Month: August 2019

Dear Special Needs Mama –

I see you.

You’re chasing your child who runs at any chance he gets.  You’re trying to stay calm, but you also know that you HAVE to catch him because there is a road nearby, and he has no fear…and he seems to get faster every day.

I see you.

You’re trying to help your child through a meltdown.  He is kicking, screaming, and going “no-bones-jello-dude” on you, and my eyes go straight to you.  You’re sweaty, trying to wrangle your kid.  People are staring, and you’re so embarrassed because you know what they’re thinking. (“She’s a bad mom.  He’s a bad kid.  My kid wouldn’t act that way.  He needs some discipline.  They should have stayed home if he was going to act like that.”)  To others you look calm, but I know you’re on the verge of tears.

I see you.

You’re trying something different, going outside of your comfort zone.  You just want him to try things, to be a part of the world…but I see your anxiety too.  You’re on edge, just waiting for him to run.  Or scream.  Or throw something.  You’re trying to stay five steps ahead, always preparing for the worst, but hoping for the best.

I see you.

You’re not really a part of the group.  Other parents can have a conversation, but you’re never fully engaged.  You’re always watching your child, half listening to the adult conversation while 100% attending to your child’s needs.  When he takes off running, you don’t miss a beat, always ready to pounce. I know it’s exhausting.

I see you.

You’re trying to live your life just like everyone else, but you didn’t sleep last night.  You’re going on years of very little sleep, and it’s aging you.  Life is hard when you’re sleep deprived.

I see you.

You’re budgeting, counting pennies, trying to make it all work.  Meeting your child’s needs is expensive.  But you make it work because he’s worth it. You cut costs where you can, and you work as much as possible, but the financial burden is a big worry for you.

I see you.

You worry.  Will he be okay?  How will we get through this?  Will he ever make a friend?  Why my child?  Why me?  I wasn’t prepared for this.  Who will love and care for him when I die?  I can never, ever die.

I won’t tell you that “you’re the best mom,” because I know that you had no choice.  You do what you have to do.  When you become a parent, there was no way to know what kind of child you would get.  You got “the difficult child,” so that’s the child you stepped up to parent.

I won’t tell you that “I don’t know how you do it, I just couldn’t do it.”  I know that saying hurts, even though it wasn’t meant to.  Because honestly, you don’t know how you do it either.  You just do.  No one knows what they can do until given the opportunity.  You aren’t stronger or more patient than anyone else…you just became the parent your child needs.  It looks hard to other people because it IS hard.  It’s just as hard for you as it would be for anyone else.

I won’t tell you that “God won’t give you more than you can handle.”  Because He will.  He does.  In your case, He did.  I do know, though, that God CAN handle autism.  He will give you the tools you need, and more importantly, the PEOPLE you need to get you through.

I see you.  I respect you.  Keep going, Mama.

I was recently reminded just how important it is to find “your people.”

Guys, I have a great support system, I really, really do.  My family cares and helps me.  I have the best friends who support me.  I have church family and coworkers.

They’re all great, but I think – as a special needs parent – you need a different type of community.

Because here’s the thing:  your mom might be the most wonderful mother ever…but she has never raised a child with specials.

Your best friend might be a true ride-or-die kind of gal who loves your kid like her own…but she has never raised a child who has special needs.

There is just something special about connecting with other moms who “get it.”  They are living the special-needs-parenting-life just like you.  They know the daily struggles, the worries, the fears.  They understand that everything (literally e-v-e-r-y-t-h-i-n-g) is a battle.  They understand the balancing act you do when you’re trying to raise a child on the spectrum AND a neurotypical child.  They, too, are skirting that fine line of “let’s expose him to things to give him experiences” and “we don’t want to push him too much.” They know the work it takes, the dedication you need, and they’re also experiencing that exhaustion that only another autism mama would understand….hello, caffeine.  (Please and thank you.)

I’ve met strangers and the second we find out that we’re both autism moms, it’s like, “Did we just become best friends?!”  It’s an instant bond – a connection formed through our shared experiences.

I’ve met moms through social media who I consider true friends.  We haven’t met in person, we live states away, but I consider them go-to’s for advice and comfort.

So go find your people.

Now, I’m not telling you to go find strange people online and try to become their BFF, but I am saying that you need to seek out other parents (just find the cool, safe ones!). It’s good for the soul – to connect to others who just get it.

Go find your people.

Church.

It’s always been hard for us. 

This week, Colin got to attend his first-ever Vacation Bible School, and he had the best time.

We started off a little rocky on the first night – and that was my fault. I set this standard – this goal – in my head: he was going to attend each little activity.  He would sit.  He would listen.  Well…he didn’t do that, and I got frustrated. 

I re-evaluated, and checked my expectations at the door the next night.  We followed his lead.  If he wanted to walk around, then we walked around.  He went to snack, craft, and game time.  We gently pushed him when we could.  Sometimes it took five of us to complete one craft with him, but it got done!

Tonight, I watched him run through the mosh pit that was a bunch of 1st and 2nd graders dancing to the VBS songs.  He wasn’t doing the choreography like they were, but he was happy doing his own thing.  My legs were tired from chasing him, my arms were sore from carrying him back to the group for the 50th time tonight, but my heart just had to smile.  He’s worked so hard to get here…and I’ve done a lot of praying. 

So many people came up to me this week to comment on how far he’s come, how well he’s doing, and to say how much fun he’s had this week.  They’ll never know how much their words meant to me.  To know that they see him – truly see him – and support him, that means so much.  I think this smile says it all.