Kelly and I have specifically avoided sharing too much about Cole with more than a select group of people lately. Trying to wrap our brains around a few things. Trying to give our son some respect and privacy. Trying to learn.
But it's now become harder NOT to share what's going. So much of our family life the last few weeks has revolved around people moving in and out of our lives trying to help us. They deserve credit where due and the whole system needs talking about because of the holes and flaws we've noted. So I've decided to explain a few things. 1) My hope is that this is one of those situations where one day Cole will read this. 2) Other families are going through this and maybe a few have opinions, thoughts, want to connect. Some of you are familiar with Leda's birth and month in the NICU and I learned a lot in that experience about how important it is to become part of the support community.
I've been working in my head forever trying to figure out how to explain...the process. Ordeal is maybe a better word? It's actually maybe a little easier to work backwards....
Cole has problems with his speech and behavior caused by sensory-motor issues. I'm finding it enlightening to think of him as hypersensitive. It plays havoc on everything from his ability to hold a crayon to not liking tags on his shirts rubbing against his neck to not being able to organize thoughts to make a verbal statement. It sounds scary, but really it just means he's wired a little different than other kids his age. His brain functions in a unique way. Which is why it often gets confused and misdiagnosed as things like autism or ADHD.
That's the end point. Where we're at now. He's happier, having conversations with us, in a better mood, less frustrated, and exploring the world intensely. But that's the middle point of a much longer journey.
It started at his pediatrician with the lack of talking. Let's have him evaluated. It sounded easy enough, but the resources the doctor gave us were out of date and I had to go on a hunting expedition to figure out where to turn.
Edit that. I knew where to turn, but not how to get there. Being under the age of 3, the state of IL has an Early Intervention program to screen and help at-risk kids with developmental issues. After lots of paperwork, questionnaires, interviews with us, we finally had a time scheduled for a team (yes, a team) of psychologists to come to our (tiny) home and talk with us, watch him play, ask him questions, and see if he qualified for the state program by being significantly delayed in certain developmental areas.
It turns out, Cole is delayed in multiple areas--all due to the one issue behind all of it. His sensory-motor issues. So, for the past few weeks, 3 days out of the week we have a therapist who comes to our home for an hour. One day it's a focus on behavior/sleep/development/coping. The next day is speech therapy. The day after that is occupational therapy to focus on sensory input, movement, and motor skills.
But Cole is about to age out of the Early Intervention program on his birthday...which means he needs to be handed off to the local elementary school district for evaluation and services. It will no longer be at home, but that's fine because it appears (we're still working on it) he will qualify for a 4 day-per-week preschool where he will receive his speech help (the only therapy that will continue forward, we think). It's a local school where all the teachers have Masters degrees in the early childhood areas the kids need help in. We actually are blessed to have several in our community...this one includes the daughter of one of our therapists and is for bright children (no cognitive delays) who need less extra help and more integrated work with their individual areas of need.
Because, in the end, that's what is the hardest to wrap my brain around...where individual differences end, where normal behavior is, though whether my kid is benefiting from the help is less debatable than I once thought maybe. I was more skeptical early on and have changed my tune a bit given the radically improved Cole who carries on conversations with me, colors, is willing to wear a wet shoe at the park without freaking out, and who throws a tantrum per week now rather than one per day.
This week, we've had a bit of a scare that a couple of our services were being dropped because Kelly's insurance does not cover home visits...we have to visit an office despite research showing that young children it's more effective to get treatment in their typical environment. That's why the state's EI services are in your home. Which meant Cole would face a long summer of no help and no improvement. Fortunately, one of our therapists had experience in the issue and knew immediately how to get the entire time on the same page so that Cole didn't even miss one session and could get his speech therapy like normal today. Of course, the sad irony is that the state program now picks up the bill instead of the insurance company. So, thank you, taxpayers for coming through when the stupid insurance company fails a 2 year old. And, needless to say, that's also why these Early Childhood programs are so important and need more funding. At least the school district has called this week to setup Cole's evaluation for the program next week.
So it's been a few months of ups and downs. Usually confusion. Trying to be a strong advocate for my kid. Well, kids...the beauty of it all is that Leda has been benefiting from Cole's services and gotten sort of an informal check-in from all of Cole's providers. For those wondering, Leda is showing no signs of being at all behind developmentally despite the fact that she was a preemie. Though it might not hurt to get her evaluated. For those of you with young children, please note that the sooner you have questions or concerns, the sooner you should find resources. The evaluation is usually free and the more time they will have in the program to get help.
