Jarrett's Journey
Jarrett’s Journey
They say life is a journey and boy are they right! Our son’s journey has been such an interesting experience with many twists, turns and yes, a few detours, and yet we continue to look forward to each “mile”.
While we began to have concerns about Jarrett’s development when he was eighteen months old, due to his lack of speech and tantrums, hindsight reminds me that our first concerns should have been right after his birth. He entered this world at a whopping 9 lb. 10 oz., which was 2 lbs heavier than his three siblings, but, his labor and delivery were the easiest by far. What I was reminded of several years later while listening to the first seminar Linda gave on the Neurodevelopmental approach was that there are certain survival instincts our babies are hopefully born with, one of which, is the sucking reflex. Jarrett did not nurse well from the breast. Try as I might, I quickly gave in to formula feeding from a bottle because this seemed easier for him. I always seemed to have reasons for his different behaviors. I reasoned that because he was so much bigger than my other children, he was harder to carry around on my hip. He just didn’t “help” me carry him. I remember now as I write this, the contraptions I ordered from baby catalogs to help ease the load of this big boy. As an infant before learning to crawl, he would lie on his back on the floor and rigidly extend his arms and legs while excitedly wiggling his hands and feet and squealing with joy. Many times he would arch his back and look at the world upside-down. We thought this was the cutest thing! Now I know the dreaded word “stimming.” He was such a sweet-tempered infant except when we had family gatherings. I assumed they always happened around his naptime and that was why he was cranky; soon I learned that he was hyper-auditory. There wasn’t anything glaringly wrong with him physically or developmentally to us in those days to set off alarms so, I just tried to “reason” away his little idiosyncrasies.
We decided to wait until Jarrett turned 3 to give in to our panic over his speech delay. That day came and went and thus began the “journey” of how to best help our son. As long as I live, I will never forget those days from 18 months until about kindergarten. It’s an awful feeling when you can’t understand your child and even worse when you can’t calm their meltdowns with words or hugs. You just know that someone has to stay in control and since your child can’t, it’s up to you to hang in there and ride out the storm. Jarrett had his own language or “jargon” and the few things he echoed that I could understand were “You want cereal” “You want Sprite” “Thomas” (the Tank Engine) and “Mom”. He ate a lot of cereal, drank a lot of Sprite and watched a lot of Thomas videos. My world revolved around making him happy to avoid the next major meltdown. When those meltdowns came, I felt that if you hooked me up to a polygraph machine, you would see how hard it was for me to try to stay calm because inside, the “needle” of the device was frantically scratching bold black lines back and forth across the paper. I shudder just remembering that feeling now.
Although medical “labels” do more harm than good; the harm being that we were told that he was pretty much uneducable and would probably need to be medicated at some point, the diagnosis of “high-functioning autism with severe speech delay” brought some relief because he started special education preschool soon after his diagnosis. I learned how to carry over what he was learning to do at school and to work with him at home. I even went to school with him a few times each month because I so desperately needed counseling and role-modeling.
My angel on earth, Jane, was the first to tell me about the Neurodevelopmental Approach to learning delays. I was helping her “pattern” her son, Tate, with the hope that he would crawl one day. She mentioned that the program she was doing with Tate could be applied to Jarrett even though he wasn’t as severely involved as Tate was. I began to research and soon we were driving to Wichita, Kansas for evaluations every four months. The first time I can say that God “spoke” to me was at the first evaluation with Cyndi Ringoen. We’d been to three different institutions for second and third opinions and they all said the same thing, “Get with your school district and they will help you set up some goals.” When we spoke with Cyndi after her assessment of Jarrett, it was a different experience altogether. She told us things about Jarrett that I know weren’t included in the history form I filled out. She told us why he did some of the things he did, how his brain processed those things, and a third step, how we were going to fix those things. There had never been a third step before!! At that time, I had been trying to find a job at our children’s school with no success and was very frustrated because the details just weren’t coming together. When Cyndi asked me how much time I could devote to working with Jarrett, God said to me, “THIS" is what you’ve been waiting for.” In other words, to me, He was saying that this was to be my new job. A feeling swept through my entire body and I knew that we were in the right place at last! I had no idea how to I was going to accomplish this and, yes, I was feeling very overwhelmed at that moment, but I knew that everything would be OK.
My husband will tell you that program saved our son’s life. That’s a very bold statement and very true. We’ve seen children who have had much in common with Jarrett before we started program and the difference between these children and Jarrett now is night and day. We have a “visual” of what he would be like now if not for program when we see these children. I believe that Jarrett definitely was autistic. I’ve seen the DSM-IV that doctors use to diagnose and I checked off many of those boxes for myself. He had echolalia, was rigid about routine, lined up his toys, had stimming behaviors, isolated himself from peers and family, etc. and I used to think, “Once labeled, always labeled so learn to adapt and be accepting of the limitations.” However, because of program, Jarrett is no longer autistic. Words I never dreamed I would ever be able to say! Now we work on bringing him up to grade level and beyond academically.
