Mission Mode...On Steroids

Do you remember how you felt when you were waiting to hear from your college of choice, or even where we live, when you hear what Catholic High School you were accepted to?  You would go to the mailbox every day just praying there would be a really thick envelope inside the mailbox?  (I know, I'm dating myself, I think they send some of those things via email these days).  We updated our voice mail system to an electronic one so I could check it during the day, just in case Dr. Kim called...I was really out of control!  But this is the kind of anticipation, desperation, craze we were feeling in the Carroll household waiting to hear if Patrick was accepted into the EIBI program.

I had built this program into the end-all-be-all, it was going to be the answer to all of our problems and help Patrick recover.  I was convinced!  This was what we wanted, and when I am in mission-mode - watch out!  And when my kids are involved, I haven't lost yet!  Call me Mother Bear, or B%#@h, but when I'm on a mission, all I can see is the goal ahead.  And the mission was to make Patrick be all that he can be!  (notice I did not say help him to be all that he can be, but Make, and that should tell you a TON about my mindset at the time.)

Everything I had read - and I consumed vast amounts of books - I have an entire library about Autism - Amazon rivaled our grocery bills at times.  When I wasn't taking kids to their sports, I was reading, researching, taking notes, highlighting things, ordering in more things to digest and consume.  I wanted to know as much as possible about what we could do to help Patrick.  I can't even say help his symptoms at this stage of our learning curve.

Everything I read said we were fighting against time (remember beat-the-clock?)  I was desperate because the time frame - according to all of the experts - was six years.  We had until six years of age for Patrick to potentially reach his full potential.   Never mind that I have three other kids who were in their various stages of development and learning.  Right?  I mean some people go to school for years beyond the typical High School, Bachelor's degree right.  WHAT WAS I THINKING?  We only had until he was six years old to reach his full potential.  We didn't have ANY time to waste!  Where was that phone call from Dr. Kim?

I was so desperate, I even asked our Pediatrician, our Speech Therapist and our Occupational Therapist to call in to see if they had any pull to get Patrick into the program. 

But as you know, you may have seen, or you may feel currently, when it comes to your kids, logic often times flies right out the window.  I really think this is God's way of having some fun with us during our stressful times.  Because when I look back at my desperation, I actually roll my eyes!  Why Josh didn't bonk me over the head and commit me, is still a wonder!

Okay, so here is what I promised you in my third post...here is the rest of the story... sort of.  (That's for you L.W. ;-)  )

Patrick got into the program!  Our Prayers had been answered!  We got in!  Now we would see some significant progress, and sit back and let the doctor's and experts work their magic!        We began a five year segment of our journey, that at times was the most difficult, the most exhausting, the most expensive, stressful years of our lives.

So I began to fill out all of the paperwork, first words, first steps, first gesture.  His behaviors, situations, likes and dislikes, make copies of all of the paperwork, assessments to date, asked the dynamic duo to fill out additional forms to take with us to the first meeting.  Which by the way was a series of meetings several hours long.  And I'll tell you more tomorrow.  Will you wait for me at the Corner of Hope and Love?

ZZZZZZzzzzzzzzz

Oh, I think I forgot to mention, that Patrick isn't sleeping...he is up jumping at night, hopping around his room and making this really strange mouth noise.  I'm not even sure if I can put it into characters, the sound he makes.  He actually sounds and kind of looks like Daffy Duck on the looney tunes cartoons - bouncing around like a hyper-crazed, sugar-rushing junkie!  And I am not exaggerating in the slightest!  He not only does this all night long, but all day long too!  When is he going to recharge his battery?  When will we be able to get some sleep??!!!  When will he sleep?

I had actually thought I was over the sleepless nights.  Peter was well beyond the two am feedings, weren't we in the home stretch of parenting babies?  We no longer had to carry a diaper bag or rolling suit case with all of their stuff, why couldn't we sleep peacefully?  It just wasn't in the cards for us...we were way ahead of the Zombie trend, we were now the walking dead!  I used to be a sound, hard, deep sleeper, but that is no longer true.  I couldn't relax to get into that wonderful REM stage.  So long dreams.

