How Lilli Jumped from 15 Months Old to Second Grade... with One Test.

Over the last few months, I have neglected to tell you that Lilli got a new communication device. I think I may have started to write a post about it once. But this summer was all about painting and fixing our new home and moving into it. The whole amazing experience of Lilli's newest communication device and how she used the ipad to take a standardized test kind of got lost in all of that craziness. She now uses both the ipad, and a new device called the NovaChat. The NovaChat is what she is now learning to use to communicate independently - and that will have to be a different post. For now, I will focus on the standardized testing.

It all started when we were talking about moving. Jasen was getting ready to graduate from chiropractic school in March of 2013, and we were once again at the crossroads of where to go. We thought we were going to move away. I guess it was fall of 2012 when I began to make plans for Lilli in preparation for this. I told the school district that I wanted documentation in her permanent record about what she is able to do. (I am a "think far ahead into the future" kind of mom.)

This was important to me, because just one year ago, her school assessments still said she was at a "fifteen month cognitive level."

Fifteen months.

Please let that sink in a moment, if you have read some of my other posts about Lilli, especially way back when she started to type on the ipad.

There was no way that I was going to let her school record say that, after she has been working on second and third grade level material for over a year. It is in her mind. You just can't see it.

Not because I care what other people think, but because I care about her education - we had to find a way to "prove" that she is smarter than a baby.

If we moved to another school district, I did NOT want to have Lilli start back at square one. I did not want to have a new school district look at her assessments in her file and doubt what she could do, thinking that her wacko mother was completely disillusioned in believing this child could actually do some third grade level work.

I did NOT want her go go into a special education self-contained class where she would be re-taught the alphabet and letter sounds that she probably learned when she was four and five.

I began to ask about asessments.

It is extremely difficult to assess a non verbal child with autism and fine motor issues that hinder her from writing. We know how to assess her, but there did not seem to be a standardized test that would do that. Schools want official standardized testing results, with tests that are administered a certain way. My goal was to prove on paper - officially -  that Lilli can and does understand, and deserves an appropriate education. And by "appropriate," I mean close to or on grade level, but with extreme accomodations. And by extreme, I mean a teacher who is willing to think completely out of the box and work one on one with her to discover what she can do, and think of imaginative ways to bring out that hidden intelligence.

I knew based on her special education path so far, that it would take a special person in a new school district that did not know Lilli, to see her potential and have that faith in her abilities. She might not be able to put blocks in a shape sorter, but she knows her multiplication facts. Darn it, there should be a way to prove that. This is the kind of stuff that makes me so mad and frustrated, especially as a former teacher. I hate that a standardized test is so important in proving to the world what a child knows.

At her IEP meeting in the spring of 2013, the adminstrators were supportive and helpful. We brainstormed. We realized that the only way to do this would be to figure out a way for her to take a standardized test.

So despite my hatred for standardized testing (because as a teacher, I gave many of those tests years ago - enough said) we began to rally for Lilli to take a standardized math test. "We" includes her parents, her homebound teacher, her ABA therapist, her speech therapist, and her occupational therapist. Lilli has a great team right now. We are blessed. It is incredibly important to me to have people that work with Lilli who truly believe in her intelligence and potential. I look back with sadness on years where we had various people who did not believe in Lilli's intelligence and potential. If even one person on this team had said, "Well, come on, Jennie. Face reality. She will never be able to take a standardized test, and that's OK..."

Nope. No more of that. I do not want people like that working with Lilli. I had a therapist two years ago sit me down and try to get me to "face reality," and work on what Lilli "really needed." (In her opinion, that did not include academics.) You want to know what I did about that? I told the school to remove Lilli from that woman's therapy services immediately, that I did NOT want her working with Lilli ever again, and I did not want her to attend any future IEP meetings or even have anything to do with Lilli. Not listening to you, negative professional with "twenty years of experience." 