Program isn’t just about helping to transform your child because you find that you begin to transform yourself, as well. You change your way of thinking and you find inner strength you never knew you had. I always say that I am a better person because I am Jarrett’s mom. He has taught me so much about what is important in life and helped me to grow. I’m not sure I always see why God chose to entrust Jarrett’s care to us but, I’m honored and I trust that He will give us the grace we need to do our best. It isn’t always easy and staying motivated is hard but as scripture reminds us, “I can do all things through Christ who is my strength.”
Jarrett is what I lovingly call, a “marathon child”. Some kids can sprint to the finish line of neurological organization and others run the longer marathon. My philosophy has always been, “progress is progress”. I don’t care how long it takes as long as we continue to improve. You just take one day at a time and learn to let God handle the details. A favorite phrase I’ve learned from Linda is what it means to be “in the trenches” with your child. You just keep digging in and doing the program to build those connections in the brain and strive to establish dominance, increase your child’s processing abilities, improve their reading comprehension and math skills and most important of all - you don’t give up!! You are your child’s best advocate! No one on earth loves them like you do and wants to see them succeed as much as you do so, you’ve got to be the one to help them get to the finish line.
LATEST UPDATE!
For all parents across the world "in the trenches" of doing a neurodevelopmental program with your child(ren), I share this Christ Moment with you to give you hope for your child's future:
Some of you have heard of our son, Jarrett, through the years. We learned about the neurodevelopmental approach when he was seven, he is now 15 and oh, what a journey of blessings and personal growth it has been for all of us. Jarrett was diagnosed at the age of 3 by the medical profession as having "high-functioning autism with a severe speech delay" and as we parents know, didn't have any real answers to share with us except to advise medication and to "get with your school district for an evaluation and to set up goals". My husband said we were also told that he would basically be "uneducable" but my ears, brain and heart must have chosen not to hear that. My husband and I decided that to the best of our ability, Jarrett would be treated the same as his 3 siblings. We never treated him as though he was different and certainly never spoke the word "autism" around him. I still remember those early days of not knowing how to be his mother when nothing I could say or do would help him in the midst of a meltdown - and there were many meltdowns! It was the worst feeling I have ever felt.
So, that's the path we followed until God led us to the neurodevelopmental approach. We had really loving people to help us in those early years of learning how to cope with a child with sensory and language issues. We've been blessed with so many loving angels all through his life!!
We've seen steady progress with the ND approach and endured the puzzle of thinking your child was created to be left dominant because of strong family heredity only to FINALLY submit to your evaluator's (Linda Kane!) gut feeling that he is indeed supposed to be right dominant! Oh the wisdom they have! My stubbornness got in the way!
OK, now to the Christ moment: He is rehearsing with Christian Youth Theatre and will be performing this weekend in Seven Brides for Seven Brothers. He has gotten to know the male lead, "Adam" (aka Riley) recently. He shared with me yesterday that Riley spends time with kids with autism to do stuff with them and help them out. "Mom, so what is 'autism'?" I took a deep breath and shared what I knew and he just nodded his head as he digested the information. Just a few moments ago, he came to sit beside me at the counter over breakfast and said, "You know Riley, mom, the guy I told you about yesterday? I think he's a great guy for working with the kids. May God bless him for it." Once again, I took a deep, deep breath, and told him that maybe he could talk more with Riley and ask how he got involved and maybe HE could get involved with "the kids" as a community service project. He readily agreed. Then, I had to turn my head to keep my composure. Never in my life would I have dreamed of having a conversation like this with my son!! Linda told me probably 7 years ago in response to my email that Jarrett was no long autistic and I remember thinking, "I didn't know it was possible to overcome a "label". I thought it stuck with you forever." While we still work on his increasing processing ability and response time and continue to reach grade level in academics, many, many people who know his story say that you would never know that he was considered autistic. Let me assure you, I had the opportunity years ago to use the same DSM-IV checklist the doctors did and I absolutely agreed that he fell into the autism spectrum.
So, while you are "in the trenches" with your child day after day wondering if what you are doing is ever going to really make a difference, I hope you'll print off this email and re-read it to remind yourself of why you are doing what you are doing. No one ever said it was going to be easy or loads of fun but, it REALLY does make a difference in your child's life!!!
God Bless You!!
