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MEET EMMETT!!
Our 4-year-old firecracker! He is friendly, affectionate, bright, and hilarious! An extrovert at heart, “Little E” loves to give fist bumps, high fives, bear hugs, and open mouth kisses. Emmett is fascinated by foxes, loves playing with magnatiles, eating and snacking, and swimming. To know Emmett is to love him, and he certainly lights up our world! However, over the past several years of testing, surgery, evaluations, and therapy, we now know that Emmett has diagnoses of a non-progressive brain injury, nonverbal Autism, Developmental Delay, and Cortical Visual Impairment.
WHAT’S THAT MEAN?
It means that Emmett, while physically healthy, has the developmental capabilities of a child about ½ his age. Emmett’s brain operates in a state of dysregulation, meaning he can’t appropriately sort all the stimuli he receives on a regular basis, and he can’t communicate his confusion and/or frustration with words. This leads to lots of shouting and yelling to be heard and understood. We think that Emmett’s receptive language is much more developed than his expressive language. So, we think he understands much of what we say, but he has a hard time articulating a response back to use, even with gestures or signs. Emmett is high energy, constantly on the move. But he lacks the ability to make appropriate decisions or recognize danger. As such, Emmett needs to have constant supervision. The most frequently asked questions at our house are “Where’s Emmett?” and “Can anybody see Emmett?”. If we can’t see or hear him, he’s likely fishing in the potty or opening the oven or unloading all the clothes out of his drawers, or raiding the pantry, or anything else that comes to his mind to stay busy! When we leave the house, we can’t trust him to stay with us in a parking lot. He will take off in wide open spaces, so we must get creative about how to keep up with him at any outside activity. Emmett’s disabilities mean he has a hard time focusing on any one item or task. Puzzles, books, coloring, even watching TV take extra focus, attention, and effort. His brain simply doesn’t have the capacity to regulate or control his little body for any period of time. Emmett’s needs/frustrations/shouting/etc are stressful to him, but also place additional strain on our family as a whole.
SO, WHAT’S THE PLAN?
We are so excited to have the opportunity for Emmett to attend to Jacob's Ladder, a specialized neurodevelopmental school in Roswell, GA. Their model focuses on the idea that the brain can change and develop based on the input and stimulation it receives; that developing new pathways for the brain leads to growth and change. They incorporate the science of neurodevelopment with three core principles: Faith, Hope, and Love.
We believe attending this school is Emmett's best opportunity for closing the gap in his developmental delays, his visual impairment, developing speech, and ultimately for his future. Emmett's program at Jacob's Ladder is based on his individual behavioral and developmental evaluation that includes a brain map. He will have 1:1 student teacher instruction from 9am-1pm, five days per week, for 11 months per year. He will have clear daily goals and documented progress in addition to quarterly evaluations to determine if the program is challenging Emmett enough, and that progress is being made. As a family, we are committing to further model their approach when he’s at home.
Emmett's full-time programming is scheduled to begin on July 31, 2019.
HOW DO WE MAKE IT HAPPEN?
Committing to this process has been intimidating and scary. Are we crazy to pay the deposit for Emmett’s enrollment ($3340, equal to one month's tuition) and for his evaluation ($3000) not knowing how we will afford Emmett’s tuition? Yes, I think we are a little crazy! But for several months, I’ve had a burden on my heart that this is the best place for Emmett and is best opportunity for significant growth, progress, speech, and a future! So, we have faith that God is in the details.
Please watch this video from Amy, Jacob, and the staff at Jacob's Ladder further explaining the school and the reasons why we are so excited to become part of their family. Jacob's Ladder Video
Thank you for reading, watching, and considering helping us on our journey with Emmett!
Some videos of Emmett:
https://www.youtube.com/channel/UCycNFZ5XSnuvOV5tkH-Hp-A?view_as=subscriber
Trying on his first pair of glasses.....
Emmett with our puppy, Lacey....
First Day of Pre-K, age 3.....
Emmett with his siblings, Landon, Jensen, and Bella....
.
.
.
.
.
.
.
.
.
.
WANT TO KNOW MORE?
Here’s the whole story…….
Emmett was born with a condition called infantile esptropia, which basically means his eyes were crossed. We were able to see a specialist at Emory, and Emmett had surgery to correct the muscles in the eyes that were causing the crossing when Emmett was about 10 months old. This is why he wears glasses (quite handsome, we think!) to further strengthen the muscles in his eyes and encourage normal vision.
Emmett missed several developmental milestones during his first year, and we attributed some of that to his vision deficits, but some delays were more concerning: He missed several fine motor developments like the pincher grasp-when kiddos start to eat finger foods for themselves, or hold a toy independently. He didn’t crawl until almost one year of age. Emmett was fixated on inanimate objects, specifically tower fans and vacuum cleaners. His attention span wasn’t appropriate for his age. And by 18 months, he hadn’t developed any language.