A few weeks after the IEP/brainstorming meeting with the principal, assistant principal, and teacher, Lilli took a standardized math test. Her teacher and therapists only had a short time to prepare Lilli because of the testing window, but she had been "taking" multiple choice tests with cut up paper for many months. She took the math test on the computer, and used her ipad to make the choices. Un-touched. On her own. No "hand-over-hand" guidance. She took another standardized alternative test for English/language arts, math, and social studies, which used cards that were laid out on the floor for Lilli to choose her answers.

The nitty gritty of the experience would be a different post, with exactly how we did it. One day I hope to really write all of that down for other parents who need guidance in helping their children through a similar educational path. It was a lot of hard work on the part of the teacher and therapists. For now, I will post a few videos of the very beginning stages. In the beginning, it was all experiemental. We figured it out as a team, through trial and error. We used tape, old overheard projector sheets that I cut up, and Vis a Vis markers, along with the ipad. Then, she practiced.

The end result was that Lilli learned to take a multiple choice test with the letter choices on her ipad. When she took the standardized math test on the computer, we went to the school, the teacher pointed to each question and answer choices on the screen, and Lilli chose her answer on her ipad in front of her. Then the teacher recorded which answer Lilli chose.

Lilli took that standardized math test in the spring of 2013, when she was a third grader. She scored around the end of first grade, beginning of second grade for math. Then she took the test again this fall. She beat her previous score by around 20 points.

Chloe is in first grade right now, and just took the same test. Chloe scored very high on her math test, above grade level. I cannot compare these two extremely different children of mine. But for the sake of pointing out that Lilli is really smarter than most people give her credit for, I want to tell you this:

Lilli's score beat Chloe's score.

Lilli is nine and still has a ton of catching up to do. She missed a lot. She spent way too long learning the alphabet and number identification because no one could assess what she knew. Any person who would meet Lilli today would think that she is on a baby level, because of the way she walks, how she cannot talk, and plays with the only toys she can use with her fine-motor skills - toddler toys. But she really is smarter than a baby. I am not pushing for Lilli to "be" anything, to have a certain score...no. I just want an accurate assessment of what she does understand. And since there is no such assessment for Lilli, we had to figure that out.

I never thought I would be thankful for a standardized test. But I am. I am so proud of Lilli. We will keep working. And oh, incidentally, we never moved. We stayed in the same school district. Jasen found a job here close by, and we bought a house in the district. We chose to stay here for now, for Lilli's sake. We feel very blessed with the team of people she has right now, and we do not want to lose that. In the very near future, things will really change. Possibly as soon as this coming spring/summer.  Lilli's ABA therapy will run out and we will no longer have it. I cannot think about that right now, it makes me feel panicky. I am living for today. Trying to beat the clock. Trying to cram in as much catching up and learning as possible before things change.

The other "alternative" standardized test turned out to not be very helpful at all. Her results came back and she scored a "3 out of 4." The scores were completely general, non specific and unhelpful to me as a parent. No grade level, no skill level. Just said that she was "progressing." However she did get a lot of practice with multiple choice testing, and it was a positive experience. We are going to keep focusing on the test that all the other kids take. The school-wide standardized test.

Fo now, we will continue to build up that school record with test scores that do mean something.

And I may be the only former teacher and mother in the world to proclaim this:

I love standardized testing.

Because, it proves, on the world's terms, that Lilli is smart.

If you watch these video clips, it's not the questions and answers that are important. It's the method. This was the first day that we tried to show Lilli the concept of a multiple choice "test." It was all new to her. Also, you will notice that she looks away a lot. But that does not mean she is not listening. She is learning. Transferring the choice she wants to make from the top ipad to the bottom ipad is a new challenge. We used several different apps that had multiple choice formats. We used our ipad to make a multiple choice touchscreen board for her to select answers. The speech therapist brought her ipad and used it for the apps. We taped the clear "A B C D" choices onto her ipad screen next to each choice. The concept began to make sense to Lilli after we worked on this for awhile. She ultimately took the standardized math test without being touched. Yay for "thinking outside the box" with a team of people who care about our daughter!

Learning to Use a Voice

It is something we all have to do at some point in life. Literally, and figuratively. Actually, it might be more accurate to say that we have to do this at many different times throughout our lives. We have to learn that God gave us a voice, and we should use it. How we use it is the big question.

