October 2011 - Journeying Outside My Box

Sticky Fingers - Exciting!

October 31, 2024 By Rebekah 0

Since October 11th, the start of Picasso’s intensive, we’ve had at least one appointment scheduled almost every day. We’ve fought 3 colds in that time as well, had some very rainy days, and even some snow. Yes, snow.

We’ve rushed breakfast a few times, we’ve packed lunches other days, we’ve re-heated dinners some nights. We’ve worked around the schedule. Picasso’s therapy schedule has changed and that will actually free us up a little more. We’re moving away from 10 days of therapy in a row, to a once-a-week schedule. We’ll see how that goes for this school quarter. Theoretically, it should mean a little less of the emotional turmoil for our son. I really hope that the progress continues, and that we can work on some of the emotional parts of things, in a less stressful way.

As we’ve rushed through these past few weeks, a lot of things have fallen through the cracks. It’s typical, and so I’m not beating myself up about it. I have a mountain of laundry to do, a bunch of emails to return, more appointments and paperwork (because it just doesn’t end, but that’s ok).

For tomorrow, though, we are having a day at home - the kids are telling me it will be a Pajama Day. We’ll still have schoolwork to do, and all our regular things, but with NO travel involved. I’m going to make a BIG breakfast for my wonderful kids who endure the crazy schedule, because that’s what families do - they keep on loving and support each other through whatever comes! There will be pancakes, and sausage, and fruit, and hot chocolate. There will be sticky forks, sticky fingers, and best of all, sticky kisses.

I can’t wait!

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Is This All There Is? (Thankfully, NO!)

October 24, 2024 By Rebekah 0

This has been my question of late - maybe not in those exact words, but in a similar sentiment. The past 10 days of therapy have been filled with resistance, attempts at escape, some tears, and I’m not just talking about me. Picasso has struggled with all these things, and more - screaming and tantrums caused by lack of understanding, sensory overload which wipes him out, lack of understanding mentally and emotionally. There were a few nights when I really didn’t think I could stand any more of the screaming and crying.

It’s in those times that I am extremely grateful to be married to someone who is NOT afraid to jump in and help manage the meltdowns!

This past intensive has pretty much pushed him over the edge, so much so that the therapists are recommending *not* continuing with the intensive for the second school quarter. After that we’ll evaluate to see what seems to work better for our guy. So later this week we will begin weekly OT sessions. Thankfully, our session will be immediately after an hour we’re already there, so no extra travel time will be required of us.

It’s times like these that remind me to be extremely grateful for a therapy center that is most concerned with the needs of the child first, followed by the needs of the family.

The intensives always bring ups & downs. But when you’re in the middle of yet another meltdown, you’re not focused on the positives that might be happening on occasion. You’re focused on fixing whatever the trigger is that is causing the meltdown - and really, you’re praying that you can figure out what on earth it actually is.

And so my questions of late - Is this all there is? Do I currently exist just to move from one meltdown to the next? Just to manage these crazy things that I wouldn’t wish on anyone? To drive over 100 miles a week to & from therapy? To painstakingly plan schedules? I remember having some thoughts like this, when the kids were all smaller: Will I get to sleep through a night again, ever? Will my kid ever stop wearing diapers?

The difference, in my very humble opinion, is that those are questions of normal development. All parents struggle with lack of sleep, all parents struggle with potty-training - when to start, if, or how, to reward. But I feel like I’ve moved into a different realm of questions - ones that maybe, I wish I didn’t have to ask. Because it means that my kid’s not typical. I find myself toe-to-toe with an awesome 7-year old boy who can read great books, design fun structures, draw really well, but who can’t tell me that when I brush him, it feels like a bazillion bugs crawling all over him. Well, I wouldn’t want to be brushed, either!

Is this really all there is? How can such a smart kid lack so much language and ability to converse? What am I doing so wrong that my kid keeps screaming? And why do people look at me like I have 3 heads when I try to explain about his issues? (Please note, I already know that “it won’t always be like this”. I know he will grow through a lot of this, and ultimately will grow out of a lot of this. I also know that until you’ve done battle with someone who can hear you but cannot understand you, you really don’t understand a parent’s perspective on this - and that’s ok!)