We had our therapy evaluation when Emmett was about 20 months old, and at that time we began speech and occupational therapies. By age 2.5, we were able to get an appointment with specialists at the Marcus Autism Center, and Emmett received a diagnosis of Autism based on their comprehensive behavioral evaluation. His neurologist also ordered an MRI, which revealed a non-progressive brain injury. The neurologist believes that Emmett’s injury occurred late in the third trimester of pregnancy, or soon after birth, but we will never know for sure. Those were wild times to say the least! Although these diagnoses weren’t exactly good news, I was so relieved and optimistic that we were at least finding answers that would help us get the help we needed for Emmett. The areas of the brain effected by his injury explained a lot of the behaviors we were noticing in Emmett, which was encouraging.
We began working with Babies Can’t Wait, a program that provides therapy to families Georgia who have developmentally delayed/disabled children. We began weekly ABA therapy at UGA. When Emmett’s benefits with Babies Can’t Wait ended on his 3rd birthday, he began attending the special needs preschool at Oconee County Primary School. Emmett went to a ½ day program there from October 2017-May 2019 where he received speech and occupational therapy and private speech therapy one day per week at home. After his first year of pre-K, Emmett’s teachers suggested that we have his vision evaluated. The Georgia Center for Sight diagnosed Emmett with Cortical Visual Impairment, which was further confirmed and evaluation by the vision specialist at Emmett’s school. This is just another piece of the puzzle that helps explain why Emmett’s not able to process all that he is seeing/experiencing. Emmett has learned so much in his pre-k program! He has learned social skills and appropriate ways to interact with his friends. He’s learned independence by riding the bus to and from school. He has started using utensils when eating some foods. Emmett has developed more signs and gestures that he uses to communicate. He’s able to stack some blocks and lots of tiles (in his preferred configuration, of course!), and he has started matching some colors. Unfortunately, despite the progress Emmett has made with the amazing therapists and teachers in his pre-k program, Emmett has a LONG way to go to catch up developmentally and develop expressive language.
Which brings us back to Jacob's Ladder. Thank you again for reading this far, for taking interest in our precious boy, and for considering how you can help.
Our 4-year-old firecracker! He is friendly, affectionate, bright, and hilarious! An extrovert at heart, “Little E” loves to give fist bumps, high fives, bear hugs, and open mouth kisses. Emmett is fascinated by foxes, loves playing with magnatiles, eating and snacking, and swimming. To know Emmett is to love him, and he certainly lights up our world! However, over the past several years of testing, surgery, evaluations, and therapy, we now know that Emmett has diagnoses of a non-progressive brain injury, nonverbal Autism, Developmental Delay, and Cortical Visual Impairment.
WHAT’S THAT MEAN?
It means that Emmett, while physically healthy, has the developmental capabilities of a child about ½ his age. Emmett’s brain operates in a state of dysregulation, meaning he can’t appropriately sort all the stimuli he receives on a regular basis, and he can’t communicate his confusion and/or frustration with words. This leads to lots of shouting and yelling to be heard and understood. We think that Emmett’s receptive language is much more developed than his expressive language. So, we think he understands much of what we say, but he has a hard time articulating a response back to use, even with gestures or signs. Emmett is high energy, constantly on the move. But he lacks the ability to make appropriate decisions or recognize danger. As such, Emmett needs to have constant supervision. The most frequently asked questions at our house are “Where’s Emmett?” and “Can anybody see Emmett?”. If we can’t see or hear him, he’s likely fishing in the potty or opening the oven or unloading all the clothes out of his drawers, or raiding the pantry, or anything else that comes to his mind to stay busy! When we leave the house, we can’t trust him to stay with us in a parking lot. He will take off in wide open spaces, so we must get creative about how to keep up with him at any outside activity. Emmett’s disabilities mean he has a hard time focusing on any one item or task. Puzzles, books, coloring, even watching TV take extra focus, attention, and effort. His brain simply doesn’t have the capacity to regulate or control his little body for any period of time. Emmett’s needs/frustrations/shouting/etc are stressful to him, but also place additional strain on our family as a whole.
SO, WHAT’S THE PLAN?
We are so excited to have the opportunity for Emmett to attend to Jacob's Ladder, a specialized neurodevelopmental school in Roswell, GA. Their model focuses on the idea that the brain can change and develop based on the input and stimulation it receives; that developing new pathways for the brain leads to growth and change. They incorporate the science of neurodevelopment with three core principles: Faith, Hope, and Love.
