I promise that Celiac Squirrel will be posting recipes to this blog at some point in the near future! But for now, you’re stuck with another post from Pink Sweatpants.
A mom who has an infant with Down syndrome asked me how on earth she should be organizing the mountains of paperwork her son’s care has already generated. I shall answer that question after I tell you a
brief long story:
In 8th grade, I was in the “Smart Kids” class. And for some crazy reason the smart kids in my class were also the popular kids, the athletic kids, and the rich kids. Um, I was not popular, nor athletic, nor rich. Dream big dreams? Not me! I had aspirations of mediocrity. One day, our teacher asked each student to tell the class what they wanted to be when they grew up. “A doctor!” “A lawyer!” “A baseball player!” Those were the common answers. My response? “A secretary!” No, seriously. The teacher looked dumbfounded and asked “Well, what kind of secretary? A legal secretary?” I didn’t even know such a thing existed, so I simply told him “It doesn’t matter. Any kind of secretary would be fine.” Let me explain that I was voted “Smartest” that year, so you can imagine how confused my teacher would be when his smartest pupil only aspired to be a secretary. But that’s truly all I ever wanted to be.
The writing may be faint, but that year I won “Friendliest”, “Teacher’s Pet”, and “Smartest”
Do you want to know how long it took me to find this piece of paper containing our class superlatives from 1993? Three minutes. Yep. Because I am just that organized. (Just had to go down to the basement, open the box labeled “Yearbooks” and, voila!)
Do you want to see why I wasn’t winning any popularity awards back in ’93?
Now you KNOW that girl was Teacher’s Pet!
I think we can all agree that the past six months have been extremely challenging for me. Jack’s autism diagnosis all but made me die a little inside. It was like getting hit in the face with a shovel (The “hit by a ton of bricks” or “run over by a truck” analogies would also be appropriate here). I just wanted to yell “Stop! No more diagnoses! UNCLE! UNCLE!!!” But life can be unrelenting and you don’t get to choose how many syndromes or disorders your child has. Every new diagnosis seems to add an additional 20 lbs or so to my once-slender frame. This year with all of Jack’s new diagnoses I seemed to (literally) gain my “Freshman 50” (it’s 50, not 15, right?). I shall be losing said weight shortly, but for now I’m still neck-deep in paperwork. The paperwork . . . is . . . never-ending.
For those of you who have never been to my house, it’s easy to assume that I’m all Martha Stewart-esque: A place for everything and everything in it’s place. Ha! For those of you who HAVE been to my house, I can hear you laughing! My house is what I’d classify as “an organized mess”. It might look like a tornado ran through it, but I can tell you where even the smallest receipt or sticky note is. Here are some photos that “show off” my organizational style:
My “office” AKA Jack’s old bedroom
Jack’s changing table on the right, topped with his Medical Binder, and remnants of his broken-down crib that needs to be kicked to the curb
Piles. So many piles! And Gary the Snail on your right (I just finished crazy-glueing most of him back together after Jack dropped him, and he still needs eyes). Because everybody should have a solar-powered snail on their desk.
Our coffee table. And yes, it ALWAYS looks like this.
If Martha Stewart ever visited my house, she would have a panic attack of epic proportions. Possibly requiring hospitalization. So how on earth is it that someone who seems to be so incredibly disorganized can find her 8th grade yearbook in 3 minutes flat? Well, because she’s NOT incredibly disorganized. I’ve got my binders. And I’ve shown you all my binders, but here they are again. For posterity (whatever that means):
The binders are (from left to right):
Black Binder–Jack’s Early Intervention Binder 2006–2009
Skinny Blue Binder–Jack’s Medical Binder, Volume 1, Birth–2012
Bigger Blue Binder–Jack’s Medical Binder, Volume 2, 2013 —
Green Binders–Jack’s School Binder and Jack’s MassHealth Binder
Jack’s Early Intervention Binder 2006–2009
I save EVERYTHING. And believe me, that has worked to my advantage more times than I could count! The black binder on the left is Jack’s “Early Intervention” binder. Here’s how EI works: Every time a therapist comes to your house, they write down on a sheet of paper what therapy they’ve done that day, how the child is progressing, if the child wasn’t feeling well, etc. They keep a copy for themselves and they give you a copy.
