I first became aware of the world of Early Intervention services when I was in my early twenties as an education reporter for the local NBC affiliate. I learned much about Early Intervention and and the Early Childhood Education Program through our school district. And even though it was my job to learn about these things to tell a good story that helped our viewers understand our community and world a little better, I never could've grasped it all as well as I do now - on the "other side"with a child with special needs. Once again my different "lives" collide and all of that education I received then has come full circle.
I recently wrote this letter to Michelle,OT, and Carrie, Speech/Language, who work with our family through Early Intervention, and have since Grady was just weeks old. Sometimes those early days are nothing more than a fog of a memory, and other days I remember so well the feelings of being completely overwhelmed by it all. And even if Early Intervention was sometimes part of the overwhelming sensation, I am so very thankful it has been part of our lives, and even one step further - that these specific people have been part of our lives.
Letter:
I just wanted to take a moment to thank you for the work you do. Not only to help us figure out how to help Grady and function more effectively as a family unit where special needs are concerned…but for the assistance in advocating for us as well.
You both know how bothered I was by Grady being the only one in his class who didn’t get a choice in the cereal he got to eat a few weeks back. I felt like I should say something, but just left the center in tears instead, with the knowledge that we are going to run into this scenario in many different formats for the rest of our lives. I sometimes have a hard time distinguishing when advocating is most appropriate, and when I should just let my over-emotional self ponder the situation and realize that I can’t fix everything.
Anyway, what I’m trying to get at is that this morning the cereal was in the hall (we were running a bit late). Amy was out there too and as I got Grady’s coat off she asked him if he wanted cereal. He nodded his head, “yes.” I turned to hang up his coat with plans to lift him up to look at the cereal so he could choose which one he wanted.
When I turned back around, Amy was already doing that…asking him which one he wanted. He smiled at them all. I named Kix, Cheerios - didn’t get any further and he emphatically pointed to the Cheerios. She said, “Okay! Cheerios it is. Go in and I’ll bring some to you.” He was so satisfied with himself that he just proudly marched himself over to the table and sat down.
I am 100% certain that this wouldn’t have happened without your gentle encouragement with the staff during your visits there. To have them acknowledge his right and ability to choose was elation for me, but seeing what it did for Grady was some kind of wonderful I couldn’t have anticipated.
Thanks again. What you do makes a HUGE difference in this world.
Michelle,Carrie, and all who dedicate your professional lives (and very much personal, too) to helping us all in a very important and special way, you have my utmost respect and appreciation.
Thursday, March 25, 2010
Sunday, March 21, 2010
The Label
We are currently at a crossroads with Grady, our son with Down syndrome.
He will turn three at the end of July. This means that although I've finally grown accostomed to (and very, very thankful for) Early Intervention services for Grady, it is coming to an end. The next chapter opens, which means a whole bunch of testing on him and decision making on our part.
The decision making is not easy - mainly because we have no idea what we're doing or what we should be doing. Part of this process is deciding whether or not to continue with developmental disability case management services. There are two very different schools of thought on this, and we didn't know which was the right one to take for our son. Knowing that our case manager hasn't had to be overly involved with us for the past two-and-a-half years makes me think it maybe isn't important for us. But when you talk to other families and think about all the "what ifs," then you think maybe you should look into it.
We did go through with testing to see if he would even qualify at this point. It included an hour of testing with a psychologist whom we met in that moment, in a big, sterile, empty and unfriendly room. The doctor herself was very kind and did the best she could with the task that legislative bodies have handed to her. But it was a frustrating and disappointing hour as Grady refused to cooperate, and much of it was beyond his level of understanding. And with the testing, the child must fail in the same exercise four times before you can move onto the next one. Well, when our stubborn Grady says he isn't going to do something, once is all we need. He was annoyed with the continual push to do these things he already said he wasn't going to do.
After that I got to sit for another hour or so to answer a slew of questions about Grady and his development. It's an emotionally depleting experience, and my favorite question came at the end when the coordinator asked, "What age would you approximate your son to be?" Um...yeah. Two and a half, would be my answer. Developmentally, well...that's hard for me to say, isn't that why I'm here?
Kai and I met with the psychologist on Tuesday night to go over Grady's test results. She places him about two steps behind "average" development...officially giving him the label of "mild mental retardation."
There's so much to say about that. About the inaccurate tests they do, how they really should see him in his own environment, and how there should be tests that measure a more full picutre of the child. According to the psychologist, the wise beings who put law together here say that one can determine before the age of three what "developmental category" Grady falls into and that will be accurate for his life. She doesn't agree with this at all, and neither do we.)
I'm feeling like maybe we should've postponed this "official determination" until the school makes you do it age 8 where it should be more accurate. But at the same time, I don't have a crystal ball to anticipate Grady's future needs. If he is determined to qualify for case management and whatever else comes with that because of this label, it's one less hoop we have to jump through later if unexpected things happen and we don't know where to turn. And it is one less thing that anyone has to deal with should something happen to Kai and me.
