Our Journey on the Spectrum: What I Wish I Had Known

In January of 2017, my amazing, curious, energetic, & intelligent son, Jamar Calvin, was diagnosed with Autism Spectrum Disorder (ASD). After two years of meltdowns, teacher conferences, doctor visits, and missed diagnoses we finally had an answer–autism. That’s what we had been fighting to understand this whole time. That’s what made our son so unique in how he sees and experiences the world. FINALLY we knew what we were up against. But this was only the beginning.

My son’s life has been anything but predictable. We was born 2 months early, because he was so tangled in his umbilical cord that our Perinatologist felt there was risk of him being stillborn if we didn’t deliver early. He spent 28 days in the NICU before coming home. But he hit many of his developmental milestones (adjusted by 2 months). He sat up on time, started crawling, and walking when we expected he would. But he had a hard time adjusting to new environments, he was sensitive to loud sounds, and he had a really difficult time accepting change would led to EPIC meltdowns. When he turned 2, he was saying less than 20 words (the average is at least 50), so our pediatrician recommended speech therapy. We started immediately.

We had been blessed to have him in an amazing in-home, licensed daycare owned by our now dear friends Dawn and David Galloway. Dawn (who is trained in early childhood education) recommended we consider having Jamar evaluated for PPCD (Preschool Programs for Children with Disabilities).

I was adamantly against that. “My son does not have a disability!”

I know how our system works and once you label a kid, they get stuck with that label. I didn’t want that for Jamar–not if we could avoid it. But after some prayer and talking it over with my husband, we decided to have him evaluated.

Jamar qualified for PPCD because of his speech delay and because, based on the initial evaluation and our concerns, they suspected he might have autism. He started PPCD the Spring on 2015 and it was great! The support he received from our local elementary school was amazing. But around the same time we also started him in a new daycare and everyday was a challenge. I was constantly being called to come pick him up because he was “too much to handle.” After a few months, we decided we needed to find out if our “suspicion” of autism was more than just a suspicion.

We took him to one of the few pediatric neurologists in our area who specialists in autism and is covered by our insurance.  This doctor spent 30 minutes with us. 30 MINUTES! During which time he talked briefly with my husband and I, interacted with Jamar for maybe 10 minutes, scribbled some notes on a piece of paper and told us Jamar only met 3 of the 4 requirements for autism so he didn’t feel comfortable giving him that diagnosis.

SIDE NOTE: The 4th criteria Jamar didn’t meet was avoiding social interaction–anyone who knows my son knows that he LOVES people. But he has social challenges. He avoids eye contact, doesn’t always pick up on basic social cues and he has unsafe boundaries with strangers (by “unsafe” I mean he talks to and tries to hug everyone–from the cashier at Home Depot to the panhandler just outside his window while we’re sitting at an interaction). So because Jamar was able to interact and engage with the doctor during the 10 minutes he visited with him, the doctor didn’t pick up on any of those challenges.

He sent us away–with no diagnosis and no explanation as to why my 4-year-old was having such a difficult time following social norms, adjusting to changes, having extreme meltdowns 2-3 times a week, and nearly getting kicked out of daycare (I almost cussed out his teacher on at least 3 occasions, but thankfully the Holy Spirit held my tongue #JesusTakeTheWheel #ThankYouLordForSavingMeFromMyself).

So we went another year, still not knowing how to help him.

When we met with the special education coordinator for his annual review, we decided to request an official evaluation for autism through our school district. They were VERY thorough. The diagnostician spent two hours with my husband and I, as well as, his teachers to evaluate his behaviors, social skills, and academic skills based on our observations. THEN she spent several hours observing Jamar herself in different environments including, in his PPCD class, at daycare, and in the playroom at her office. After two weeks, she had a 20+ page report on him! She spent an hour walking through every page of the report with my husband and I and at the end she said, “based on this evaluation, I can confidently say Jamar is on the autism spectrum and will be able to continue receiving support through special education.”

This diagnosis sent me into a research frenzy. I scoured scholarly articles online and spent hours in my local library pouring over books on autism. There is SO. MUCH. INFORMATION. And it was sooooo overwhelming. But my research told me that Jamar needed ABA therapy which stands for Applied Behavior Analysis. The goal of ABA therapy is to help children with autism increase helpful behaviors (things like: following instructions, responding when asked questions, making eye contact) and decrease unhelpful behaviors (for example: meltdowns, eloping, physical aggression). So we spoke with and visited several therapy centers.