We went to church on Sunday and started out with a few small problems, but seemed to pick up as the morning went along. We had a guest speaker and his sermon was dealing with the question of:

Is This All There Is?

Um, coincidence? Tim & I don’t think so. I had considered staying home, because I was really just about at the end of my rope. But, this family goes to church, and I had additional responsibilities that morning. It would have been easy to take a much-needed break and I’m sure I would have gained a lot by just resting. But I gained more by getting myself out to church and listening to a sermon that was directed at just what I needed to hear.

The speaker’s text was from John 10:1-10, but specifically verse 10: “…I am come that they might have life, and that they might have it more abundantly.”

More Abundantly.

My current life is not feeling very abundant. The purpose of Jesus coming is that we may have life - more abundantly. Our purpose is not just to exist. We’re not just here to mark time and then move on. We’re not here to have an unfulfilled life. We’re here to have ABUNDANT life.

Abundant -
plentiful, bountiful, exuberant, cup-runneth-over
- life.

Just a chapter before, Jesus tells the parable of the man born blind. His disciples asked him who had sinned, that this man was born blind - the parents, or the son?

I love Jesus’ answer in John 9:3 - “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” After giving this answer, Jesus spits on the ground, makes mud, rubs it on the blind man’s eyes, and sends him to wash in the Pool of Siloam. (He was “sent” - implying that Jesus did not go with him.) The man did as he was instructed, and “came home seeing” (John 9:7).

The passage goes on to say that those who had known him began asking if this was the blind man they had known. The man tells of Jesus’ miracle, washing in the Pool of Siloam, and receiving his sight. The others want to know where Jesus is. Of course the man does not know. The others take him before the religious leaders, but the religious leaders were not convinced of this man’s story, despite asking him directly. They ask his parents who give a basic answer - yes, he’s our son; yes, he was born blind, but you ask him how this happened; he is of age. His parents don’t speak up in support of him. The religious leaders cannot recognize an act of healing by Jesus.

John 9 goes on to say that Jesus heard about the trouble this man was facing - blindness, healing, abandonment, struggle with the religious leaders - “and when he found him….” Jesus went looking for the man who had been born blind. This man was born blind but was healed. Upon being healed, no one believed and supported him as he tried to explain what happened. BUT - Jesus came to find him. Jesus stood before the religious leaders to answer for this man.

Again, John 9:3 - “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” Jesus came back to find the man, he supported him in his questioning from the religious leaders, he had an opportunity to display his work in that man’s life. On that day, the works of God were displayed in that man.

The man born blind was old enough to go before the religious leaders to speak for himself. He was blind since birth - and so, had been blind for quite some time. I’m sure he must have wondered, “Is this all there is?” Imagine the transformation between blindness and sight. Blindness: stumbling through the day, never sure what’s around the next bend, not seeing what’s in the road ahead. But Jesus came to him and gave him sight. And then Jesus came back to him so that the works of God could be displayed in him. This man had life, but after meeting Jesus, this man had abundant life.

In my struggles, there is life - there is stumbling through the day, managing meltdowns, driving to therapy, managing schedules, teaching tasks that should come innately but don’t. Jesus gave me life, but his desire is that I have abundant life - plentiful, bountiful, exuberant, cup-runneth-over life!

How do I move from “life” to “abundant life”? By letting go of my desire to control life. By applying the same principles to my life - showing up, pressing on - but allowing God’s power to work on my behalf. In one word?

TRUST.

Is this all there is - just life? No!

There is the option of ABUNDANT life,
plentiful, bountiful, exuberant, cup-runneth-over

if you (and I) can TRUST!