As for the DD services, that remains up to a committee. The psychologist recommends continuing them based on his "official label," but we'll see.
I know there is no rule about where Grady will be or what he can accomplish, and that he will have a full and happy life no matter what the future holds because we'll do everything we can to make it so. And it's not like they told us something we don't know. But saddling him with the actual label feels so wrong and as the doctor put it, "really hurts your heart."
This is not easy. Each new phase brings about interesting new challenges. Thank God for Kai. I know this bothers him too, but I appreciate that he thinks a little less with his heart than I do.
I look at other parents that I admire and think, "They've done this. We will be fine." Somedays it just doesn't feel fine, though. And when I have those days, I feel like we're failing Grady. It sometimes feels like when we're faced with decisions and transitions, that no choice is quite "right." I wonder if it will feel like this for the rest of our lives.
I'm thankful that these feelings are "sometimes." I'm thankful that these "sometimes" equate to maybe a quarter of the time or less. And I'm actually thankful for these feelings themselves, because it causes me to take stock of where we've been, where we are and where we should be headed. And it reminds me to focus on what's really imporant!
He will turn three at the end of July. This means that although I've finally grown accostomed to (and very, very thankful for) Early Intervention services for Grady, it is coming to an end. The next chapter opens, which means a whole bunch of testing on him and decision making on our part.
The decision making is not easy - mainly because we have no idea what we're doing or what we should be doing. Part of this process is deciding whether or not to continue with developmental disability case management services. There are two very different schools of thought on this, and we didn't know which was the right one to take for our son. Knowing that our case manager hasn't had to be overly involved with us for the past two-and-a-half years makes me think it maybe isn't important for us. But when you talk to other families and think about all the "what ifs," then you think maybe you should look into it.
We did go through with testing to see if he would even qualify at this point. It included an hour of testing with a psychologist whom we met in that moment, in a big, sterile, empty and unfriendly room. The doctor herself was very kind and did the best she could with the task that legislative bodies have handed to her. But it was a frustrating and disappointing hour as Grady refused to cooperate, and much of it was beyond his level of understanding. And with the testing, the child must fail in the same exercise four times before you can move onto the next one. Well, when our stubborn Grady says he isn't going to do something, once is all we need. He was annoyed with the continual push to do these things he already said he wasn't going to do.
After that I got to sit for another hour or so to answer a slew of questions about Grady and his development. It's an emotionally depleting experience, and my favorite question came at the end when the coordinator asked, "What age would you approximate your son to be?" Um...yeah. Two and a half, would be my answer. Developmentally, well...that's hard for me to say, isn't that why I'm here?
Kai and I met with the psychologist on Tuesday night to go over Grady's test results. She places him about two steps behind "average" development...officially giving him the label of "mild mental retardation."
There's so much to say about that. About the inaccurate tests they do, how they really should see him in his own environment, and how there should be tests that measure a more full picutre of the child. According to the psychologist, the wise beings who put law together here say that one can determine before the age of three what "developmental category" Grady falls into and that will be accurate for his life. She doesn't agree with this at all, and neither do we.)
I'm feeling like maybe we should've postponed this "official determination" until the school makes you do it age 8 where it should be more accurate. But at the same time, I don't have a crystal ball to anticipate Grady's future needs. If he is determined to qualify for case management and whatever else comes with that because of this label, it's one less hoop we have to jump through later if unexpected things happen and we don't know where to turn. And it is one less thing that anyone has to deal with should something happen to Kai and me.
As for the DD services, that remains up to a committee. The psychologist recommends continuing them based on his "official label," but we'll see.
I know there is no rule about where Grady will be or what he can accomplish, and that he will have a full and happy life no matter what the future holds because we'll do everything we can to make it so. And it's not like they told us something we don't know. But saddling him with the actual label feels so wrong and as the doctor put it, "really hurts your heart."
This is not easy. Each new phase brings about interesting new challenges. Thank God for Kai. I know this bothers him too, but I appreciate that he thinks a little less with his heart than I do.
I look at other parents that I admire and think, "They've done this. We will be fine." Somedays it just doesn't feel fine, though. And when I have those days, I feel like we're failing Grady. It sometimes feels like when we're faced with decisions and transitions, that no choice is quite "right." I wonder if it will feel like this for the rest of our lives.
I'm thankful that these feelings are "sometimes." I'm thankful that these "sometimes" equate to maybe a quarter of the time or less. And I'm actually thankful for these feelings themselves, because it causes me to take stock of where we've been, where we are and where we should be headed. And it reminds me to focus on what's really imporant!
Waiting on the Vote
Historical legislation is about to be passed tonight. It's the healthcare bill, which is tied to the student loan bill. Both are so intricately weaved together and complicated, in my opinion, that it's hard to find anyone who really understands the ins and outs of either.
But that doesn't stop ignorant people from throwing their two cents around, which sure creates interesting (and even hurtful) spin...correctness tends to fly out the window.
