When we went back to the States six months ago, for a visit and doctor appointments, I realized something very important: Liam doesn't know how to listen. Like, really doesn't know how to listen.
Part of this, I think, has to do with his extreme stubbornness (I have no idea where he gets it from), and part of it probably has to do with the fact that he never really learned how to listen. I remember reading an article awhile back that said it often takes kids with mobility issues longer to learn what the word "no" means, which makes total sense if you think about it. From the moment babies start crawling, they hear the word "no." Constantly. Because Liam was 18 months old by the time he started army crawling, and because our house was set up for him perfectly, I never really had to tell him no. Seriously, I think he was almost two years old by the time he heard the word.
I also think the fact that I am with him 24/7, and know what he needs before he even asks, played into it. One time Liam's developmental therapist asked me: "what does Liam do if you don't know what he wants/needs?" I thought about it for a minute and was at a loss: "Ummm, I don't know. That's never really happened before."
When we got back to Kuwait, I knew something needed to be done, so "Operation Time Out" was put into full effect. The problem? Time Outs don't really work for Liam, something I realized rather quickly. He would do his (3 minute) time no problem, but would then continue not listening, which landed him in time out constantly. Time outs definitely weren't helping, and they were making my life miserable.
I also tried slapping his hand, but only when he did something that could hurt him (i.e. his obsession with a power strip, which he somehow always managed to get at no matter how many times I blocked or hid it). The problem? After I would gently slap his hand (okay, so it was really more of a tap), he would look at me, slap his other hand even harder, and yell: "no, no." Apparently, Liam is better at disciplining himself than I am.
So what does works for us? This nifty, little reward chart:
I can't tell you how instrumental it has been in helping Liam learn how to listen. I was sort of at a loss after the time outs didn't work, and realized I needed to think like a teacher. What would I do if I had a classroom full of preschoolers or kindergartners who were having trouble listening and following directions? I'd get a chart with stars, of course! And it has worked perfectly. I can't figure out which Liam enjoys more: getting a star every time he does one of his "big boy chores," or getting to pick out something from the toy chest (i.e. a bin filled with bath toys, books, and puzzles), after he accumulates a certain number of stars. His latest reward -- Rub a Dub tub stickers -- was a big hit:
I also make it a point now to put Liam in charge of things like bringing me his cup when he wants a drink, putting his shoes away, and other little things of that nature. And he LOVES helping me put away groceries. For awhile, I think, we were so stuck in our daily routine that making him do these things never even occurred to me. Not to mention, it's usually just easier to do it myself. Even though sometimes I hate not doing things for him, because obviously when your main mode of transportation is crawling or scooting on your butt, carrying things can be a little more difficult, I know it's good for him. And I KNOW learning to do things for himself will benefit him in the long run.
For special needs parents, milestones can be a tricky thing. We learn to adjust our expectations at the very beginning. We learn to accept and adapt. For me, it was over the course of the third trimester of my pregnancy.
It's worth saying that milestones are a tricky business for most parents, whether or not they have a child with special needs, as we are all prone to comparing ourselves and our children to others. The only difference is that we have professionals come into our homes and actually put our children's "delays" on paper. I have known and read about parents who have been completely devastated by these evaluations. Totally understandable. But, for me, these evaluations never carried much weight. One of the reasons may be because our wonderful therapists prefaced each evaluation with advice like "the numbers don't really mean anything" and "we know Liam is making progress whether the standardized form says so or not." To be completely honest, I couldn't even tell you the numbers and percentages that were written on those evaluations. Of course I'd read them, but only to remind myself of the goals we wanted to work on. I always knew Liam would do things in his own time. And that every little thing he learned to do was, at one time, something we thought he might never be able to do.
Even though I never worried too much about those "delays," I am still beyond excited about his extraordinary reading skills. That's right: my 3 1/2 year old can read. Like, really read. I am especially excited (and a little relieved) given that kids with Spina Bifida and Hydrocephalus often have trouble with reading comprehension and are at a higher risk for learning disabilities. This may be a different story in the future, of course, but, for now, he doesn't seem to be experiencing any of these issues. We've been working on letters and spelling for the past six months or so, and really started working on what sound each letter makes in the last month, and just recently he started reading the starfall* readers on his own.