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Filed Under: parenting

Quite Possibly Perfect

October 23, 2024 By Rebekah 0

It’s that time of year again - it seems that I long for this time each year. The long, lazy days of summer have passed, although they seem to pass faster and more furiously the older I get. We’re noticing the days aren’t lasting nearly as long as they seemed to be even just a week ago. The cold winter is not yet upon us, and autumn provides a natural transition to slow down and savor the wonder that is all around us.

“Autumn is a second spring when every leaf’s a flower.” -Albert Camus

This time of the year is so rich with warm colors - fiery reds that dance against the sky, bright yellow leaves that seem to reflect the sun, the deep orange of perfect pumpkins lining the fields, warm and cozy browns in leaves that have taken flight from high above and now line my path on a cool crisp day.

This time of year is full of wonderful aromas - the faint smell of smoke from a neighbor’s chimney, apple cider warming on the stove, a bonfire in the cool night air, freshly baked treats of all varieties.

Fall also abounds with the joy of crisp sounds - dry leaves underfoot, fresh apples that crunch just perfectly upon first bite, a crackling fire on a cool evening.

Autumn offers an abundance of delicious flavors that we look forward to each year - a slice of deep-dish apple pie, a warm Thanksgiving dinner with all the favorite family recipes, hearty soups that nourish and warm us.

This is the time of year when I flirt with the nighttime temperatures to see just how long we can leave the windows open for a touch of fresh air. I love twirling in a pile of leaves, holding hands with our kids. I enjoy the tradition of Charlie Brown holiday movies that seem to be timeless - thank you Charles Schulz!

I savor my morning cup of coffee just a little longer as I look out onto trees that seem to be just a little more bare than they were the day before. This is the time of year when I fall back in love with an afternoon cup of hot tea - seems to warm body and soul.

“Delicious autumn! My very soul is wedded to it, and if I were a bird I would fly about the earth seeking the successive autumns.” -George Eliot

As we enjoy the cooler temperatures, the abundance of outdoor fun still to be had, we seem to begin a natural time of reflection as we turn the corner toward the holidays. This is a time rich with family tradition, full of merriment, and overflowing with goodwill to neighbors. Maybe that is why I love fall!

“Winter is an etching,

spring a watercolor,

summer an oil painting

and autumn a mosaic of them all.”

-Stanley Horowitz

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Roadblock…

October 17, 2024 By Rebekah 0

Me: “What can we do that we’re not already doing?”
Her: “There isn’t anything else right now. We’re doing all we can with what we’re currently offering. We may need to explore different avenues because while we’re making great gains, we’re unable to move past this issue and overall, it’s impeding current and future growth.”

That’s how my Monday started. Well, even before that. We rarely have to wake the kids, but today, they were all still sleeping after 7am - which is “sleeping in” for them. We had to leave at 7:45 for today’s 2 therapy appointments, and so we had to wake all 3 kids. Really not my favorite way to start a Monday.

During our guy’s first hour of therapy, it started well - I could hear jumping, laughing, talking. All good signs that things were going well. His therapy room for that hour is right off the waiting room, so it’s easy to hear sounds, laughs, giggles, squeals. Halfway through the session, the sounds ended. What started next was heartbreaking for me to listen to. The therapist began her quest to try to talk him through his resistance to continuing. It sounded to me like he just hit an emotional wall, and that was it. She did a great job talking him through it, but to no avail. Finally, I was “invited” into the room by my son, at the therapist’s suggestion. What happened next was not pretty - she and I quietly tried to talk through what happened. He continued to struggle and the meltdown progressed, resulting in some very regressive behaviors.

It seems that what’s happening is that his emotional immaturity is getting in the way of true progress. When I say “emotional immaturity” I don’t necessarily mean that he acts like a 2-year old. I do mean that he seems to have no real understanding of any emotion. Instead, he says that he’s bored. What’s tough is that it’s hard to tell if it’s a response to a particular therapist, a particular activity, a genuine lack of emotional understanding, or just what. The therapists are leaning toward a lack of emotional understanding, and I’d probably agree. But I can work through some emotional things with him and can help him understand and label these emotions as they arise.

