack from school, I read a note from her 6th grade teacher that told  me she worked on spelling words and counting money values. It made me so thankful for the sweet patient teacher who helped her get this far. She believed in my daughter's hidden intelligence, even though she is unable to speak.

The necklace my daughter wore was a gift from the patient teacher I was remembering. She gave it to her on her last school day with my daughter, inside an engraved music box that says "You will achieve great things."

I sent the teacher a message with a picture, told her about how school has been going, and thanked her for teaching my daughter years ago.

"You will achieve great things." Every time I look at this, I tear up. Such a gift, to have others believe in my child.

I unpacked my son's kindergarten backpack and pulled out the pages where he had so carefully traced numbers from one to ten. I thought about all of the meticulous cutting and gluing he has been doing at home on his own - for fun - over the last few weeks. The scraps all over our floor each day are evidence of this. It made me thankful for the occupational therapist who lovingly helped my little guy practice using scissors, draw with markers, and get used to the sticky sensation of glue that he hated so much. I thought about all of the time she spent helping him learn to focus on and complete an activity or project. If she could only see all the projects he has completed since her last OT session with him many months ago.

I sent her a message and thanked her.

I didn't teach my son to do this. Other people did. I know who they were, and I'm thankful.

I thought of the conversation I had with my son's kindergarten teacher, where I told her that he had had a severe speech delay and many people worked very hard to help him though his early years. She was shocked. No one would ever guess that this little man, who delights me with every adorable conversation I have with him, was extremely frustrated in his inability to communicate basic needs and wants not so long ago, and that I spent long minutes deciphering and guessing his requests. Often with tears.

I sent a message and thanked the speech therapist who helped both my son and daughter make amazing strides, through her skill, encouragement, and unwavering belief in their potential for communication and expressing intelligence.

I think of every teacher each of my children has ever had. I remember them all, their encouragement, their hugs and smiles for my children, their patience, their love.

These people my children have had come alongside of them to help them learn and grow...they are gifts to me. And there are so many.

I think of all of the therapists and teachers we have ever known for all of our children. How do you thank a person for touching a life? How do you tell a person that their encouragement, skill, and commitment to help your child has forever affected the entire family and lives of all who surround this child?

Teacher appreciation week falls miserably short. End of the year teacher gifts are a paltry offering that can never express our immense gratitude. Therapists do not even have a special day or week of appreciation. Dance teachers, music teachers, really anyone who has ever loved my children and helped them in any way, even if it seemed small...these are all people I wish I could forever thank as I watch my children grow and succeed. The love is what I remember most. I am thankful for those who really loved my children, because that love helped them to grow. The faces of many are popping into my mind, as I think of those who have loved my kids.

The only thing I can think to do is to continue to thank these teachers and therapists as my children grow. I will never forget them. I will never be able to thank them enough. I will never be able to show them all that they did to help my child.

All I can do is show them pictures, and tell them, "Thank you."

If any of them are reading this right now, I want them to know that I am always thankful for them and all that they did. When I look at each of my children, I see all of the people behind them who have helped them become who they are today.

You can do this too. Thank someone. Tell them today, on a random day that is not a "national appreciation day" of any kind. Send a little message. Snap a picture and text it or post it. They still think about your child, trust me.

I know I still think about my former students, and I was a teacher eight years ago, in another state...another lifetime. I look up former students to see how they are doing. I don't contact them, I just look at their picture and check to see what they are up to. Did they graduate? Are they going to college? Did they stay out of trouble? I wonder if they remember me, and how much I poured into them when I was their teacher many years ago. I looked up a few students last spring to see who graduated from a special class I had once. I teared up, to see these precious faces who were once children in my elementary school class staring out at me from the computer screen as teenagers. High school graduates. Young people with big plans. I was so proud! Sitting there in the dark, staring at my laptop screen by myself, my heart was happy for them.

Some students, I was not able to find. I wonder about them still.

If you have a child who has ever had a therapist, or is old enough to have had teachers, you can be sure they remember your child and wonder how they are doing now. Wouldn't it be fun to let them know?
A gift from a former therapist. Loved indeed.
Every time I look at this sign I am reminded about how much that therapist has loved my daughter.

