Lilli has school at home every weekday with her homebound teacher, Ms. Leslie. But two days a week, the three of us get in the van and head over to the school so that Lilli can go into a special education self-contained classroom for 45 minutes.
Homebound has been fabulous and has given us much freedom in teaching Lilli in the ways she learns best. As a team, her homebound teacher, therapists, and I have tried many methods and ideas over the past two and a half years. We have learned much about Lilli, and it has changed everything. Despite the fact that it came as the result of uncontrolled scary seizures, homebound has been one of the best things to ever happen to Lilli.
The only down side to Lilli's homebound education is that she is not around her peers.
I expressed my concerns about this, and the special education director suggested we try sending Lilli to the elementary school with the homebound teacher for small amounts of time. I wanted all of Lilli's visits to be extremely positive. We chose snack time and center time so she could feel relaxed and be social.
The special education director suggested she visit this particular class this year because Lilli's results on her standardized test results finally made it evident that - despite Lilli's outward physical disabilities and difficulty in being assessed - she is functioning very close to or on grade level in her knowledge in certain subject areas. The kids in this class are learning accommodated third and fourth grade material. I am just pointing this out because there are other classes in the district where children the same age are functioning on a lower cognitive level, and they are not studying the same things. Having cerebral palsy and autism and being non verbal does not mean that Lilli has a low IQ. She doesn't really fit perfectly anywhere. But this teacher and her class have taken Lilli in as one of their own, and they love on her like I never dreamed.
Lilli had some very real anxieties about school a few years ago. She was in a class for 3-6 year olds with special needs, and school was challenging for her. She rarely made it through a day without crying. Most mornings, Lilli would start to cry as soon as we pulled up to the school building. She had a lot of anxiety, and we really do not know why. I think now that the main source of her frustrations stemmed from not being able to communicate. I cannot imagine how mad I would be if I had to go through an entire school day without ever being able to express my wants, needs, thoughts, and wishes. I don't blame her one bit.
Now, Lilli has not one, but two communication devices that she is learning to use to communicate and complete schoolwork. When we pull up to the school, she smiles. She is excited.
She takes her Nova Chat, her newest communication device that she is learning to use independently. It has a keyguard which keeps Lilli from bumping other buttons by accident (a big problem with the ipad). I'm not sure I would know what a keyguard was if I didn't have Lilli, so I will explain that a keyguard is a plastic grid that separates each button. When Lilli tries to push a button, the keyguard keeps her from hitting the edge and bumping the wrong one (very frustrating for her).The black lines between the buttons in the pictures below is the plastic keyguard.
Lilli wears a glittery peace sign backpack purse to school with an ipod and headphones inside, and a snack. If Lilli gets anxious, Leslie will put one earbud in one of Lilli's ears, and her favorite music helps to calm Lilli down while not being a disruption to the class. The whole earbud/ipod thing is just another completely different post.
In October, we started with just one morning at school each week for 45 minutes. Leslie acts as her personal aide when they are in the classroom, and helps Lilli complete the center time activities.
The kids in the class all adore Lilli. She is the only non verbal child in the class. Leslie says Lilli's classmates are fascinated with Lilli's communication device, charmed by her smiles and affection, and continually compliment Lilli on her outfits. There is one girl who really likes Lilli.
The girl's name is Grace. And how much grace she does show to my daughter. I am always blessed by what Leslie tells me about what Grace does, when Lilli goes to class. Grace runs up to Lilli and greets her, even though she does not always get a response from Lilli. She compliments Lilli's outfit and tells her she loves her. Recently the class was asked to draw a picture showing someone being kind. Grace drew a picture of Lilli and wrote, "Lilli is kind. I love Lilli and Lilli loves me." Then she read it to Lilli, and Lilli grabbed her face and kissed her on the cheek.
In the beginning, Lilli just smiled. Sometimes she cried, and Leslie would take her out. We wanted Lilli to be able to "talk" back to her classmates, and feel like she was a part of the class. Grace is a gift to us this year. She is the best motivation for Lilli to go to school and try and "talk" with her device. The first time Grace told Lilli she liked her outfit, we immediately set about making a group of social responses and compliments that Lilli could say back. One day, Lilli pressed s series of buttons to say "I like your ...pink... shirt" and Grace looked down at her shirt in total shock that Lilli was able to say this through a device.