Of course, Liam has been in love with books since the very beginning. The bookcase was his first stop when he finally learned to army crawl at about 18 months old. At first, he could only move backwards, but he still always made his way to the bookcase:
And when he learned to crawl forwards, he would sometimes sit at the bookcase for hours, just paging through the books (as you may well know, he is a bit obsessed with letters):
And, in case you're wondering, I didn't pick the books out for him. My friend once asked me: "do you pick out the book you want Liam to hold and then take a picture?!" Nope. He just has really good taste in books.
And sometimes I'd find him quietly sitting by himself, reading a book:
He's got the whole writing thing down, too (see video below). I am so proud of my baby, and can't wait to introduce him to the wonderful world of E.B. White: Charlotte's Web, The Trumpet of the Swan, and Stuart Little. I know, I know, I am a total nerd.
*Starfall: we started using the starfall.com site a couple months ago. As I mentioned in this previous post, I'm trying to get Liam as prepared for preschool and kindergarten as I possibly can, and the starfall site has been an invaluable resource. We started with reading the books right on their website. The books are animated and even sound out each letter as you read. And it's free! Here's the link that takes you directly to the books. We also went on amazon and bought the Starfall book collection (they're the same as the ones online), since Liam loves actual books, and can then work on reading when I'm busy doing something else. Geeze, I feel like I've been doing amazon reviews lately, but I figure I might as well let you know what works for us, since it might work for you, too!
Hallelujah! I just made the final payment on Liam's bill from Children's Memorial Hospital* -- a bill we have been paying for three years! And, in just two short months, we will be completely finished paying off his medical debt, with the exception of a monthly charge for catheters. There will be plenty more bills in the future, of course, but, for now, I am breathing a little bit easier.
When the bills first started coming in, I felt like I was drowning. I thought for sure they were going to take us under. The "most bankruptcies are caused by medical debt" statistic ran through my head on a daily, sometimes hourly, basis. I knew we needed a plan. But because I was dealing with so much guilt at the time -- guilt about Liam being born with spina bifida -- I wouldn't ask my (very new) husband for more money. I didn't want to put any more of a burden on him than I felt I already had. I didn't feel like I deserved to ask for what I needed. And we got married so quickly that there wasn't really time for any major discussions about finances, except for the initial one, before Liam's diagnosis, where we decided I would leave my job (since I would essentially be a single parent while he continued to work in Kuwait), and decided on a monthly amount I would receive. Of course this amount was decided before we knew anything about doctor bills or traveling to doctor appointments or even just the extra diapers Liam would go through. Things have changed a lot since then. I finally broke down the first time he came home from Kuwait, when Liam was five months old. I cried and said I couldn't live with the guilt anymore. I told him I worried all the time that he got stuck with me, to which he simply responded: "No, you don't understand. You got stuck with me. You'll see." I started making payments on our medical bills shortly after that.
The first few months after Liam was born were a whirlwind of surgeries, hospital stays, and traveling to Chicago for weekly doctor appointments. At that point I wasn't even opening the mail, but you can only ignore bills for so long. That first year was tough: I could mail out $1500 worth of payments, only to receive a new $2000 bill in the mail the next day. There was more coming in than there was going out for awhile, but I stayed determined. Liam's out-of-pocket medical expenses have totaled almost $30,000 so far, and that doesn't even include the amount that gets deducted from our paycheck in order to pay for our health insurance policy or traveling expenses (at the time we lived 3 hours from Chicago), which would put the total well over $50,000. Liam is worth every penny, of course.
So here's how we did it:
1. I started making small monthly payments on each account; in the beginning this meant monthly payments on as many as fifteen different accounts. Children's Memorial consolidates all services into one bill, but Carle Foundation and Sarah Bush separate each charge: lab work, ultrasounds, doctors, hospital stays, anesthesiologists, surgeons, etc. So even if I was only able to make $25 or $50 payments on each individual account, I did so in order to remain current, and keep the accounts from going to collections.
2. Because the medical bills are interest-free and we also have student loan debt, we decided there was no reason to rapidly pay off the medical debt, even though sometimes I thought that would make me feel a little less like I was drowning. But I knew choosing to pay more on medical debt versus student loan debt would be like putting money into savings when you have credit card debt (that isn't zero percent interest). It simply didn't make sense financially. So we took our time, but remained consistent.
