I Am More Than a Caregiver

 I am more than a caregiver. 

Do you see me?

I am a mother. I have three boys, each with different needs. Each one unique in their own way. 

It’s true our life is different than most. The amount of time spent juggling therapy schedules, coordinating appointments, filling out paperwork, fighting for services and dealing with staffing shortages is a full time job. Most days it feels as though I’m just a caregiver, all business to make sure my kids have what they need to succeed. 

But I am more than a caregiver. 

Do you see me?

I’m a mom who wants to do the fun things with my kids like going to the zoo, taking last minute road trips, traveling, going on adventures, and listening to them talk endlessly about their favorite sport or the slumber party at their friend’s house. 

But my reality is much different. 

My reality is navigating meltdowns, redirecting obsessive behaviors, teaching calming techniques to lessen episodes of anxiety and modeling socially appropriate behavior. 

My reality is patching holes in our walls on the regular, explaining autism to siblings, friends and family, and redirecting self harming behavior. 

I am more than a caregiver. 

Do you see me?

I’m the one who is up before first light and most definitely last to bed. I’m the one making endless searches for more resources, tools and opportunities for my kids. 

I’m the one who puts friendships to the wayside because my family’s needs are so great. I’m the one whose needs are usually put last, because at the end of the day there’s just no energy for anything else. 

I’m the one always trying to be two steps ahead or waiting for the other shoe to drop. I’m the one defending my kids to others who just don’t quite understand. I’m the one always looking for the next intervention tool that will work. 

I’m the one in the middle of my family keeping it all together, because if I don’t, I’m not quite sure what will happen. 

Do you see me now?

I am more than a caregiver. 

Awkward Moments Like These

 The world of autism can be a strange place.  Especially for parents like me who are just trying to understand our kiddos, give them the best in life and navigate the ins and outs of a life lived differently.  The most typical experiences for some can often be the most unusual for families like ours.  

Last weekend we wrapped up my oldest son's hockey season.  He participated in his last tournament for the season and had a team party after his last game where parents and siblings were included.  It was held at a local restaurant that was very busy, I mean any place will be busy when you bring 14 families together.  

All of the kids gathered together between two tables- hockey players and their siblings.  The parents gathered together at the remainder of the tables that were reserved for our group.  This is a group of families that have had a great season together, have gotten to know one another well and have really spent a decent amount of time together in the last six months.  All of the kids and their siblings get along so well with one another.  Everyone includes everyone here.  And it's such a wonderful thing to see.  

My boys grabbed a seat with all the other kids.  Sunny laid under the table at Charlie's feet like she usually does.  

And that's where the similarities stopped.  

The other parents grabbed their seats, letting their kids do their own thing.

There I stood.  Awkwardly in the middle of the walkway next to the kids table where Charlie and Christian sat.  You see, it's not as easy as me grabbing my own chair at my own table.  Charlie needs help with Sunny occasionally, he needs help figuring out what he wants to order and then help ordering it.  He doesn't follow social cues well and isn't always sure how to handle certain situations.  I need to be near in the chance he starts to escalate and needs help problem solving. 

I felt so out of place in that moment.  I didn't want to take the seat next to Charlie and be the only parent at the kid table.  And I didn't want to make him come sit with me at an adult table. I do want him to be able to interact with the other kids.  I don't want to be a hinderance to that.  I want him to grow and blossom socially.  But I also knew I needed to be close.  It was just the day before when he struggled and needed someone to order his meal because he wouldn't speak, hold his hand in the parking lot to make sure he walked safely, talk him through some deep breathing when things didn't go as planned and needed silverware removed from the table because he was not using them in a safe manner. We never know when these struggles pop up.  So we need to be close, ready to help at a moment's notice.  

I eventually grabbed a seat at the bar portion of the restaurant where I had full view of Charlie and a straight shot to his table if I needed to help him.  Another awkward moment as all the other parents sat together, ordered their drinks, lunch and talked about the season wrapping up.  I felt, and probably looked, like a loner.  They weren't intentionally leaving me out and I wasn't intentionally trying to avoid them.  

I guess maybe I should get comfortable with awkward moments like these. Because no matter how we spin it, our life is different.  And that's ok.  

As for Charlie that day, he made it quite awhile hanging with the other kids before joining me.  He was getting too overwhelmed with how loud it was in there, he hated how sticky their table was and he needed constant reminders that yes, we did order our food and yes, it will be coming soon. 

The positive?  We were together as a family, we were able to join a group setting and we were in public and didn't have to leave early.  I'll trudge through those awkward moments and also call it a win.