I was reminded last week about my own - figurative - voice. Here I spend all this time talking about Lilli's voice, and how she can't verbally talk but she has a "voice," and how we are trying to help her use it. I am  passionate about explaining to others, in writing and in person, how Lilli has an opinion and wants to be heard even though she is not verbal. I want teachers and therapists everywhere to look at non verbal children in this way. Lilli definitely has a strong "voice."

I honestly have not given much thought to my own voice.

I guess I felt a little like I was yelling down a dark tunnel, thinking it was empty. Or maybe just full of spam. (Other bloggers will get that.) But I continue to yell because I need to get it all out. I did not know just how many people were listening on the other end. Maybe I will never know about all of them. But it does not matter. There are people listening.

It was so good to be reminded. I had a very humbling, precious moment where I felt a little like George Bailey in "It's a Wonderful Life," only...it wasn't Christmas, and it had nothing to do with money, and I wasn't really questioning my existence...okay I guess it's not the greatest illustration. I thought of the movie because I think the best part is at the end, when George realizes that he has touched many other people's lives and never even knew it.  There is just nothing to say in a moment like that. You just take it all in and wonder at it all, how God brings people together through hundreds of seemingly random, different circumstances. But nothing is random. And I do not believe in coincidences. If only we all took more time each day to tell other people how they have made a difference in our lives. Even if it is small. How encouraged we would all be.

I have been writing this blog for a few years now, and I feel very blessed to hear from people I had no idea were reading this. I loved every comment on this blog and on Facebook. I received two phone calls from long-distance friends I had not spoken to in years. They called to tell me that they have been reading all along. I just did not know, that's all. I was very surprised, and more encouraged than I have felt in a long time. So thank you, to everyone who took the time to comment or call. It was a gift to me.

I have been thinking about my voice in our community and specifically in our church. Most times, I feel very small and insignificant, and mostly just plain old tired. I often wish that other people would advocate for families with children who have special needs. Meaning, people who don't have children with special needs, people who get a full night's sleep and lead more of a "normal" life. (There's my least favorite word again.) But it seems to be true that when a person feels passionate about something, that person is the one who can make the most difference. Our pastor says that when God puts something on your heart, He means for YOU to go and do it - not to go and tell someone else that "they ought to do something about it." Don't call the church and say that "they ought to take care of that situation." If it is on your heart, it is there for a reason, because you are that person who is supposed to do something about it.

See, I just sighed out loud to myself in this early morning dark kitchen.

Because I know that I have to go and do something. I have to go and do something that will be hard, but I can't not do it. I'll bet you squirmed a little or maybe sighed to yourself too when you read that. If you did, it's because you probably have something that bothers you too, and you wish somebody would just DO something about it. But you know that person is probably going to end up being you. Sorry to tell you that.


I will write about what I have to do another day. Today I want to end with this video clip of Lilli, who is learning to use her "out loud" voice. I believe that after you watch it, you will feel blessed in some way. This girl wants so desperately to speak, and it is incredibly difficult for her. Would you please watch this video, and say a prayer for Lilli, as she is trying so hard to practice and make these sounds and words come out? Here is the Youtube link in case it does not show up on your browser: http://www.youtube.com/watch?v=DFyeWo5SyhA

Thank you for reading. I will keep writing. I will keep telling my stories. I will tell stories about others as well. I hope it continues to encourage, enlighten, and bless everyone.

Morgan is trying to get Lilli to make the sounds "guh" for the letter G, say the word "me" and the sound "ticka ticka" for the word "tickle." Lilli says these sounds on her own so this is why we chose them, but she has trouble making the sounds come out "on command." This is due to speech apraxia. She is physically able to do it but has to work hard and really concentrate to do when when Morgan asks her. She is also a little distracted by me and camera shy. (Josh is climbing up the climbing wall making noise next to me while I'm trying to record.) She makes all the sounds Morgan asks, but softly, so you might need to turn up your volume. 

