Visual Schedule Part 2

Randomly: sometimes Little Handsome does or says stuff that I just crack up over. On the way to therapy 2 weeks ago for the first time ever, "Are we there yet?" I mean I just died out laughing. So good. Precious moment.
I have some notes about part 1 of our visual schedule.

• To get Little Handsome to notice (participate) in the schedule, every single morning I stack the first 5 or 6 on the table. This is a moment I know the Holy Spirit intervened because our ABA Therapist was all like that's awesome because it appeals to the OCD side of him as well as aiding in developing his sequencing skills. I'm just a mom, y'all.
• If you have more activities than slots, be as detailed as you want, then condense the morning as you go through the day.
• At first, I had the schedule on the fridge but Little Handsome would study it for like ten minutes every morning before he finally sat down to breakfast, so I moved it to the wall right next to his spot at the table.

And now a word on scheduling in general. Temple Grandin speaks about how important it is to teach livestock to respond to both the man on the horse and the man on the ground. Relating that to scheduling, barring essential things like bedtime, etc., have some flexibility. We are pretty stringent in our wake time routines and bedtime routines. You have to be, but being flexible is vital. Why? Because real life is flexible. You want your kiddo to respond to both the man on the horse and the man on the ground. Same thing goes for who your kid responds to, gets therapy from - sometimes you gotta mix it up. Not the rule, but the exception.

The second part of our schedule: the on-the-go schedule.

I developed this from an idea I saw from a mom of a typical toddler. She called it a toddler watch. I call it a lifesaver. When we first started with the visual schedule, Little Handsome wanted to take it with him in the car. Yes, take the enormous pocket chart with him. Thus the on-the-go schedule.

It's tiny. Maybe like 1.5" square. It's also very detailed - as in like now you go up the stairs, now you put on your shoes - very detailed. It takes a ton of preparation and is a little more challenging in the summer than during the school year because during the summer things are a bit more fluid.  

Biggest tip I can offer: do an entire schedule for every single day. This means all I have to do is pull out Monday, already on its key-ring, maybe make a couple of changes, then I am ready for the day. Doing this means prepping for the next day only takes me 5-10 minutes. 

The on-the-go schedule is studied by my kiddo in the car and if I need to, if I feel there is a meltdown headed my way, I can point to the pic on the schedule and tell him, the schedule says we do this next. Lifesaver.

Little Handsome is 4 years old. We've been using the on-the-go schedule for 5 months. Sweetheart and I have been wondering if he's ready to phase it out because we've been adding "surprise" stops into our excursions - stops not included in the on-the-go schedule - he has responded awesomely. Not sure if I'll do it now or after school starts...

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Weekend Procrastination

I am supposed to be working on this AssessMe thingamajig for my friend-church (we don't go there but a couple of years ago I forged some friendships there and we still keep up). Its 87 questions, so I am procrastinating - just like in school. Once a procrastinator, always a procrastinator. Procrastinator - just wanted to say it one more time.

This weekend I drove in my car, by myself, for 4 hours. FOUR HOURS. It was the first time since 2008. No, really. I went to this indescribable retreat for moms of special needs kids. Not special needs moms - I said that accidentally to a friend this morning at church. Belly laugh.

Listen, I am not a women's retreat or conference go-er - the thought kind of makes me grit my teeth and make me order my own hotel room, by myself (I like my alone time - in case you couldn't tell).

But this was prefect in every way. I read a blog post by Jen Hatmaker the other day where she referred to our generation as her tribe.

I have to say these ladies are my tribe and I could not be more proud to be associated with them, to eat, laugh, cry and worship with them. We speak the same language and have the same fears. Check out their whole-family ministry at the Rising Above FB Page.

And then there was the included spa - but I digress.

God is so good. 