Thursday, July 16, 2015

The New Neurologist in the Mountains

It takes 43 minutes to drive to the new neurologist's office. I drive in silence.

No movie, no radio. Just the voice of the GPS lady giving me occasional directions. I watch Lilli in the back seat as I drive. She looks out the window. Every now and then, she puts her fingers on her chin and smiles. A few times she claps and flaps her arms. She is happy about something, that's for certain. What she is happy about, I may never know. Maybe she is happy to be alone with no siblings annoying her. Maybe she is excited to go for a drive with just me. Although I am not very exciting at the moment.

Maybe she is thinking and hoping about this new doctor. I had already told her that she needed to be kind and smile at the new doctor. That we had heard good things about him. That maybe he could really help us. I have learned that if Lilli smiles and is affectionate and happy when we meet someone new, things are much more likely to go well with that person. I want people to like Lilli. I want them to love her and see her like I see her. I figure, if they see her as I see her, they will want to help her.

This is my reasoning for telling Lilli to make sure to smile and give people hugs. No one can resist her smiles and hugs. Maybe that is desperate or wrong of me. I am desperate. Sometimes you get more help when people like you. But Lilli likes who she likes. She can tell things about people. She sizes them up and gives her love out to only certain few. I do not know her reasoning as to why some people deserve her affection and tight squeezing hugs more than others do. I tell her to be nice to the new doctor today, but I cannot really control what she will do.  I have seen her hug and kiss doctors. I have seen her thrash around and scream at doctors, trying to get away.

When we arrive, I carefully pack up her two bags of important things to get through this visit, and my purse with the secret weapon inside. Not really a secret weapon. More like an emergency tool.

The iphone.

I don't let her see it. I zip it in an inside compartment. She has not seen it in a week. I am determined to keep it hidden unless all hell breaks loose. I need her to be her happy self...aware. Engaged. Not lost in her repetitive Youtube world of watching Elmo clips over and over. If she has the iphone, she will be less likely to look at the new doctor and smile and make him fall in love with her. On the other hand, if she does not have the iphone, she might be screaming.

It's a chance I decide to take.

We walk slowly up the sidewalk. In the reflection of the glass door, I see her foot turning in. I wince because I know it is going to be bad when we finally go to the orthopedic doctor in a few weeks. She will probably need braces again. Maybe even surgery. Don't think about that today. That's later. Think about the neurologist. That's today.

When we enter the building, Lilli immediately begins to get anxious. Like a racehorse, she gets antsy and I can tell she is getting ready to bolt. I hold her hand tightly and force myself to smile at the woman at the front desk. She smiles warmly and directs me down a hallway. As we come to the end, I am dismayed to see that there is a line for registration.

Lilli cannot stand in a line.

She anxiously tries to get away from me while making sounds of increasing distress. I silently pray that they hurry up, hurry hurry. They are used to kids like this here, right? They will not make me feel bad. But no one smiles at me or reassures me as Lilli collapses on the carpet and lets out a loud screechy wail, and then a low gutteral growl and a hiss. The large registration area and waiting room is at a very low level of soft talking in various areas. A constant but pleasant hum of activity with computers, people in line, and parents waiting with children.

Except for Lilli. She is the only person in the room that is howling at the top of her lungs.

Lilli shrieks. I watch the blond woman on the right behind the counter and I detect a flinch and a flicker of something. Irritation maybe. Lilli really is loud, and it is a shock if you are not used to it.

Maybe she is just irritated at her computer. I try to think positively but the negative sounds are quickly squashing any possibility of positive thoughts.

Parents in front of me in the line are busy with their own children and we do not make eye contact. I stand still and mute. Paralyzed by dismay and embarrassment, even after all of these years of experiences just like this one. It makes me feel like a failure. I still do not handle this well at all.

Potty. She might have to go potty, it occurs to me. She is pulling on my bag, trying to get into it. Maybe she is trying to tell me something. I do not have a communication device with me. We are between devices right now. It's complicated. I have to guess, but I am a pretty good guesser.

