It always helps me to just maintain a few key mantras for when things get big and overwhelming.
Helping Moose be the best Moose he can be is a big one for me. Also, remembering to approach things methodically and sequentially rather than trying to stare down the million things in front of me all at once.
My other big one is a spin on an old Maya Angelou quote along the lines of 'do the best that you can, and when you know better, do better.' That is probably the hardest for me, whenever I learn something new I get frustrated that I didn't help Moose more by knowing it sooner... but that is just how life is, it's not like I've been sitting around eating bon bons all this time, when I know better I put it into place and move forward from there.
You'll come across things that speak to you, but those are the ones that help me most often.
I am saddened that you (or anyone, or I) have to face this stuff, but life is just messy. Some days I believe in the greater purpose, and those days I know that I'm the best possible person to get Moose what he needs and that my life has prepared me with the tools I need to do it. I am sure that your child is equally lucky with regard to you.
Great parents are like Rocky, it's not about getting knocked down, it's about how many times you can be knocked down and keep getting back up. Just keep getting back up and moving forward. No magic, that really is it, at least in my world.
Friday, March 30, 2012
Newly Diagnosed?
I was recently contacted by a parent whose 15 month old has delays, but is yet undiagnosed. Dad is beginning to realize that his child might never 'catch up' and may actually have a life-long diagnosis that he will have to cope with for the remainder of his natural life. He asked if I had any tips from when I went through this, here's what I told him:
First things first, no matter what happens, you and A are both going to get through things together.
Ok, so this is a big momentous and unhappy place you've come to. I certainly hope beyond hope that A does not have a major diagnosis behind things, but in truth he might. I had in my mind that something might be wrong with Moose early on, and I never felt the settled feeling that my husband did when the tests came back one by one as ok. I remember the phone call getting Moose's diagnosis as clear as if it happened 10 minutes ago. I was absolutely devastated, but part of me knew that 'it' was 'something' and that part of me was relieved that 'something' had a name. In my mind, if it had a name, then there were people who knew about it and I could find them and they would help me. I cried for about an hour straight, and then I got on the phone with the National Fragile X Foundation. Within two days I had a working understanding of the diagnosis, had registered for a Fragile X seminar and booked my travel, and gotten the names of the key researchers and practitioners in the Fragile X field. Basically, I had begun to put on my battle armor, but knowing the name of what was wrong was key to doing this.
I say this not because where you are is an easy place. It isn't. In any way. It's a horrifying place. It's the exact place that every parent since the dawn of time has prayed that they won't ever have to go. It's a scary place and I've been there too.
AND
You've gotta feel this thing you're feeling right now. You have to start to sort out that what ever is going on with A may be more than you thought, and may be more than you think you can handle. That realization will help you own the place you need to move towards, which is that no matter what, you and A are in it together and you will do what it takes. There may be a lot of really shitty things you have to go through. I really hope that you don't, but you might. A might have a life long disability. He might not. You don't know. Not knowing is actually one of the worst things in the whole world.
Ok, so my advice, for what it's worth, is to completely fucking freak out. Give yourself like a solid hour or two to be really freaked out, and totally flesh that feeling out, and cry with your wife, and stare at pictures of the twins when they were born and rage about the loss of innocence and normalness you're supposed to be feeling, and drink a stiff scotch, and wallow. It is really healthy to let yourself be totally freaked the hell out about something this big and scary. Then, take a deep breath, or whatever it is you do to get on your game face, and turn the page on your life.
Here's where you go. When you reach this place that you're in, it is really easy and tempting to get bogged down and overwhelmed with everything that's changing. So much change, so much unknown, so much worry, and what will happen, and how will he be, and how will people treat him, and how will you explain it to friends and family, and how will you pay for it, and on and on and on... game face. The core of your mission in life has not changed. The core of your mission in life, now that you're a parent, is that your primary purpose in the world is to help your children be the very best versions of themselves that they are capable of. Nothing about that has changed. Nothing. A is going to turn out to be whomever he was always going to be. Your job is to help him be the best version of that. What it looks like may change. How you get there may change (if we're honest, it was never going to look the way we pictured... hello infertility, twin pregnancy, prematurity... this has already been headed in the 'not ideal' direction). No matter how it unfolds, A is still your sweet little precious one, and you are still his papa, and you two are in this thing for keeps no matter what.
