Living the Unique Autism Life

It is really scary for me to share my experiences with Autism.  I have been living this ‘unique Autism life’ for over 18 years; and I’ve received everything from pity, to criticism, to compassion, to hatred because of my children.

I really don’t want any of those feelings.

I just want people to enjoy my children for who they are, and see the imperfect blessings they bring.

So, it’s with trepidation that I put this out there…to share my little piece of what it’s like.

Not just the physical ‘alone’, but all those feelings and thoughts in your head…the ones which convince you that you’re a horrible person, doing a horrible job.

I wish I had more perspective…. more emotional companionship during some of my most difficult years.

My second child, Alex, was diagnosed at age two nearly, 17 years ago.  I still remember that feeling of being hit in the gut when the doctor said ‘Autism’…even though it came as no surprise.

At that time, I was devastated…and so, so scared.  But, also very hopeful….hopeful that we now had the tools to help him succeed…and ‘fix him’.

Over the years I had to grieve again and again as I slowly accepted each new disappointment.  I remember when his speech therapist told me that the window for him to use speech as his main form of communication had most likely closed.  What words in the English language properly describe feelings of repeated grief, disappointment, fear and anxiety?

Life with Alex was an adventure.  He was the happiest kid.  He had a grin that could light up an entire room. It was so perfect, it made his eye sparkle.  And, he had all these blond curls to go with it.

He LOVED socks.  He would carry a sock around with him 90% of the time…just twirling it in his hands….stimming in pure joy.

He loved animals…specifically pictures of animals.  He would get all his favorite books, open to all his favorite pictures…spreading them all out on the couch…and then rock back and forth looking at them with his face as close as he could get.

After he died, for weeks, I would continue to find little chocolate streaks on my couch cushions where his coco puff smeared lips had gotten too close while he was in pure bliss looking at his books.  He loved his snacks, and his TV shows and jumping on the trampoline.

You couldn’t go out and jump with him, or you’d be stuck for hours, exhausted…. but still going, as you just couldn’t abandon him with that grin of delight.

But, he was also overwhelming work.  We couldn’t do anything as a family.  I remember going to my oldest son’s kindergarten graduation.  Alex was in a mood.  He was upset and crying.  We couldn’t settle him down.

My three year old was fussy.  And, I had a newborn…who was hungry.  The stares and dagger eyes we got from the other parents was humiliating and demoralizing.  The night ended with my husband in the car with Alex, and me missing half of it while I nursed the baby.

It was then we decided that we would never again go to something like that as a family.  One parent would always have to miss it and stay home with Alex.

He never slept.  We were walking zombies for 7 ½ years.  Seriously, he did NOT sleep.

He’d run and run and run around his room at night until he’d just crash from exhaustion.  Then at 2 or 3am he’d wake us up by laying on his back, kicking his legs against his bedroom door.  Bang Bang Bang Bang Bang!!

I tell you…THAT wakes you up in a hurry…running to him as fast as you possible can so that he doesn’t wake up the other children.

Then there was the fact that he didn’t like clothes….AND he wasn’t potty trained.  (baby poop is bad enough…7 year old poop is another beast entirely)  He loved to strip down at night while he was alone in his room…and then play with whatever might be in his diaper.  How can you possibly be expected to be a good parent when at 2am, you walk into his room and find both him and his room (literally floor to ceiling) covered in smeared poop?

Once my husband was gone on business.  I had a newborn keeping me up….along with hormones flowing through me like Niagra.  I’m utterly exhausted.  And, I’m scrubbing poop off his wall at 3am bawling about how much I hate my life.

I remember someone telling me that everything is ‘just a phase’ with kids, and take heart in the idea that someday it will just be a memory.

I though ‘not with Alex’. He’s never going to talk.  He’s never going to leave home.  I’m not even sure he’ll ever get potty trained.

Things are getting worse – not better – as he gets older.

A 5 year old who strips off their clothes in the backyard gets a few chuckles.  What about an 18 year old?  How am I possibly going to take care of him then? ….when he’s bigger than me, and stronger than me?

