All of these things are just an everyday part of life with a special needs child.
We keep track of what foods our child eats and how many calories he consumes. We make sure the "output" matches the "input", if you know what I mean. We record what milestones are met and when they occur. We write notes on progress made and any loss of skills we might observe. We take notes on hours slept and how well the night went.
And on it goes.
Since I've been collecting all of Lily's medical records, I've come across several journals in which Ryan and I recorded just these types of things about our girl.
Looking back over them, I realized something I don't think I really noticed at the time those notebooks were written.
Observing your child in that way 24/7 can take a toll on you.
In a way, you are forced to look at your child with clinical eyes, rather than through the loving eyes of a parent.
The simple joy of being a mom can almost be crushed under the weight of the additional responsibility of playing clinician.
You can't seem to escape that lingering voice of worry that whispers things in your ear, such as, "she's still not stacking blocks", even in those moments when you are just trying to relax and play.
Yet you cannot stop writing these things down because there will be endless questions at the next doctor or therapy appointment.
It can be hard to find a balance.
While I still record things about Lily, I must admit I've lightened up on the 24/7 observing.
Because at the end of the day, I want to be Lily's mom.
Of course, I want the best for her.
I want to be able to answer questions about her habits, behaviors, routines, and milestones. I want to truthfully tell therapists that we work on newly acquired skills at home. I want medical personnel to think that I am the best data management mom they've ever seen.
But more than all of that, I want to have fun with my daughter.
I want to lay on the big green beanbag and watch youtube videos with her. I want to give her a foot massage when she sticks both feet in my face. I want to take her outside when she grabs my hand and pulls me to the back door.
I want to be the mom.
Lily sees about five doctors and eight therapists. That's 13 people involved in her care. That list will most definitely change throughout the years.
But she only has one mom and one dad.
And that will never change.
Ryan and I were given some advice right after Lily was diagnosed. The advice came from a family with an adult special needs son.
They told us to spend at least ten minutes each day just watching Lily.
I have to admit, I didn't really think this was such valuable advice at the time. In fact, my first reaction was, "well duh.... I don't think I've taken my eyes off this child since she was born."
Upon further explanation, I began to understand what they were saying.
For ten minutes every day, shut out everything. Turn off that mean voice inside your head that points out everything she can't do. Tune out voices of doctors, nurses, therapists, specialists, and teachers. Don't set up any therapeutic play. Leave the pen and legal pad in the office.
For ten minutes, just let Lily be.
And then watch her.
See with your own eyes "Lily Your Daughter" not "Lily the Girl with Autism" or "Lily the Nonverbal Child" or "Lily - the No Block Stacker".
Get to know your daughter.
Learn to interact with her on her terms.
Learn to play with her the way she wants to play.
Make a unique connection with her that only her mom or dad can have.
And fall in love with her.
It truly was some of the best advice we were ever given.
Oh, I was good at looking at Lily as a project. Or as something that needed to be "fixed". Analyzing her. Taking notes.
But looking at her as my daughter? It was getting lost in the midst of all the data.
I did love my daughter right from the moment of birth.
But in ten minutes every day, I FELL IN LOVE with my daughter, head over heels with my whole heart, a feeling that was almost robbed from me because of a diagnosis.
Today, take ten minutes to just watch your child.
Yes, it's ten minutes of therapy lost.
But what you stand to gain?
And worth every minute of "wasted" time.