I step around a person at the counter and interrupt. "Excuse me, we have a 9:30 appointment but I need to take her to the restroom, I'm sorry. I'll be back." The blonde, possibly irritated woman is polite and tells me it's ok. "I'll tell them," she reassures me. She points to the restroom.

I take Lilli across the large echo-y waiting room with high ceilings to the restroom as her cries bounce all around us. And she goes potty. I am ecstatic. A small victory to celebrate. I make a big deal and she smiles and puts her hand on her neck, as if to say, I told you. I was trying to tell you. She is quiet and happy while I wash her hands for her, get a paper towel and dry them off.

When we go back to the registration desk, we see a pleasant gray haired woman. She is courteous. But Lilli loses it again. Again she screams and tries to run away several times. I pull out my insurance card and sign papers while wrestling with Lilli's arm. She growls and hisses at me. The gray haired woman acts like nothing is out of the ordinary. She is busy with my insurance information.

I look right at her and say in a matter of fact way, "She has autism."

I don't do that very often. I just felt like I had to. We were in this huge room with high ceilings, and Lilli's every angry noise seemed to echo off of the walls around us.

"Oh, it's okay," she says.

Several more torturous minutes of pulling and crying go by. I don't sit in the chair to sign papers. I stand and hold tight to Lilli while I sign with the other hand, because she is pulling and trying to run away from me. She has already spied a glass door that leads outside and has run to it several times to leave the building. She might not be able to talk, but she is telling me loud and clear that every inch of her does not want to be here. I glance at a paper sign tacked to the side of the cubicle that has the internet wi-fi password, and for a second I almost cave and give her the iphone. Instead, I remain strong and try to memorize the password in case I need to use it later. If I give her the iphone now, there's no taking it from her without a huge scene.

Finally we are finished with the paperwork, and the woman points to the couches in the waiting area. As soon as we make it over to a red velvety couch, I pull out our mini DVD player and turn it on. The DVD player is way less addictive than the iphone. I cannot explain the difference very well but it's just different. Lilli quiets for a moment while she watches the menu screen pull up, and just then a door opens with a nurse saying, 'Lillianna?" It was so quick. Lilli hadn't even had a chance to calm down and watch the movie.

Crying starts again as we get up and I put the DVD player back in the bag.

Off we go, with Lilli pulling my arm and crying through the doorway. The nurse takes us to a scale and asks me if Lilli can handle stepping onto it.

"No. 60 pounds," I say, and I keep walking. Then I think, maybe it's 65.

"We really need her accurate weight," she insists nicely. I put Lilli on the scale and she lets out a loud angry scream. Down another hall to the examining room. The sweet, pretty nurse tries to soothe Lilli. 'It's okay baby, no one's gonna hurt you, you're okay, sweet baby..." she coos at her repeatedly.

I was wrong, I think to myself. She's 63 pounds.

I ignore the nurse's cooing and scan the exam room carefully. Perfect, there is an outlet next to a small table. I put the dvd player on it, plug it in, and pull out three legos for Lilli. Lilli is all of the sudden content. She watches the movie and places her legos on the table in different positions. The nurse asks me a few questions. Then she asks why we are there.

"We just moved here. She is a new patient," I say. The nurse welcomes me and smiles. I can't find a smile at the moment. I'm on edge.

She leaves and I rummage around in my purse for a few things. I don't smoke, and I only rarely drink soda. I don't take meds. But I need something, anything to distract me and help with the anxiety. I don't even have a piece of gum.

I know what I need.  I need a Kit Kat.

I don't have a Kit Kat. So I take a drink of my bottled water.

The doctor comes in softly. He shakes my hand. He says a kind hello to Lilli and pats her on the back. She glances sideways at him quickly. She is absolutely sizing him up. He is a soft, gentle talker and immediately begins to ask questions. I answer dozens of questions as best as I can. I am sitting in a chair in the corner, across from the doctor who is standing at a sort of makeshift podium, taking notes on everything I say. I smooth my black skirt over my knees (I dressed up to try and appear educated and concerned) and try to focus and answer every question very carefully.