Gail Mies
Back to Testimonies
They say life is a journey and boy are they right! Our son’s journey has been such an interesting experience with many twists, turns and yes, a few detours, and yet we continue to look forward to each “mile”.
While we began to have concerns about Jarrett’s development when he was eighteen months old, due to his lack of speech and tantrums, hindsight reminds me that our first concerns should have been right after his birth. He entered this world at a whopping 9 lb. 10 oz., which was 2 lbs heavier than his three siblings, but, his labor and delivery were the easiest by far. What I was reminded of several years later while listening to the first seminar Linda gave on the Neurodevelopmental approach was that there are certain survival instincts our babies are hopefully born with, one of which, is the sucking reflex. Jarrett did not nurse well from the breast. Try as I might, I quickly gave in to formula feeding from a bottle because this seemed easier for him. I always seemed to have reasons for his different behaviors. I reasoned that because he was so much bigger than my other children, he was harder to carry around on my hip. He just didn’t “help” me carry him. I remember now as I write this, the contraptions I ordered from baby catalogs to help ease the load of this big boy. As an infant before learning to crawl, he would lie on his back on the floor and rigidly extend his arms and legs while excitedly wiggling his hands and feet and squealing with joy. Many times he would arch his back and look at the world upside-down. We thought this was the cutest thing! Now I know the dreaded word “stimming.” He was such a sweet-tempered infant except when we had family gatherings. I assumed they always happened around his naptime and that was why he was cranky; soon I learned that he was hyper-auditory. There wasn’t anything glaringly wrong with him physically or developmentally to us in those days to set off alarms so, I just tried to “reason” away his little idiosyncrasies.
We decided to wait until Jarrett turned 3 to give in to our panic over his speech delay. That day came and went and thus began the “journey” of how to best help our son. As long as I live, I will never forget those days from 18 months until about kindergarten. It’s an awful feeling when you can’t understand your child and even worse when you can’t calm their meltdowns with words or hugs. You just know that someone has to stay in control and since your child can’t, it’s up to you to hang in there and ride out the storm. Jarrett had his own language or “jargon” and the few things he echoed that I could understand were “You want cereal” “You want Sprite” “Thomas” (the Tank Engine) and “Mom”. He ate a lot of cereal, drank a lot of Sprite and watched a lot of Thomas videos. My world revolved around making him happy to avoid the next major meltdown. When those meltdowns came, I felt that if you hooked me up to a polygraph machine, you would see how hard it was for me to try to stay calm because inside, the “needle” of the device was frantically scratching bold black lines back and forth across the paper. I shudder just remembering that feeling now.
Although medical “labels” do more harm than good; the harm being that we were told that he was pretty much uneducable and would probably need to be medicated at some point, the diagnosis of “high-functioning autism with severe speech delay” brought some relief because he started special education preschool soon after his diagnosis. I learned how to carry over what he was learning to do at school and to work with him at home. I even went to school with him a few times each month because I so desperately needed counseling and role-modeling.
My angel on earth, Jane, was the first to tell me about the Neurodevelopmental Approach to learning delays. I was helping her “pattern” her son, Tate, with the hope that he would crawl one day. She mentioned that the program she was doing with Tate could be applied to Jarrett even though he wasn’t as severely involved as Tate was. I began to research and soon we were driving to Wichita, Kansas for evaluations every four months. The first time I can say that God “spoke” to me was at the first evaluation with Cyndi Ringoen. We’d been to three different institutions for second and third opinions and they all said the same thing, “Get with your school district and they will help you set up some goals.” When we spoke with Cyndi after her assessment of Jarrett, it was a different experience altogether. She told us things about Jarrett that I know weren’t included in the history form I filled out. She told us why he did some of the things he did, how his brain processed those things, and a third step, how we were going to fix those things. There had never been a third step before!! At that time, I had been trying to find a job at our children’s school with no success and was very frustrated because the details just weren’t coming together. When Cyndi asked me how much time I could devote to working with Jarrett, God said to me, “THIS" is what you’ve been waiting for.” In other words, to me, He was saying that this was to be my new job. A feeling swept through my entire body and I knew that we were in the right place at last! I had no idea how to I was going to accomplish this and, yes, I was feeling very overwhelmed at that moment, but I knew that everything would be OK.
My husband will tell you that program saved our son’s life. That’s a very bold statement and very true. We’ve seen children who have had much in common with Jarrett before we started program and the difference between these children and Jarrett now is night and day. We have a “visual” of what he would be like now if not for program when we see these children. I believe that Jarrett definitely was autistic. I’ve seen the DSM-IV that doctors use to diagnose and I checked off many of those boxes for myself. He had echolalia, was rigid about routine, lined up his toys, had stimming behaviors, isolated himself from peers and family, etc. and I used to think, “Once labeled, always labeled so learn to adapt and be accepting of the limitations.” However, because of program, Jarrett is no longer autistic. Words I never dreamed I would ever be able to say! Now we work on bringing him up to grade level and beyond academically.
