My Message

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“Oh my gosh!  Look at how LITTLE they all are!”

“What?” I asked my husband and leaned in to look at his phone.

On the screen was a photo that another parent had posted to Facebook.  “Wait – when was this?” I asked and took the phone from his hands to get a closer look.

“It was Bobby’s first soccer team with the club.  I guess that was 3 or 4 years ago.”

I looked at my husband with squinty eyes and then looked back to the picture.

I saw the faces on the team and recognized some of them.  Not from that team, but from different teams through the years of playing with the same club.  They did look so much younger.

“That’s neat, “ I said and handed back the phone.

But I thought to myself – why did that team look so foreign to me?  Why did I not have any memory of it?

“Oh,” I thought, “That’s right.  I never made it to any of those games.  It was THAT year.”

That year was the hardest year.  It was the year I resented……everything.

When I counted back, that picture was taken the year that Declan was 2 going on 3 years old.  The year that I took Declan out of the house only when completely necessary.

Why?  What was Declan like?  Well, the best way I can explain it – he was like a bouncing ball, out of control.

If I were to stand in one corner of a room and throw a little tiny bouncing ball at the other corner – it would bounce all over the place in an unpredictable manner.  I could not tell the ball where to go – it would not understand me.  It could not tell me why it was going to hit the walls or objects it would hit.

Declan was the bouncing ball.  He didn’t see objects in his way.  He didn’t see people.  He just needed to move.  He needed to bounce off things – his body was seeking sensory input.  Affected by everything bright and loud around him.  And most days he was starting his day in the wee hours of the morning.

We were so isolated everywhere we went IF we even went anywhere.  There was a finite amount of places we could go.  I would only go to empty playgrounds to keep other kid’s safe from Declan.  I would wait in the sick area of a Dr.’s office if it was the empty area.  And when Declan was diagnosed with autism, by depression deepened.  Why?  I felt that all the stress, the isolation, the lack of sleep – it was never going to change.

But things did change.  Some things did get better.

I can look back now and see the change.  The terrible 2’s turned into the very hard 3’s into the hard 4’s.  Keep going – were things getting better?  Yes.  Over time, things got better.  And here we are.  6.  The best part of this year so far?  Declan is finally potty trained.

Are all days perfect now?  Heck no – if you read my blog you’ll read the ups and the downs.  But I would say there are as many ups as there are downs now, if not more.  Maybe it’s my own perspective.  Maybe I learned a few tricks along the way.  I don’t know – maybe.  On top of that, I have made friends.  We have some support.

Things are better.

Would I believe this message of hope if I had read this post 4 years ago?  Probably not.  I was only able to focus on getting through each day.  Pushing myself each morning to get out of bed, put my feet on the ground and resume my role as autism safety watch dog.  I had no ability to think about the next day.

But my message is of hope – some things with autism do get better.

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10 thoughts on “My Message

  1. I can feel so much with your comments on this. My son is now 48 years old, but autism is autism and I can remember the first 10 years. Potty training? I thought it would be impossible when your autistic son thinks a monster must be lurking in the toilet, but I did it. There are things that you never forget. Autism remains autism, but perhaps either we get used to it, or the autist – who knows? thank you for your artiicle.

    1. I agree – autism is autism and somehow autism today is easier for me than autism 4 years ago. Who knows why, but thankfully we are in a better place. Wow, that is a hard potty training scenario! Declan is a sensory seeker – so he enjoyed sitting in it in (and worse). Definitely will never forget those trials! Great to connect with you!

  2. It’s hard to have hope in the middle those dark days. It *does* get better though. It’s good to have occasional reminders of how much progress the kiddos have made. And, yes, sometimes there are set-backs and dark days but that’s life for everyone. And finding a community has been a life/sanity saver for me too. Those dark days can be so isolating. I know I felt I was doing everything wrong and things would never get easier. A “me too” or “hugs and prayers” really does help. May our kiddos continue to find their way and may we have fewer and fewer dark days!!💌💪💌🙏💌🍀💖🌺🌸🌼

    1. This community has been such a saver for me as well. I agree – those words really do help! Yes- may they continue to find their way and be happy. And we will be here to share and support one another in their joys and struggles 🙂

  3. At least Bobby understood why you were unable to attend his games back then. Declan is doing quite well with his new teacher. The fact that he is now potty trained must be something you are all very proud of! Just remember accidents happen to even the oldest of people. (Adult diapers exist for a reason!) If he comes down with the flu or some other illness that causes diarrhea, a small pack of diapers that fit him now may help keep a handle on the messes!

  4. Sometimes it’s nice to compare to get some perspective. Yes, your parenting is now probably harder than anyone you know, but it’s easier than the person you were over the past years. Sometimes it’s helpful to know that while things are hard, they’re better than they could be. My work-life is “challenging” right now, but every day for the past month I’ve been reminded that at least I don’t have a hurricane bearing down on me.

  5. It does get easier, especially when they get older, their language improves and they can understand the world better. Toilet training is tough, but remember to reward yourselves(parents) for all your hard work and small successes while going through the many hard steps of toilet training. Also, learning to self-calm is a difficult, but vital skill they all need to learn. Behavior can be challenging, but once they learn to communicate effectively/appropriately, take responsibility for their behavior and self-calm life will be so much easier!

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