Autism – High Highs and Low Lows in the Same Day

Anyone who knows autism knows that we can have the highest highs and the lowest lows, often within a few minutes of each other.  I had a day like that last week.

I’ve shared before that Rob is a picky eater.  While he is willing to try many new foods now, he doesn’t voluntarily do it.  On this morning, he was ready for work and looked in the refrigerator.  He grabbed a container of canned pineapple and wanted some.  He loves fresh fruit but refuses to touch anything canned.  I think the syrup is too gooey for him.

Anyway, he was insistent that he wanted the pineapple, so I got a fork, stabbed a piece and handed it to him.  I knew he would refuse to take it, but I was happy he was at least willing to look at it.  To my shock, he grabbed the fork, ate the pineapple and wanted more.  I couldn’t get a bowl for him quick enough!

This mom was over the moon and sky high!  He voluntarily tried a new food – a syrupy food!  If he would have had more time, I would have let him eat the whole container, just to watch him.  I have something else I can pack in his lunch – what an awesome way to start our day!

He had no idea why I was so excited and looked at me like I was  crazy, but he did grin as he left and said “pineapple.”  This was huge and I let everyone know what had happened that morning.

Later that evening, the kids had a dance to go to.  They were both excited.  Casey loves to “dance” while he likes to lay and watch the lights spinning and flashing on the ceiling.  When the music started, we danced “The Twist” together and then Rob and I went to sit while she stood at the edge of the crowd and swayed to the music.

Usually, I try to get Rob to get up and dance more, but I was so tired that night (still trying to get my energy back after being so sick!) that I just sat and watched Casey and the other dancers.

And then it hit me.  This wave of intense sadness.  I saw so many other people her age and they were dancing and laughing with friends – and she was off by herself.  I wanted so badly to see her out in the group, laughing with friends and being silly.  I knew she was happy where she was.  I knew she didn’t care to be in the middle of a crowd.

But it just made me think about all the things that they will probably never do.  Things that I take for granted.  Most days, I don’t think much about it  as I know the kids are happy.  They get to do most of the things they want to do – and what they don’t do is more because mom says no, than their autism.  They go places with friends and staff from  the workshop.

I know all of this, but at that moment, I just wanted to cry.  What if Casey wanted to be in the crowd but didn’t know how?  What if Rob wanted to go sit at a table with the guys and not sit on the bleachers with me?  The thoughts just wouldn’t stop coming.  I just wanted to go home.

These highs and lows are part of what makes autism so exhausting at times.  The range of emotions we feel during the day can swing like a huge pendulum.  Add to that every day concerns about work and groceries and families and household matters.  There are days when I’m so tired when I wake up that I actually think about how long it will be before I can go to bed.

Luckily, most of our days are pretty mellow anymore.  Or, I’ve gotten so used to the circus that I don’t notice the craziness (and this is a distinct possibility!) or the noise.  We don’t have too many super lows (knock on wood!) right now.  I’m always wondering when the next lows will hit, but I try not to think about it too much.  Why ruin a good day by worrying about what might not happen?

I just heard from a mom a few days ago on our Facebook page  (check it out, if you haven’t had a chance, yet.  I try to post every day!) who wanted to thank me for not writing “rainbows and unicorns” about autism.  She liked that I was raw and honest about our lives.  A true high for that day!  When I started this blog and our page, I promised myself that while certain private details about the kids would stay private, I wanted everyone to understand that autism isn’t terrible.

It’s hard and it’s easy some days.  It’s exhausting and exhilarating.  It’s brought so many new friends to our lives and taught me so much.  It makes me laugh and cry and get angry.  When Casey was diagnosed, the books I read were “My child was cured” books or “Your child will never….” books.  Where were the books that said  it was ok for me to be tired?  Where were the parents who got fed up with OCD?  Was I the only one?

So I promise to share our highs and lows with you so you know it’s ok to feel however you feel.  Be happy, be tired, feel guilty, be relieved, be angry, be irritable, be whatever you need to be.  And if you need someone to talk to, message me.