Over the last few months, the giant recurring theme has been God's Provision. If I am repeating myself, it cause He's been repeating Himself! I am - I know its crazy - still in the middle of reading one of George Muller's books. Mine doesn't look like this because I borrowed it from the illustrious Mr. Skip from church and its from 1941. Yeah, you read that right. Something Muller did that stuck with me was he wrote his requests to God down. Yes, I know you've done that before, but I mean like a dated sentence or less on one side of the book and the corresponding answer on the opposite page. At last count, there were fifty thousand prayers God answered for Muller, five thousand on the same day.


Here are two ways God met our needs that have nothing to do with Little Handsome from my notes: 4/12/13 seeing God: saw a 31 verse party in my neighborhood with strangers, wished I could stop and get this organizing wall thing, but decided I didn't need to spend the money. Three days later one of my aunt's emailed and wanted to gift me something from 31.

Also on 4/12. Squirrels in the attic. Sweetheart isn't sure what he's going to do. Even if we hire someone, our tall house needs a creative solution. Our across the street neighbor randomly rents a manlift to get their house ready for a party and Sweetheart solves the problem (with Him) for free.

He is so good to me. Even in the very smallest things.

He is FIGHTING for me. 

He is FIGHTING for YOU.

 ²⁹ Then I said to you, “Do not be terrified; do not be afraid of them. ³⁰ The Lord your God, who is going before you, will fight for you, as he did for you in Egypt, before your very eyes, ³¹ and in the wilderness. There you saw how the Lord your God carried you, as a father carries his son, all the way you went until you reached this place.”

 Deuteronomy 1:29-31

The LORD carries you.

Visual Schedule Part 1

One of the very first things the therapists encouraged us to do to help Little Handsome was to make a visual schedule. Practically speaking, I was completely overwhelmed by this. We were starting new therapies/ evaluations all over the place and the thought of such a ginormous arts and crafts situation was sending me to crazy town. It literally consumed my thoughts constantly for like three weeks before I put pen to paper - like that twenty page paper I would always put off until the night before in seminary.

We tried a picture exchange system (PECS) pre-made off eBay. While it was worth the twenty bucks for a few weeks, eventually it drove me bananas with its fifty million cards, Velcro and the fact that Little Handsome wanted to take it in the car despite its large size. Then our ABA therapists encouraged us to only use photorealistic pictures, not cartoon-like ones. Peace out PECS - you weren't a good fit for us (although you have been a life-changer for many nonverbal kiddos).

I even had a meeting with our ABA therapist to talk about how to accomplish it...yeah, that cost us 75 buckaroos peeps. Even though I researched Pinterest, etc like a madwoman, I couldn't find exactly how to get from a to b. And when your brain is already somewhat fried, that's what I needed. After much trial and error, here is what's working for us right now. So here is what I did for our large visual schedule that a hangs in our kitchen...

Step 1: Buy a pocket chart.

Step 2: While you are waiting for that to ship, start taking pics of daily routine stuff like a madwoman. At first I was very detailed, like taking pics of his toothbrush, brush, him taking off his PJs, don't do that to yourself at first. Your brain will explode. Here are some that we use on a daily basis: waking up, getting his sister, breakfast, lunch, snack, supper, nap time, watch tv, playtime, outside, pic of his ABA therapist, get ready to go(there are three pics on that one card) - I think I probably have about thirty I use on a weekly basis in the kitchen visual schedule.

Step 3: format pics. I had requirements in my head for the next two steps - affordable, easy, and I wanted each pic to fit on the cards for the pocket chart without having to reformat craziness on my Mac. So to the joy of my friends and family who follow me on Instagram, that's what I used. I did everything on my iphone. Taking the pics with my phone, I used Frametastic (another app) to put four pics in one Instagram pic, then published them on Instagram.

Step 4: print pics. Then I used the Walgreens app to print Instagram square prints at my local Walgreens in an hour- dont't think you can print your square pics on 4x6s to save money and cut off the excess - it doesn't work without major finagling on your part. Check retailmenot for coupon codes for photos at Walgreens to save money before you purchase.