3. Make a deal with the hospital billing department. Although I filled out countless forms for each hospital discount program, we didn't qualify for any. Liam also doesn't qualify for Social Security/Disability benefits (this may change in the future when we switch jobs and/or have more kids). Even the Early Intervention services offered by the state, which are usually free, cost us a monthly fee. Of course, depending on how you look at it, this is a good problem to have, even if having a great job comes with a lot of sacrifices (like missing your child's birth or living/working on another continent for the first two and a half years of his life). Sometimes these sacrifices would feel like too much, and I'd jokingly say to him: "why don't you just come home, work as little as possible, and we'll live off the government?" To which my husband would quickly respond: "are you sure you're not a republican?!" Anyways, even though we didn't qualify for the hospital discount programs, we were able to save a few hundred dollars on some of the bills, by making a "prompt payment." All you have to do is call the hospital and ask if they will negotiate with you if you're able to pay the bill in full. Or sometimes the hospitals will even send a letter offering you a deal in return for payment in full.
4. A little bit of luck (and a
really good insurance policy). For one year, my husband's company
offered Cigna health insurance. That plan had a $1500 out-of-pocket
yearly maximum, which means everything after that initial $1500 was
covered 100 percent. We hit that maximum after one full day of
appointments! I can't tell you how good it felt to receive bills for an
entire year that said "services covered 100 percent." They've since
changed to Aetna, which typically covers 80 percent, while we pay the
other 20 percent. And the tricky part about our plan now is that we can
never quite seem to hit the out-of-pocket yearly maximum, because they
use a tiered system, making it almost impossible to hit the maximum in
any given tier -- you'd have to spend tens of thousands of dollars in
order to hit the yearly max. Totally ridiculous. But just having that
one year without any new bills coming in really allowed us to make a
dent in our debt.
And that's how we did it. Two more months and we'll be free! Well, at least until Liam's next set of appointments in September.
*Okay, so I know Children's Memorial is now called Lurie Children's Hospital, but I don't like change. Let's face it: I still call the Panther Paw by its old name, Stix. And I was still flipping a cassette tape to Side B, even after MP3 players were invented.
*Update: July 10, 2013 -- We are 100% medical debt free! Just in time to take on some mortgage debt... It never ends, does it?! But I'm still breathing a huge sigh of relief. :)
Happy Monday, friends! I'm happy to report we've purchased the tickets for our next trip back to the states, and will be home for an entire four weeks this September. Of course four weeks seems like a lot of time, until you factor in traveling back and forth to multiple locations for a jam-packed schedule of doctor appointments. On top of that, we need to buy a house (or at least get the process rolling). We'll be busy, busy. It's all very exciting and very, very scary. I'm not a person who handles change very well; I know that must sound incredibly strange coming from a person who packed up her entire life (and toddler) and moved to the Middle East, but it's the truth. I am, however, mostly excited to start this next chapter in our lives. And if I'm a little scared while we do it, well, that's fine too.
So here's the plan: Liam and I will be moving back in April of next year and DeMarko will follow us the following April. As much as we all want to come home together, it just doesn't make financial sense to do so. We refuse to have sacrificed so much over the past five years, only to be living paycheck to paycheck six months after we move home. Not to mention the prospect of buying our first home AND changing jobs only a few months later is rather terrifying.
So Liam and I will move home in order to take care of the couple of surgeries he'll need around this time next year (orthopaedic and urological), and then we'll get him enrolled in preschool. We kept thinking he would be starting kindergarten next fall, until I realized his November birthday actually means he'll start the following year. I can't tell you how perfect this is for him. That will give him an entire year of preschool to learn how to get around on his own (whether it be with a walker or a wheelchair), and will also allow us time to figure out the "bathroom situation," and a few other things. I've been working really hard at getting him where he needs to be in regards to writing and reading and counting; that way he can spend his entire year of preschool focusing on socializing, becoming more independent, and getting around on his own. And apparently a new special needs preschool was just built in O'Fallon, so we're thinking that may be the way to go, at least for preschool. Then once he's ready for kindergarten (and beyond), we plan on having him in mainstream classes.
In other exciting news, we bought Liam's first wheelchair. We found a great deal online (what did anyone ever do before ebay?!), and it will be waiting for him when we arrive in Chicago this fall. He'll get fitted for his "fancy" wheelchair during our visit home, but apparently it takes FOREVER for the insurance paperwork to be approved (i.e. eight months), so he won't actually get that one until we move home next year. But I'm sure it will be nice to have a spare, and at least we got a great deal on it.