That's what I've got for you right now. Special needs parenting is not the stuff for magazine covers, it's messy business. It's also really exhausting. It's also really very gratifying. And my Moose is my Moose, no matter what. So give A a hug and just keep being his papa and moving forward. You guys are together, that's what it's all about.
First things first, no matter what happens, you and A are both going to get through things together.
Ok, so this is a big momentous and unhappy place you've come to. I certainly hope beyond hope that A does not have a major diagnosis behind things, but in truth he might. I had in my mind that something might be wrong with Moose early on, and I never felt the settled feeling that my husband did when the tests came back one by one as ok. I remember the phone call getting Moose's diagnosis as clear as if it happened 10 minutes ago. I was absolutely devastated, but part of me knew that 'it' was 'something' and that part of me was relieved that 'something' had a name. In my mind, if it had a name, then there were people who knew about it and I could find them and they would help me. I cried for about an hour straight, and then I got on the phone with the National Fragile X Foundation. Within two days I had a working understanding of the diagnosis, had registered for a Fragile X seminar and booked my travel, and gotten the names of the key researchers and practitioners in the Fragile X field. Basically, I had begun to put on my battle armor, but knowing the name of what was wrong was key to doing this.
I say this not because where you are is an easy place. It isn't. In any way. It's a horrifying place. It's the exact place that every parent since the dawn of time has prayed that they won't ever have to go. It's a scary place and I've been there too.
AND
You've gotta feel this thing you're feeling right now. You have to start to sort out that what ever is going on with A may be more than you thought, and may be more than you think you can handle. That realization will help you own the place you need to move towards, which is that no matter what, you and A are in it together and you will do what it takes. There may be a lot of really shitty things you have to go through. I really hope that you don't, but you might. A might have a life long disability. He might not. You don't know. Not knowing is actually one of the worst things in the whole world.
Ok, so my advice, for what it's worth, is to completely fucking freak out. Give yourself like a solid hour or two to be really freaked out, and totally flesh that feeling out, and cry with your wife, and stare at pictures of the twins when they were born and rage about the loss of innocence and normalness you're supposed to be feeling, and drink a stiff scotch, and wallow. It is really healthy to let yourself be totally freaked the hell out about something this big and scary. Then, take a deep breath, or whatever it is you do to get on your game face, and turn the page on your life.
Here's where you go. When you reach this place that you're in, it is really easy and tempting to get bogged down and overwhelmed with everything that's changing. So much change, so much unknown, so much worry, and what will happen, and how will he be, and how will people treat him, and how will you explain it to friends and family, and how will you pay for it, and on and on and on... game face. The core of your mission in life has not changed. The core of your mission in life, now that you're a parent, is that your primary purpose in the world is to help your children be the very best versions of themselves that they are capable of. Nothing about that has changed. Nothing. A is going to turn out to be whomever he was always going to be. Your job is to help him be the best version of that. What it looks like may change. How you get there may change (if we're honest, it was never going to look the way we pictured... hello infertility, twin pregnancy, prematurity... this has already been headed in the 'not ideal' direction). No matter how it unfolds, A is still your sweet little precious one, and you are still his papa, and you two are in this thing for keeps no matter what.
That's what I've got for you right now. Special needs parenting is not the stuff for magazine covers, it's messy business. It's also really exhausting. It's also really very gratifying. And my Moose is my Moose, no matter what. So give A a hug and just keep being his papa and moving forward. You guys are together, that's what it's all about.
Monday, March 26, 2012
Miracles Can Happen
I literally am holding back tears at the moment. Let me tell you why [unfortunately the longer why is critical to understand why I am thrilled right now :)].
As a part of the evaluations Moose gets to test/track his development, there are several standardized instruments/tests that doctors and academics use to compare kids' functional levels, much the way that the SAT scores HS students' readiness for college. There are loads of different tests, with different focuses and limitations. One of the most common tests is called the Vineland. This is a test that I've answered (it is a 'parent report' instrument, rather than a 'direct assessment' instrument that a trained practitioner answers) at least 6+ times. I've done it for the therapy team, all of the researchers, and for the county in trying to get him social services. In short, I am pretty familiar with this test and how well/not well Moose typically does on it.