But, I’m Mom. The problem is coming in that he’s not able to work through emotions with anyone else, and it’s impeding (consistently) his therapies.

Today I’m feeling a lot of different emotions. But what I’m really feeling, I think, at the core of all of it, is anger and frustration.
Anger - we took this kid to the doctor time after time and explained ALL of this. “Nothing’s wrong with your son.” What have we missed by NOT getting him help sooner? But that presumes guilt on our part. We’re not guilty. The better train of thought is that we knew something was wrong, but were never given other options of HOW to get help for him until years after we had already been saying, “Something’s not right with this child.” How much farther could we be into this whole process if the doctors had said, “We don’t think there’s something wrong, but you could pursue this avenue,” and then given us information on developmental pediatricians, or child psychologists. Dwelling on that doesn’t help me, though.
Frustration - this is a hard road. Every single day is a challenge. There’s rarely an “easy” day, let alone an “easy” moment. What seem to be occasional “easy” moments come back to haunt me sometimes when there’s a hole in a blanket, or a book that’s been torn apart.

Today is a low day. Thankfully, my love for him is not contingent upon his behavior. I know he struggles. And apparently he struggles mightily, more often than even I’m aware of sometimes. But I know there’s love. Today when we got home from therapy and from some chaos that followed that, we all had our lunch, rather quietly. Our older son had an online class to get to, and so we tried to be quiet for his sake. Gave us all some time to reflect. After lunch, Picasso went to get his markers to do some drawing. I guess he’d cut out a heart and put it near his markers. He picked it up, came over by where I was sitting, set the heart down next to me while pausing to rub shoulders with me, and then walked on.

Dear Boy, I know you don’t know what “embarrassment” or “frustration” or other such emotions are, yet. But clearly, you know love.

If I get nothing else right, in all my life, it’s enough for me that my children know love.

I don’t know where we go from here - I can guess, or surmise, or predict. But I don’t know. We’ll be talking with the therapists more soon, and seeing what they suggest, and discussing more options with the school. It’s a long road. And today, it’s very bleak road. And today, I don’t feel strong enough for anymore battles.

And I’ll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I’ve cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm.

-Casting Crowns

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Filed Under: parenting, regression, special needs therapy

Who Is He?

October 14, 2024 By Rebekah 0

Recently, I’ve been asked a question by several different people for a variety of reasons. The question is something along the lines of “Who is the real Picasso? How do I differentiate between the variety of emotions that he might display and know who he really is?” A great question - and one that really got me thinking!

Disguises!

One thing I’ve learned over the years is that my child does display a variety of emotions. But being his mom, I am often able to know what’s coming, in terms of emotion: a meltdown, or a belly laugh, or frustrated yelling. I know this because I’ve fought, time after time, to get through to my son. When he got out of bed 50+ times in ONE hour, I didn’t resort to physical punishment or hollering at him. I simply stayed by his room and put him in bed 50+ times. Because with this kid, that’s what it takes. There’s a huge gap between what it looks like he’s capable of learning/doing, and what he’s actually capable of learning/doing.

This child is either completely defiant or incapable of understanding rules. I know, as his mom, that it’s the understanding that he lacks (and believe me, we’ve asked about the defiance, but we firmly believe that does NOT play into his issues, thankfully!). But even though I, as his mom, KNOW that he wants to be good, sometimes it’s nice to be able to back that up with some facts. .

When I answer “Who is he really?” I often have to chuckle. If the person to whom I’m speaking knows my dad, I’ll say that Picasso is a junior version of my dad - very contemplative, seemingly extroverted but definitely needing his own space and some quietness at times, and very likely to pop a small joke into a conversation. If I’m talking to someone who knows my dad, they will reply, “Oh, yes! I know exactly what you’re talking about!” And I will say - “That’s when you know you truly have our son, and not the emotional interference.”

Picasso on the left, my dad on the right

What about his mischievous and playful side and that they have to remind him to listen and cooperate several times? Being Mom, I can tell you, that is his boyishness. However, he genuinely doesn’t hear/can’t process what is being said to him. (Hence an upcoming appointment with the audiologist.)

