Ryder's Journey
Posted by The Sensory Playground Red Deer on Sunday, October 16, 2022 Under: Waiting on a Diagnosis
Here we start..Not at the beginning; But halfway through.
If you read the beginning on the website, about page, you are aware Ryder is on the waiting list to get into a program to assess him and give us a diagnosis to why he suddenly stopped speaking after his last kidney surgery.
Children born with special needs just before covid hit really fell through the cracks. Most of them should be starting school this year; but instead, they were lucky to even be around other children in their first few years of life. Getting into specialists in that time was a bigger gong show. The best a parent could ask for in covid times was a zoom call or chat.
So...Now we wait. While Ryder falls further and further behind.
Ryder's comprehension and understand hits most of the milestones for his age. We had him potty trained in in less than a month. He does have trigger words such as "ready". When he hears that word close to bedtime he grabs his mom or dad's hand and he is ready to go.
Ryder has always slept well through the night. Still naps as well. He doesn't like his clothes on when they get dirty and takes them off, getting another set from the closet.
He points to what he wants, he nods yes or no to answer. He does hit once in a while. Seems to be at his mother the most. But it is definitely out of frustration due to lack of ability to communicate verbally.
He knows every move in every movie he watches. He knows every sound effect or scream. He mimics it the same time it plays.
Ryder does eat mostly with his hands, but he does try with cutlery and gets frustrated. But very proud of himself when he succeeds. He loves to be acknowledged when he does things. He gives a high five, boomsies, (the Croods) and is a cuddle monster. He looks you directly in the eyes, and kisses his mom and dad on the lips. I get the cheek and air blow kisses.
Ryder is quite friendly when out in public. He waves to other kids, and smiles at people.
His scream is so high pitched it could blow your ear drum. But since he hardly does it around his dad, his mom and I believe we have been a bit soft of discipline. Daddy has a loud voice, and he is six foot six or seven. A giant to a child.
Ryder loves his dad time. He snuggles up with dad a lot and Ryder mimics his sitting positions and movements.
Ryder does have meltdowns. He can't be calmed until he goes through it. He throws himself against the wall, throws his toys, and he had hit himself from time to time. but seems to have calmed down in that, thank goodness. He loves to play in the bathtub and shower.
He will sit through an entire movie. He will sit through a book being read..twice!
For the most part. Other than the lack of speech, Ryder really doesn't fit into a lot of the categories I researched.
Much of our family is neurodivergent and score at the genius level of the Mensa IQ test.
So many factors involved. But very little ending in results or a diagnosis.
Ryder was born with only one working kidney and underwent three surgeries by the time he was two. All failed.
His parents made the decision after his last traumatic surgery experience, not to continue with surgeries.
Many people live with one working kidney. Fate could step in and as he ages, the blockage could clear on its own.
Til then we will love that little dude just as he is. Try to teach him sign, and other ways to communicate..while we wait.
If you read the beginning on the website, about page, you are aware Ryder is on the waiting list to get into a program to assess him and give us a diagnosis to why he suddenly stopped speaking after his last kidney surgery.
Children born with special needs just before covid hit really fell through the cracks. Most of them should be starting school this year; but instead, they were lucky to even be around other children in their first few years of life. Getting into specialists in that time was a bigger gong show. The best a parent could ask for in covid times was a zoom call or chat.
So...Now we wait. While Ryder falls further and further behind.
Ryder's comprehension and understand hits most of the milestones for his age. We had him potty trained in in less than a month. He does have trigger words such as "ready". When he hears that word close to bedtime he grabs his mom or dad's hand and he is ready to go.
Ryder has always slept well through the night. Still naps as well. He doesn't like his clothes on when they get dirty and takes them off, getting another set from the closet.
He points to what he wants, he nods yes or no to answer. He does hit once in a while. Seems to be at his mother the most. But it is definitely out of frustration due to lack of ability to communicate verbally.
He knows every move in every movie he watches. He knows every sound effect or scream. He mimics it the same time it plays.
Ryder does eat mostly with his hands, but he does try with cutlery and gets frustrated. But very proud of himself when he succeeds. He loves to be acknowledged when he does things. He gives a high five, boomsies, (the Croods) and is a cuddle monster. He looks you directly in the eyes, and kisses his mom and dad on the lips. I get the cheek and air blow kisses.
Ryder is quite friendly when out in public. He waves to other kids, and smiles at people.
His scream is so high pitched it could blow your ear drum. But since he hardly does it around his dad, his mom and I believe we have been a bit soft of discipline. Daddy has a loud voice, and he is six foot six or seven. A giant to a child.
Ryder loves his dad time. He snuggles up with dad a lot and Ryder mimics his sitting positions and movements.
Ryder does have meltdowns. He can't be calmed until he goes through it. He throws himself against the wall, throws his toys, and he had hit himself from time to time. but seems to have calmed down in that, thank goodness. He loves to play in the bathtub and shower.
He will sit through an entire movie. He will sit through a book being read..twice!
For the most part. Other than the lack of speech, Ryder really doesn't fit into a lot of the categories I researched.
Much of our family is neurodivergent and score at the genius level of the Mensa IQ test.
So many factors involved. But very little ending in results or a diagnosis.
Ryder was born with only one working kidney and underwent three surgeries by the time he was two. All failed.
His parents made the decision after his last traumatic surgery experience, not to continue with surgeries.
Many people live with one working kidney. Fate could step in and as he ages, the blockage could clear on its own.
Til then we will love that little dude just as he is. Try to teach him sign, and other ways to communicate..while we wait.
Tags: ryder's journey waiting on a diagnosis non-verbal
