Navigating the road less traveled…

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I knew our journey would be different, and at times, more difficult.  I’ve quickly learned that it’s also, pretty frequently, even more joyful and fun and promising than I ever anticipated. But not, it seems, when you are dealing with bureaucracy.

Almost as soon as we heard the words, “Your daughter has Down Syndrome,” everyone started telling us about Tennessee’s early intervention program, TEIS. It’s provided some great and immeasurable benefits for little Miss Lila. Three therapists are at our house so often, our toy poodle Tigger barely even lifts his head off the couch to acknowledge their presence anymore (and that says A LOT). They love Lila almost like family. After parents and best friends, they are the first people I tell when Lila reaches a new milestone.

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And so it was after great soul-searching that Charlie and I decided we wanted to enroll Lila in Siskin for her early intervention services (which include all of her therapies). It would mean giving up the therapists’ home visits but it would also mean she could learn to interact with other children her age, of all abilities, which is so important to us. I want my daughter to feel like she is liked and loved and fits right in to any group.  As an only child, it’s one of the only things I can’t give her at home…yet. And Siskin is AMAZING! We are so lucky to have it in our Chattanooga backyard, right?!? Their teachers are trained to help special needs and typical children learn together. Lila can receive her feeding therapy at an itty bitty table surrounded by other 1-year-olds who are eating the foods she is working towards.  Her physical therapy can come on a colorful carpet with new best friends zooming by her, so she can see how fun walking can be. Occupational therapy means sitting in a circle with a dozen small hands keeping the beat by playing musical instruments while she learns to grasp a tambourine. 

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I’ve been researching the approval process for months, anticipating every question I need to ask, trying to figure out every detail ahead of time. Because you see, special needs children almost always need a state nod to attend Siskin.  Typical children can go on a private-pay daycare basis.  Without state approval, Lila could go to Siskin but would be treated as a typical child, without access to their on-site, specialty therapists. As a high-functioning child with Down Syndrome, we are learning that this approval is hard to come by.

The state of Tennessee apparently thinks that any child with Down Syndrome who is showing progress with home therapy wouldn’t benefit enough from a specialized center like Siskin to warrant the expense. But what I know is that my Lila is worth any cost.

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We are in the middle of this approval process right now. I am constantly asking questions, making phone calls, seeking out answers. One person sends me to another who is confused about why I am calling. No one’s explanation of what happens next is the same. Some answers make me angry, and even more feel like they are in response to questions that have never been asked before. It can feel like the weight of the world is on my shoulders, without any guarantee that this role as Lila’s advocate will ever get any easier. And, admittedly, sometimes it makes me really bitter.  Seeing other moms who seem like their biggest worry is scheduling their child’s next playdate or finding the perfect smocked outfit can make me jealous and even more overwhelmed.  But, more often than not, I realize this is unfair to them, and most of the time my tired mind makes incorrect assumptions. At this moment, it is an all-consuming road to navigate that sometimes feels like it isn’t even paved.

But I know I’m wrong about that.  I know there are many, MANY mothers who have been here before.  If their questions and goals aren’t exactly the same, their intent is. And at the end of the day, my girl is so worth all of this frustration and struggle and feeling of injustice. So I will never quit.  Some days I will complain and feel defeated and want to watch trashy Real Housewives shows to escape.  But I won’t give up. Because regardless of any state policy or any written rule, Lila is my compass. One that I won’t hesitate to fight for.

If you are a special needs mom, know that you are not alone. Sometimes being your child’s advocate feels like it’s the hardest job you’ll ever had. And it might be.  But maybe we were put in these shoes because no one could walk these miles quite like we can. Maybe it’s a roller coaster that makes the highs more rewarding, even though the lows can sometimes bring us down. But the nice thing about a roller coaster is it only takes a second to be back on top.

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Who I am…

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(The following was written by a guest blogger.)

Hi. My name’s Lila and I have Down Syndrome.

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I know that freaks some people out. They are scared I am too different from them. They think my life is sad. They think there are lots of things I will never do.