For Jamar, we knew he needed help adjusting to change and transitioning from one activity/environment to a new activity/environment. After 3 months of therapy, he was improving by leaps and bounds. When he returned to school that next Fall his Special Education teacher said, “It’s like he’s a whole new kid!” He was now able to walk safely in the hallway with his peers, he was engaging in class and participating in activities, and he wasn’t having meltdowns. Our ABA therapy center (Cultivate Behavioral Health & Education) provides ongoing parent trainings, support with his teachers at school and at his after school program, and his ABA therapist also supported us at Jamar’s last Annual ARD* meeting where we determined the learning goals for his IEP**.

Jamar has been doing great and exceeding all our expectations. We’re so thankful for all the support we’ve received from his teachers, the staff at his school and his therapy team. This journey has had many ups and downs, twists and turns and there have been many tears along the way (mostly mine ❤ 🙂 ).

If you’re walking through this journey too, I want to encourage you to persevere, fight for what your child needs, and don’t give up. You CAN figure this out and there is a whole community of parents with special needs children who you can call on for support. Here are a few things I wish I had known when we started this journey and resources we found along the way that were game changers.

  1. Don’t be afraid to get a SECOND OPINION. Or a third…or a fourth if needed. I wish I had followed my instincts and taken Jamar somewhere else after meeting with the first neurologist. If you don’t think you’re getting adequate care or feel your concerns are being ignored, find support somewhere else.
  2. Connect with other parents on social media. There are tons of parent support groups on Facebook. We’re in one called Austin Special Needs. This is the place I have gone for advice and encouragement over the past two years. Even when I don’t have something to share I hop on there and read an encouraging story from another parent and it inspires me to keep going.
  3. Learn the system. It’s no secret…our education system in this country is broken. Navigating it can be a nightmare, but STAY WITH IT. I’ve done so much research and talked to so many educators to try and understand how to get the services and support we need. There’s also a great organization called Disability Rights Texas that has a ton of helpful information and resources.
  4. Look for inspiration and success stories. Not long after I started researching autism I came across two resources that completely changed my perspective autism and what Jamar was capable of:
    • The first was an HBO original film on the life of Temple Grandin, an autistic woman who’s become one of the top scientists in the humane livestock handling industry. Watching her story and hearing how she explains the unique way her mind processes information was so inspiring. I was also encouraged by her success–she has a PhD and has written EIGHT books!
    • The second thing that changed the way I see and understand autism is a book called “The Reason I Jump: The Inner voice of a Thirteen-Year-Old Boy with Autism.” This book is written in Q & A format by a young man with autism named Naoki Higashida. In the book, he addresses several behaviors we’ve seen in Jamar (like jumping, laughing unprompted, and repetitive behaviors) and gives an insider’s look at what’s prompting these behaviors. This book gave me an entirely new view of my son and a clearer understanding of how he sees and experiences the world around him. Reading it felt like someone unlocked the mystery–it was MIND. BLOWING. If your child (or anyone you know) has autism this book is a MUST READ.
  5. Share what you learn with your support system. Overtime we’ve shared a lot with our friends and family about what we’ve learned and how to best support Jamar. If I had it to do all over again I would have shared more and sooner. One of the biggest challenges I’ve personally struggled with is people’s judgement. When they don’t understand that Jamar has autism and the unique challenges he faces, they see his behavior and assume he’s a bad, spoiled kid and we’re bad parents. I know in my heart that neither of those things is true, but when you feel those judgements (especially from family and friends) it stings. Sharing with them might not change everyone’s mind, but I’ve found that the more we share the more support we receive.
  6. DON’T BEAT YOURSELF UP! Let me repeat that–DO. NOT. BEAT. YOURSELF. UP. You did not cause your child to have autism. Parenting is hard even when a child does’t have special needs. None of us really know what we’re doing. You are going to have bad days…days when you cry, days when you yell, days when you feel like you’re losing your ever-lovin’ mind trying to cope and deal with your child. Hear me when I say–we all go through this. You are not alone…we all have rough days. Tomorrow is a fresh start. I can’t tell y’all how many days I’ve gone to bed crying because I lost my temper and yelled at Jamar for something he may not have been able to control all because I was tired and worn out. It’s happened–multiple times. But I have slowly learned to give myself more grace. I apologize to him when I’m short-tempted and love on him and we both agree to try and do better the next day.

(*Heavy Sigh*) I know that was a lot. But my hope and prayer is that someone will read this post and be encouraged in their own journey or have more compassion for those experiencing a journey like ours. If you find this helpful, please, please, please pass it along. I wish I would have seen more stories of other people’s journeys and successes when we first began. Thank you all so much for reading and please ask me any questions you have in the comments.

~Blessings!

*ARD=Admission, Review and Dismissal                      **IEP=Individual Education Program

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