OPTION 1: KEEP THOSE COPIES! Why? Because someday you will want your child with Down syndrome or autism (or both) to be seen by a specialty clinic (like the Down Syndrome Program at Children’s Hospital, the Down Syndrome Program at MassGeneral, or The Lurie Center for Autism) and they will mail you a ginormous intake packet that asks questions like these:
What parent is going to remember this stuff off the top of their head?! I literally had to scour Jack’s Early Intervention notes to find the answers to these questions. Maybe the majority of parents just leave this section blank. I mean honestly, how badly do the doctors really need to know this stuff?
OPTION 2: Instead of keeping evvvvery single therapy note, just print out the intake packet for the clinic that your child may see in the future (the intake packets are almost always available online) and complete it as your child reaches each milestone. This is easier if your child has a condition like Down syndrome, because they receive that diagnosis at birth, or even before. But you can’t predict whether or not your child is going to have autism, so my advice would be if your child is receiving Early Intervention services for any reason, keep the notes to be on the safe side. Maybe your child simply has a speech delay and 6 months of Early Intervention fixes the problem. That’s great; you probably don’t need to keep the EI notes. But if your child is about to “age out” of Early Intervention (when they turn 3) and is going to be entering preschool, odds are you’ve got a child with more than a speech delay on your hands. Save the EI notes. Just in case.
Jack’s Medical Binder, Volume 1, Birth–2012
This binder includes the results of my amniocentesis, showing that my fetus had Down syndrome. Both the Ds Clinic at Children’s and at MassGeneral wanted chromosomal test results showing that my child had Down syndrome. Well, I got them right here in Jack’s Medical Binder!
This binder also includes all of the notes from Jack’s 2-week NICU stay because these intake packets will hit you up with questions like:
And no, these are not unusual questions. I’ve had to answer some of these questions on everything from OT forms to GI forms. You never know when someone’s gonna need your kid’s APGAR scores.
Now, before you conclude that all of this medical information is absolutely ridiculous, I will give you a reason to believe otherwise:
This would be the Down Syndrome Patient Registry. Here’s the purpose of this registry:
By accurately completing all of these exhausting intake form, you’re actually helping Down Syndrome Clinics all across the COUNTRY (not just here in Boston) collect data that could potentially change the way they treat newborns, toddlers, teenagers, and adults with Down syndrome. If the data compiled from this registry shows that a significant percentage of babies with Down syndrome have a high bilirubin count within a day of birth, maybe that will affect the care they receive as newborns. Maybe parents could be informed of this fact ahead of time, which could lessen their anxiety knowing that this is common for newborns with Down syndrome. You just never know.
Jack’s Medical Binder, Volume 2, 2013–
Volume 2 is a 3″ binder and the stupid thing’s already half-full. Because all of the paperwork that I SHOULD’VE completed back in 2011 didn’t get completed until the very beginning of this year. So what’s in this binder? Every test result, every doctor’s note mailed to us by each of Jack’s 8+ specialists, every record of immunizations. If it happened in a doctor’s office, it goes in this binder. Since I frequently complain about the amount of paperwork it takes to have a child with special needs, a friend of mine made a great suggestion: If every packet is asking you the same questions over and over again, type the answers onto labels. Then instead of having to write in the answer, just slap a label on the form. Unfortunately, that doesn’t necessarily work. You’d have to see how different each of these packets is to know why it wouldn’t work. BUT I did implement her idea in another way. EVERY single packet asks you for information on any surgeries, hospitalizations, illnesses, or diagnoses your child has/had. And the “hilarious” part is that they usually give you five lines to write in all that information. Oh my gosh, what a hoot.