Boy, are they are wrong. That’s because I AM so many things…

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Sure, I can make scary faces.

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And sometimes I get mad.

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But there is NOTHING I can’t conquer.

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Mommy says I am the FIRST thing she thinks of when she wakes up in the morning, and the last thing on her mind before she starts to dream. And sometimes I show up there, too. That means I AM TREASURED.

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When my Daddy gets home from work, I wave my arms around like crazy until he picks me up and puts me on his shoulders. (Sometimes I try to pull his ear, but we won’t talk about that!) That means I AM SILLY.

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When I see my therapists, I WORK HARD to do the same things that come easily to other kids my age. That makes me DEDICATED. Mommy tells me all the time we don’t need easy, we just need possible.

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When I meet up with my friends, I love to give them kisses. Sometimes they are my size…

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And sometimes they are a little smaller…

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But I AM always LOVING (well, most of the time!)

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And boy, do I LOVE TO DANCE. (And not to toot my own horn, but I think I’m pretty BRAVE for riding on the back of a roaring dinosaur, don’t you?)

I have changed so many minds about what a special needs family looks like. We laugh…

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We play, we sing, we have dance parties. But most importantly, we love each other so much that there isn’t room for hardly any sadness at all. I AM CONFIDENT that I will exceed so many expectations…and you can help me! The next time you see sometime who might look or act differently than you, don’t stare or walk away. Smile at them and say hello!

That’s what I would I do!

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Because really people, don’t freak out. It’s just an extra chromosome.

Love,

Lila

Here’s a message from me and my friends on this Down Syndrome Awareness Day.

<p><a href=”http://vimeo.com/62256838″>Chattanooga Down Syndrome Awareness Day 3-21-13</a> from <a href=”http://vimeo.com/user17192226″>Latricia Milburn</a> on <a href=”http://vimeo.com”>Vimeo</a&gt;.</p>

An Overdue Letter to Lila…

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What a whirlwind few months we’ve had at the Milburn Manor! One of the most exciting and memorable days was, of course, Lila’s first birthday!  When we found out her birthday was 12-12-11 we knew that her first big celebration would fall on a day almost as special as she is, 12-12-12! With a few months of planning, and great help from Lila’s biggest fans, we pulled off a fun 12 Days of Christmas themed party, and even had a special guest stop by!

Every verse of the 12 Days of Christmas was represented…

Here’s 12 Drummers Drumming (favors for all the boy guests), 10 Lords a Leaping (crowns worn by the grandfathers of course!) and 4 Calling Birds (Angry Bird crackers who are trying to pick up some ladies)

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5 golden rings (Krispy Kreme donuts), 7 swans a swimming (taking a dip in the bathtub), and a super cute cake!

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We had our own turtle doves…

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And you can’t forget the Piper Piping or Maid a’ Milking…

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And the guest of honor, the Partridge in a Pear Tree!

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Of course there was singing,

But who would have guessed sweet Santa would stop by!

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It was an amazing day with so many people surrounding Lila who love her!  We couldn’t ask for anything more!

And then, just two weeks later, it was time for Lila’s second Christmas.  But when you count my still drugged-out haze after having a C-section the year before, I kind of count this as my first as a Momma.

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Definitely the most memorable gift of all, after months of teething, Lila’s first tooth popped through on Christmas day, with four more to follow on its heels.  Finally, an explanation for all the gnawing!

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Just a few days later, we had a scare with my Daddy’s heart, when he suffered a heart attack.  We were again reminded of how each day is a precious gift.  When you have a child, your parents’ love becomes even more important.  For their advice, support and most importantly friendship. Suddenly you realize how hard it was to raise another human being, so you’re that much more grateful for the people who didn’t give up on you along the way. Lila’s “Paw” may still be on the mend, but we are with him every step of the way, even in our fashion choices 🙂

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Lila is growing stronger every day!  Learning to stand, which she loves…

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still working on crawling, which she tries the most when she thinks no one is watching…

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But the biggest change of all, if it’s possible, our little girl’s personality is getting even sweeter!  I’m amazed by her each day and am so thankful to be her mother.