My baby is growing up way too fast, but hooray for independence!
P.s. If you've been keeping up with Kate and Gavin's story, you're going to want to read this.
Liam finally got to take his new wheels out for a spin. He absolutely loved it, although, next time we'll know that when he wears shorts, his legs tend to slide off the car a bit. Typically when we go out, Liam is in a stroller. When he was younger, he was completely content with this, since he's been an observer, a people watcher, from the moment he was born. But as he's getting older, he's no longer satisfied sitting on the sidelines. He wants to join in.
Enter the award-winning PlasmaCar. It has to be one of the coolest things ever invented. I don't think I've ever seen Liam so free. It's not even specifically made for kids with low muscle tone or paralysis of the legs or feet, but it sure works perfectly, at least for Liam. And, seriously, you can't beat the $50 price tag, especially when so many bikes modified for children with special needs can cost well into the thousands.There is some scientific explanation (that I don't quite understand) having to do with inertia, force, and friction, allowing the car to move without a battery or motor, but here's how it works in a nutshell: the car goes when you turn the wheel back and forth. Seriously, that's it. No movement of the legs or feet required. We have tile floors in our apartment, so he is able to drive around inside with no problems. I know some of the reviewers said they had a hard time with it outside on cement, but the trail we took Liam to drive on had rather smooth cement, so we had no problems outside.
My Mom sent the car to Liam as an Easter present, and the second he saw the box, he insisted I put it together immediately.
By the way: it was super easy and took me less than 10 minutes.
This crazy child was so excited -- he couldn't even be bothered to put clothes on.
Liam is completely and utterly obsessed with the thing. I have caught him, on several occasions, giving it hugs and kisses and telling it "goodnight." He also makes it take naps: Nap time, Car. Night-night.
I didn't even know it was possible for him to get this excited over anything. He's rather low-key. I'm usually disappointed on Christmas, Easter, and his birthday because he is sooooo not dramatic when it comes to opening gifts. I often tell him he needs to take lessons from his Uncle Seanie. My brother used to open a present, jump around, and scream "Oh my God. Oh my God!" For now I guess this is the closest we'll get. I'll take it.
Thanks, Grandma!
Ideally, this is how Liam's bedtime routine is supposed to work: Liam and I cuddle in bed, read one of his favorite books, and say good-night. Once he falls asleep, I sneak out and get to start my night: facebook, reading, emails, The Real Housewives of (enter any city here). My God, do I love my time alone at night. Sometimes, however, getting Liam to sleep and me out of his room takes longer than usual. Here are ten ways he makes sure I feel like it's never going to end:
1. He starts talking in sentences, something he very rarely does during the daytime: Let's get out of here, please Mommy. Turn on the light.
2. He practices spelling his words: F-R-O-G spells FROG. How 'bout...alligator? A-L-L-I-G-A-T-O-R spells ALLIGATOR. How 'bout... etc, etc, etc.
3. Holds out his arms and says, "Hugs, please" and "kiss, please," over and over again.
4. Starts making fart sounds with his hands.
5. Pretends something is in his eye; although, this is also a technique he uses during the day. I have watched this child lie on the floor, push his bike onto his legs, and yell "help, help."
6. Pretends he is a scary monster: roooaaaarrrrrrr!!! (And he is seriously the cutest monster I've ever seen).
7. Talks to the Sesame Street Characters on his walls: Hi, Elmo. E-L-M-O spells Elmo. O is a circle.
8. If I'm reading my Kindle next to him, he starts reading some of the words, saying the page numbers, or yelling "too bright, too bright."
9. Asks to read a (specific) book again: All the World, please Mommy? Alexander, please Mommy? (Thank God he is over his obsession with Blue's Clues books. I don't think I could've handled one more night reading those poorly written books).
10. He suddenly decides his lips are chapped: Chapstick, please Mommy! (I can't resist him when he's polite AND puts my name at the end of his requests).
These techniques of his NEVER FAIL. And I thought this child had me wrapped around his little finger before he started talking?! I'm in trouble.
 |
| Roooaaaarrrrrr!!! |
In other news: In my last post, I mentioned donating to my cousin's special needs classroom in honor of sweet, sweet Gavin. My cousin sent me a note saying her students were so moved by Gavin's story, they decided to make birthday cards and buy books for another child with special needs. The love is spreading, friends, and Gavin's gentle spirit is living on. It makes my heart so happy.