If you're in Illinois, check out The Illinois Early Intervention (EI) Clearinghouse.
But it's now become harder NOT to share what's going. So much of our family life the last few weeks has revolved around people moving in and out of our lives trying to help us. They deserve credit where due and the whole system needs talking about because of the holes and flaws we've noted. So I've decided to explain a few things. 1) My hope is that this is one of those situations where one day Cole will read this. 2) Other families are going through this and maybe a few have opinions, thoughts, want to connect. Some of you are familiar with Leda's birth and month in the NICU and I learned a lot in that experience about how important it is to become part of the support community.
I've been working in my head forever trying to figure out how to explain...the process. Ordeal is maybe a better word? It's actually maybe a little easier to work backwards....
Cole has problems with his speech and behavior caused by sensory-motor issues. I'm finding it enlightening to think of him as hypersensitive. It plays havoc on everything from his ability to hold a crayon to not liking tags on his shirts rubbing against his neck to not being able to organize thoughts to make a verbal statement. It sounds scary, but really it just means he's wired a little different than other kids his age. His brain functions in a unique way. Which is why it often gets confused and misdiagnosed as things like autism or ADHD.
That's the end point. Where we're at now. He's happier, having conversations with us, in a better mood, less frustrated, and exploring the world intensely. But that's the middle point of a much longer journey.
It started at his pediatrician with the lack of talking. Let's have him evaluated. It sounded easy enough, but the resources the doctor gave us were out of date and I had to go on a hunting expedition to figure out where to turn.
Edit that. I knew where to turn, but not how to get there. Being under the age of 3, the state of IL has an Early Intervention program to screen and help at-risk kids with developmental issues. After lots of paperwork, questionnaires, interviews with us, we finally had a time scheduled for a team (yes, a team) of psychologists to come to our (tiny) home and talk with us, watch him play, ask him questions, and see if he qualified for the state program by being significantly delayed in certain developmental areas.
It turns out, Cole is delayed in multiple areas--all due to the one issue behind all of it. His sensory-motor issues. So, for the past few weeks, 3 days out of the week we have a therapist who comes to our home for an hour. One day it's a focus on behavior/sleep/development/coping. The next day is speech therapy. The day after that is occupational therapy to focus on sensory input, movement, and motor skills.
But Cole is about to age out of the Early Intervention program on his birthday...which means he needs to be handed off to the local elementary school district for evaluation and services. It will no longer be at home, but that's fine because it appears (we're still working on it) he will qualify for a 4 day-per-week preschool where he will receive his speech help (the only therapy that will continue forward, we think). It's a local school where all the teachers have Masters degrees in the early childhood areas the kids need help in. We actually are blessed to have several in our community...this one includes the daughter of one of our therapists and is for bright children (no cognitive delays) who need less extra help and more integrated work with their individual areas of need.
Because, in the end, that's what is the hardest to wrap my brain around...where individual differences end, where normal behavior is, though whether my kid is benefiting from the help is less debatable than I once thought maybe. I was more skeptical early on and have changed my tune a bit given the radically improved Cole who carries on conversations with me, colors, is willing to wear a wet shoe at the park without freaking out, and who throws a tantrum per week now rather than one per day.
This week, we've had a bit of a scare that a couple of our services were being dropped because Kelly's insurance does not cover home visits...we have to visit an office despite research showing that young children it's more effective to get treatment in their typical environment. That's why the state's EI services are in your home. Which meant Cole would face a long summer of no help and no improvement. Fortunately, one of our therapists had experience in the issue and knew immediately how to get the entire time on the same page so that Cole didn't even miss one session and could get his speech therapy like normal today. Of course, the sad irony is that the state program now picks up the bill instead of the insurance company. So, thank you, taxpayers for coming through when the stupid insurance company fails a 2 year old. And, needless to say, that's also why these Early Childhood programs are so important and need more funding. At least the school district has called this week to setup Cole's evaluation for the program next week.
So it's been a few months of ups and downs. Usually confusion. Trying to be a strong advocate for my kid. Well, kids...the beauty of it all is that Leda has been benefiting from Cole's services and gotten sort of an informal check-in from all of Cole's providers. For those wondering, Leda is showing no signs of being at all behind developmentally despite the fact that she was a preemie. Though it might not hurt to get her evaluated. For those of you with young children, please note that the sooner you have questions or concerns, the sooner you should find resources. The evaluation is usually free and the more time they will have in the program to get help.
If you're in Illinois, check out The Illinois Early Intervention (EI) Clearinghouse.