So instead, I use those 5 lines to write in “Please See Next Page” and I print out an Excel spreadsheet containing every surgery, hospitalization, illness, and diagnosis Jack has ever had/received. In chronological order:
Because I would need EIGHTEEN lines to accurately complete that question on an intake form. I’ve used my Excel spreadsheet no less than 4 times so far. A million times easier than trying to remember the dates of every surgery and hospitalization, and cramming all that information in on 5 lines!
Jack’s School Binder
Once your child “ages out” of Early Intervention, they may head right into preschool. The preschool will do an analysis of your child and based on their findings they will draft your child’s IEP (Individual Education Plan). Your copy of the IEP goes in the School binder. Your child’s school may send out quarterly evaluations. Those go in the School binder. Your child may receive Behavioral Therapy at school. That goes in the School binder. If it happens in school, it goes in this binder.
Jack’s MassHealth Binder
Okay, this binder is kind of a “free-for-all” binder. Dealing with MassHealth is a nightmare. Save everything they mail you. I’ve actually had to keep a Call Log with dates, times, and the names of each person I spoke to over the phone because MassHealth is so dysfunctional. But in Jack’s case, the MassHealth binder contains more than paperwork from MassHealth. This binder basically contains everything from any state-run organization through which we receive care and/or benefits. Department of Developmental Services (DDS)? In this binder. Department of Children & Families (DCF)? Northeast ARC? Department of Public Health (DPH)? Fidelity House? DESE/DDS forms? ALL in this binder.
Recently, I typed up a list containing the names, titles, and phone numbers of every one of Jack’s specialists. I made a separate list with this same information for all of the specialty clinics that Jack attends. I made another list that I call “Resources”. This contains the name and phone number of our DDS service coordinator, our Fidelity House case manager, etc. Then I created a “Miscellaneous” list that includes Jack’s social security number and Jack’s medical record numbers at Children’s Hospital, MassGeneral, and Tufts. These lists are three pages long (He’s literally got 10 specialists. I’m not making that up.). The pages are stapled together and filed at the very top of Jack’s Medical Binder, so it’s the first thing I see when I open it. Now I don’t have to go fishing around for the phone number for Jack’s Endocrinologist. I know exactly where to find it.
I also created an “In Case of Emergency” packet that I send up to Maine with Jack whenever he’s staying at my mom’s. This packet contains his full name (my mom literally didn’t even know Jack’s middle name was Henry), his pediatrician’s name, address, and phone number, a list of his current medications along with their mg amounts and dosage instructions, copies of the front and back of Jack’s BC/BS and MassHealth insurance cards, Jack’s Medical History Excel spreadsheet, and the list of all his specialists with their phone numbers. That way, if they ever had to rush him to an emergency room the doctors would have all the information they needed. (The packet also includes a signed consent form allowing specific family members to make decisions about Jack’s care in my/Dave’s absence.)
So although my house and life are a total disaster, all of Jack’s information is organized and easily-accessible. Since he just started receiving therapy after school 4 days a week, and since he’ll be receiving ABA once we get our insurance issues squared away, I don’t know if I’ll need to start a Therapy binder. But I’m in no rush to make another binder if I don’t absolutely NEED to!
The bottom line is, find an organizational system that works best for you. This is what works best for me because Jack is such a medically-complicated kid. Making all these binders for a child who has a speech delay or minor sensory issues would be overkill. But for us, this is what works. I told my husband that I may only be an adequate mom, but I’m an awesome secretary. And that’s actually what Jack needs more at this moment. Because I could smother him with all the love and affection in the world, but if I don’t get that paperwork filled out, he’s not going to be able to get Speech Therapy, or Sensory Therapy, or Occupational Therapy, or ABA. He’ll be a happy kid, but he’ll never progress beyond his mental age of 21 months. There is an end in sight. I’ve got another month or two of paperwork to complete, but then all of his services should be in place. And then maybe I can actually have a life!