How I Sleep Trained My Trisomy Toddler

1536110594232.jpgI am not an expert at parenting.
If anything, I feel like this entire blog is dedicated to all the ways I struggle as a parent, specifically, a special needs parent.  I have hesitated posting my experiences with sleep training my daughter for fear that I may jinx it…. sleep is next to godliness, y’all, and I’m very grateful for the 8 hours I get every night.  It took me 15 months of sleepless nights to get there, but in case anyone out there is struggling like I was, here is how I solved my sleep problems.
Georgia NEVER used to sleep.  I would go days surviving on *naps* praying that someday she would grow out of it.  Finally, after desperation, we met with a sleep specialist who interviewed me about all of Georgia’s sleep problems…. she would reflux.  She would wake up screaming.  She’d take hours to settle back down.  She scream for hours.  She was a mean kid because she was tired.  I couldn’t put her down awake.  The list goes on & on.  The doctor put it to me very plainly…. if I couldn’t get Georgia to sleep through the night on her own, she’d have to be medicated if I ever expected to sleep again.
No, no, nope, and no way, Jose.
So, I decided, after FIFTEEN MONTHS of suffering, to sleep train.  Honestly, what did I have to lose?  I was already not sleeping.  She was already crying for hours on end.  Even when our pediatrician & neurologist suggested benadryl and/or melatonin, they didn’t help.  I had absolutely nothing to lose.
I spoke to several of my mom friends.  The ones who had typical kids suggested sleep training through some form of the cry-it-out method (CIO).  The moms who had developmentally delayed kids like my own all mostly insisted it was impossible.  Some said their children got better with age, but majority stated that Trisomy kiddos just do not sleep, and they’d been suffering for years.
No, no, nope and no way, Jose.
I read a million articles on Pintrest.  Every single one was guided towards typical kids, and various variations of CIO.  Some would say it wasn’t CIO, but for Georgia, it certainly would be.  I tried to find the most gentle version of sleep training, and then made the scary, but necessary, decision on when to start.
You can’t start if you have a vacation coming up soon or some kind of event that will mess up your routine.  I actually picked a week that I knew my husband would have to close every night because I knew he’d crack before I did.  I also picked a week where at the end, my stepsons would be there on the weekend.  I wanted Georgia to learn how to sleep even when there is background noise in the house.  It seemed unrealistic to expect it would always be quiet in our house after 7pm.
I also pushed her bedtime back to 9pm.  This is just what worked for us.  I like to stay up late & I like to sleep in, so 9pm-9am seemed doable as far as her sleep schedule would go.  According to my research, children at 15 months age should nap 1-2x daily, only around 2-2.5 hours total.  Their nighttime sleep should last about 12 hours, so that’s how I planned it out.
I initially started with a routine.  Absolutely key for Georgia.  Every day we wake up at 9am, on the dot.  Even if she tries to sleep in, I don’t let her sleep past 10am.  I know I’ll regret it later.  Naptime is inconsistent, but I have two rules… no napping past 5pm, and no napping for longer than 2.5 hours.  I need her to be TIRED when it’s time for bed, but not over-tired or she catches her second wind.  In the beginning, naps were absolutely necessary to a successful night, but as she’s aged that has changed.  Obviously, we attend SO MANY APPOINTMENTS so it’s impossible for me to really be consistent with naps, except for those two rules.
Our bedtime routine actually starts two hours before bed, sometimes three.  Around 6pm, I play Moana, her favorite movie.  This is kind of her independent playtime, where she can relax from whatever events we had during the day.  Around 7:30pm, we do dinner.  She dreads it, so we try to make it into a fun event centered around her.  We play music, sing, and even play with toys while she eats.  After, I let her finish her movie, or watch an episode of Mickey Mouse Clubhouse while I clean up after dinner.  I clean up all her toys from the day and do the dishes for the night, as well as get her bath ready.  After 20 minutes, she starts to whine, and I know she’s ready to start actually moving towards sleeping.  She takes a bath, and then we move straight to her bedroom.
Now this is where it’s insanely personalized to what works for us.  I heavily recommend making any changes you feel with help the transition and make your kiddo sleepy.