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I’m constantly reminded that even though you don’t get to pick the road your life follows, the best joys often come from the places you once feared.  The ones you now can’t imagine your life without…

 

Lila’s a “Star Night”

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One year ago, I sat at Star Night, a benefit for Siskin Children’s Institute in Chattanooga.  My goal was simple: to meet Kenny Rogers. You see, years before, when I was only five or six, I started to notice the presence of a strange salt-and-pepper haired man in my house. Not my Daddy (he still isn’t grey), but a different, distinguished looking gentleman whose face was plastered everywhere.  Even on the inside of our kitchen cabinet doors, in a pose that can only be described as 1980’s classy.

My introduction to the one-and-only Kenny Rogers came at an early age in the form of make-shift karaoke sessions to “Islands in the Stream” and “Coward of the County.” I was, weirdly, just as in love with him as my Mom seemed to be. So when I found out my station had tickets to Siskin’s Star Night and Kenny was the headliner, I was in.

That night, I met Kenny (stretched face and all).  He even commented on my 6-month pregnant belly. I told him if we didn’t already have a name picked out, I would have considered McKenna.

But Mr. Rogers wasn’t the only person I was introduced to that night.  For the first time, I heard of 13-year-old Anna Frierson and her place on her middle school cheerleading team.  Anna has Down Syndrome and is a graduate of Siskin’s Early Learning Center. A few weeks later, I met Anna and her parents to do a story for Newschannel 9. I knew everyone who saw the piece would fall in love with Anna just like I did.   Because of her determination, her spirit, her easy way of fitting in with every other girl on the sidelines. Anna was making herself at home in a spot where no other special needs student had before in Hamilton County.

That night, Anna’s father told me, “We never let any doctor’s diagnosis define our daughter.” I could see the love in his eyes for Anna, his pride.  Little did I know how I would look back on that day, that meeting, and realize it happened for such a special reason. At this moment, Down Syndrome was only the subject of a story to me. A reason to admire the strength of another family. I had no idea, three months later, it would be my reality.

I told that story to introduce this year’s Star Night Video.  I stood in front of a few thousand people and introduced them to the light of my life. But, as it has so frequently in the past 8 months, it didn’t come without tears.  And when I choked up, and told the black-tie audience that I was sorry for getting so emotional, I felt a hand on my shoulder. It was my sweet husband. He told me later he felt like he was being pushed out of his seat, that he couldn’t sit still while I cried on stage.  He held my hand while I finished, and everyone got to see the reason we were there.

After the crowd saw that video, they donated another $40,000 to Siskin Children’s Institute.  I like to think that my Lila helped write a few of those checks.

As the night went on, I met so many wonderful families who shared their stories with me. Many came up just to say that they had been in our shoes, and wouldn’t change it for the world.  It reminded me that whether we are on the stage in front of a crowd decked out in sequins and tuxes, at the grocery store or on the playground, we are not alone on this journey. Someone else knows our pain, our struggles, our pride, our happiness.  As I said to the crowd that night, sometimes life throws you a curve ball, and you just have to adjust your swing.  And you can STILL knock one out of the park.

We sure did.

Banished to the Bathroom…

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Let’s just get it out there.  Being a Mom can be a dirty job.  You have to deal with pee and poop. A LOT. That’s even AFTER you figure out that those swimmy diapers rip off on the side so you don’t have to rake poop down your baby’s legs at the pool (trust me, it’s messy). So, after all that, who wants to spend more time in the bathroom than you have to? Not me, but I’ve noticed that’s where mothers end up, though not by their own choice.

One of the stipulations of the Affordable Care Act, that just went into effect recently, forced employers to provide a place for nursing mothers who returned to work to pump.  A private place that is NOT a bathroom. What’s the big deal with pumping in the bathroom you may ask? Well I have become somewhat of an expert. These are all the places I had the “pleasure” of pumping when Charlie, my Dad and I went to Alaska recently.

