Thriving

As we come upon the 1 year anniversary of Darin exiting public school, I am so thankful for him.
This year has gradually gotten better and better. He is thriving.
Two example I want to remember and treasure in my heart are:
1. At Missio Dei, Darin has been sitting with us in the church service. Some weeks he is chaotic, some weeks he’s sleepy, some weeks are great. A short time ago, he has a very chaotic beginning to the service, wiggly, distracting, noisy, defiant. But there was a moment in the liturgy when he tuned into something he recognized. This is the great part of structure to each service. After he tuned in, he seemed contemplative and even a bit sad. He put his face in his hands. When the time for communion came, I asked if he wanted to walk with Joel and I. He got up very solemnly. We told him what the bread and wine mean, and said if he wanted to partake, he could hold his hand in front of him. He did. After getting the bread, he was too chaotic to stop at the chalice, but flew back to his seat.
As I sat back down with him, I saw myself in his struggle. The struggle to show up and quiet your body and mind. For me, it’s all internal, invisible to the other worshipers. But for him, his struggle to attend to the worship is visible. But it’s a common struggle.
After this, I have spent the difficult weeks praying for the Spirit to grant him peace and rest to join in corporate worship.
Sunday before last, Darin woke up ready to go to church. But after we all got dressed, I had a panic attack and we all stayed home for the day.
This Sunday, he was completing excited to go to church. Which can be a double-edged sword – he’s too excited to focus. Not this week. This week, he was focused from the beginning. He can’t read and we were singing new songs, but he joined in by repeating the final word/sound as we completed each line. During the responsive readings of scripture, he repeated the last word of each line. He participated in each step. When it was time for the giving, he grabbed the offering coins and ran them in the front to put in the pastor’s hand directly. Then, for communion, he focused to take the bread and dip it into the wine. The final step of our service is the small kids joining the pastor on stage to offer the benediction. I whisper to Darin, asking if he wanted to do this. He confirmed he would go, but not mom, not dad. And he did!
Seeing him worship the King is amazing.

2. He has had a cellphone of his own since his birthday in June. Mostly, he uses it to listen to Spotify. He texts random letters to me. And he calls his grandmas ALOT! A few special (and brave) friends have put their number into his phone. I’ve told them to feel free to block his number if he calls 100x in a row.
He has been calling Amanda (his babysitter who is off at Texas A&M) and our special framily member, Kaitlin, who lives in Ohio about once a week.
Kaitlin shared this with me this week:

Creating spaces

I spend a lot of time in my home.

I have a job and a business out of my home. I homeschool 2 boys. And Darin keeps me home a lot since this is the space he functions best in.

So I need this space to bring me peace and joy.

And I love making things beautiful. Building and decorating are my art outlet.

And home projects, unlike raising children, have a beginning and an end. That’s nice!

My biggest project so far has been to transform my kitchen and den area.

When we bought this house, the kitchen was builder grade stuff from the 1980’s. I hated the cabinets, so I immediately removed the cabinet doors so I didn’t have to see them.

The kitchen had weird things like this desk area (above) with a useless mini cabinet to the left.

Brown walls

And a window seat that was a little too high for anyone to sit on, so it collected junk.

Window seat

Replaced with shelves

And ugly lighting that was mismatched.

Over the sink

Mid-kitchen coordinated with over the sink

Along with white tile floor, white Formica and an outdated narrow bar behind the sink.

This kitchen is an amazing size. It’s pretty much why we bought the house, added to by the adjoining den that gives us 2 living rooms.

When people come over, it’s the central gathering spot.

But it needed to be improved.

This project started in July when I thought I had lots of time.

And then all my time disappeared when we learned about a work audit in mid-August that I needed to prep for.

So I’ve been working on it about 8 weeks.

I’m so glad to finally complete it along with some upgrade to the adjacent den.

Removed the tile floor and Formica counters. Replaced floor with vinyl plank and counters with butcher block.

Add 2 lower cabinets to replace the useless desk/mini cabinet

Build a soffit above all the cabinet to enclose the open space

Move the cabinet above the refrigerator forward so I can reach it.

Build a box for the fridge to hold upper cabinet

Cut down cabinet and install apron under mount sink

Add beadboard as wainscot & backsplash

Cut down raise bar and replace with counter height peninsula

Add bead board to cabinets ends and learn to coordinate moulding

Turn a cabinet into a trash & recycling drawer

Improve the window shelves with moulding

Paint walls in kitchen & den to match

The only thing I didn’t do myself was paint the cabinets. I didn’t want to wrestle with that much oil-based paint.

I’m so pleased with the outcome!

2008-2018

The last 10 years have been CRAZY!

Who am I kidding? The last 19 years have been CRAZY!