After the fall months went exceedingly well, we added another morning. On Fridays, the class has "Show and Tell." For a few weeks, we worked on helping Lilli get ready to do a show and tell with her communication device. We gave her choices on the ipad of suggestions we had for what she could show the class. She chose to tell the class about her therapy horseback riding. I printed out pictures of her on her therapy horse, "Rascal." She took a real, (painted glittery) horseshoe that she got for Christmas from the volunteers at therapy riding. We tried to think of things she could tell the class, and programmed them into her communication device.
Then we added a button that said," Does anyone have any questions?" Because apparently, that is what each student always says at the end of their show and tell time. We knew there would be questions or comments that we could not predict, so that would be the challenging part for Lilli.
The morning of show and tell, I was excited for Lilli...and a teeny bit nervous for her. I always drop Leslie and Lilli off at the front door, and then I wait until she is done. I wait like a paranoid mama in case she has a seizure. It's only 45 minutes. But I cannot leave. And I have re-typed this paragraph several times trying to explain why. It is too much to explain. If you have a child that has seizures, then you get why I wait.
So I waited until they came out, and I saw that Lilli had a big smile on her face. Leslie told me all about it.
Lilli had to wait patiently for another girl to finish her show and tell. Waiting is very hard for Lilli, but she sat still and quiet. Every time Lilli goes to school, I know she exhausts herself trying to keep still, calm, quiet, and act like a big fourth grader. It takes a lot of work for her to keep it together like this. Her peers have a huge effect on her.
The little girl kept saying, "When I'm done, I'm picking Lilli!" Leslie helped Lilli to practice raising her arm so that she could get "picked," even though the classroom teacher said that all of the kids had been waiting all morning for Lilli to arrive and do her show and tell.
Leslie helped Lilli go up to the front of the class, and showed the class her glittery horseshoe and pictures. She pressed buttons on her device that told about her therapy horseback riding. One student raised her hand and said that her hamster has the same name as the horse Lilli rides. Lilli pushed, "That's cool." Grace raised her hand and said, "I love you Lilli!" and Lilli pushed, "I love you."
I so wish I could have witnessed this. The teacher tried to video it on the classroom ipad, but later realized that she had only recorded for four seconds, and turned it off by accident. That's ok, I got all the details from Leslie.
Lilli turned ten at the end of January. Lilli took a birthday treat into the class (gluten free chocolate chip muffins), and everyone sang "Happy Birthday" to Lilli while she smiled and swayed in her seat.
These little moments: making a friend, show and tell, taking a birthday treat to class...these are huge moments. We do not take them for granted. We celebrate them all, and constantly set new goals. New phrases to use on her communication device. New events to look forward to and prepare for. Coming up, Lilli will get to go to school for a Valentines' day party and give valentines to her classmates. She has not had classmates to give valentines to for several years.
Lilli's education is very different but it's perfect for her. It's working well. She has one-on-one teaching with Leslie at home, and time with peers at the school. She is practicing using her communication device to have real conversations. Lilli has a real desk now with a name tag. Even though she is there less than two hours each week, she is part of the class. We may try to increase her time there, we may keep it the same for awhile.
I really do not know where we go from here. We just keep moving forward. Every month there are new goals, new issues, new things to work on. So I do not know where she will be next year, or even next week. I only know about what she is doing today.
One day at a time.
Homebound has been fabulous and has given us much freedom in teaching Lilli in the ways she learns best. As a team, her homebound teacher, therapists, and I have tried many methods and ideas over the past two and a half years. We have learned much about Lilli, and it has changed everything. Despite the fact that it came as the result of uncontrolled scary seizures, homebound has been one of the best things to ever happen to Lilli.
