Grieving Normal

I didn't want to even write this - hence my total radio silence for the last few weeks. Then my friend, Emily, just had to write something about grieving normal which is only the exact same phrase I used to describe how I felt during and after Little Handsome's end of the school year musical. Once he saw us in the audience, he was done. No singing - only crying - and his teacher brought him down to me.

If you were watching you probably thought, no big deal, he saw you and didn't want to be on stage. Even now, I feel like I have no right to feel the way I do or like I am being super ridiculously whiny. BUT, I wanted to be a proud parent. And when we experience something like this that reminds us that our kid is slightly unusual, my outlook isn't just, "oh well, we'll get 'em next time." It's more like will I ever, like as in ever, get to see Little Handsome on stage singing, will I ever get to be that proud parent, will we ever get to be super pumped for him and have a blast at his musical? To some, I can hear you saying what's the big deal? Well, to me it's a big deal.

Cue me crying at the register at Firehouse, telling my mom, that sometimes it just hits me and right that second I just wanted normal. Sometimes, Little Handsome is making such strides and then something happens and I just grieve for normal.

Poor checkout out girl - she said it happens to her all the time - right. I'm sorry for mentioning Firehouse, Emily.

I don't have a pretty bow to tie things up with. I still feel this way in certain situations, I think I might always feel this way. At supper later that night, I nonchalantly asked Little Handsome why he didn't sing at school. He quietly responded, "there were loud noises." That's fair, I guess.

One thing that God did use that very day, was an Instagram pic from a friend from my YWAM days. It was an excerpt from My Utmost for His Highest for that day: The Habit of Recognizing God's Provision. Goodness Gracious.

Does it really matter that our circumstances are difficult? Why shouldn’t they be! If we give way to self-pity and indulge in the luxury of misery, we remove God’s riches from our lives and hinder others from entering into His provision. No sin is worse than the sin of self-pity, because it removes God from the throne of our lives, replacing Him with our own self-interests. It causes us to open our mouths only to complain, and we simply become spiritual sponges— always absorbing, never giving, and never being satisfied. And there is nothing lovely or generous about our lives.

Oswald Chambers, My Utmost for His Highest

 

 

 

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When Therapy Sucks

I've been holding onto this one. Sometimes, you can be doing everything right and you still just have a sucky day or like last week, an entire week makes you question everything. Like out of no where, that visual schedule you spent maybe 30 hours making and who knows how much money just doesn't work anymore. And you feel like your team of therapists should have the answer but they don't. Or maybe from the start you've been unsure about the owner of one of your therapy companies and then something goes awry and you have to have a "discussion" with them. I mean, these situations are totally hypothetical. No really. Okay, maybe not.

Therapy. I am worn out just typing that word. You don't just sign up for therapy. With each and every different type of therapy, there is an evaluation for your kiddo, then another appointment with the results, then you have to start - which means another person in Little Handsome's life that I have to just trust will do what he needs.

Currently, our therapy is this: 4 hours of applied behavior analysis (ABA) a week, school (Little Handsome is mainstreamed into a regular preschool) 2 days a week, 30 mins of private speech therapy a week (Little Handsome falls in the gray area of not qualifying through the school system because he's been in speech a year), and 30 mins a week of private occupational therapy. The only peep that comes to us is our ABA therapist, 2 hours a week.

This summer, we'll add 2 more hours of ABA. Side note on ABA: it's hands-down given us the quickest results. It's been amazing and hard. Unfortunately, our state does not cover it through insurance so it can be hard to find and is crazy expensive (shout out to our sponsor - my dad). Temple Grandin says ABA is the Christmas Tree and speech and OT are the ornaments. This has helped me reconcile in my head why we only need 30 minutes for some therapy and 2 hours for others.

Therapy is a yucky roller coaster - totally and completely mind-boggling one day and the next tantrums of ridiculousness. Sometimes this switch is in the same breath. You'd think I would've been ready for the ride since we've been in speech for a year, but not so much.

What we're dealing with now - is this awesome tantrum because of his autism or because he's three and he's trying to kill us ever so slowly? Our ABA company responds the same way no matter what. We agree to disagree. Now I know all of the be consistent blah blah blah and trust me, we are. But for this one situation, "just ignore it" just ain't workin'. Can I get an amen?

So shout out to all the parents out there wondering if you're doing the right thing. You can do it. If there's something not quite right that the therapist tells you to do, tell them you disagree and stick with your own plan for a few days. Maybe it will work, maybe it won't.

Gasp! Did I just say to ignore the experts?!? Yes. I do think this is ok in certain situations. I'm so controversial. Bottom line: your kiddo is your kiddo. You are his/her champion. Father God knows them inside and out and you know them the best after Him. Talk to Him about those things that make you feel unsettled, then stick to your guns.

 

 

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