Some days it felt like I was living a prison sentence.  I remember looking at people with children who had physical disabilities…children who were medically fragile….and being jealous that they would probably not have to take care of their child forever.

What kind of mother has those thoughts?

He was an escape artist.  We were constantly trying new means to keep him safe.  This was in the days before ipads, before GPS trackers.  That summer I would catch him going to all the doors, trying to get out.

How do you protect one of your children without making your home a prison for the rest of your children?

Eventually he got out of the house by himself.  He found his way to a lake about 10 blocks from our house.  How do you describe and deal with feelings surrounding something like this? We failed.

We didn’t protect him.  I didn’t protect him.

It’s been over a decade and I still struggle with feelings of over whelming guilt.  Guilt that I didn’t take better care of him.  Guilt that I got what I was jealous about.  Guilt that I admitted that life was easier without him.

I felt that I had no right to miss or mourn him.  I didn’t deserve condolences.  And, some people agreed with me.  It made the local news. One woman wrote a scathing editorial to the newspaper (thank goodness this was in the days before internet commenting..and trolls were the standard) ripping my husband and I to shreds.  She even called for us to have criminal charges brought on us.

When you just buried your child, you really don’t need things like that.  People need to remember that even words from strangers can really hurt and do permanent damage.

I am in a better place now, but I still fight those feelings. In my mind there are two Alexs’.

There is one who brought me to tears when he was alive.  The one who kept me up at night literally and figuratively.  The one that I saw no escape from.  The one who I couldn’t take my eyes off.  The one who caused me continual stress, anxiety and work. The one who I couldn’t fix.  The one who was getting harder and harder every day.

I don’t miss that child.  I know that’s probably not what a mother should say.  But it’s truthful.

Then there is the 2nd Alex.  There is the happy, smiley, beautiful boy who would bury his head in my hair when he wanted to kiss me.  The one who got such a thrill over simple things like Oreos, and comfy blanket, and a swing.  The one who couldn’t help but make the world seem brighter just by laughing.

I adore that child.  I love all his quirks.  I mourn him.  I can’t imagine that even when I’m 90, thinking of him won’t still bring me to tears.   I miss him every.single.day.

When Alex died, I had a 3 month old, Miles.

A couple years later, Miles too was diagnosed with Autism.  It was a horrible blow.  Definitely harder than the first time.

I railed in anger.

I could accept that Alex was taken from us as a type of blessing to our family….the freedom it gave for us to focus on our other children, and do all those things that had been so difficult before.

But now we were going to go through it again anyway?  It was beyond unfair.

But Miles is truly a joy.  I was telling my husband the other day, how grateful I am that was had Alex first and what a blessing it was for Miles…who never knew him.  I know and understand so much more this time around.

It definitely helps that Miles is higher functioning.  He seems like a walk in the park compared to Alex.  He is fully verbal (VERY verbal), completely potty trained, sleeps well at night, etc.  But, he will never leave home.

He will always need us (specifically me won’t let anyone but me help him 90% of the time).  He will never be in a ‘typical class’ with ‘typical kids’.  He won’t go to college.  He won’t get married, have children of his own, and go do all those things we dream for our children.  But, my perspective is different now.

It’s OK.  I can fully appreciate him and everything he is.

He brings me such joy.  I adore this kid.  I love his jokes.  I love hearing him giggle while he watches the same 15 seconds of his favorite shows over and over and over and over again.  I love that at any time during church he might burst out singing the Imperial March from Star Wars.

I love that he adores me.  He brightens my day.  I am so grateful we have HIM.

Yes, there are still times when I look at him and his peers, and mourn the child I thought I would have.  I will always miss that potential child I never had….those two children I never had.

I think from time to time what Alex and Miles would be like, had things turned out differently.  But, I am so grateful that I am not in charge.

I never would have picked to have these boys I got, but thankfully there is someone else who knows better.

Written by, Carinne Gee

I’m a mom of 7 (yes 7!) – 2 of which have Autism, including 1 who passed away. I also have a daughter with Celiac Disease and another son we adopted through foster care….but those are other stories.  We are lifelong Alaskans, who recently relocated to Denver…so we’re still a little out of our element.

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