A few posts ago I spoke a lot about being knowledgeable and advocating for your child and that’s exactly what the last few weeks have been about. With the help of a former co-worker and friend I was put on the path to endless resources and it was such a relief, what started out as her sending me a DM telling me how she enjoyed the blog ended up being a conversation that changed our lives.
Just hours after getting a name and number, I was calling the referral line for Early Steps the federal agency offers FREE developmental services for children from birth to 3 years old. With Caleb being 2 years and 7 months, we wouldn’t be in the program long but right away we were assigned a social worker who called ready immediately to set up our in home visit.
Less than a week later she was on my couch giving me piles of information, resources, and hugging on Caleb. She was like an angel from heaven, literally I couldn’t believe all of the things that were available to us. It a little frustrating knowing that we could’ve received assistance months ago but I didn’t have time to focus on that now.
Our initial assessment with the early steps program here in FL was on the morning of my actual birthday and when our service coordinator called to tell me the appointment date and time she said, “What a great gift for your birthday! A team of people all focused on getting your son the help and resources he needs.” I hadn’t thought about it like until then. I’d finally be getting the help we’d been waiting for and maybe some answers in the form of a diagnosis.
Oh and did I mention that this was all FREE?? And when I say FREE I mean FREE, like SUPER FREE! They don’t care if or what insurance you have, they don’t care what your income is, the only thing you need to have when you call to get an appointment is concern for a child. Step 2 is where they assess what exactly they can help you with and that’s where we were. While Caleb got to play, Mama and Gemma answered a load of questions. Lucky for me I had started blogging so my brain was fresh with stuff from way back that I was able to share about baby boy from birth until now. They mostly observed Caleb play, he engaged a little with a speech therapist but other than that all eyes were on him. There were four professionals in the room, including his social worker but everyone was very relaxed which was relaxing for both and me Caleb. The speech therapist and the other person on the team got down on the floor with Caleb, he engaged them and showed no signs of being uncomfortable. Before we knew it 2 hours had passed.
At the end of the two hours we were enrolled in the program with a recommendation for an occupational therapist and an early interventionist who would come out to our home once a week (for each) to “play” with Caleb and give Gemma and I tips on how improve in some of our problem areas, specifically eating/feeding, behavioral concerns, and how to cut back on the iPad (eek!). This was all good stuff, yet a small part of me kept feeling like I had failed at being a mom and now people had to come in a save me. I knew it was just that damn “mom guilt” so I didn’t allow myself to sit in it. I didn’t have the time or the energy, that was all reserved for Caleb.
Before we left we were asked if we wanted to schedule an appointment for an ADOS assessment. That’s the assessment that determines whether your child is diagnosed with autism. Based on an initial screening they felt like Caleb could benefit from being seen. He scored right on the border of low/medium risk of having autism and you guys already know I needed to have confirmation one way or another. This is the appointment I had been waiting for, the one with the waiting list until May. It turns out that the appointment in May wouldn’t have even resulted in a diagnosis. Only a neurologist and a psychologist could diagnose Autism and my appointment was with a developmental pediatrician, I would’ve waited 6 months and we wouldn’t have been any closer to answers had I not found Early Steps. Anyway, I scheduled the appointment for the ADOS and we were just 3 weeks away from answers.
The thing everyone told me NOT to focus on was less than a month away and to say I was overwhelmed was an understatement.