This is a story about advocacy. About trusting your instincts. About motherhood.
When faced with a challenge in my personal or professional life, I will figure it out and I will “get sh*t done” (that’s a direct quote from my boss). It’s the project manager in me. Sometimes that challenge is something seemingly minor, like moving up a deadline. Other times that challenge is something much larger, like addressing a developmental issue with my youngest daughter.
When my daughter, Savannah, was 12 months old, I started to have some concerns about her communication development. She wasn’t pointing (typically starts between 10 and 15 months) and wasn’t waving (typically starts around 9 months). She wasn’t even saying “mama,” one of a child's most common first words. Thinking those were things that she just hadn’t caught on to yet, I didn’t bring up any concerns with her doctor. I put more effort at home showing her how to point and wave.
Waving eventually caught, but pointing did not. I brought up my concern at her 15-month appointment with our pediatrician and was told not to worry about it and that she would eventually catch on. I took the advice of the doctor and continued to work on pointing at home. We tried using more pointing gestures in our daily life, hoping to get her pointing as well, but it just wasn’t happening. She mostly communicated her needs and wants by approaching her dad or me, grabbing one of our hands and leading us to the thing she was looking for, whether that was a snack (beeline to the pantry) or a drink (a different path, this time to the fridge). Instead of pointing with her index finger, like most toddlers her age would be doing, she primarily just reached for things with her whole hand or got things herself. She was and is very tall for her age and loves to climb, so being independent was no issue for her.
As the weeks went on, my concern grew. I reflected back on my oldest daughter’s development in her earlier years and clearly remember her talking significantly more at the same age. In the days leading up to Savannah’s 18-month check-up, I searched what milestones she should have hit by this age, which skyrocketed my worries. A milestone is defined as something that 90% of children the same age have achieved. By 18-months old, a child should definitely be pointing with their index finger to communicate their needs and speaking at least 6-20 words. Savannah was only saying 4 words. This, in combination with her not pointing, confirmed my concerns that she was delayed in her communication development.
Knowing that both my husband and I had brothers who had to undergo speech therapy when they were younger, I understood I would need to look into it more deeply. At her 18-month appointment, I brought up my concerns with the doctor. He reviewed the Modified Checklist for Autism in Toddlers (M-CHAT) screener I filled out and did her check-up (speech delays are a common early indicator of autism spectrum disorder). At the end of the appointment, he said that since her M-CHAT looked clear and she was otherwise developing typically, that I needn’t worry about it.
I left the appointment feeling defeated. I started to question myself—was I overreacting? Should I be as concerned as I am? Maybe I am overthinking this. All kids develop differently after all. But I couldn’t shake the feeling.
After a couple of days, I called my pediatrician's office and asked what I should do to get Savannah into speech therapy. The office clerk said she’d speak with the doctor and call me back. Shortly after she called me back and asked me three questions—I can’t even remember what they were, just that they were focused on what she could/couldn’t do communication-wise. I responded yes twice and no once. She said she’d talk to the doctor and call me back.
“Based on what we know,” she said, “we won’t refer to speech therapy at this time. We’ll wait six months and see—or you can seek out a speech therapist on your own.”
From everything I had learned so far in my research, the earlier you get your child help, the better the outcomes. So, I vowed there would be no waiting. I went into advocacy mode and dove into looking for a speech therapist through our insurance. It was easier said than done. There really weren’t many options. I was able to narrow my search down to three places, none of which were realistic. The first was nearly an hour and a half away, the second was a school I’d have to enroll her in and pull her out of her current school, and the third was solely focused on children with ASD. I felt crushed. I wanted so badly to help my daughter, but felt like no one else wanted to.
At this point I had one last option, contact my state’s Early Intervention program, an option I’d learned about through my research (and frequently plugged in speech therapists’ TikToks). I filled out the form online and waited for a response. EI reached out and we got our first call scheduled, a moment of further anticipation as I feared we may be approaching another dead end. I explained the situation and why I was seeking intervention services for Savannah. From there we got her evaluation for services scheduled.
Their call a week later was a moment I had been waiting months for. They let me know that my hunch was right: Savannah was behind in communication. And she qualified for services. It was a wave of relief to finally have my concerns validated. I knew something was off, but no one believed me. After finding out she did qualify for services though EI, her official IFSP (Individualized Family Service Plan) was set up and we were assigned a development specialist. We started out with eight sessions with the DS over six months.
To her, sessions are play time, where her mom and dad sit together with a specialist and do things like speak on behalf of our toys or be extra descriptive and out-loud about the things we’re doing (“and now we’ll brush our teeth!”). Since then, her speech has exploded. And best believe, I was tracking every word. I kept a running list in my phone, keeping the next milestone in my head at all times. By two years old, children should be able to say 100-200 words and be able to put two words together. I stopped keeping track when she hit 100 words. And that happened before her second birthday! She also called me mommy for the first time ever just a couple of weeks before her second birthday. I was over the moon excited! We still have a ways to go, but she is improving her speech every day.
“Trust the process,” in this case, proved to be unwise advice. Yes, systems are there to help us, and often do. But navigating those systems well means being an alert and empowered advocate for yourself and your family. As I said in the beginning, when faced with a challenge, I will get sh*t done. And as a parent, you are your child’s biggest advocate. I will always fight for mine.
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