Ever feel like an alien in a a foreign land??
A circle in a room full of squares?
A splash of color in a black and white world?
Like NO ONE gets you, or your life, or your reality?
I don't say this to be mean.
Or to make people feel bad.
And not even because I am complaining.
I just wonder sometimes.....
Do people REALLY have a clue what life looks like for some of us?
Does anyone get it?
So for those who care....
Here is what a "typical" day in our life looks like!
5:00 am
I get up. This is MY time.... the only MY time I will get for a LONG time. I exercise (in the privacy of my own very chilly garage) with my music blasting (in headphones of course) and try to pretend that I don't see any critters sharing the space with me.
5:30 am
Give Nathaniel his bowel medicine to start his bowel routine.
Head to the yard (weather permitting) to have a cup of coffee, a cigarette (yes, dang it, I smoke!) and read my bible. This is my grounding time where I get right with my day and my Lord.
6:15 am
Give Nathaniel his morning meds. This means I wake the kid up enough to stuff a bunch of pills in his mouth and force him to drink enough to wash them down, then cover him back up to "plan his day" in his books, "wait for the meds to kick in" in my books. Then I jump in the shower, get dressed and basically try to look human. This is also the 45 minute window when I try to get dinner started for the day. (yes, dinner before 7 am in the morning... but you will see why soon!)
6:45 am
Morning stretches and yoga with Nathaniel
7:00 am
The first In Home Behavior Counselor of the day arrives. This begins our "morning routine" which consists of teaching Nathaniel, through constant repetition and behavior modification programs, basic daily living skills like dressing, tooth care, catheterization and simple house keeping tasks (like making his bed and emptying the garbage). This routine should take about 20 minutes.... but thanks to various neurological issues, ODD and OCD we are LUCKY to get it done in an hour. He has a two tiered token chart where he attempts to beat the clock to earn time AND score points to buy privileges. On a good day we get through the morning routine in 30 minutes and earn time (Wii, for completion in less than 30 minutes), on an average day we get through the morning routine in 45 minutes or less, with one or less tantrums (full blown, raging tantrums involving violence of some sort) and earn time (DS time for completion in 31-45 minutes) and on a bad day we have various tantrum and leave the house without some of these things done. (And yes, dressing is the one he hates most, so we often leave the house without him in clothes!)
Also during this time I am supporting Audrey in getting her morning routine done and making sure that she gets a bit of attention too.
AND start a load of laundry because a load a day keeps the laundry monsters away from my house!
AND make sure dinner is either started or ready to pop in the oven the second we hit the door in the afternoon.
8:30 am
In Home Counselor leaves.
We leave for the day.
Going with the school schedule, we would be leaving to take the kids to school.
8:30 am to 2:30 pm
Kids are in school.
I work.
2 days a week I work at an Air Analytical Lab as a client service representative and 3 days a week I run my shop.
2:30 to 4:30 pm
Appointment time.
Seriously, like everyday we have one or two appointments.
OT or PT once a week,
WRAP meeting once a week,
Behavior Consultation once a week,
DV therapy for each of us once a week (that means 3 therapy appointments each week),
and at least once a week we have a doctor's appointment, or a dentist appointment, or an appointment with the brace maker (and we have been seeing him like 3 times a week recently!).
Yes, appointments galore!
Squeeze in here 3:00 pm meds for Nathaniel
4:30 pm
Second In Home Counselor of the day arrives.
Put dinner in oven if cooking that way that day (the crock pot is seriously my best friend!)
Homework time and family "pick up" time. (FPT is when we work together as a team to clean up the house and try to make it look somewhat cared for!) Homework is another fun time around here. The lessons that Nathaniel's teacher tells me should take 20 minutes usually takes us anywhere from an hour on up. We have a very structured token plan just for homework, and it takes me and the IHC to be sitting right there with the kids to get the work done. On a good day we get done WITHOUT any tantrums.
6:00 pm
More meds for Nathaniel (including his sleeping pills)
Dinner time.
Family conversation time.
On a good night we will get 2 family questions answered, everyone with use utensils to eat with, no one will chock and therefore I will not have to practice my Heimlich maneuvers and no food will fly. We MIGHT have one good night a week..... MIGHT, sigh. More often than not, at least one if not more of the above mentioned things will happen.
6:45 pm
Night time routine begins. Night time routine is similar to morning routine..."night routine" consists of teaching Nathaniel, through constant repetition and behavior modification programs, basic daily living skills like un-dressing, bathing, tooth care, catheterization and simple house keeping tasks (like cleaning his bedroom and clearing the kitchen table of dishes). This routine should take about 20 minutes.... but thanks to various neurological issues, ODD and OCD we are LUCKY to get it done in an hour. He again uses his two tiered token chart where he attempts to beat the clock to earn time AND score points to buy privileges. On a good day we get through the night in 30 minutes and earn time (Wii, for completion in less than 30 minutes), on an average day we get through the night routine in 45 minutes or less, with one or less tantrums (full blown, raging tantrums involving violence of some sort) and earn time (DS time for completion in 31-45 minutes) and on a bad day we have various tantrum and end up falling asleep before the routine is done.
7:30 or 7:45 pm
On a good or average night, this is when we get earned time. As a family we play on either the DS or the Wii depending on what each child earned.
8:00 pm
Kids in bed.
Each night the kids get read to for about 30 minutes.
Also this is when Nathaniel FINALLY gets hungry (did I mention that his day meds have the side effect that makes him not eat? I am lucky to get 25 bites of food down this child between the time he gets up and 7:30 at night!) A typical night snack for Nathaniel will be 2 hard boiled eggs, a cup of nuts, a piece of sliced fruit, a carton of yogurt and 4 cups of water.
8:30 pm
Nathaniel gets a movie on the TV in his room and Audrey heads to bed.
I do 30 to 45 minutes of stretches with Nathaniel in his bed.
9:00 pm
On a good night Audrey is asleep.
Nathaniel gets his nightly cough drop (its an OCD thing, he WILL NOT go to sleep without it.)
9:30 pm
On a good night Nathaniel will be asleep and mommy time begins.
This is when I blog, catch up on my friend's blogs, work on my crafts, work on my websites, pay bills, do paperwork, read, do my homework, etc.
11:00 pm
Most nights this is when I go to sleep after a brief time in the Lord's word again.
On a typical day .....
I pray without ceasing.
We will have 3-5 tantrums and at least 1 rage.
Mommy will cry at least 3 times.
Audrey will cry at least 5 times.
Nathaniel will turn "off" at least twice.
And doors will be slammed multiple times.
In a typical week.....
I will have to use some sort of CIT hold on Nathaniel at least 3 times.
Someone will get hurt on at least 3 days.
I will have to call the On Call Worker at least once.
Some sort of medical "thing" will happen.
And I will cry myself to sleep more often than not.
This is my normal.
And I am ok with that most days.
But then there are times that I want to throw up my hands and scream.
I want to shake someone and say "do you KNOW what I deal with ALL THE TIME???"
Or I just want to look at someone and say ....
I am thankful I got through another day in the grace of God.
And that is my reality.
Each day I wake up and beg God for the strength to do what I must that day.
And I am thankful He is with me every step of the way.
