Reflecting on Ten Years Since James’s Autism Diagnosis // Ep. 47

 

Becoming a caregiver isn’t something most of us prepared for or could have anticipated. It becomes part of our identity when we hear a diagnosis for our child or spouse. Hearing the words, “We believe your son has autism” in November of 2010 changed everything for us. And I know hearing your child or spouse’s diagnosis changed so much for you. But we can get so focused on the day-to-day care, we don’t take time to look at the big picture of what God is doing in our lives as caregivers. That’s why it’s important to reflect on these big milestones like the ten-year anniversary. So today as I look back on the last ten years, I’ll share what his diagnosis process was like for us, the highs and lows since then, and some of our dreams for the future.

 

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Transcript:

Nov. 2nd episode 47

Hi friends, this is Self-Care and Soul Care for the Caregiver, and I’m your host Sandra Peoples. To us, self-care isn’t a luxury—it’s a necessity. We need to take better care of ourselves so we can care for those God has entrusted to us.

You’re listening to episode 47, and today I’m reflecting on the 10-year anniversary of James’s autism diagnosis. Becoming a caregiver isn’t something most of us prepared for or could have anticipated. It becomes part of our identity when we hear a diagnosis for our child or spouse. Hearing the words “We believe your son has autism” changed everything for us. And I know hearing your child or spouse’s diagnosis changed so much for you. But we can get so focused on the day-to-day care, we don’t take time to look at the big picture of what God is doing in our lives as caregivers. That’s why it’s important to reflect on these big milestones like the ten-year anniversary.

One phrase you’ll hear me say again and again is “remember and tell what God has done.” It’s a theme in the Old Testament and a theme in my life. Remembering and telling helps us face what’s to come because we can see that God has never failed us. So today as I remember the last ten years, I’ll tell what his diagnosis process was like for us, the highs and lows since then, and some of our dreams for the future.

Before we jump in, let me tell you what’s happening on my Patreon page this month! We’re adding new pages to the Abiding Caregiver, I’ll share the video version of my upcoming interview with Diane Dokko Kim about handling family stress at the holidays, and more. At the end of the episode I’ll share how to get all the resources available at patreon.com/sandrapeoples just for supporters!

A few days ago, as I was getting ready for this episode, I read a book I hadn’t opened on the Kindle in years. It was Speechless, the book I wrote about the first year of our lives after James’s diagnosis. I chronicled all the dr appointments, therapies, diet changes, school transitions, and what a day in the life was like for us then. I also wrote about what God was doing in my life at that time as He stripped down some idols in my life and taught me more about His presence and power. So even if the details of what happened in Nov. of 2010 and in the months following have faded from memory, I can read about them in that book. Let me share with you what happened then.

At James’s 3 year well visit I had decided to be honest with his pediatrician about the delays we saw and the concerns we had. I wrote this in Speechless: “He doesn’t talk, but he used to. He doesn’t play with other kids. He doesn’t react when his dad gets home from work. Sometimes, even though he’s in the room, it’s like he’s not really with us.” Then she checked for skill he should have had at that point: She asked him to draw a circle. He couldn’t. He couldn’t even hold the crayon. She asked him if he was a boy or a girl. He said nothing. She asked me if he could dress himself. He couldn’t, but he did love to undress himself. At the end of that appt, I thought something must really be wrong. But I still put off calling the number she gave me for an evaluation through the school system because I was scared. Finally, after a couple weeks, I made the call and set an appt.

On Nov. 16th Lee told James to do his best worst as we walked into the elementary school where James would be tested. Our prayer was that they would get an accurate picture of what he could do and not do. We met with a speech therapist, occupational therapist, and psychologist. After an hour of playing with James and asking us questions, they left the room. When they returned, the psychiatrist sat down with us while the SLP and OT went back to playing with James. She said, “Based on his testing today and our observations, we believe James has autism.” And with that, our lives changed.

I’ve told lots of parents over the years since then how helpful diagnoses are. Getting a diagnosis leads to other steps that are helpful. But it can also be scary. And an autism diagnosis especially because you don’t know what life will look like for your family with that diagnosis. Every autistic person is so different. And at that point, the diagnosis didn’t include levels 1, 2, and 3 like it does now. So we didn’t know what our lives would look like after that point.

But it’s been 10 years since that diagnosis day, and there have certainly been highs and lows. Let’s start with the lows because understanding how hard it has been at times helps me be even more thankful for the easier times.