While there is no clear cut way to predict what Moose's IQ will be at this age, the Vineland is commonly considered (though not officially) an IQ predictor. This means that the composite score on a Vineland is generally thought to indicate how Moose's IQ will be when he gets to be old enough to receive a typical IQ test. This is not clear cut, for example very young children like Moose tend to do better when younger then they do as cognitive tasks become considerably more complicated as children approach school age (just imagine the difference between a kiddo Moose's age who doesn't have the capacity to deceive, versus that of a 4 year old who can draw the distinction between truth, lies, pretend, dreams, and so on).
Anyway, Moose has never done especially well on the Vineland. His composite score has hovered in the high 60s or low 70s, commonly weighed down by particular weakness in his gross motor skills (which I have always found esp unfair since one's ability to walk has no bearing on one's intelligence). That said (and bearing in mind that the 'average' IQ is 100), here are Moose's first post-shunt Vineland scores, done at 15 months:
Communication Standard Score: 90
Daily Living Skills Standard Score: 88
Socialization Standard Score: 117 - HELLO!
Motor Skills Standard Score: 102
Composite Standard Score: 99
So... just stop and soak that in a minute....
Moose's IQ predictor test just told us that he's currently overall functioning within the TOTALLY NORMAL AND TYPICAL range for a 15 month old!
It's not the end of the story, and his actual abilities are more nuanced, of course, but FREAKING HELL YES!!!!! Even if predictive of absolutely nothing, this test at a minimum indicates that he is doing considerably better than he was the last time he took it. And, this substantial amount of difference can not be explained just by how positive I was feeling about Moose this time versus the last time I answered the test, i.e., my bias alone can not explain a 30 point difference, i.e. MOOSE IS DOING AWESOME!
More info on Vineland, http://psychcorp.pearsonassessments.com/HAIWEB/Cultures/en-us/Productdetail.htm?Pid=Vineland-II
As a part of the evaluations Moose gets to test/track his development, there are several standardized instruments/tests that doctors and academics use to compare kids' functional levels, much the way that the SAT scores HS students' readiness for college. There are loads of different tests, with different focuses and limitations. One of the most common tests is called the Vineland. This is a test that I've answered (it is a 'parent report' instrument, rather than a 'direct assessment' instrument that a trained practitioner answers) at least 6+ times. I've done it for the therapy team, all of the researchers, and for the county in trying to get him social services. In short, I am pretty familiar with this test and how well/not well Moose typically does on it.
While there is no clear cut way to predict what Moose's IQ will be at this age, the Vineland is commonly considered (though not officially) an IQ predictor. This means that the composite score on a Vineland is generally thought to indicate how Moose's IQ will be when he gets to be old enough to receive a typical IQ test. This is not clear cut, for example very young children like Moose tend to do better when younger then they do as cognitive tasks become considerably more complicated as children approach school age (just imagine the difference between a kiddo Moose's age who doesn't have the capacity to deceive, versus that of a 4 year old who can draw the distinction between truth, lies, pretend, dreams, and so on).
Anyway, Moose has never done especially well on the Vineland. His composite score has hovered in the high 60s or low 70s, commonly weighed down by particular weakness in his gross motor skills (which I have always found esp unfair since one's ability to walk has no bearing on one's intelligence). That said (and bearing in mind that the 'average' IQ is 100), here are Moose's first post-shunt Vineland scores, done at 15 months:
Communication Standard Score: 90
Daily Living Skills Standard Score: 88
Socialization Standard Score: 117 - HELLO!
Motor Skills Standard Score: 102
Composite Standard Score: 99
So... just stop and soak that in a minute....
Moose's IQ predictor test just told us that he's currently overall functioning within the TOTALLY NORMAL AND TYPICAL range for a 15 month old!
It's not the end of the story, and his actual abilities are more nuanced, of course, but FREAKING HELL YES!!!!! Even if predictive of absolutely nothing, this test at a minimum indicates that he is doing considerably better than he was the last time he took it. And, this substantial amount of difference can not be explained just by how positive I was feeling about Moose this time versus the last time I answered the test, i.e., my bias alone can not explain a 30 point difference, i.e. MOOSE IS DOING AWESOME!
More info on Vineland, http://psychcorp.pearsonassessments.com/HAIWEB/Cultures/en-us/Productdetail.htm?Pid=Vineland-II
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