The only down side to Lilli's homebound education is that she is not around her peers.
 |
| Homebound school: working on phonics - sounds to help with spelling. Since Lilli cannot "sound out" words, sounds must be imagined in her mind. Leslie is helping her practice hearing those sounds in her mind by asking her, "Which sound says the sound 'guh' and Lilli must pick the letter G off the board. This is "think outside the box" stuff for a non verbal kid who has weekly spelling lists. She has a different spelling list every week and takes her tests on a spelling app on the ipad. |
I expressed my concerns about this, and the special education director suggested we try sending Lilli to the elementary school with the homebound teacher for small amounts of time. I wanted all of Lilli's visits to be extremely positive. We chose snack time and center time so she could feel relaxed and be social.
The special education director suggested she visit this particular class this year because Lilli's results on her standardized test results finally made it evident that - despite Lilli's outward physical disabilities and difficulty in being assessed - she is functioning very close to or on grade level in her knowledge in certain subject areas. The kids in this class are learning accommodated third and fourth grade material. I am just pointing this out because there are other classes in the district where children the same age are functioning on a lower cognitive level, and they are not studying the same things. Having cerebral palsy and autism and being non verbal does not mean that Lilli has a low IQ. She doesn't really fit perfectly anywhere. But this teacher and her class have taken Lilli in as one of their own, and they love on her like I never dreamed.
Lilli had some very real anxieties about school a few years ago. She was in a class for 3-6 year olds with special needs, and school was challenging for her. She rarely made it through a day without crying. Most mornings, Lilli would start to cry as soon as we pulled up to the school building. She had a lot of anxiety, and we really do not know why. I think now that the main source of her frustrations stemmed from not being able to communicate. I cannot imagine how mad I would be if I had to go through an entire school day without ever being able to express my wants, needs, thoughts, and wishes. I don't blame her one bit.
Now, Lilli has not one, but two communication devices that she is learning to use to communicate and complete schoolwork. When we pull up to the school, she smiles. She is excited.
She takes her Nova Chat, her newest communication device that she is learning to use independently. It has a keyguard which keeps Lilli from bumping other buttons by accident (a big problem with the ipad). I'm not sure I would know what a keyguard was if I didn't have Lilli, so I will explain that a keyguard is a plastic grid that separates each button. When Lilli tries to push a button, the keyguard keeps her from hitting the edge and bumping the wrong one (very frustrating for her).The black lines between the buttons in the pictures below is the plastic keyguard.
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| These are some of her screens on the Nova Chat. Each button talks and most take you to another page that is related. Lilli is not spelling out words completely without being touched, but getting closer. We focus on the complete words and categories, and phrases ready for her to use with the touch of one button. The hardest part is knowing where everything is, on which screen. She is learning where everything is. And so are we! |
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| Some of the categories on the NovaChat |
Lilli wears a glittery peace sign backpack purse to school with an ipod and headphones inside, and a snack. If Lilli gets anxious, Leslie will put one earbud in one of Lilli's ears, and her favorite music helps to calm Lilli down while not being a disruption to the class. The whole earbud/ipod thing is just another completely different post.
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| Just had to put this picture in, I think she looks adorable. She had to get used to wearing the backpack. She had to get used to wearing the headphones. She is learning to put the earbuds in and needs help with those. She did not need any help with her fashionable outfit. |
A Friend
In October, we started with just one morning at school each week for 45 minutes. Leslie acts as her personal aide when they are in the classroom, and helps Lilli complete the center time activities.
The kids in the class all adore Lilli. She is the only non verbal child in the class. Leslie says Lilli's classmates are fascinated with Lilli's communication device, charmed by her smiles and affection, and continually compliment Lilli on her outfits. There is one girl who really likes Lilli.
The girl's name is Grace. And how much grace she does show to my daughter. I am always blessed by what Leslie tells me about what Grace does, when Lilli goes to class. Grace runs up to Lilli and greets her, even though she does not always get a response from Lilli. She compliments Lilli's outfit and tells her she loves her. Recently the class was asked to draw a picture showing someone being kind. Grace drew a picture of Lilli and wrote, "Lilli is kind. I love Lilli and Lilli loves me." Then she read it to Lilli, and Lilli grabbed her face and kissed her on the cheek.
