Unlocking My Daughter’s World.

Anyone with a child on the autism spectrum will hear this statement at least once in their lives.  “But (s)he looks so normal!”

I see it every day.  People try to fit things into neat, tidy little boxes and most times, it just is not going to work.  I hear it and say it daily.  If you have met one child with autism, you have met 1 child with autism.

It had been a long journey for my family.  We knew very early on that my Ninja Turtle was never going to fit into that neat little box that everyone always tried to stuff her into.  She moved to the beat of her own drum, even as an infant.  After 3 years, the doctors finally listened, and at 3 and a half years old, the verdict was in.  Autism.

I see a lot of parents who feel crushed when they get that diagnosis.  The feel it as a blow.  Many are in denial.  My husband and I just asked, okay, what comes next.  We really didn’t have the shock that we see in a lot of our peers.  We didn’t view it as a loss.  Maybe that means there is something wrong with us.  Maybe we accepted what we were told too easily.  Who knows.  For me, it was about not wasting time or energy on things that cannot be changed.

Let me get this out there now.  I am not in the camp that believes autism is caused by vaccines.  I do not buy into the myriad of “causes” that crop up in the news.  For us, it just is.  I am not going to waste time getting caught up in the what if’s when I could spend that time learning with my child.

Every day with Ninja Turtle is a learning experience.  Every day brings something new.  Some new little nuance or idea or focus that comes into play.  Because she is always learning.  She is always growing. Oh, and she remembers EVERYTHING.

I find it amusingly fitting that her favorite pastime is doing puzzles.  And I find it even more amusing that she completes the simple ones for her age group in literally seconds.  Sure, she still can’t quite get the concept of telling us she needs to go potty BEFORE the pullup needs changed, but she can complete a 24 piece puzzle in under a minute.  And then takes it apart and does it again.  And again.  And again.

Rather than focusing on trying to fit my daughter into the neat little box that the world has created for her, we spend our time trying to stretch that box to fit the shape of her world.

We learn as we go and every day is different.  What works today may not tomorrow, and the tricks from yesterday are no longer as effective as they used to be. Summer has been a challenge.  Try as I may, I am not able to replicate a classroom structure for her, especially when on any given day, there are 1-3 other children in my house.  But you know what, that is okay.

The biggest challenge we have faced as a family is learning to balance.  I have two children who do not have autism, and one who does.  Parents of special needs children will tell you it can be easy to become so focused on the child that needs you more.  We try every day (and sometimes, we probably fail) to make sure that all of our children know that they are loved.  We find time for each of them.  Some days, that is easier said than done.

Ironically, the biggest step to that has been the family meal.

Dinner in my house used to be grab a plate and squat where you can find space.  Recently, we made a concerted effort to clear the table and sit and eat as a family.  Picture it.

A stay at home dad who takes on a large number of the household responsibilities;

A workaholic mom who spends 12+ hours a day making the pittance that keeps us afloat;

An 11 year old boy who is teetering on the edge between child and teen, trying to find his place;

An 8 year old girl who has had more roller coasters in her life in the last year than Busch Gardens

And the almost 4 year old Ninja Turtle who doesn’t do change. At all.  Ever.

You got the picture?

Okay, so now, dad thought if we are doing a family meal, we might start the meal with a prayer, something simple, thanking God for the meal before us since we know many who will go without a meal today.

Now imagine the shock when, after hearing a fairly simple (to some of us” prayer of “God is great, God is good,  Let us thank Him for this food” only once, Ninja Turtle has now taken it upon herself to say that prayer every time we sit down to eat!

Do you know what her older brother and sister did when they heard her say it for the first time (which was only the third night the prayer was said in our house)?  They made a HUGE deal out of it.  They applauded her.  They have lifted her up and reveled in what makes her who she is.

We try daily to learn to be a part of her world, instead of trying to make her fit into ours.  Try it.  You might be surprised.