What were we going to do?  Would Patrick finally venture outside of his room?  Would he go outside the house at night?  We didn't have an alarm system, we had deadbolts.  Who was going to watch him while we sleep?  Would he disturb the other boys at night?  I could go on and on with the questions and concerns we had.  What to do?  It seems like a simple solution right, craft your plan.

So out we went to Home Depot and we purchased the standard brass door knobs, you know the ones, the basic round knobs.  We also purchased the safety guard to go over Patrick's bedroom knob.   I installed them (Josh is not handy with a tool belt, and please don't even get him near a utility knife!) and just in the nick of time, because he literally the next night, not only defeated the safety door knob...he ventured outside of his bedroom.

He would bounce down the stairs making his funny mouth noises, he would bounce around the family room, then would find the refrigerator, get the gallon milk jug out and drag it upstairs and wake me up!  One night, he had some trouble, and ended up dragging a leaking jug up the stairs into our bedroom...that was a MESS!  Who can sleep after that?  He didn't mean to, it was an accident, all he wanted was a sippy cup of milk...I was reaching the end of my rope!

For those who know our family, you know that Josh has inherited a bad habit.  This is just about the only thing I wish I could change about him.  Other than sleeping on the couch, and his obsession with McDonald's, he is virtually the ideal husband - for me.  (I know, you can gag later), but I am serious!  Yes, we have our arguments, but we basically complete each other.  He is the yang to my yin.  Where he zigs, I zag, when one is in a bad place, the other isn't.  This is just how we roll, and fortunately for our kids, this is a good thing, and his sleeping on the couch was a good thing too.

So, the couch became the norm for Josh.  Now we had both floors covered.  I would attempt to sleep upstairs and Josh would have the first floor covered.  If Patrick watched TV, got out the milk, or our worst fears, attempted to go outside, we would be there to redirect.  I can tell you we went through so many different scenarios before coming up with this plan.  We would add another key lock at the top of the door (but what about the other boys, if there was a fire, how would they be able to get out?)  What about those split doors.  You know the ones where the bottom stays shut and the top can stay open?  That wouldn't look too good on the front of our house, and our neighborhood association wouldn't approve it anyway.

After about a month of this arrangement, and Patrick consistently getting up and staying up all night, we began to Google and found a natural herbal supplement for sleep.  Now I know what some of you may be thinking...they are going to drug their toddler?  Please, don't judge!  We were going on basically about two hours of sleep between Josh and I for almost a year, and it couldn't continue.  Our other boys needed us too!

So I asked our pediatrician about Melatonin and she said we could try it.  I became the Nurse Ratched of our house.  See Patrick couldn't take the medicine because he had swallowing issues.  Well, he also has some serious food issues, but that will need to wait for another post.  I found the lowest strength of Melatonin 3mg at our grocery store, (Spring Valley, Nature's Bounty, and many more sell this supplement) and crushed a tablet between two teaspoons and would mix it into a single serve cup of applesauce.  We called it Patrick's sleepy snack.  IF you decide to try this, please look into it first, and check with your physician before doing or giving your child anything!  I have heard of some kids having the exact opposite effect.  They become even more awake!

This was not the case with Patrick.  It worked like a dream.  Patrick would go to bed at eight or nine and would sleep through the night until about 6:30 am.  It was AMAZING!  We could go back to regular nights, sleeping - I may even be able to dream again.  It is important to note, this did work for a while.  We also mixed in jumping on a trampoline during the day - since he loved to jump, and this exercise also helped him to regulate his sleeping habits.  He, existed for almost two years on about three hours of sleep.  And now, almost six years later, we can hear him sometimes shooting hoops at 3 am in his bedroom - that he now shares with his brother Peter, but he doesn't roam any more, and other than the occasional night when Peter falls asleep first (he snores, and it drives Patrick NUTS!), his sleeping troubles - and Josh and my sleepless nights - are pretty much gone.

We did eventually install key-dead bolts, and I hung the key to each door on a small hook above the door.  That way our two older boys could reach the key and Patrick and Peter could not.  We also purchased a fire ladder and taught the boys how to use it so just in case, we had an emergency action plan and a back-up to that emergency plan.

Thanks again for following me!  I really hope this helps.  Tomorrow, I'll begin to share our EIBI experience and how "Dr. Kim" was not only Patrick's saving grace, she was our Gift from God.  More to follow, as we cruise on down to the corner of Hope and Love.