What I do know is that this legislation will immediately impact my place of work, and eventually some of the people who work there, possibly even me. There are just so many unknowns at this point, and that is an uneasy feeling. I know that the rest of the country doesn't understand the concept of our organization, or what a benefit having such a thing is for the citizens of the state. Our citizens get it though.
I know that the legislation, as it currently sits, is missing many, many, many important pieces to it because those who crafted it aren't involved in the ins and outs of it all. I know that here in our state, we seem to do things right, and I wish that we could just continue this without interference from those who don't understand us.
It's interesting that all of this has been going on for months, but just now people are becoming aware and trying to understand it, and it's now too late. Although I've learned that we humans generally choose ignorance until something hits us in the face and affects our direct world...much like our family with Down syndrome or the world of special needs.
It's been many, many long months of waiting and wondering, so I guess having the final answer tonight is a relief in a way, even if the chips aren't falling on our side.
However, I do think that years from now we will be at a vantage point of saying, "told you so"...and when it comes to the good of our people, that doesn't feel good at all.
But that doesn't stop ignorant people from throwing their two cents around, which sure creates interesting (and even hurtful) spin...correctness tends to fly out the window.
What I do know is that this legislation will immediately impact my place of work, and eventually some of the people who work there, possibly even me. There are just so many unknowns at this point, and that is an uneasy feeling. I know that the rest of the country doesn't understand the concept of our organization, or what a benefit having such a thing is for the citizens of the state. Our citizens get it though.
I know that the legislation, as it currently sits, is missing many, many, many important pieces to it because those who crafted it aren't involved in the ins and outs of it all. I know that here in our state, we seem to do things right, and I wish that we could just continue this without interference from those who don't understand us.
It's interesting that all of this has been going on for months, but just now people are becoming aware and trying to understand it, and it's now too late. Although I've learned that we humans generally choose ignorance until something hits us in the face and affects our direct world...much like our family with Down syndrome or the world of special needs.
It's been many, many long months of waiting and wondering, so I guess having the final answer tonight is a relief in a way, even if the chips aren't falling on our side.
However, I do think that years from now we will be at a vantage point of saying, "told you so"...and when it comes to the good of our people, that doesn't feel good at all.
Saturday, March 20, 2010
Life Lessons and Happiness
We have a family blog. It helps to keep friends and family current with the happenings in our world. This is not our family blog.
This is MY blog.
This is where this 32-year-old, 33-week pregnant current mother of two, who happens to be an eternal optimist, can collect and keep track of her thoughts.
My life is incredibly blessed in ways that I cannot count or measure.
On the other side of the coin, like so many others in this world, it has been laced with large doses of pain, challenges and darkness.
As we await the birth of our third child and we raise two others, one which has Down syndrome, I know that the blessings and challenges are going to multiply exponentially.
And that is a good thing.
As an eager student of life for 32 years now, I appreciate every lesson I learn. During each situation that I find myself in, I pause to ask myself, "What am I supposed to get out of this? What should I be learning here?"
Every day, each challenge and triumph, offers a lesson - or builds upon one I've already learned. I am very grateful for these lessons. Sometimes I am fortunate to have instant gratification and the lesson is immediately evident, but more often the lessons reveal themselves in time. As long as I open myself up to it, the lesson eventually becomes clear - and I become a better wife, mother, daughter, sister, friend, coworker...human being.
I am a believer in the "everything happens for a reason" philosophy. I have witnessed God working in my life, and in the lives of those around me. As time goes by, most everything comes full circle and I can see the chain of events in my life lesson much like a "connect the dots" picture from childhood.
It's rarely easy, but the rewards from being grateful for and mastering life's lessons are priceless.
I believe it is the key to true happiness.
This is MY blog.
This is where this 32-year-old, 33-week pregnant current mother of two, who happens to be an eternal optimist, can collect and keep track of her thoughts.
My life is incredibly blessed in ways that I cannot count or measure.
On the other side of the coin, like so many others in this world, it has been laced with large doses of pain, challenges and darkness.
As we await the birth of our third child and we raise two others, one which has Down syndrome, I know that the blessings and challenges are going to multiply exponentially.
And that is a good thing.
As an eager student of life for 32 years now, I appreciate every lesson I learn. During each situation that I find myself in, I pause to ask myself, "What am I supposed to get out of this? What should I be learning here?"
Every day, each challenge and triumph, offers a lesson - or builds upon one I've already learned. I am very grateful for these lessons. Sometimes I am fortunate to have instant gratification and the lesson is immediately evident, but more often the lessons reveal themselves in time. As long as I open myself up to it, the lesson eventually becomes clear - and I become a better wife, mother, daughter, sister, friend, coworker...human being.
I am a believer in the "everything happens for a reason" philosophy. I have witnessed God working in my life, and in the lives of those around me. As time goes by, most everything comes full circle and I can see the chain of events in my life lesson much like a "connect the dots" picture from childhood.
It's rarely easy, but the rewards from being grateful for and mastering life's lessons are priceless.
I believe it is the key to true happiness.
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