On Thursday, my oldest son Ben was invited to Six Flags for the day with a friend and his family. On Friday, Ben visited his friend for the day who had been gone for a month. So for the time that Sam was gone, I really only had Josh to deal with. And Kyle’s day off was Friday, so we got to hang out together, just the three of us. It. Was. Glorious!

When we arrived for family dinner, I walked in the door to see Sam standing in the living room being told by Gran to go back into his room to wait for me. Apparently, he had been having, shall we say, some issues, and needed to calm down. Kyle and I went in to talk with him, but it took a long time before all was well again. That wasn’t the only issue we had to handle with Sam that day either. Suffice to say, I didn’t handle everything very well.

Baking with Papa

You see, for the past few days, I had lived autism-free. I didn’t have to deal with calming him down because he dropped a Lego piece. I didn’t have to hear, “Everything is awesome” from the Lego Movie, sung under his breath as he played. I wasn’t quizzed on the spelling of words from the Lego Movie script he was trying to type them out on the computer (by memory, by the way!) I didn’t have to climb up to the top of a loft bed with a low ceiling to wrangle and straighten a seven-pound weighted blanket to cover him at night – because only Mom does it right. Ben and Josh didn’t have someone who told on them every time they did something remotely wrong, or something that he just didn’t like. Josh got to play with his toys without Samuel insisting on how he play with them.

And you know what?

I liked it.

I didn’t just like that time when we were Sam-free. I loved it. I kind of even relished in it. For those few days, I got to re-live the days before autism. Our home was quieter. More peaceful. It was a sweet time of respite, and I wouldn’t have minded Sam spending a couple extra days at Gran’s house.

When I walked in their kitchen door from the garage, it hit me all over again. Autism. This was my life. This was really real. It’s not going away. Yes, he’s made incredible progress. But he still has autism.

And it still hurts.

As the evening went on, I became increasingly frustrated with him. I just wanted to have a conversation with my family. I just wanted to play a game. I just wanted to eat dinner without having to excuse myself and Sam because he was being too disruptive and wouldn’t settle down. I just wanted…

I tried to come back to the table, but tears were filling my eyes, so I had to leave again. I sat in my mother’s bedroom on the beautiful tufted bench at the foot of her bed and cried. I cried because… Sam. Kyle came in and sat next to me, just holding me. As I vented to him, I said something I hadn’t realized until that moment.

“I feel guilty for enjoying our time without him around.”

It wasn’t so much the yelling, the crying, the singing, and the meltdowns as it was guilt for being happy that I didn’t have to deal with the yelling, the crying, the singing or the meltdowns for the past few days. I didn’t really miss it.  

Except I know that there’s nothing wrong with that. It’s okay to enjoy time away from our special-needs kids. I hope you know that. Mom, Dad, caregiver, you’re allowed to breathe easier and smile during a time of respite. It’s okay to throw your hands up in the air and yell out, “FREEDOM!” I actually did not do that… this time. But if you do, it’s okay. No one is going to judge you for feeling good about a burden that is lifted, even if it’s only temporary. Yes, most challenges that autism brings are burdensome. I feel guilty even writing that. But it’s true.

So then I started to feel guilty about feeling guilty. I started preaching the above paragraph to myself. I knew that it was okay to feel relief. But coming back to dealing with autism and having it slap me in the face when I walked in the door – I just wanted to get back in the van and rush home. Without him.

Even still, the guilt of not missing him stung. Because I LOVE my son! Somehow, enjoying time without him translated in my mind into not loving him – as if I wished that he was gone all the time. That is a LIE.

Sometimes we special-needs parents have to preach the truth to ourselves. We might really hate the things we have to put up with due to our children’s special needs. We might struggle with finding that “new normal” – ten years later. Because the “new normal” we find at one age changes to another new normal at another age or stage of development.

Dear parent, regardless of the challenges you face daily, minute-by-minute, you and I both know that you love your child. It’s okay to enjoy rest from special-needs. Cry out, “FREEDOM!” when your respite begins. And then keep loving your child fiercely when it ends and you have to go back to the real world.

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