Lilli is listening to every word I say. Occasionally she puts her hand on her neck as if to interject. She seems to be especially quiet and attentive when I tell her birth story. She has heard it many times. I hate for her to hear it as I tell about all of the scary things that happened at her birth. I do not try to soften it. I tell the facts. The number of times she stopped breathing.  How the pediatrician figured out that she was having seizures in the nursery. She number of days she was in the NICU. The medications she took. The hospitalizations. The many scary seizures and all of the various kinds and symptoms. All of it I tell with no emotion. Just the facts.

He writes it all down as Elmo sings Elmo's Song in the background.

He asks more questions. What are her triggers. What are signs we notice before she has a seizure. He does not look at me like I am crazy as I tell him hesitantly that she has hiccups before seizures sometimes. He tells me that is certainly a sign of seizure activity. This is the first time I have ever had someone confirm the hunch we have had for years. I tell him as much as I can, in a calm, factual way. I describe what the different seizures look like.

I hate doing this in front of Lilli. She is listening.

I tell him that most of her seizures are when she is sleeping. Either napping or at night. He asks me how we monitor her to make sure she is not having a seizure in the middle of the night. I tell him that she sleeps in our room with us.

And then I have to stop talking for a moment and collect myself. Because this is one of the hardest issues we have faced. And I cannot help but feel beyond desperate for change and hope.

I tell him that we have tried many things, even waiting for several years for hope of a seizure alert dog. He shakes his head and tells me we should not put our complete hope and trust in a dog, that he prefers that we use a monitor. Again I cannot speak for a few seconds. I swallow and tell him that this is very difficult for us, to have her in our room and monitor her 24/7.  But this is what we do, and this is how it is. We watch her.

We talk about medication. We talk about surgery. He calls her seizures "Intractable Epilepsy." Which means that we have tried four medications that have not ever controlled her seizures. I tell him about how we do a special diet. I tell him how chiropractic helps. Her seizures have gotten better. But they have not stopped. I tell him that we have cut out as many triggers as possible.

Still she has seizures. And she is on a medication that is causing her problems.

We talk about getting her off of this medication. We talk for a very long time, and I am amazed at how much time he spends with me and with Lilli. It feels like he has no other patients at all. He does a few magic tricks for her with magnetic blocks on a string. She laughs and reaches up and hugs and kisses him on the forehead. Then he takes out three balls and juggles, and she looks away. He tosses a ball at her, and she does not even flinch. It lands on her lap. He pulls out a wind up snail, and makes funny comments about it. He winds it up and lets it walk down his leg. She looks away, silent and unsmiling. He takes out a flashlight and pretends to blow out the light. She turns and buries her face in my neck.

"She has autism," he tells me gently. He does not know that I already know this. It's ok. I love that he spent time actually getting to know her instead of reading her file. It's refreshing.

We will do tests and meet again and come up with a plan.

We leave, and he gives her the magnetic toy to keep. She reaches up and smiles and hugs him. She wants him to pick her up. I can tell he likes her. She has succeeded in capturing his heart. I have never seen her interact with a specialist like this before.

We go to check out, and she cries. We go to the lab and have blood drawn to check her medicine levels, and I hold her tightly in my lap and hold her arms as she thrashes against me and screams and cries with all her might. The two lab techs are fast and expertly draw blood. She freaks out about the bandage and tries to rip it off. We leave, and I cannot describe how relieved I am to leave that building. I'm sure Lilli is relieved too.

I get in the car and get Lilli settled in her carseat, with a few cheesepuffs and a movie. Then I sit and take a big swig of water and eat the rest of the mini chips ahoy cookies I found in my bag. I sit and stare out of the windshield, worn out, eating cookies.

This was one of our better doctor visits.

As I drive home, I see mountains all around and ahead. I can't believe we live in such a beautiful place. I look up at the rolling green mountains ahead, and a verse pops right into my head. I lift up my eyes to the mountains. Where does my help come from? My help comes from the Lord, the Maker of heaven and earth.

What if God brought us to the mountains to help Lilli? What if I am looking at these hills and mountains and this place is the place where God has brought us to do huge things in Lilli's life? What if this doctor is going to really help Lilli?

