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 things...like 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.