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I was shocked to see some of the weary and startled faces I encountered when I had to ask people the best place for nursing mothers to find a little privacy.  The worst? The customer service desk at the Dallas Airport. She looked at me like I literally had two heads (instead of just two boobs that have been working overtime the past 8 months to nourish my child).  So a few times in those 12 hour travel days, I ended up in the family restroom at a couple of different airports.  For twenty minutes I sat there, perched over the bench that is only supposed to hold your purse so I didn’t have to sit on the toilet, while other people knocked on the door and the smell of dirty diapers radiated from the nearby trash can.  Not a pleasant experience.  The Alaska Railroad was a lot more accommodating, thank goodness. On that 5 hour train ride, the conductor personally walked me up and down the whole train, until we found an employee bathroom with a working electrical outlet that would power the pump.  Even the 22 year old summer employee at Kantishna Roadhouse, the only lodge inside Denali National Park, hid his smirk pretty well when he suggested I use an employee cabin.

I realize that traveling, away from your baby, while you are still breastfeeding, is a challenge that I chose to take on in order to experience a once-in-a-lifetime trip with my father.  But was it really necessary to spend all of that time in a “foreign” bathroom, just to feed my sweet Lila? Can’t we all just get over the giggle that seems to go hand-in-hand with the image of what breastfeeding/pumping entails, and be a little more accommodating to women who sacrifice a lot of time to do the best they can by their baby?

I’m not even going to go into all of the strange/somewhat offensive responses I got when I had to call a dozen places in Anchorage, Alaska to find one that was willing to help me ship my breast milk overnight so my supply wouldn’t be wasted.

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If you’re ever in Alaska, be sure to visit the New Sagaya Market, they’ll take extra care in shipping both your freshly-caught Salmon and your breast milk :).

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I am lucky that my employer went above and beyond when it came time for me to come back to work, suggesting a private, unused office that was out of the way for my two 20-minute sessions a day.  I know most people aren’t that lucky, even though it’s now federally mandated that they be. Some will still be banished to the bathroom.

The same is true for moms who find themselves breastfeeding in public.  No one WANTS to whip out a boob in Target, trust me. But sometimes your baby needs to eat and you need diapers AT THE SAME TIME! So don’t give them the stink eye if they’re sitting in the chair by the fitting room, trying to make sure they don’t flash unsuspecting shoppers.

All any of us are trying to do do, whether we are pumpers or breastfeeders, is just make it through the next feeding with a happy baby. 

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We shouldn’t have to spend 3 extra hours a day in the loo just to make sure we get there.

I don’t need easy, I just need possible…

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There is a sort of survival mode that kicks in the day you find out your child has some sort of diagnosis that you never expected.  For us, that moment came the same day we got the final test results from Lila’s pediatrician. The day we knew that Down Syndrome would become part of our life-long vocabulary. Your first feeling is disbelief. The second, fear.  And for me, the third, was a desire to jump into action. To figure out how to make the best of the situation you never thought you would find yourself in.

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Lila-One Day Old

When Lila was a little more than 24 hours old, Charlie left the hospital to go home and take a shower.  On his way, he stopped at Siskin, a Chattanooga-based learning center that specializes in special needs children to find out if they had a spot for Lila. We were both committed to doing whatever we could for our new little girl.

Right away, I discovered the reading about the genetic qualities of Down Syndrome did nothing for me.  Those descriptions, as well as our visit to the geneticist one week later, only held percentages and statistics of what Lila, in their opinion, would never do.  I am not interested in that nonsense.  This doctor met my child for 3 minutes. How could she know what her life would become?  So I started scouring the internet for new therapies and early intervention methods.  I would not wait for a referral for TEIS (Tennessee Early Intervention Services). I called their office and set up an appointment.  I did the same when I hadn’t heard from the therapists who had been assigned to Lila.  I know there is lots of paperwork that comes with state-funded programs, but I refused to sit back and let that keep Lila, and her Mommy, from getting to work in the first weeks of her life.