My eyes well up with tears. I drive home, teary the whole way.

Later when we are home, Lilli has a seizure. It is a small one. Short.

I think about the doctor, and the small new seed of hope about her medication he has planted that is already taking root deep within me. Maybe moving here will be a turning point for us. Maybe she will finally get off of this medication. Maybe she will even get her speech back. The words she used to say so many years ago echo distantly in my ears.

She really said them, and I really heard them.

I think of how she would say "Go!" over and over as we bounced a beach ball back in forth down the hallway to each other. We used to play ball. She used to look at me and throw the ball purposely to me, and wait for it to come back.

I think of how we would change her diaper and laugh because she would imitate us and say the word "poop" in the most adorable voice ever.

There were more words too.

She didn't have a ton of words, but she had them. And they all disappeared.

Because the words were there once, I keep waiting for them to come back again. I keep hoping that her speech disappeared temporarily.

Temporarily for ten years.

Every time I look at the mountains, I think about the new hope we have here. I wonder what will happen here. I wonder what I will be writing about ten years from now about Lilli, telling all of the things that we experienced. What I hope I will be writing is that Lilli is saying words again. I hope her seizures are controlled, and infrequent. I hope that when she is 21, she has gained more control and independence in her life.

I hope so much that when we are driving in the car together and she smiles and looks out the window, that I can say, "Why are you smiling, Lilli?"

And she can tell me.

My Tiny Wish for Autism Awareness

April 13, 2015

So…I missed World Autism Day this year.

I saw something about it on a facebook post, and I thought, Oh, World Autism Day. Should we do something for that? Cause…our lives are affected by autism and all that.

And then I didn’t do anything.
OR.... I will be in my own world and completely forget and wear the same pair of jeans and top that I wore on April 1! Truth.

I didn't put a blue light on, I didn't even wear a blue shirt that day. I’ve never owned a blue lightbulb, even though for the past few years, I’ve thought to myself, yeah, I should get one of those cool blue lightbulbs and stick it in my porch light for April.

How hard is it to buy a blue lightbulb?
Or forget to.

I did nothing about World Autism Day…because  I guess I was just too distracted and busy helping my child who has autism.

That sounds like such a cop out. It sounds like I’m just saying that, but it’s true. This was just over a month after we moved here, and we were still not settled at all. So Autism Awareness Day was not even on my radar, because I was still focused on moving a child who has autism to a new house, new school, new everything. And that’s not easy.

I think that awareness days are great. It’s good to be aware. It’s great if other people know about autism. It has a purpose.

Coming from the perspective of a mom of a child who has autism, I wanted to explain what my wish would be for “autism awareness.”  It’s pretty small. Everyone can do it. Here it is:

I wish more people would step out of their comfort zones for a few seconds to be kind to others in public places.

I wish for tiny things:

A smile.

For someone to hold the door for us.

For people to be kind and not stare.

For nice comments and compliments, not awkward questions and comments.

I wish for strangers to be aware that there are those in this world who need a little more help than most. I’m not asking for money, I’m not asking for babysitting, I’m not asking you to buy my groceries, I’m talking about a smile and some understanding.

If you see us coming, please hold the door for us. It’s harder than you think for us to get through a non-automatic door to a store with a child who has a disability. In the past week I have had at least two people look right at me and duck inside quickly, while I struggled with a door and Lilli and a baby in a stroller.

Don’t park in a handicap spot “for just a minute.” I’ll be pulling in shortly and I will have nowhere to park for Lilli. We really need that spot.

If you see me struggling because Lilli is crying and I'm trying to leave the store, please don't stare at us and make me feel like a horrible mother. Say, "Can I help you in any way?" Or if that's too much for you, just smile at me like, You've got this, I know you're doing the best you can. and then keep focusing on your shopping instead of standing there, staring.

I wish it wasn’t so darn hard to take Lilli out to public places, but it is. Extremely hard sometimes. So I wish more strangers in those public places would be kind. There are definitely nice strangers when we go out.

Those are the people who I remember for a very long time.

