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.