The first thing we incorporated into Lila’s daily routine was the practices of oral-motor placement therapy. Basically, the idea that in children with low tone, which usually comes with DS, you have to train and strengthen their jaw and tongue muscles through exercises and eating methods, to help with their speech clarity later in life.  We feed Lila sitting up with Drop-In liner bottles (Hello, 1982, right?) which makes her jaw muscles work harder and get stronger.  It also helps keep fluid out of her inner ear, warding off ear infections. A few months later, we started incorporating pre-feeding exercises.  A short routine we go through before Lila eats solids.

As you can see in the video, she thinks they are so much fun!

Lila sees an Early Interventionist from Siskin once a week.

Beth getting down on Lila’s level.

The first time we met Beth, she said, “Lila, we are going to be best friends.”  I knew I was going to like her just fine.

Kilbrey, Lila’s physical therapist, comes to our house once a month to teach Charlie and me how to help Lila reach her next milestone.

Kilbrey helping Lila strengthen her core muscles on the ball.

She’s already helped Lila learn how to roll from tummy to back and back to tummy.  See?

Now, we are working on sitting up and getting into the quadruped position for crawling.

Lila getting ready to crawl

We also see a feeding therapist once a month to make sure that Lila’s first introduction to solid foods lays a good foundation for her eating skills in the years to come.

Lila learning to drink from a cup

We’ve learned that “sippy cups” are a four-letter word for kids with DS, so Lila is learning to drink from a big girl cup and soon, will start with the honey bear. The muscles you use when you drink from a straw are so important for speech and the honey bear encourages that movement instead of the suckle kids use when they drink from a sippy cup.

In those first days after Lila was born, I was so fearful of the months and years ahead.  I thought they would be full of scary days and sad times. Boy, was I wrong. I love being able to take part in Lila’s therapy and learning more about how to teach her take the next step in her development. I’m even taking a 12-hour DVD class that therapists use to become certified in Oral Motor Placement Therapy.

My advice to anyone just starting out on a journey similar to ours… you can do it. Not because you have to, but because you want to. Because to our little Lila, we WILL make all the difference. I’ve said this to myself so many times since Lila was born… “I don’t need easy, I just need possible.”

I Get By With a Little Help From My Friends…

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There is something about the first minutes, hours, even days after receiving a diagnosis for your child that makes you feel immensely alone.  Even with your shell-shocked husband and half a dozen family members standing beside you.  For me, it was this fear that I would never again feel “normal.” That all the play dates and dinners and outings I had envisioned for Lila’s first years somehow wouldn’t happen because she has Down Syndrome.  It sounds silly now, but you never know how you will feel when your world gets turned upside down.  I thought that our little family would be on this journey alone.

(A little background music :))

Boy, was I wrong.

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This was our third night in the hospital.  Karen, Tiff, and Erin came to visit and we walked Lila through the hallways on the rolling bassinet they make you push when you want to take your newborn out of your hospital room.  We talked about all of our kids meeting for the first time, how often they would play together. It was the first glimpse I got into how many people would love our little girl almost as much as we did.  Without any obligation… just because they wanted to.

Right away I learned that little Lila’s “fan base” was growing by the minute.  Best friends came from far away to meet Miss Lila.

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And those who haven’t met her yet, celebrate her victories with just as much excitement as we do.

She had her first “play date.”

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She visited Mommy’s friends at work.

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Some of our best friends started to kick US out of the house, so they could hang out with her (and we could go see a movie :))

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It’s amazing the feeling a Mother gets when she sees someone hold her child, and love her almost like their own.

“Normal” is a complicated word. And though it may mean conforming to a standard, there’s no one definition.  Each family creates their own normal.  I think that, at first, I was so scared our normal would be so different from everyone else’s.  What I’ve learned is that, because of all the people who love my Lila just the way she is, her life will be so much more than the typical we so craved the first time we learned she has Down Syndrome.  How can it not with best friends like all of this?

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