What about his anger and frustration and folding his arms and turning away? At that point, he’s overwhelmed. He no longer hears you. He literally needs a break to process all that he’s already heard. He’s 5-10 minutes behind in processing, so imagine how tough it is to keep up in a classroom setting. He has to turn away in order to find the quiet he needs. He is not mad AT someone, he’s frustrated at his own inability to keep up and that’s going to look like anger because it’s easier to convey anger and frustration rather than the extreme embarrassment he’s feeling at being so far behind in the auditory processing. It’s really very sad when he gets to this point of anger and frustration because there’s just nothing we can do that is guaranteed to help him snap out of it. But I honestly don’t think he’s learned the emotion of embarrassment yet. (Yes, we teach emotions because he doesn’t innately understand emotions.)

BUT - Who is my son? My son is a good kid. All 3 of our children are wonderful, but it’s funny - out of all 3 kids, this guy is the LEAST likely to disobey just for the sake of disobeying. The other 2 don’t generally disobey very much either, but I believe Picasso’s desire to be good is innate and also is part of his issues. He’s often very literal and to add in a component of disobedience for the fun of it adds a whole other element to explaining things to him. For example, if I say, “Don’t run into the street” he may still run into the street or near the street. We then explain that it’s dangerous, we point out cars going by, etc. It’s hard enough for him to process this “direct teaching”. But he’s not likely to play cat-and-mouse and try to sneak closer to the road because he can’t explain to us that he’s just trying to play. He also can’t understand that we’re needing to focus on his attitude AND his actions in a cat-and-mouse situation - it’s too much for him to comprehend. As a result, he’s very literal and works hard to cooperate so that we can focus on the one issue (not running near the street) without needing to discuss emotions and things that muddy the waters for him.

There was a discussion today that affirmed my belief that he genuinely desires to be a good kid. He and his sister were fighting on the way from therapy to the orthodontist. After several warnings and reminders to not holler at each other and to keep hands to self, I informed him that he had lost his game privileges at the orthodontist (they have several video games there for the kids). His reply was, “Ok, I’ll be good.” I said that I didn’t intend to change my mind just because he promised to be good - he’d already promised me that several times today. (The therapy intensive is getting really tough for him and he’s starting to lose control of his emotions and his behavior.)

His reply really hit me, as he’s not always this insightful. “I’m not saying that I’ll be good to play the video games. You just said I can’t play. I’m going to be good because I want to be good.”

Wow - on so many levels! First, that’s a really great answer! Second, he didn’t get mad at me when I took away his game privileges. Third, he conveyed who he really is in those 3 short sentences. Fourth, he was able to communicate his feelings.

And to his credit, he was good for the rest of the drive.

Who is our son? How do you really know when it’s genuinely him and not some emotional interference?

The happy, cooperative guy who is being boyish, but not bad - that’s our son.

He’s the one working harder than everyone else, to be good. That’s our son!

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Filed Under: anxiety and autism, autism spectrum diagnosis, character traits, dealing with feelings, sensory issues

A Good, Good Day!

October 13, 2024 By Rebekah 0

(I’m a little late getting this posted - this all took place yesterday, October 12th.)

Me: Hey, do you want music for the drive to therapy?
Him: Yes!
Me: What kind?
Him: Charlie Brown Christmas music.
(oh boy…2 days in a row.)

Me: Check out the great color on those trees.
Him: Wow - that orange color is so cool!

Him: If I had a motorcycle that I bought for 1 penny, and all the traffic lights were green, it would be like they were all bowing down to me. (think - Joseph’s dreams in Genesis 37, of the grain, sun, moon & stars bowing down to him.)
Me: Yes, sort of.
Him: I mean, the lights would be green, letting me do what I want so it would be like they were bowing down to me.
Me: Sort of, yes.
Him: Can’t you answer with something other than ‘sort of’?
Me: Can I say ‘kind of’?
Him: Yes, but all you’re saying is ‘sort of’; you need to use different words. You can’t just say ‘sort of’ all the time.
(This from a kid who doesn’t seem to care, half the time, if I even answer him at all! And he’s never been picky about my words before.)