In the beginning, Lilli just smiled. Sometimes she cried, and Leslie would take her out. We wanted Lilli to be able to "talk" back to her classmates, and feel like she was a part of the class. Grace is a gift to us this year. She is the best motivation for Lilli to go to school and try and "talk" with her device. The first time Grace told Lilli she liked her outfit, we immediately set about making a group of social responses and compliments that Lilli could say back. One day, Lilli pressed s series of buttons to say "I like your ...pink... shirt" and Grace looked down at her shirt in total shock that Lilli was able to say this through a device.
 |
| Grace and Lilli on "Walk to School Day" |
Show and Tell
After the fall months went exceedingly well, we added another morning. On Fridays, the class has "Show and Tell." For a few weeks, we worked on helping Lilli get ready to do a show and tell with her communication device. We gave her choices on the ipad of suggestions we had for what she could show the class. She chose to tell the class about her therapy horseback riding. I printed out pictures of her on her therapy horse, "Rascal." She took a real, (painted glittery) horseshoe that she got for Christmas from the volunteers at therapy riding. We tried to think of things she could tell the class, and programmed them into her communication device.
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| Love this face. |
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| Lilli's show and tell. |
The morning of show and tell, I was excited for Lilli...and a teeny bit nervous for her. I always drop Leslie and Lilli off at the front door, and then I wait until she is done. I wait like a paranoid mama in case she has a seizure. It's only 45 minutes. But I cannot leave. And I have re-typed this paragraph several times trying to explain why. It is too much to explain. If you have a child that has seizures, then you get why I wait.
So I waited until they came out, and I saw that Lilli had a big smile on her face. Leslie told me all about it.
Lilli had to wait patiently for another girl to finish her show and tell. Waiting is very hard for Lilli, but she sat still and quiet. Every time Lilli goes to school, I know she exhausts herself trying to keep still, calm, quiet, and act like a big fourth grader. It takes a lot of work for her to keep it together like this. Her peers have a huge effect on her.
The little girl kept saying, "When I'm done, I'm picking Lilli!" Leslie helped Lilli to practice raising her arm so that she could get "picked," even though the classroom teacher said that all of the kids had been waiting all morning for Lilli to arrive and do her show and tell.
Leslie helped Lilli go up to the front of the class, and showed the class her glittery horseshoe and pictures. She pressed buttons on her device that told about her therapy horseback riding. One student raised her hand and said that her hamster has the same name as the horse Lilli rides. Lilli pushed, "That's cool." Grace raised her hand and said, "I love you Lilli!" and Lilli pushed, "I love you."
I so wish I could have witnessed this. The teacher tried to video it on the classroom ipad, but later realized that she had only recorded for four seconds, and turned it off by accident. That's ok, I got all the details from Leslie.
 |
| Significant about the toppers is that Lilli chose them, in a store, without too much crying. |
A Birthday Treat
Lilli turned ten at the end of January. Lilli took a birthday treat into the class (gluten free chocolate chip muffins), and everyone sang "Happy Birthday" to Lilli while she smiled and swayed in her seat.
 |
| This is huge. Eating a muffin all by herself. I cannot tell you how amazing this is. All those years of feeding therapy: WORTH IT. |
These little moments: making a friend, show and tell, taking a birthday treat to class...these are huge moments. We do not take them for granted. We celebrate them all, and constantly set new goals. New phrases to use on her communication device. New events to look forward to and prepare for. Coming up, Lilli will get to go to school for a Valentines' day party and give valentines to her classmates. She has not had classmates to give valentines to for several years.
Lilli's education is very different but it's perfect for her. It's working well. She has one-on-one teaching with Leslie at home, and time with peers at the school. She is practicing using her communication device to have real conversations. Lilli has a real desk now with a name tag. Even though she is there less than two hours each week, she is part of the class. We may try to increase her time there, we may keep it the same for awhile.
I really do not know where we go from here. We just keep moving forward. Every month there are new goals, new issues, new things to work on. So I do not know where she will be next year, or even next week. I only know about what she is doing today.
One day at a time.
 |
| The class singing happy birthday to Lilli. |
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