You’d be surprised at the tiny efforts from complete strangers that have completely affected my life and changed my entire day. If you ever show the tiniest bit of understanding or kindness to a mom of a child with special needs, believe me, she will remember that, and it will warm her heart and probably make her whole week. Your tiny efforts can change a life. That's why you see all of these "An Open Letter to the Person in line behind me at the Grocery Store" type blog posts. These are people who were so touched by the kindness of strangers, they were compelled to write about it. 

It makes a huge difference, trust me. So when it comes to “Autism Awareness,” well, I simply wish that everyone would be aware that just being kind is absolutely huge.  Personally, I think it’s way better than buying a puzzle piece charm or slapping a bumper sticker on your car. Not that there’s anything wrong with that, those things just have never affected me personally.

Kindness affects me personally.

Sometimes we are out in public and I feel the opposite of kindness. I feel "different." I feel like the struggle is completely mine alone, and no one wants to come within ten feet of us to get sucked into our world.

That's a very lonely feeling.

Locked Out of the House with a Potty Problem

One day, we all went out as a family to run some errands. My husband and I needed to get our new drivers licenses here since we moved to a new state. I dropped my husband off at the DMV and left with the four kids to go to the bank.

Sitting in the bank drive thru (I would never attempt to take all four children inside, because Lilli would not handle that well at all) I was leaning too far out of the car window with one of those plastic tube things you put your deposit in. As I reached and fumbled with the tube, Lilli began to cry. I knew she had to go to the bathroom. How did I know? I just knew. It has taken years, but I am almost always right about the "potty cry" these days.

Strapped into her oversized car seat, she cried and ran her hands through her hair and put her hands over her ears in frustration. She threw her head back and cried her angry cry.

My blood pressure began to rise.

The angry cry gets me every time. I get frantic to help her. I cannot listen to the angry cry.

I started to drive towards our house (three minutes away) to take Lilli to the bathroom, but realized I did not have the house key. Dang it. Who leaves the house without a house key? A person who just moved into a new house and hasn’t put the new key on their key ring yet, that’s who. Ugh.

My husband had the house key. He was sitting in the waiting room at the DMV.

“How many in front of you?”  I texted him quickly. I knew he had to take a short quiz on road signs, because I had just taken it earlier that morning. He was still waiting for his number to be called. There is nothing quick about the DMV.

Prompted by increasingly loud angry crying, and knowing I was stuck until my husband got his license, I made a split decision and swerved into the Kmart parking lot. 

It was probably going to be a bad decision. I knew this.

What should I do? Tell my daughter who I’ve worked for years to potty train, “Whatever, just pee in your pull up.” Or should I take all four of my children into a public place to use the restroom?
Any parent of a potty training child has been there. If you want your child to learn to use the potty, you have to make these decisions, and that’s why you end up swerving into parking lots.
“OK kids we are going into Kmart to take Lilli to the potty, get ready,” I said. Really to myself more than to the kids.

When we pulled into the handicap parking space, I jumped into action, barking out directions to Chloe and Josh. “Get your shoes on! Hurry and get out! Stand here by the stroller. Hold this.” I really dislike how Lilli’s mystery crying unnerves me in seconds and turns me into this kind of short, impatient mother as I try everything to figure out what is wrong. I slid on Lilli’s boots (the ones she wears everyday because they are easy to slip on and off, and she won’t wear shoes when she’s riding in the car) and pulled her out of her carseat.

Shoes and jackets on with baby in the stroller, Josh, Chloe, Lilli and I hand hands nicely and crossed to the Kmart entrance.

No not really.

Really it was: I held Lilli’s upper part of her arm because she hates having her hand held. (Sensory issues.) If I didn’t hold onto her arm, she would walk away from me and could get hit by a car because she has zero awareness of danger in roads and parking lots. I pushed the stroller with my other hand and Chloe and Josh walked next to me while I said “Stay close to me!” over and over to five year old Josh. Sometimes Chloe will hold Josh’s hand for me. She ends up doing a lot of helping, simply because I don’t have enough arms. One day, all of our arms together will be keeping Lilli safe.  I think about the future often, and try to wrap my brain around the fact that the six month old  baby I am pushing in a stroller will be helping his big sister in a few years. 