Eye contact. Full sentences. Original thoughts. Engaging. Initiating.
CONVERSATION - back and forth, several times.
Asking for a variety of language, asking for clarification when he didn’t understand, expressing opinions.

Wow, Wow, WOW!!! I told a friend last night that I don’t know if this type of interaction will continue or not but that we are definitely celebrating a huge day yesterday!

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Filed Under: everyday success, special needs therapy

Catching Up…Moving Ahead

October 11, 2024 By Rebekah 0

We’ve had a relatively non-busy week, in terms of things we had scheduled. However, we’ve had some good things happening, too, and I wanted to highlight those.

Picasso finished his picture for the Arts for Autism fundraiser we’re attending in town, on October 15th. He has a *strong* love for Sharpies (used on his bed, bathroom cabinets, back of door, walls - despite my best attempts at hiding them), and this seemed like the perfect opportunity to let him go all out with colored Sharpies for a good cause . He drew this hot rod and then decided he wanted it matted and framed. The mat and frame were his choice. The blue frame was what he wanted as that’s the color that Autism Speaks has chosen to associate with autism awareness. Insightful!

Mozart lost a tooth! I think he wanted to keep up with his brother & sister and not miss out on the tooth fairy visits. He hasn’t lost a tooth in quite awhile, so this was a nice treat for him.

Over the weekend we took the kids to a local farm that has a lot of harvest activities for families. We’ve done all of the activities except the 5-acre corn maze. Saturday was a beautiful day and we decided to attempt the corn maze and choose a pumpkin. Short legs seem to take a little longer to get through the maze, so it took a little over an hour, but we followed the paths and had a really fun time! Below is a picture of the maze we walked through. The kids enjoyed knowing that we were “in the A” or “walking on the edge of the maple leaf”.

Starting tomorrow, we have Picasso’s next 10-day occupational therapy intensive. The schedule has been prepared for Picasso using a full-month calendar, with the dates & times of therapy typed out in the colors he chose for each therapist. I made my quick-reference guide for the fridge.

(It’s hard to tell, but Zach’s and Anna’s names are different colors - red and pink).

I have some meals prepared and in the freezer for those nights when it may be tough to prepare a meal. I have other “quick fixes” that I can easily pull out and make for them. Meals during these 10 days need to be easy as we’re gone for 3-4 hours each day and may go through some severe emotional ups and downs resulting in a lack of dinner prep time. It’s nice to have some healthy options set aside and in mind - definitely something I learned while going through the first couple intensives. I love learning these extras along the way, to be more prepared next time. I’m always looking for ways to simplify life!

I also have help for those times when kids’ schedules overlap. Scheduling his intensive doesn’t just mean receiving the times from the therapy center and arriving for those hours. It means shuffling online classes with the boys’ teachers, getting kids to and from other already-scheduled appointments, dropping kids off with grandparents on some of the days where we’re away for 4 hours so they don’t have to miss online classes that they *must* attend. I’m really grateful for other people’s flexibility to be able to help so that our lives can continue in a moderately normal way despite being incredibly abnormal for these 10-day intensives.

I had a great report from Picasso’s Sunday school and children’s church teacher on Sunday. He did very well - hopefully we’re through the toughest of the transitions! We’re so proud to hear that he’s doing well, is able to be engaged, is able to use some words, and even that he can cover his ears when the noise gets too loud. That sure beats him hollering or having a meltdown or running away!

Additionally, today we had another first - a fun first; a funny first! Picasso used air quotes correctly. I know - really doesn’t seem newsworthy. However, for a kid who lacks in social awareness, this is a huge step! Might have just been a fluke that he used them correctly today, or it might be the beginning of “all things air quotes” and I may find myself tired of seeing air quotes after awhile. Either way - the only way he could possibly KNOW to use air quotes is by noticing other people. Noticing other people means he’s looking at other people. Looking at other people means he’s aware of the fact that there are other people to notice. To sum up: these air quotes indicate a success in Social Skills Training! Hooray!

