Category Archives: My children

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.

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    Feeling stupid not generalizing

    So this week, I had 2 typical experiences in new settings in close enough time, that they shined light on each other….

    1. Darin went to day camp and got in lots of trouble the 1st day. Then I figured out he didn’t have 1-on-1 support, that was added, and he was able to continue with daycamp.
    2. We tried putting Darin in a class at church, so we could listen to the sermon, and he lasted 10 mins… and Joel missed the rest of the service sitting in the hall with him.

    And it clicked for me:
    Church is the only setting where we try to put him in a class without 1-on-1 support, pretending in that setting he is typical.
    We don’t do it at school, or day camp, or VBS.
    But week after week, we are shocked it goes terrible at church.

    Unfortunately, this realization was not accompanied by a solution.

    Interestingly, the sermon at the church we visited today was about Act 6:1-13, where the 1st church had to address unmet needs within the church.

    I wish this didn’t feel like a unique need that not everyone shares. I don’t want to be the one with the need.

    What are other special needs kids doing within small churches?

    Our adoption stories

    Here are the stories of our adoption:

    1. When Darin joined our family
    2. Making adjustments for Darin
    3. Ode to Darin’s birth mother
    4. Missing Darin’s birth mother

    Adoption in movies

    One of my favorite thing in movies is seeing adoption as a subplot, not the focus.

    I appreciate this since it normalizes adoption, decreasing the stigma that family is blood and adoption is weird.

    Some of my favorites are:

    But I recently saw a Facebook post by my friend Nancy that added another perspective to the adoption movie conversation:
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    At first, I was confused. I also have an adopted child, and love Despicable Me.

    But then I thought about Hannah’s experience of being in a orphanage.

    I realized that while I love that society can see adoption stories in movie, parts of the stories may be too close to home for a child joining a new family.

    Always good to gain perspective!

    Relief in a realization

    The special needs community’s perspective toward education is pretty unique. There is an ENORMOUS amount of pressure to be a legal guru in order to convince the local public school system to educate your child as well as possible. Many time, the same families who send all their typical children to private school invest tons of energy into mastering the public school.

    Yesterday, I attended a conference where many of the breakout sessions focused on convincing your school to allow your child with a disability to be “included” in general public education.

    I felt the familiar self-doubt creeping in:

    Why am I not trying harder to win this fight to have Arabella & Darin get a free, appropriate public education? Why do I feel so much more comfortable with my children in private (even though non-inclusive) schools?

    And then I felt relief, as I have so often recently, as I remembered something from Carole Joy Seid‘s seminar. I’m not sure how to repeat her whole thought, but basically it was that historically, public school was not the preferred choice – it was for those who had no other choice. Those with choices had governesses or mom’s as their one-on-one teacher.

    I realize why I don’t wanna train & join this fight: I don’t believe MY children should be educated by the government.

    And it’s a relief for me to realized this & quit feeling like a wimp.

    I hope this doesn’t come off as judgement on anyone. This relates to my parenting of my children.

    I am in the process of bringing all my actions into alignment with my values. I’m sure you are in the same process.

    “Hours” in your main job = mothering

    I’ve been a working-outside-the-home mom for most of my mothering years. Each of my kids was blessed to go to the best preschool, The Rise School of Houston, at 1 year old, & I could go to work while they were there 8:30-2:30.

    Paying jobs require a certain “commitment”. If it’s an hourly job, it’s a set of hours to receive pay. If it’s a project-based job, like my business Adaptive Communication Devices, it’s setting aside time to do whatever is due this week.

    Mothering seems to have a much more “flexible” commitment. It’s harder to measure if you get more return on your investment (the lives of your kids) if you put in 40 hours of dishes, or skip it all to read a book… It’s an endless project without a due date, and you aren’t told exactly how your “compensation” will be adjusted for each neglected or added task

    So, honestly, I’ve never been near as good at, or faithful to do my mothering as I am my case management job or my business.
    I never settled on a list of tasks to hold myself to.

    Then I decided to homeschool Holden. And I have a mark to exceed: the education he was receiving at Veritas. I didn’t keep him home to save money or waste his time. I kept him home to shape him, to teach him in specialized way designed for him.

    This has been so GOOD for my mothering overall. It has given me a standard for what I do with him. And since I love all 3 kids, it’s given me a standard for Arabella & Darin, too.

    Sometimes it’s hard to not do all I want with Redeemed or meet up with friends like I had the freedom to during the day. But it definitely feels like this is a job I can do well if I make a commitment to do the tasks I know are needed each week.

    God is good.

    This week, Arabella, my first born child, has spent the week in Texas Children’s Hospital (TCH). Our bulldog’s crazy sticking out tooth went into her finger, causing an infection.20130221-141608.jpg20130221-141625.jpg

    Hospital-time leads to reflection.

    • For Arabella specifically, TCH is the place she came on her second day outside my womb, and remained for 25 days trying to learn to eat while her heart ran a marathon.
      Then she returned for a feeding tube to be placed (and replaced) at 3 months old.
      She had her heart repaired by the cardiovascular surgeons there at 6 months old.

      And here she is, 11 yrs old, and healthy for 9 yrs!
      That’s something to celebrate!

    • Regarding healthcare: this finger thing didn’t look like a big deal… Redness, puffiness, but not a lot else. But the doctors at both our Pediatricians office & in the ER know that hands can progress in bad ways, so they are fighting vigorously, aggressively, for the health of Arabella’s hand.
      That’s something to appreciate!
    • Regarding life: while it might seem inconvenient to sleep away from home, it’s a blessing to have 1-on-1 time with my daughter. Thankfully, my job is mega-flexible, my husband is super helpful, and my sons are compassionate & understanding.
      Those are all blessings.

    It seems like “bumps” in life are good times to pay attention, be more alert to how life is really going.

    I can see God’s blessings raining down on me!

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    How about you?