I try not to feel sad about that. That’s the way it is.

As we entered the building, Lilli stopped crying. We made a beeline for the customer service desk and the nice woman pointed to the restrooms. We had to walk by a huge easter egg display which instantly made Josh slow to a snails' pace.

“Come on Josh, let’s go, we’ll look at those later,” I repeated several times as I herded them to the restrooms.  

In the women’s bathroom, I pulled out all the stops trying to help Lilli go potty so that she would feel better. We have worked so hard for all of these years on potty training. I don’t always talk about it, because it’s just not something I think I should go into great detail about publicly. But I will say that potty training Lilli has been a huge part of my everyday life for the past…seven years now. And I see now over the stretch of time, that we are getting there. We are. But it will take a few more years. Maybe even seven more. 

I will not give up. Everything that takes days, weeks, or months with a typically developing child takes years with Lilli. I think about when I potty trained Chloe, who is now eight. I’d say that Lilli is right around where Chloe was after I’d been training Chloe for just a few days.

So a few days of a typically developing child equals seven years with Lilli. Or more.

A therapist once told me, “Even if it takes until she is twenty years old to become potty trained, if she lives to be eighty, that’s sixty years of not having to wipe her bottom.”

Yes. That made total sense to me. At that moment, I decided I would potty train her for as long as it took.

Progress. That’s all I can ever hope for. Even if it takes forever.

Lilli was dry, but she also has trouble going in public places. New bathrooms throw her off. Lots of kids have this issue. Many adults do too, right?

Our luck, we had the bathroom to ourselves. I belted out the Veggie Tales theme song and Chloe joined in singing with me while she pushed the stroller in a small circle near the sinks and smiled at the baby.  I love that Chloe. She doesn’t even know how awesome she is. Josh used the other bathroom stall.  Then came out and washed his hands without me prompting him and waited with Chloe and Nate.

Lilli still wouldn’t go. I pulled out my phone and put Lilli’s latest Youtube favorite on: Veggie Tales Madame Blueberry – Part 3 - in Spanish. I held it out and did a little tap dance there in the handicap stall for her, trying to make her laugh and relax so she could pee.

Nothing. After about ten minutes, I gave up. Maybe that wasn’t why she was crying, I thought, stumped.

Josh held the bathroom door open for us, Chloe pushed Nate’s stroller out, and I held Lilli’s arm and guided her out and around the hallway out to the store. Lilli was quiet now. She seemed okay. As always, I was mystified. It drives me crazy that I don’t know what she wants to say.

Chloe and Josh wanted to look for “Mystery Surprise Eggs,” which is some silly thing they had seen on Youtube of some lady opening up all kinds of plastic eggs with toys and candy inside. So far we have not found them in a store. So we went to an aisle where I thought Mystery Surprise Eggs might be if they had them, and that’s when Lilli fell to the floor and began to sob loudly. She had my phone in her hand, and something was wrong with the youtube video and it wouldn’t play. She threw my phone down the aisle and screamed.

My internal “let’s get out of here now” alarm went off.

“Time to go, let’s go let’s go!” I said to Josh and Chloe in a low tone,  purposely calm sounding, but urgent at the same time. This situation wasn’t going to get any better. I retrieved my phone from down the aisle and turned the baby's stroller to go. Josh and Chloe were riveted to the candy shelf, looking at those silly stick containers of candy with plastic fans on the top. They were ignoring me. They are so used to Lilli’s crying that they are not even phased by it. I grabbed Josh’s hand and tried to drag him away as I wrestled with screaming, tantruming Lilli with the other arm and pushed the stroller with my elbows.  By the time we made it to the registers to get to the exit, everyone in all the lines were standing dead still, staring at Lilli, and staring at me. It felt like there was no other sound in the store except Lilli. If we lived in the 80s, I'm sure I would’ve heard a record screech.