We believe attending this school is Emmett's best opportunity for closing the gap in his developmental delays, his visual impairment, developing speech, and ultimately for his future. Emmett's program at Jacob's Ladder is based on his individual behavioral and developmental evaluation that includes a brain map. He will have 1:1 student teacher instruction from 9am-1pm, five days per week, for 11 months per year. He will have clear daily goals and documented progress in addition to quarterly evaluations to determine if the program is challenging Emmett enough, and that progress is being made. As a family, we are committing to further model their approach when he’s at home.
Emmett's full-time programming is scheduled to begin on July 31, 2019.
HOW DO WE MAKE IT HAPPEN?
Committing to this process has been intimidating and scary. Are we crazy to pay the deposit for Emmett’s enrollment ($3340, equal to one month's tuition) and for his evaluation ($3000) not knowing how we will afford Emmett’s tuition? Yes, I think we are a little crazy! But for several months, I’ve had a burden on my heart that this is the best place for Emmett and is best opportunity for significant growth, progress, speech, and a future! So, we have faith that God is in the details.
Please watch this video from Amy, Jacob, and the staff at Jacob's Ladder further explaining the school and the reasons why we are so excited to become part of their family. Jacob's Ladder Video
Thank you for reading, watching, and considering helping us on our journey with Emmett!
Some videos of Emmett:
https://www.youtube.com/channel/UCycNFZ5XSnuvOV5tkH-Hp-A?view_as=subscriber
Trying on his first pair of glasses.....
Emmett with our puppy, Lacey....
First Day of Pre-K, age 3.....
Emmett with his siblings, Landon, Jensen, and Bella....
..
.
.
.
.
.
.
.
.
WANT TO KNOW MORE?
Here’s the whole story…….
Emmett was born with a condition called infantile esptropia, which basically means his eyes were crossed. We were able to see a specialist at Emory, and Emmett had surgery to correct the muscles in the eyes that were causing the crossing when Emmett was about 10 months old. This is why he wears glasses (quite handsome, we think!) to further strengthen the muscles in his eyes and encourage normal vision.
Emmett missed several developmental milestones during his first year, and we attributed some of that to his vision deficits, but some delays were more concerning: He missed several fine motor developments like the pincher grasp-when kiddos start to eat finger foods for themselves, or hold a toy independently. He didn’t crawl until almost one year of age. Emmett was fixated on inanimate objects, specifically tower fans and vacuum cleaners. His attention span wasn’t appropriate for his age. And by 18 months, he hadn’t developed any language.
We had our therapy evaluation when Emmett was about 20 months old, and at that time we began speech and occupational therapies. By age 2.5, we were able to get an appointment with specialists at the Marcus Autism Center, and Emmett received a diagnosis of Autism based on their comprehensive behavioral evaluation. His neurologist also ordered an MRI, which revealed a non-progressive brain injury. The neurologist believes that Emmett’s injury occurred late in the third trimester of pregnancy, or soon after birth, but we will never know for sure. Those were wild times to say the least! Although these diagnoses weren’t exactly good news, I was so relieved and optimistic that we were at least finding answers that would help us get the help we needed for Emmett. The areas of the brain effected by his injury explained a lot of the behaviors we were noticing in Emmett, which was encouraging.
We began working with Babies Can’t Wait, a program that provides therapy to families Georgia who have developmentally delayed/disabled children. We began weekly ABA therapy at UGA. When Emmett’s benefits with Babies Can’t Wait ended on his 3rd birthday, he began attending the special needs preschool at Oconee County Primary School. Emmett went to a ½ day program there from October 2017-May 2019 where he received speech and occupational therapy and private speech therapy one day per week at home. After his first year of pre-K, Emmett’s teachers suggested that we have his vision evaluated. The Georgia Center for Sight diagnosed Emmett with Cortical Visual Impairment, which was further confirmed and evaluation by the vision specialist at Emmett’s school. This is just another piece of the puzzle that helps explain why Emmett’s not able to process all that he is seeing/experiencing. Emmett has learned so much in his pre-k program! He has learned social skills and appropriate ways to interact with his friends. He’s learned independence by riding the bus to and from school. He has started using utensils when eating some foods. Emmett has developed more signs and gestures that he uses to communicate. He’s able to stack some blocks and lots of tiles (in his preferred configuration, of course!), and he has started matching some colors. Unfortunately, despite the progress Emmett has made with the amazing therapists and teachers in his pre-k program, Emmett has a LONG way to go to catch up developmentally and develop expressive language.
Which brings us back to Jacob's Ladder. Thank you again for reading this far, for taking interest in our precious boy, and for considering how you can help.
Organizer
Kara Suzanne Elwell
Organizer
Alpharetta, GA