I lotion her up while I play music on her LeapFrog Violet stuffed dog.  This stuffed animal is her absolute favorite belonging, as it sings and talks using HER name.  I play the songs while I diaper her.  When it comes to PJs, I allow her to make the choice out of two pairs of what to wear.  I read that this helps kids feel more in control of their routine and I felt it was a great “therapy” moment for her.  Also, I use her love of Violet to practice her sign language and have her sigh “more” when she wants another song.  It’s what works for us.  Depending on the day, I make the call on whether or not she may need Benadryl or Melatonin.  I want to explain this for my Trisomy mamas.
Georgia has obstructive sleep apnea that only flairs up due to some kind of irritation that causes her nasal passages to swell.  If she is healthy (no allergies, no reflux) we do not use Benadryl.  We do use melatonin somewhat regularly, but I do try to avoid it, and give her the tiniest dose (1mL).  If we have a heavily stimulating day, where I can tell she is going to have a hard time winding down, she gets melatonin.
Back when we started sleep training, we would administer her meds in her bedtime bottle.  So after dressing her, I’d turn the lights down low (we use a lamp instead of the overhead light) and turn on her mobile, which plays about 30 minutes of music.  I would read a short book to her in the rocking chair, and then feed her the bedtime bottle.  At this point, fingers crossed, she’d become very sleepy.  In the beginning, I would not let her fall asleep on me ever.  It becomes a crutch.  Right before she’d fall asleep, I would stop the bottle and put her down in her crib in her most comfortable position (tummy for her).  Then I’d put on soft music in 15 minute increments and cut the lamp off, to make the room totally dark.  She has two nightlights in her room as well.
The first night was awful. She cried and cried, while I sat right next to her in my chair.  I would time it, and every 15 minutes, I would stand up and pat her until she’d take a break from hysteria, and I would reset her music.  Right as I was about to give up and pick her up and rock her and apologize for being the world’s worst mom, she fell asleep.  I had read that if I had picked  her up and “cracked’ I would have had to start all over again.  I’m glad I didn’t.
Now as she woke up throughout the night, I would give her five minutes to fuss on her own.  After five minutes, I’d turn her music on again, and reassure her and pat her back.  I’d do that every 15 minutes until she fell back asleep.  I wouldn’t give her middle of the night bottle until she’d been in her crib for atleast six hours (halfway point).
The second night was the same thing, except I moved my chair a little further.  I still reassured her every 15 minutes and reset her music.  This time it took only 30 minutes for her to fall asleep.
Every night I did it over and over until I was sitting at the door.  After that, I would leave the room.  And every night got easier and easier.
Our routine has changed as she’s gotten older, but I’ve found that she now sleeps through the night most nights.  Even when she does wake up, I follow the same rules, and she can settle herself back to sleep.
I do not use teething as an excuse for letting her stay up, but when she is sick, I do not follow the usual rules.  The only rule then is that she cannot leave her room.  I’ll stay up all night and rock her if need be, and offer bottles.  But absolutely for no reason can she play or watch a movie until it is atleast 7am.
The change in her has been monumental.  She is a happier and smarter child.  She is more focus, and has hit more milestones at a faster rate.  Her reflux has almost entirely resolved itself, and she is off all daily medications.  She self-weaned herself from both her bedtime bottle & middle of the night bottle.
I’m obviously much happier because now I get sleep!  And who doesn’t love sleep?  It helped with my depression, my motivation, and my ability to be a mother and wife.  My husband and I also have a better relationship because she is more independent.
I’m hoping I remembered everything, but if you have questions, please feel free to ask.

One Comment

  • Sheila Yale

    My son’s father and I got a divorce just he was starting to sleep through the night. I remember sitting by his bed until he was asleep and then crawling to the door. At first, he would wake up as soon as I left the bedside and we would have to start all over again. But I didn’t give in and it did get better. Thankfully, I don’t have to do that anymore. Now I sit by the bed while the grandbabies sleep. Your little girl is blessed to have a mama that loves her enough to set boundaries. Keep a going girl!

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