Thursday, October 10, 2013

Thankful for Answers


This week has been full of emotions.  Ever since our recent video taping sessions of Gracie’s sleep I have been walking around with a pit in my stomach.  I have been wondering why she is doing this to herself and what in the world can we do to help her?

Little did Chris and I know that help was on its way in the form of a Pediatric Sleep Specialist through UVA.  We finally got to have a sit down appointment with her this Tuesday.  Two hours and lots of tears later we better understand our little girl and what she has been going through for the past 12+ months.  She diagnosed Gracie with a sleep disorder called, Rhythmic Movement Disorder.  Many children “rock” themselves to sleep, and Gracie was one of the them.  But, in some small cases this can become an out of control behavior and a horrible sleep habit that interferes with day time function.  It is categorized as a normal child during the day, but they rock back and forth at night during sleep onset.  This can happen when they fall to sleep, and throughout the night as they transition from REM sleep to stage one sleep. 

She told us that Gracie absolutely needs less rest than our other two children.  She probably always will.  Because all year we have been putting her to bed at 7 pm like our first two children she has rocked and rocked before falling asleep.  There were certain points this summer that she rocked for over two hours just to fall asleep.  Once we started using Melatonin the rocking to sleep stopped, but then all of this horrible in the middle of the night rocking started.

The sleep specialist also emphasized that the more parents intervene (which we did a TON) the worse and worse the behavior becomes.  We were so anxious about her rocking that we kept going in her room, multiple times a night.  We would do different things, pat her back, take her out of the crib and rock her, give her milk, etc etc.  Then this very normal rocking behavior turns into a monster partly due to her personality (you can imagine how strong willed she is based on rocking for two hours straight) and the parent’s interventions. 

This particular sleep specialist has helped many, many families in our same situation (if you can believe that too!).  There is NO cure for Rhythmic Movement Disorder, she will probably do it for the next few years.  Most children outgrow it by age 5 or 6, but the doctor didn’t want to put an exact age on it for fear that we would worry.  But there are ways to re-train her body to learn that the crib at night means calm and rest.  It doesn’t mean rock for hours on end and get mommy and daddy to come and visit me.

To re-train her system we have to sleep deprive her!  She is already so so tired, but we are cutting her sleep so much that she will be forced to only sleep in her bed and not rock at all.  Her bedtime for the next 2 to 4 weeks is between 9:30 and 10 pm!!!!!!!!!  We are to wake her up at 7 am on the dot, all while being cheery and positive.  We are showing her the bedtime means sleep, and the morning = happiness!  The doctors words exactly are “you need to fake it till you make it.”  Meaning that Grace is going to be super grumpy during this transition, but we need to over exaggerate our happiness in the hopes that it will rub off on her.  She is only allowed one nap a day for 2 hours.  This goes against my parenting sleep mantra I have learned from the beginning.  I never wake my children, but I will do anything to solve this problem. We are trying to take away those three hours a night that she was awake and force her sleep cycle to fix itself by depriving her of rest.  Over time she is hoping that we can move her bedtime up to 9 pm, but for now we need to keep it as late as possible.

The first two nights were proof enough for me.  She went right to sleep and didn’t move a muscle.  We have taken away her weighted blanket.  The doctor said that she doesn’t need it.  Grace didn’t rock one time in the past two nights.  Her blanket was perfectly on her body when I WOKE her at 7 am both mornings. 

The last step to getting things back on track is about our parenting.  The doctor told us that under NO circumstances are we to go into her room at night.  No more checking on her a bunch of times, looking at the monitor and worrying.  She said that part of the reason it has gotten so out of control is due to Chris and I’s anxiety about this behavior.  She even wrote on the sleep plan “Grace will be OK.  Mom needs to sleep.”

The next month is going to be tough.  Grace has been really, really tired and fussy the past few days.  She has asked to go to bed when the big kids are going to sleep.  She has been confused about the changes.  We are just going to push through this plan and try to undo what has been done over the past year.  It is important to keep her schedule so that she can re-learn her sleep habits and we can have a happy, healthy future.

Having a 24 month old up until 9:30 or 10 is NOT my idea of a dream schedule.  But, anything is better than worrying about her endless rocking.

I love you Gracie girl.  We will get through this.  We will help you get back on track.  I am wishing you many nights of wonderful sleep in the months to come (and Mommy too).   


amanda said...

oh clare!! i can only imagine the peace you and chris are feeling!! answers = a plan. and oh how us mamas (and teachers) love us some plans!!

sending lots and lots of love and wishes for sweet dreams to all :)

Lindsay said...

so so glad you finally have some answers for Gracie girl! You will get through this! Let me know what night you want me to come over and play with Grace! You know I am always game for that :-)

Kiki said...

It has got to feel good to have a plan... even a tough one... and some direction... and to know that she will most likely grow out of it... and that there are a of other kids out there doing the same thing... fake it til you make it!! That goes for a lot of things.

laura said...

oh, so happy you finally have some answers and a plan to help grace!

thinking of your girl (and YOU!) during this transition time.... xo!

rockinabbs29 said...

new follower! Hope everything gets worked out with your daughter! *hugs*

Unknown said...

I am so glad you finally have answers and I can only imagine how hard this will be with the late bed time, etc. but if anyone can handle, it is the two of you. We love you guys so much and here is to two of the most amazing parents in the world! XOXO

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kat.humphries said...

Hi! Wondering how this all worked out? I'm in something similar with my 4 year old who has been doing this since he was born. Although he also is very vocal (moans). Was thinking of getting a weighted blanket. Did the melatonin which seems to have the same effect as your Gracie. Any info would be greatly appreciated! Thank you for posting this!