“Our story began when our then-only child, Jackson, had just gone to his 18-month wellness visit and a random pediatrician told me he was ‘severely behind’ because he wasn’t speaking words. At the time, I thought J was saying ‘Momma’ and ‘Dada’ but in retrospect and also raising a neurotypical kid that clearly says words before he’s 2, I know Jackson was not.
I’ve read when parents learn their child may have a learning disability, usually one had a gut feeling about it and the other is in denial. I was the one in denial. My nearly 30-weeks pregnant, hormonal self was convinced the pediatrician had the sh*ttiest bedside manner in his delivery and there wasn’t anything ‘wrong’ with my son.
That Jackson just needed to be around more kids his age.
That we needed to be watching fewer movies.
That we needed to be doing more hands-on activities.
That I hadn’t failed him as a parent.
A week later, we moved across the country and against my better instinct but for my husband’s wishes, I got Jackson evaluated by the state. The examiner told me she was going to ask me a series of questions and ask Jackson to perform a few things. I wasn’t allowed to say anything to Jackson or encourage him to do anything. I was basically like a fly in the room. When she started asking Jackson to do things, I knew in my gut he wasn’t going to do a damn thing. And I was right.
I started sobbing asking, ‘Is it normal to be nervous for him?’ In one movement, she handed me tissues and said, ‘Remember why you brought him here. You’re taking this great step forward for your child and your family to better everyone. If he needs therapy, we see it now and get him started. Even if it’s nothing, you’re taking the steps required to follow through and rule out. There is no need to worry about the results whatever they are. I understand people bring their kids to us to try to better them but also expecting someone to tell you what’s ‘wrong’ with your kid and that’s not what we want to do.’ I knew this already going in but I absolutely needed to hear it again now.
At the end of the evaluation, she asked three questions that are routine for an Autism At-Risk screening. The one that triggered the knots in my stomach was ‘Does he respond to his name?’ And the honest answer was and still is no.
My husband was on the other side of the country while all this was happening so having to call him that evening with this information was nothing short of hard. Matt already had inklings something was off about Jackson because he’s the reader of our family and in educating himself, he read that 18-month-olds should be speaking a certain amount of words at this point. Jackson clearly wasn’t. No parent wants to be right about something like this, so for Jackson to not only be accepted into BabyNet but also be referred to an autism specialist soon after gave us mixed feelings.
Because I was the one going to all the appointments, talking to the specialists, and answering all the evaluations, my mourning period was rather short. I had to constantly revisit my firstborn was very different than we had envisioned all this time. I had to constantly answer questions in the most direct way possible, which made it blatantly clear where Jackson fell on the spectrum. Questions like ‘does he stack blocks? Does he mimic? Does he make eye contact?’ weren’t open to interpretation. I couldn’t answer ‘sometimes yes.’ It was YES or NO to help get results faster. I quickly learned answering No to nearly every question didn’t mean I had failed him. It meant I was giving Jackson the chance.
Initially, I believe I was in denial because I felt a diagnosis was an attack on my parenting. Back in the day, I would have been called a ‘refrigerator Mom,’ meaning I was cold-hearted and had ‘thawed out’ long enough to reproduce, then show my child no love, resulting in the child having Autism. Gross, right? But I learned to remove myself from the process. This wasn’t about me in the slightest.
This was about Jackson. It had always and will always be about Jackson.
After getting J’s At-Risk diagnosis a couple of months after the initial evaluation, Matt and I started to really have the hard conversations. The vulnerable ones that make you feel uncomfortable. That make you examine yourself, your stance on topics, and why. The conversation about how our future raising kids was about to be flipped on its head. We were placed on a waiting list that would have been at least 6 months long of waiting to just be seen by a psychologist at MUSC. I refused to wait that long so I found a private practice that would see Jackson and by the time he turned 22 months, just 4 months after our initial screening, Jackson was diagnosed with moderate-to-severe Autism with a speech delay and sensory processing disorder.
You would think getting the actual diagnosis would have been the tipping point but it actually brought us relief. We knew Jackson would be diagnosed once he received the At-Risk so we were mentally prepared for it. The odd thing about receiving a diagnosis is it’s required in order for Jackson to get insurance covered therapy. He literally needs the label of Autism Spectrum Disorder to get the assistance he needs so it’s kind of messes with your head. You want your kid to have ASD to get therapy but don’t want the label.
Weird headspace but these were the rules.
It’s nearly been 2 years since we got Jackson’s diagnosis and we’ve learned SO much. Our parenting styles have changed. We’ve added two more kids to the mix (continuing to have children after one received a Special Needs diagnosis was not an issue for us). Jackson has been in Applied Behavior Analysis therapy, Occupational therapy, and Speech therapy for almost 2 years. He’s had some breakthroughs — loves to sing, gets his proprioceptive feedback from his mini trampoline, uses a utensil, and can communicate two phrases on his communication board by pointing to them. But he’s also at a standstill with other things — still non-verbal, not potty trained (we’ve tried three times), has developed some auditory sensitivities, and has no responsive language.
To the parents out there looking for the next steps, hope, or just another parent in this new isolating world: this is not your fault. This is not anyone’s fault. Our kids are different, not less. Early intervention is key to getting them the proper assistance they need. It’s a learning opportunity for everyone involved so don’t fight it!
Getting outside help doesn’t mean you failed as their parent. Getting outside help means you love your kid enough to admit it and get it. Your kid doesn’t need to be fixed or is broken in any way. You just need a new manual.”
This story was submitted to Love What Matters by Jessie Lipscomb. You can follow their journey on Instagram and their blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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