Here’s a little recap so I don’t forget the good, bad, ugly, and awesome:

2000 Met Joel

2001 Married Joel, birthed Bella

2002 Arabella got a feeding tube, open heart surgery, and surgery to close the feed tube hole. Went back to work, then got pregnant.

2003 Birthed Holden

2004 Went back to work, bought a little house in East End

2005 Adopted Darin, then spent 6 months & out of the hospital with him, changed jobs, while prepping to plant The Basilica Community

2006 Planted Basilica

2007 more Basilica

2008 moved to Deer Park for more Basilica, year ends with Joel’s heart attack

2009 more Basilica, then Basilica closes, move to Bellaire area

2010 Joel goes to HBU

2011 Joel goes to HBU

2012 Joel goes to HBU, year ends with interview with New Life Church in Maine

  • 2013 Joel graduates, we move to Maine mid-year
    • On the way to Maine, car catches on fire in Missouri

    2014 Joel gets injury that leads to chronic pain, move back to Texas mid-year, sell little East End house, move to Friendswood, I get my awesome job back & Joel teaches as adjunct at HBU

    2015 Joel works for Martin Marine, pain increases to unbearable at times

    2016 Joel quits working & pain intensifies

    2017 Joel in pain all the time, year ends with a surgery that finds & repairs an elusive hernia.

    2018 Starts off terrible… worse pain after surgery, then in March healing occurs; Joel able to work again by April. Then in the fall, Darin’s school drama occurs & Aug-Dec are a blur.

    In 2019, I need peace & stability!!!

    Finding Darin

    Raising Darin might be the most refining activity of my life. No other project requires me to stand apart from everyone and determine what is right so carefully.

    The past 4 years have been huge in this area. Discovering how much teachers, school, and autism understanding can affect his behavior has transformed our lives.

    It started with our amazing teacher Ms Lowe, the first teacher Darin had in Friendswood, for 2nd grade. It continued with Ms Leslie at Windsong in 4th & 5th, as well as Kyle working with Darin at home. Those 4 people figured out how Darin could learn academics, manage his behaviors, and learn to play & stay on task himself.

    This all led to a great summer 2018.

    Then came the Fall.

    Fall 2018 was a nightmare. Darin moved from Windsong to Friendswood Junior High.

    By day 2 of 6th grade, I knew his teacher, Ms Byrd, lacked all the understanding of Ms Lowe, Ms Stamper, and Ms Leslie. She was using methods tested and determined ineffective with Darin.

    By week 7, I was so concerned I had held multiple team meetings and reached out to the Special Ed Director.

    That’s when it became unbearable. Darin was trying to communicate something (all behavior is communication) and I didn’t know what. But he was regressing to disrupted behavior we hadn’t seen since 2013. He started peeing on the floor at school. He threw multiple things at our TV.

    When I entered a team meeting at school week 9, I found out he had been removed to a separate classroom without other students, and with one adult at a time. No one would nail down what day that began, but someone mentioned 3 weeks in passing…

    Coincidence? I think not. All the worst had happened in the last 3 week…

    Honestly, the stress was killing my gut. All day I dreaded the report of his day at school.

    After the meeting on 10/23, I was driving around crying. I couldn’t imagine his day in an isolated room.

    So on 10/26, I sent a recording device to hear his day. Maybe it was better than my fears. Maybe he really required reinforcements every minute to stay on task. Maybe the staff was doing all they could to manage him.

    Or maybe not.

    Over the weekend of 10/26-10/28, I listened to a recording of his day from 7:45a-2:30p.

    It started out pretty good.

    • A sweet paraeducator sat chatting with him before school started, while he listened to music on his iPad.
    • Once school started, he continued with music on the iPad for about 15 min.
    • Then a teacher came in to work on Spelling for 15 min… he was engaged, compliant, and DIDN’T get any reinforcement for 15 mins. Good job, Darin!
    • Then he got back on his iPad with music for 30 min.

    At this point, I think “wow, he is a lot more compliant during lessons than I’ve been told” and “he is using his iPad a lot”. Not criminal.

    • Then his main teacher comes in and works with him about 20 min. He’s happy and laughing, and engaged. Once again no reinforcements or special prompts were used.
  • The lesson is totally unplanned. But again not criminal, just disappointing.
    • Then he gets his iPad again… about 10:30 in the morning… after about 35 mins of instruction, and 45 mins of iPad… and HIS INSTRUCTION FOR THE DAY WAS COMPLETE.
    • He spent 2 class periods listening to his iPad music, alone with a Para, with minimal conversation and nothing offered to do.
    • Then he was taken out of the room for lunch.
    • When he returned, he was yelled at and his iPad was removed. He was passed between a para & the teacher, who both yelled at him… and the teacher told him to lay on the floor, put his noise in the corner, that he wasn’t going to be wanted by the person picking him up, that if he peed on the floor he wouldn’t get to go home.
    • So he peed. And the teacher reported that he was just laying on the floor with his iPad and he peed out of the blue.