Telling Someone Else's Story...and Why I Must Tell It

I sat and listened to a woman I'd never met before, as she told me about her two young children. They are undiagnosed, ages two and three. She is on a year-long waiting list to get them in to a developmental pediatrician so they can get a diagnosis. A year! She cannot get more intense or specific services for her children until she gets that official diagnosis. They have early intervention services, with speech, occupational, and physical therapies. But she waits on a long list to get more help. If they do get a diagnosis of autism eventually, they will be put on another waiting list, which is two years long, to get behavioral therapy - ABA therapy for her children.

Despite the OT, PT, and speech therapies (which are one hour each per week) she struggles alone.  She has thousands of unanswered questions. She asks me, "What are the symptoms of autism? How do I know if my children have autism?" She does not even know where to begin. She has no idea what to do about the future. She lives a difficult life, waiting for answers. When you don't have a diagnosis, you don't have direction. When you finally hear the doctor say, your child has "this," at least you know what to focus on as far as therapies and programs. Well, to some extent, anyway.

In the meantime, while she is waiting, this mom's life is on hold. She cannot take them to the grocery store. She cannot take them to restaurants. She cannot get a babysitter. They have stopped attending church because of her children. She cannot take her eyes off of them for one second. She has a job, but she says her kids are in danger of being "kicked out of daycare" because of their behavior. One child is nonverbal and eats all kinds of objects, such as metal screws, crayons, and recently her own feces. The other child is extremely aggressive, has anxiety and volcanic melt-downs in any public place where there are crowds or groups of people, and bites others. The mother struggles to figure out what the non-verbal child wants - as simple as what she wants to drink. The little girl cries and cannot communicate her basic needs. They have feeding issues such as choking often on certain textures. They do not sleep through the night, ever. And...her pediatrician tells her nothing is wrong. Want to know the craziest part? We go to the same pediatrician. Yep. I shook my head and told her that she can't completely depend on the pediatrician for help with this, unfortunately. The pediatrician can make referrals, but the mother will have to ask for them. This mother will have to learn how to advocate and find help for her children by herself.

Can you imagine her life for one moment? Can you imagine trying to keep a marriage from falling apart and a career afloat while dealing with these issues every second? I hear stories like this and I think, why is this mother being made to wait like this? Why is there such a problem with getting in to see a developmental pediatrician? Why is she not getting more intensive therapies? Why on earth is the speech therapist not helping to establish a simple communication system for this frustrated little girl?

I think, What can I do? How can I help this woman? I hadn't even known her for ten minutes and I wanted to help her. You probably feel sympathetic and helpless just reading about her, and you have no idea who she is. I gave her some advice about advocating for her children and researching certain therapies. I showed her some of Lilli's old PECS pictures and explained how she could make some simple pictures to help her little girl tell her what she wants to eat or drink. I recommended the best book I've ever read about helping with her children's issues. I told her about how our church has a class for children with special needs with wonderful volunteers, and she could feel comfortable bringing them there. I will be in touch with this mom and try to think of ways to help her. But I can't do anything about the programs that don't exist, and the therapists that are not helping to establish a communication system, and the therapies that have two-year waiting lists, and the lack of doctors who can see her child and give a diagnosis in less than a year's time.

The whole time we were talking, she kept saying, "Oh, you just don't even know..." as she wiped tears away. But...I do know. Some of it. I don't know what it's like to be her and live her life, but I have shared some of the same experiences, frustration, and feelings of helplessness. She is probably so used to meeting other parents with "typically developing" children (sometimes I do get a little tired of that term because it reminds me that we are NOT typical) and she feels like she lives on a completely different planet when she hears them talk about their struggles. Hearing a mom complain about playdough stuck in the carpet and fighting with a sibling....compared to a mom in agony over her child that's non verbal and eats her own poop?  I personally think there is a difference there, but that's just me. Moms like to connect with other moms about their child-raising experiences and struggles. But when you don't know any other moms who have a non-verbal kid that eats feces, well, that can make you feel pretty alone in the world.