His last OT-intensive was in July. Due to this therapy basically overwhelming his central nervous system, we don’t listen to much music on the drive to/from therapy if Picasso isn’t in the mood for it. The other 2 kids are really great at understanding that this is a tough time for him and they’re great to go along with his music selections for these 2 weeks, or without music if that’s what he needs. (And sometimes he’s game to let them choose some music as well.) He sometimes chooses jazz or classical or Sunday school songs or church songs or Christmas music. In July, the overwhelming choice was the Vince Guaraldi Trio - aka, Charlie Brown Christmas music. I like listening to that, and I probably like it more than most people. But…in July? For approximately 2 hours a day? Not so much. So, wish me luck - that the musical genre choices will be a little broader this time!

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Filed Under: Sharpie art, special needs therapy

Reality Check

October 1, 2024 By Rebekah 0

We ended the week on a good note - had a huge breakthrough! Picasso had a small meltdown yesterday and made a mess out of some stuff. After removal from the situation (for safety sake), he came back to clean it up - AND, of his OWN accord, he apologized for the mess he made while he was mad, using language specific to the situation! A very notable first!

Yesterday I began working on October’s schedule, and while I listed everything out yesterday, I didn’t really give much thought to it until today. I’ve already lined up necessary childcare for October dates, but now that October’s here, the calendar is becoming our reality.

Reality: Picasso’s next therapy intensive starts in 10 days.

Reality: I’m not prepared for it.

See, we just got him through about 10 days of some tough stuff. I’m not yet prepared to go through another 10-day tough spot that will produce about a month of issues afterwards. To give some perspective, it will be close to Thanksgiving before we’re back to the projected “normalcy” of life. After the last intensive, they told us to expect about 4 weeks of emotional ups & downs following each occupational therapy intensive.

This one may be particularly tough because it’s following a lot of new things in his life: new school year, new schedule, new therapy schedule, new school set up at home, new Sunday school class, new(-ish) children’s church class, new group in the Wednesday night program at church.

He’s been asking ME for the rules in a lot of different areas. See, he knows - internally - that this is new; he knows that he can’t handle it; he knows that he needs boundaries. A HUGE thank you to those in his life that have been able to provide him with the boundaries that he’s looking for. Every kid needs boundaries and functions better with them. A kid like our guy needs them even more than a typically-developing child does. The reality is that there are rules in all of life. However, for our son, the connection between “home rules” and “school rules” and “therapy rules” gets lost. He’s not able to understand that rules for school apply to church, or that rules for therapy apply for home. That connection is just NOT there. That’s part of why he goes to therapy - to learn about social situations. The therapy for that is actually called “Social Skills Training” - he needs training to learn how to act in social situations.

I’m not trying to borrow worry from the situation that is ahead of us. However, when you have a kid who needs preparation for nearly every situation in his life, you begin to look at even the most minute deal of everyday life. Will he be ok if he doesn’t have his orange juice for breakfast? What if he is having a particularly “sensory” day: will he be able to find something to wear? Or, remember the issues surrounding that meltdown last time - how will that come back to effect the next similar situation? What if we go to the store for something he needs for a class, but we can’t find it - will that result in a tough day, or will it roll off his back and be quickly forgotten?

He looks so normal - so typical - and yet, he’s not.

And that’s what we love about him!

So while we certainly don’t try to borrow worry, we plan. We plan a lot. For example: a trip to church requires lots of planning and preparation and discussion through the week. People think we just show up and that life is dandy because Picasso looks so good. Sadly, that’s not accurate at all.

And so we begin preparation for this next intensive. We’re hopeful, but we’re also realistic. We’re not worrying, but we’re prepared. There’s uncertainty ahead, but there is peace.

Reality: We’re doing our best.