    This was psychological manipulation, threatening of being held hostage, fear-mongering, and gas-lighting.

    This was all my worst nightmare.

    But it was also a clear understanding of what he was communicating to me by his crazy behavior in the past few weeks.

    So I told him this…

    • that I understood him
    • that I was sorry
    • that I didn’t know they were treating him this way

    And I started pointing out how I was trying to be different…

    • “I am listening and trying to help you”
    • “I am not ignoring you”
    • “I am here for you”

    The transformation was spectacular.

    He really started calming down.

    And clinging to me. If I tried to go to the gym in the evening, he wanted to go along. He barely let me out of his sign.

    But he was otherwise calm.

    Then he spread his trust to Arabella. About 2 weeks after this discovery, I really noticed this change:

    We went to Jumping Jungle, and he barely played away from Arabella & I, and eventually just sat in her lap.

    Within 2 more weeks, Darin’s whole demeanor had changed at home. We took him to visit a small church, without a special needs class to attend, and he remained with us in the service quietly for 95% of the time, only leaving to get a drink & returning quietly.

    It has now been 2 months of building trust and learning better how to really understand Darin and here is what I have concluded:

    1. I am so thankful for the 4 great years of teachers who made it easy for me to spot when things were not right.
    2. When you cannot speak up, it is so easy for someone in authority to shape the narrative about you…. it is abuse and I will fight for accountability.
    3. Listening and showing Darin I understand him has great rewards! So far, we have experienced some of the greatest holidays of our family’s life, and the difference is wonderful.

    It’s hard to be thankful for anything horrible, but I am thankful to understand Darin better and what that has led to.

    This has also led me to be super protective of him, and unwilling to take chances with his emotional safety.

    • We tried a new school, specifically for kids with autism, Children’s Oasis Education Program. After 2 days, I had seen multiple red flags that they were no more equipped than Ms Byrd.
    • In 2019, I am working on a plan for him to be taught at home by special educators and myself, and we will combine this with community activities to provide a full life of learning, support, and love.

    This is not the path I foresaw, but it is the road before me. By His grace, I will walk it in hope that He has always given me what I need for Darin.

    A lost month

    Have you ever lost a month?

    I don’t think it’s common… it’s not like a dollar that can fall out of your pocket.

    But I lost November.

    I’ve barely paid a bill, planned a holiday gift, or attended a gathering.

    Because trauma is a thief.

    Trauma stole November.

    A month ago, I found out people I trusted with my child had hurt him.

    I was paralyzed the 1st week.

    I was blinded by anger the 2nd week.

    I was patient for justice the 3rd week.

    I kept the Thanksgiving obligations the 4th week.

    And now, it’s been a month, and I’m a month behind, and still in the midst of it.

    I really hope bitterness won’t steal December.

    Regrouping

    In this day of blogs & social media, it can be unclear who the intended audience is…

    While it may be the people who have walked along side us, it is also for me. To look back and not forget.

    When Joel quit his office job in Sept 2016, he was in a lot of pain. Joining me in running STAPtx.com was a way to stop the pressure of a daily job and focus on healing.

    We never expected the pain would get worse. 2017 was a rough year. His pain made him a zombie and unable to do the contract work for Shipt that would complete our budget. It was a very hard year. I’m surprised to call it a year… I thought it was 3 years.

    With his surgery in Dec, I got my hopes too high, and I really struggled when he still had so much pain. I started feeling a sense of desperation.

    But God blessed us in several ways in February:

    1. We were able to share the short job of watching a sweet prematurely born baby during the day, since he wasn’t ready for the germs of daycare. It was a sweet time just holding him. And I think Joel & I worked well together on meeting the babies needs and taking turns.

    2. Joel’s pain lessened A LOT. We don’t know if it was a new medicine, or hydro-massage & red light therapy at Planet Fitness, or even finally recovery from surgery, or the mercy of God. Or all of them. But he started returning from zoned out land.

    So we are finally regrouping.

    What does he want to do for work after a year of living in pain?

    How do we come out of crisis mode and become a functioning household again?

    It’s such a blessing to consider these things.

    Grace and Hope

    This Sunday, Joel preached.

    It’s been a long time since I have heard him preach.

    I had forgotten how clearly he communicates the Word of God.

    It was amazing.

    He wove together several passages to redirect me to the Source of Hope, the Source of Grace.

    It’s very helpful to see a Biblical character experincing similar emotions & difficulties, and a Biblical framework for the why and how to survive.

    To hear the answer come from the mouth of my husband, the one experiencing unexplainable pain, was miraculous.