I wrestle with this blog, more than you can imagine. I consider taking my blog down every week. Sometimes daily. I question why I even do this. Am I wasting my time? I could be doing my dirty dishes right now, or a hundred other things. I wonder if people think I am egotistical, writing about my kids and thinking that others care. I do know some that some are irritated or just plain don't care. There are many people that are very close to us that do not read this blog. For the ones that do, thank you. I believe it helps you understand Lilli much better, and I can tell a difference in how people treat her or talk to her. For that alone, it is worth the uncomfortable feeling of baring my soul to the world. For the most part, unless people comment, I do not know what people think about the point of this blog. I write, I delete. I post, and consider deleting other posts I've already put up. It is an internal battle. I feel guilty for writing publicly about my children and my situation, because I know that writing something online is permanent. I cannot take it back. I don't want to embarrass my children or anyone else. I don't want to seem like I'm lecturing the world. I wonder sometimes, what is the purpose of my writing?

Really, it comes down to this: I write because there is no other way for people to know what goes on behind closed doors with a child who has special needs. If you don't know any personally, you might see them in public, rarely. You might feel sorry for them for a brief second. You might look away so they don't see you staring. But they have a story. And I believe those stories need to be told. It is my way of advocating for my own child, and for families like ours.

Why? Because they need help. Because they don't want to be judged. Because they never asked to live this kind of life, and they are trying to figure it all out. Because the next time you see a mother struggling with two young screaming children in the grocery store, it might be this woman.  The woman who is drowning in chaos and desperately needing help with her undiagnosed children, and she just needs to get a gallon of milk and some eggs without causing a huge commotion, but she can't. And lack of discipline or what you perceive to be "bad parenting" has nothing to do with her situation.

Because you might notice that a certain family that you know does not go to church, or to functions like the PTA school carnival, or to the movies, or to birthday parties, or to the neighborhood block party. But it might be for reasons you cannot imagine.

Because you might read this, wherever you live, and it might inspire you to think of a way that you could reach out to a family like this and help them.

Because the next time you go to the movies, shop at the mall, attend church or some other community gathering/event, I want you to look around and ask yourself, "Where are all the kids with special needs?"

If you don't see any, it's not because they don't exist. Trust me. If you don't see any, it's because the place or function you are attending has no accommodations for children with special needs. The same goes for adults with special needs. This is on a large scale for big things, and on a small scale too. The next time you are in a grocery store, look around for all the moms pushing their kids with special needs in special needs grocery carts. Don't see any? It's not because they don't need groceries. (Here is a link to a video about a special needs grocery shopping cart that I wish our grocery store had when Lilli was younger and could not walk as well. Wow, would that have changed my life back then: http://www.youtube.com/watch?v=7HTt9fx5WPE

Think about your workplace. Would a parent be able to wheel their child in a wheelchair into your store? Yes, I know there are laws about handicapped accessibility. That doesn't mean that every place is handicap accessible, not by a long shot. Once many years ago in the state where Lilli was born, I pointed this out to the pediatrician's office staff. I could not get Lilli into the building without a struggle. They had two sets of double glass doors, I'm not sure of the correct term - with one of those little vestibules to keep the cold air out. No handicap automatic button. Pushing a stroller with a baby (Chloe) and carrying a handicapped toddler (Lilli), it was incredibly difficult to pull open those two sets of doors to get into a doctor's office.  I suggested an automatic handicapped button. They thought it was a good idea; it had not occurred to them. A person with a wheelchair, a walker, or a child or two with special needs would have a terrible time opening those doors to get in. I wonder if they ever did anything about that.

Ever go to the movies with your child and think, where are all the kids with autism? They can't go to the movies unless your local movie theater has a special showing for kids with autism (and there are theaters that do this!)

Look around at church. Is there a way for parents who have children with special needs to attend your church? If you did not know I was coming, and I came to visit your church, would I be able to bring Lilli? We had a very hard time visiting churches when we first moved here, because most do not have a place for a child like Lilli. It was a lonely, frustrating experience until we found our current church home. Again I feel like I am getting into other topics that I could write entire separate posts about. So I will stop here, and leave you with this.

I write, because it is one small thing I feel that I can do to raise awareness and advocate for my child, and others like her. If my stories help you to have understanding for families who have children with special needs, I am glad.

I really hope it does make a difference. Please tell me if it does. It might keep me from deleting my next post.