Program isn’t just about helping to transform your child because you find that you begin to transform yourself, as well. You change your way of thinking and you find inner strength you never knew you had. I always say that I am a better person because I am Jarrett’s mom. He has taught me so much about what is important in life and helped me to grow. I’m not sure I always see why God chose to entrust Jarrett’s care to us but, I’m honored and I trust that He will give us the grace we need to do our best. It isn’t always easy and staying motivated is hard but as scripture reminds us, “I can do all things through Christ who is my strength.”
Jarrett is what I lovingly call, a “marathon child”. Some kids can sprint to the finish line of neurological organization and others run the longer marathon. My philosophy has always been, “progress is progress”. I don’t care how long it takes as long as we continue to improve. You just take one day at a time and learn to let God handle the details. A favorite phrase I’ve learned from Linda is what it means to be “in the trenches” with your child. You just keep digging in and doing the program to build those connections in the brain and strive to establish dominance, increase your child’s processing abilities, improve their reading comprehension and math skills and most important of all - you don’t give up!! You are your child’s best advocate! No one on earth loves them like you do and wants to see them succeed as much as you do so, you’ve got to be the one to help them get to the finish line.
LATEST UPDATE!
For all parents across the world "in the trenches" of doing a neurodevelopmental program with your child(ren), I share this Christ Moment with you to give you hope for your child's future:
Some of you have heard of our son, Jarrett, through the years. We learned about the neurodevelopmental approach when he was seven, he is now 15 and oh, what a journey of blessings and personal growth it has been for all of us. Jarrett was diagnosed at the age of 3 by the medical profession as having "high-functioning autism with a severe speech delay" and as we parents know, didn't have any real answers to share with us except to advise medication and to "get with your school district for an evaluation and to set up goals". My husband said we were also told that he would basically be "uneducable" but my ears, brain and heart must have chosen not to hear that. My husband and I decided that to the best of our ability, Jarrett would be treated the same as his 3 siblings. We never treated him as though he was different and certainly never spoke the word "autism" around him. I still remember those early days of not knowing how to be his mother when nothing I could say or do would help him in the midst of a meltdown - and there were many meltdowns! It was the worst feeling I have ever felt.
So, that's the path we followed until God led us to the neurodevelopmental approach. We had really loving people to help us in those early years of learning how to cope with a child with sensory and language issues. We've been blessed with so many loving angels all through his life!!
We've seen steady progress with the ND approach and endured the puzzle of thinking your child was created to be left dominant because of strong family heredity only to FINALLY submit to your evaluator's (Linda Kane!) gut feeling that he is indeed supposed to be right dominant! Oh the wisdom they have! My stubbornness got in the way!
OK, now to the Christ moment: He is rehearsing with Christian Youth Theatre and will be performing this weekend in Seven Brides for Seven Brothers. He has gotten to know the male lead, "Adam" (aka Riley) recently. He shared with me yesterday that Riley spends time with kids with autism to do stuff with them and help them out. "Mom, so what is 'autism'?" I took a deep breath and shared what I knew and he just nodded his head as he digested the information. Just a few moments ago, he came to sit beside me at the counter over breakfast and said, "You know Riley, mom, the guy I told you about yesterday? I think he's a great guy for working with the kids. May God bless him for it." Once again, I took a deep, deep breath, and told him that maybe he could talk more with Riley and ask how he got involved and maybe HE could get involved with "the kids" as a community service project. He readily agreed. Then, I had to turn my head to keep my composure. Never in my life would I have dreamed of having a conversation like this with my son!! Linda told me probably 7 years ago in response to my email that Jarrett was no long autistic and I remember thinking, "I didn't know it was possible to overcome a "label". I thought it stuck with you forever." While we still work on his increasing processing ability and response time and continue to reach grade level in academics, many, many people who know his story say that you would never know that he was considered autistic. Let me assure you, I had the opportunity years ago to use the same DSM-IV checklist the doctors did and I absolutely agreed that he fell into the autism spectrum.
So, while you are "in the trenches" with your child day after day wondering if what you are doing is ever going to really make a difference, I hope you'll print off this email and re-read it to remind yourself of why you are doing what you are doing. No one ever said it was going to be easy or loads of fun but, it REALLY does make a difference in your child's life!!!
God Bless You!!
Gail Mies
Back to Testimonies