Step 5: Before cutting, laminate. This is related to my next post on an on-the-go schedule. I chose to laminate the pics because I knew I would also be using them for that and the run-of-the-mill paper they use at Walgreens would not have withstood Little Handsome. I bought this great little laminator at Walmart for around twenty five dollars. Worth. Every. Penny. I have used it for all sorts of things.

Step 6: cut those bad boys up - do yourself a favor and use either a cheapie papercutter or one at your church or office. I have only just recently organized the probably hundreds of photos I have that now include daily routine, people, and places. More on that later.

 

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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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Comprehensive Evaluation Part 2

The past: Sweetheart and I met with the psychologist, the speech therapist and the occupational therapist that did Little Handsome's evaluations. I don't want to gloss over or hurry through this moment. It was weird. You know those moments when you can't explain why you react the way you do, but know it can only be God? Strangely, my prayer that day wasn't for Little Handsome. In my heart, I already knew the results and He prepared me for that. God just wanted me to glorify Him during that meeting. To show Him to the one's giving us the results. Weird.
I left there feeling blessed and taken care of, scared and exhilarated. So boom. We've got a kiddo with autism.

First thing I did was call his school and set up a meeting with the director later that day because all of the kiddos were taken care of. GOD BLEW MY MIND DURING THAT MEETING. My purpose was to talk to the director about how they handle special needs kids (it's a private preschool) and to seek out what teacher might be a good fit for Little Handsome next year as registration was coming up one week later (God is so good).

You know what my Savior did? Before I even called that morning, the director spoke to Little Handsome's current teacher to see what teacher might be a good fit for him next year. Lets just let that sink in...I had never even spoken to the director before.

He walks before us. The Lord will give you meager bread and water during oppression, but your Teacher will not hide Himself any longer. Your eyes will see your Teacher, and whenever you turn to the right or to the left, your ears will hear this command behind you: “This is the way. Walk in it.” (Isaiah 30:20, 21 HCSB)

Thus began the next chapter, the newest adventure. I don't always feel secure ...there are so many decisions you have to make. You have to fight. Be your kid's advocate. Be tireless and relentless in finding therapy all while having no idea what you're doing. Sometimes I feel like I was born for this. Sometimes you'll find me crying in my minivan or at the kitchen table.
All I have in You is more than enough.

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What's in a Name?

Ahhhhh, Starbucks and Gilmore Girls. I have exactly one hour by myself today while the eldest crazies are at school and Schmoopy is napping.

Perhaps you were wondering why in the world I named this blog what I did. Maybe you are even kind of offended. When I first started thinking about a blog again, this is the first name that came into my head. That speaks volumes of my sense of humor - and maybe The Lord's. I tried it out on my mom and she was like, "oh yeah. Funny, like if you don't laugh sometimes you"ll cry." So noble that woman. That is certainly one way you can take it, but, nope. I mean sometimes its just funny. Sometimes what Little Handsome does is just classicly quirky and slightly unusual and makes me laugh out loud.

Back to the name of the blog. The day after we got our diagnosis, I took Little Handsome with me to grocery shop while Sweetheart had the other two. Afterwards we stopped at Dairy Queen (very developed palettes, have we). Little Handsome chose one of the tall bar tables to sit at. We're just hanging out and BOOM, Handsome just completely falls out of his chair and onto the floor. Now I know my mom instincts should not have been to bust out laughing as I oh-so-compassionately helped him up while the world watched (it was half price day), but that's what happened. I did manage to stop myself from yelling, "don't worry! He's autistic." And for that I am pretty proud.

Yes, he was fine, but I will forever remember that incident as a defining moment in changing the way I view some things that Little Handsome does. And also how I don't want to be the mom that shouts out "he's autistic!" every time he does something out of the ordinary.

Because, y'all, my kid is extraordinary.

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