Time stopped for just a second as I took in the instant realization that we now live in a small town, and everyone here knows everyone else, and now I will be judged by my mothering skills by people who know who we are when out with my melting-down autistic child in any public place. I had moved from a city where it was much easier to remain somewhat anonymous. I realized that there was little anonymity here.

I also realized, that I cannot take Lilli back to Kmart. Not for awhile, anyway.

There was not much that anyone in that store could have done to help me. Except that no one offered to help me. They just stared at us and made me feel bad. No one smiled. No one moved. I think they were stunned.

But things do not always turn out like this. Sometimes, people are kind.

Simple Kindness Goes a Long Way

Last  Saturday morning, we all went to the downtown to watch a huge bike race. We were going to split up and I would stay home with Lilli, because we didn't know how she would do. We don't like to split up as a family, but we have found that splitting up can make it easier in case Lilli has a meltdown.

I really wanted to be together as a whole family, so I came up with a plan. We would all go together. If Lilli got fussy, I would leave with Lilli and Nate, and meet Jasen and Chloe and Josh to pick them up later. We took the oversized jogging stroller for Lilli so she wouldn’t have to walk the whole time. She prefers to walk, but only for small amounts of time. She gets tired and overwhelmed when walking in crowded public events, so we use the stroller sometimes.

 Pushing two strollers, we walked around town, saw the bike racers take off, and then strolled to check out our new main street and the shops. It was relaxing, and the kids were great. We loved being out together as a whole family, which is not something we get to do often.

We split up for a short while on the sidewalk and I took Nate, Josh and Chloe into a shop while Jasen walked around with Lilli. When we met back up, Jasen commented, “I cannot believe how many people walked by and just stared at Lilli. No waving, no saying hello, no smiling at her or at me. Just plain staring.” 

“Yeah, it’s a bummer,” I said. “I guess we won’t ever get used to that.”

While we were in the adorable downtown toy store, Lilli got mad and we knew the trip was done for her. I was happy to take Nate and Lilli back to the van while Jasen helped Josh and Chloe decide what to spend their allowances on. Trust me, I had the better deal – those two take forever to decide. We had tried to show different things to Lilli in the toy store, thinking she might like them. Jasen took her out of the stroller and showed her the Lego display, but they were all in boxes, so that just made her mad. Her anger was quickly escalating and we needed to leave. We have learned that when she reaches this point, we've got to just go.

 I walked down the main street sidewalk pushing Lilli’s big jogging stroller with one hand, and pulling Nate’s lightweight stroller behind me with the other. Some people walked past me and smiled. Some made comments. One woman made me smile as she said, “Oh, let me get out of your way cause I’m a slow walker, and wow, you are extremely talented!” I was so glad she didn’t tell me I had my hands full, because that comment gets old to a mom after awhile. At a corner, I stood with the two strollers parked and waited for the “walk” light. A nice man came over to me and made a big deal out of Nate and Lilli, saying hello right to Lilli and complimenting her. I love it so much when strangers are kind. He asked me if he could help push one of the strollers across the road for me.
“I’ve got it, thanks.” I smiled. But man, did that make me feel good.

It is priceless when people see Lilli and smile… and don’t stop and stare rudely. People who say things like:

“Hi, what a beautiful girl!”
“I love your outfit!”
“You’re the big sister, aren’t you lucky?”

These people totally make my day.

People who acknowledge me and say “Do you need help? Here let me get the door for you,” are blessings.

Nothing is better than the gift of help with a door, and a warm smile.  Even when I sometimes decline the help, I love the offers. I cannot emphasize enough how huge it is to have someone hold the door for us.

Compliments like “You must be a proud momma of all these beautiful children,” make my anxiety dissolve and give me a bit of strength to get through the outing.

If this blog post makes a small difference in anyone’s day, then I will feel accomplished. The simple act of kindness. This is what I wish for. Because no one can really ever take away the anxiety that Lilli feels, or that I feel when we go out in public. And honestly, even I do not always know what to do when Lilli gets angry or starts to cry when we are out in public.

But a little bit of kindness does make a world of difference. And it’s free.  It’s easy. No one has to buy a little paper puzzle piece, wear a t-shirt…

or buy a blue light bulb.