Lows:

  • Feeling excluded by friends – that started early and continues now.
  • The family moving away from us at Bojangles – years ago on a road trip James was making noise when we stopped for lunch and a couple moved away from us. I’ve talked about this before, but that situation has held me back from so much. And I’m still working to overcome it.
  • One hard school year that included a visit from CPS – I don’t think I’ve talked about this before. I’ll tell you the short version of the story. In our first year of living in Texas, James was coming home from school with blood in the back of his undies. I tried to ignore it for a while, but it was happening almost every day. We started to fear sexual abuse. We talked to a friend who called CPS because he was a mandated reporter. The next time he came home with blood in his undies, we took him to a pediatric ER for an examination with a sexual assault nurse. They were required to report it to the police, so we talked to them too. The nurse determined that James had diaper rash that was being wiped too roughly at school and that’s what was bleeding. We were happy that was the result and it could be easily fixed, but James’s teacher and the team at school did not respond well. They ended up calling CPS on us claiming that his diaper rash was due to our negligence. As nice as the CPS workers were, it’s still really stressful to experience. I was really thankful when James was transferred to a new school the next year.
  • And the anxiety that came up this year at the beginning of the pandemic – if you’ve been listening to the podcast this year, you walked through this with us. It was a worst-case scenario for James and for us. But we found a good psychiatrist who has been a huge help and James is doing better.

Highs:

  • Each time James says a new word – there’s nothing like it! Hearing him say a word we’ve never heard before or put together a new sentence is a huge win! In the last year he’s worked on being able to say our names, my phone number, and our address. We’re so proud each time he’s able to express himself or learn something new that could help keep him safe.
  • Potty training progress – this goes along with one of our biggest prayer requests for him: that his tummy wouldn’t hurt. Last year he overcame a lot of his chronic constipation, and earlier this summer he stopped wearing pull ups at night. Like just decided he was done and has never had an accident since! There are still more independent steps he can take, but these were huge accomplishments.
  • Every other school year besides that one hard year – truly, every other year has been great! We’ve had good teachers and support staff. Each one has helped him grow and learn in different ways. We can tell that they care for James and enjoy him, not just tolerate him. And that is a huge blessing to us!
  • The circle of support that has existed and continues to change based on his progress and needs – reading back over Speechless reminded me of all the therapists and helpers we had in those early days. And I can name people God has brought into our lives every year since then. There are times we’ve felt lonely and that we weren’t getting the help we were so desperate for, but God is faithful.

Reflecting on the past makes us also look ahead to the future. With the boys both having birthdays recently, we are thinking what life will look like for our family in the coming years. Our older son David, who turned 15 recently, is a guest on this week’s episode of Rising Above Ministries’ podcast. During the interview, Becky asked David a question about his future that we hadn’t even asked him yet. And his answer surprised us. (I won’t give it away, so you’ll have to listen to hear what he said! The episode releases Nov. 2nd.) That discussion led us to ask questions like, “What can we do now to help James be more independent in the future and what supports will our family need over the next few years?”

The potty-training gains have been huge for James and for us and have reminded us that he is still making progress! Next we hope to help transition him to taking showers and being more independent with his self-care routines including picking out his own clothes. He may also be able to do more in the kitchen, getting his own snacks and using the microwave and toaster oven with supervision. On Instagram last week I shared that I need to widen our circle of helpers so I don’t always have to rely on my parents and David. That will mean working on some of James’s communication skills, like answering yes and no to a bigger variety of questions. We usually understand what he means most of the time, but someone outside of our family wouldn’t know. And that could lead to anxiety and stress for James. As I continue to think of goals for James’s future, I’ll reverse engineer them and break them down into small steps so we can take each one at a time.

Taking time to reflect on the last ten years reminds me that no matter what we face in the future, we can trust God to guide us and show us of His love each and every day. I think of Proverbs 16:9 that says, “The heart of man plans his way, but the Lord establishes his steps.” So even as I plan and dream, I pray God establishes the steps we will take and guides us as we make decisions!

Thanks for spending this time with me today as I reflected on the ten years since James’s autism diagnosis. I’m kinda surprised I got through it without crying, honestly! But knowing you have your own stories of life since getting a diagnosis, stories of ups and downs, keeps me encouraged.

Let me wrap up our time together in prayer like we do each week:

God, ten years ago I called a family friend and shared the news of James’s diagnosis. She shared a verse that has encouraged me each season since that time: Psalm 125:6, “Those who sow in tears shall reap with shouts of joy!” Over the last ten years there have been tears and shouts of joy. And You have been there for them all. Thank You for your presence in our lives. You are Emanuel, God with us. I wake up with that promise on my mind every morning and fall asleep to it every night. And when it gets hard, like really hard, I’m reminded of Jesus’s question to His disciples in John 6, “Do you want to go away as well?” My answer echoes Peter’s “Lord, to whom shall we go? You have the words of eternal life, and we have believed, and have come to know, that you are the Holy One of God.” I have believed and come to know. Thank You for Your faithfulness to our family. In Jesus’s name, amen.

Now let me tell you more about what’s available on Patreon.com/SandraPeoples. Patreon is a site that lets you become a patron of content creators who are doing work you appreciate. There’s a saying I’m often reminded of: the content is free, but it isn’t cheap. Patreon is a way to financially support me for the work I do, and as a thank you from me, you get bonus content just for Patreon supporters, like the Abiding Caregiver Planner pages! This month’s pages include printables for planning Thanksgiving and Christmas! The levels of support include $5, $9, or $75 a month. You can read more about it at Patreon.com/SandraPeoples and sign up today if you’re interested!

Thank you as always for listening and sharing this episode with your friends! I’m praying for you this week as you fulfill your calling as an abiding caregiver!

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