Tuesday, November 29, 2016

Gory details or the Highlights? Do you really know what's going on in an autism home?

How do you explain life with autism?

Do you give all the gory details?

The trips to the ER....Embarrassing moments in public...Poop?

Most of us Autism Moms live our lives talking about the highlights.  It keeps us going.  Maybe that's what you've heard.....all the cute heart warming things our kids do.

Do people really get what goes on in our lives?

At some level, I would expect most people to have empathy.  Hearing the details of our lives can be uncomfortable, but I would hope for true listening and thoughtfulness.  Maybe even putting themselves in our shoes for a moment....and then realizing those moments make up a lifetime.

I'm not looking for sympathy.  I have a very real sense of how extremely blessed I am.  When Tristen was first diagnosed, I decided right then and there that we were going to do the hard work teaching him how to be in this world despite his aversion to it.  Because of this mindset, we were able to overcome the hardest part of his autism by about age 4.  The "hard parts" for us consisted of meltdowns, bolting, trying to jump out of moving vehicles, constant fevers and vomiting, little to no verbal communication, hurting others and getting used to new places, new things, new people and changes in schedule.

Dad teaching Tristen to use the markers to color instead of lining them up  and repeatedly dropping them be hind the desk.

Now that he is 18, I can look back and see continual progress in his ability to function in this world, especially since starting the gluten casein free diet and biomedical treatment when he was 9 years old.
Tristen is a joy I would never trade who gave my life peace and perspective. 

That is my outlook everyday, so if you meet me on the street or out and about, I will always reply positively that I am doing well.

Keeping life in perspective gets me through the tough days. 

Thousands of parents have children with autism with life threatening seizures, head-bang or bite/pinch themselves and others.  Some parents can't handle them as they grow bigger and stronger and have to trust them to strangers.  That heartbreak has to be unbearable. 

Feces smeared on the walls....a life time of diapers....never hearing "I love you".....

It's too much, so these details tend to fall on deaf ears.

I want people to know that life with autism is good and bad.  It will give you the greatest joy and he deepest heartaches.  You will be exhausted and fulfilled sometimes in the same day.

It. is. not. easy.

And it can change from day to day....week to week.

My sweet Tristen, who has come so far, is back-sliding.  He needs to get back to a biomedical doctor who will do the right tests on him to find out why.  I suspect PANDAS/PANS or a strep infection in his gut.  It's hard for him to focus and stay out of his head long enough to follow directions.  He is almost 6" and 160 lbs. and he spends a lot of time running from one side of the house to the other, spinning and jumping and injuring himself badly because he isn't paying attention to where he is going.

The doctors and tests he needs are not covered by insurance, nor are they anywhere close.

When I do open up and tell someone outside of the autism community something that has happened in our lives, I can tell I make them uncomfortable.  I get that it is hard to imagine.  I guess I'm just looking for some acknowledgement. 

Besides the responsibilities of wife and mother and teacher (because I homeschool) and church responsibilities, I have this very real and overwhelming aspect to my life.  My son has autism.  He doesn't have the challenges of many.  But I have this responsibility to keep him healthy and functional for the rest of my life.  That is a huge weight that others don't recognize.

So I ask, that if you know someone whose life is affected by autism, take a moment to really think about the life they lead.  We don't want pity. We want understanding.  And we want this epidemic to end.