Where are all the Autism Families?

     I’d just recently felt the need to take a break from Facebook, a great social media outlet that I cherish to connect with friends and family from all over the country.  But this time of year, in the season that our lives are in right now, it was causing my ugly envy to flare.  People taking vacations, going to the store, going to coffee shops or bakeries, going ANYWHERE.  We use to be able to go to all those places, but things have changed.

     These days we are very limited.  Before CJ hit puberty, we use to go to amusement parks, lakes, picnics, the movies, and even waterparks.  Our main concerns were always to make sure he didn't wander off or mistakenly come off as rude by not being aware of the people around him.  We would make sure he didn't cut in line or bump into someone without saying, "Excuse me," or take food from someone else's table and start eating it.

    His stimming or the inquisitive stares from other people never truly bothered me--well, after  a while anyway.  You get use to it.

     Now, we have to worry about when next meltdown will happen.  As much as we try to gauge it, there is little to no warning.  He could be happy one minute and then become agitated the next.  During a meltdown, CJ screams, hits himself and kicks.  It is a danger to himself and to those around him..

     Chris, being the amazing provider that he is, works a lot of hours which leaves me alone at home with the kids.  I love being able to stay home with them, but I  count the hours until he gets home.  Sometimes I feel like a little puppy dog, waiting by the window at the end of the day.

     When I use to go out with CJ, I would plan my routes in the stores accordingly.  Have my list, get in, grab what you need, pick the shortest line and GET OUT.  KNOW the layout of the store so that you don't have to spend any more time than you have to in there.  Sometimes, I would make multiple trips a week, grabbing a few items at a time just to be able to go through the Fast Checkout.  Self check-outs are my friend too.  Scan, scan, scan...pay, get out.  No chit-chat, no hold-ups (usually), just a smooth, quick grocery trip, grab, pay and go.  Meltdown in the store averted.

     Sometimes though, we didn't make it in time and the whole store knew it.  Costco is one of my FAVORITE stores.  Especially because they now carry so many organic, gluten free items at a reasonable cost.  But...their LINES.  I would have beads of sweat forming on my brow as I had to wait in the lines with my sweet, ticking time bomb.  My dear CJ has had his meltdowns while we were in line many times.  Sometimes, we just left.  Other times, we rode it out because we were right there, the next one in line to check out.  We would go through, I'd make sure CJ was safe and close as he beat his head, I would stay calm, pay and be off on our way.  (With all eyes following us out.) I have never met an ungracious cashier though.  And I do have to say that there were a couple of times when someone had offered to help or expressed a kind sentiment.  Inevitably, I would always drive home with tears running down my face.

     All this to say that it wasn't easy but we’d managed.  But now, I have a new baby to think about.  The car rides with just the kids and I are limited to 15 minutes max.  And I will only take CJ and the baby if Austin is there to sit next to the baby to protect and console him, should a meltdown strike.  A big responsibility for a young man caught in the middle.

Needless to say, most of the time I choose to not go anywhere now.  With the baby’s cry now prone to upset CJ, it’s just not worth it.  I’ve done it and it ended up being a relentless, vicious cycle of baby crying and CJ screaming.  CJ screaming and baby crying.  Not safe, not healthy.   I do however, count the hours and try to save my trips for when Chris gets home or I will just ask him to pick things up on his way.

     But then, there is guilt.  Guilt that our summer is flying by and I’m too afraid to go anywhere.  Guilt that our other son, who is 13,  is in a new town with no friends and nowhere to go.  Or nowhere we CAN go rather.  Guilt because I know that CJ is also bored and would like to go places, And I know that he can’t help his meltdowns.  Autism has made us ALL prisoners.

     So, the day comes when Chris finally has his day off.  I'm excited, he's excited.  "Finally!" I think.  "Finally!" HE thinks.  But for different reasons.  I’d been planning my trips to the grocery stores, Walmart or Hobby Lobby and HE’D been planning on accomplishing his other responsibilities that he is unable to accomplish while at work.  But, wait...if I can't take CJ with me and HE can't take CJ with him...now what?  And that is where a lot of our tension starts.  "I need to do this and I have been planning to do that!" we both explain.  A lot of times I end up in tears and we both end up frustrated.

     So maybe we just need to get better at communicating. Either we will do our best to figure it out.   Amazon Prime has become a dear friend.  So yes Mr. UPS man...this is why you have seen me just about every day this past week and why you will be seeing me again on Monday and why I am expecting a shipment of socks on Tuesday. :). At least until our CJ starts school.  But, for now?  We are just another severe autism family that you won’t see out in public too often.

Eyes Speak Louder Than Words

I haven't written in a while.  A long while actually.  A lot has happened and it almost saddens me to look back on my previous posts.  Things seemed so much simpler then.  They were simpler.

Now, I am writing as a mom of a severely autistic, teenage boy.  A completely changed and different boy.  A boy whom I love so dearly but has changed so dramatically.  But then again, so have I.

I remember when CJ was about 5 years old and I use to go on about the different therapies and diets that we were doing.  The new recipes I had discovered and how we were on the road to recovery with the assistance of our bio-medical doctor. I never did forget the look that these older moms would give me as I went on and on, and on.  I would ask them, “Well, have you tried the diet?  Have you tried chelation?  Have you tried these supplements?”
I can only imagine their thoughts. Their kids were well into teenage-hood or at the start of it.

They would graciously listen as I continued to share about the things we were doing.  Maybe they just didn't have the heart to put my fire out.  But, that look.  The unspoken words that were in their eyes pricked my soul and put a knot in my stomach.  Of course I tried to brush it aside, but I never could.  It was always there, buried in the hopes of our journey.

It was a look that said, "I have been there."  A look that had compassion and respect for what I was trying to do without realizing what was ahead of us.  A look of support, yet of deep sadness.  A look of exhaustion, defeat and acceptance.

That is where I find myself today.

We have fought long and hard to recover our CJ.  We have tried many supplements, therapies and interventions.  We flew to Florida for treatment at the late Dr. Bradstreet's office.  A pioneer in autism research.  We have done chelation, hyperbaric chambers, detox baths, Medical Medium diets and even CBD.  We have moved a numerous amount of times.  Many were for CJ, some were in an attempt to live the life that we wanted.  Denial can be a killer.  You can live in it until enough rude awakenings force you to shuffle and make a change. Or when you’ve come this close to a tragedy.

I’ve cried many times in my car.

Since CJ has hit puberty, beginning at 12 years old, we entered survival mode.  We tried to hang on to normal life but it was quickly spiraling out of control.  CJ started to progressively become violent. Things that never use to upset him, now sent him into a rage.  I was more frequently finding myself folded into myself on the floor like a turtle, withstanding the tornado of his attacks.  Protecting my head and my stomach always seem to be the things to instinctively protect, most crucial during my recent pregnancy.  All the while, my heart was breaking more and more each time.  "What has happened to my sweet boy?  Why is this happening?"

Nothing could've prepared me for this.  Nothing.  But, I now completely understand why those older moms had that look.  I get it now.  I get it because I now have that look too.