March 2021 marks one year. One year of following my gut. One year of meetings. One year of multiple evaluations. One year of countless appointments. One year of advocating for my son. All during the beginning of a global pandemic, of course!
Let’s rewind for a moment.
At his 14 month appointment (January 2019), I had concerns with his leg. One foot went inward, and he always tripped over his own feet. He constantly had bruises on his legs from falling all the time. I mentioned my concern to his pediatrician. I was told, “he’ll grow out of it.” At his 24 month appointment (October 2019), same conversation. Again, I was told, “he’ll grow out of it.”
At 27 months (January 2020), my son failed two hearing tests. We saw an ENT (ear, nose, and throat doctor). I was told everything looked fine, so he probably just has my deaf gene. Let’s do another hearing test and appointment in a few months.
I’m deaf and hearing impaired myself, with a cochlear implant. My father is deaf with two cochlear implants. My sister is deaf and hearing impaired, with a cochlear implant. That’s just my immediate family. I know my family history. I know the genetics behind my family history. I know this meant, for my son- rapid hearing loss at a young age.
I couldn’t just sit back and ride it out. I couldn’t just wait while everything potentially got worse. I also couldn’t be in denial. I couldn’t hope everything would be okay. I had to take action for my son.
So, what did I do?
I didn’t wait for a doctor to refer my son for services and therapies. I self-referred my son to First Steps. First Steps provides services to families and children from birth to age 3. I soon realized how many families either (1) don’t know about First Steps or (2) are unaware that they can self-refer their own child.
What did our process look like?
1. The referral application was easy. I went on their website and completed a few questions.
2. Within a few days, I was contacted by a Family Service Coordinator. We had a lengthy discussion about our concerns. We determined the need to have a language evaluation and a physical therapy evaluation. Now, I referred him for the hearing loss, but also expressed my concern with his gross motor skills at that time.
3. I signed a few consent forms.
4. Next, I was contacted by both a local Deaf School of my choice for the language evaluation and a local First Steps physical therapist.
5. Evaluations were done on my son. Due to the timing and covid shutdowns, these evaluations were virtual.
6. Once evaluations were completed, we scheduled and held an IFSP (Individualized Family Service Plan) meeting. Since my son was turning three in about five months, a representative from our school district attended to discuss transitioning into the Early Childhood Program.
7. Once the IFSP was created, services began!
What did First Step provide for us?
We received weekly language therapy from St. Joseph Institute for the Deaf, monthly hearing tests to monitor his hearing, monthly physical therapy at our home, saw an orthopedic doctor, and we ordered SMO ankle braces to help with his walking.
Before First Steps, a hearing test alone cost us $250. Each.
With First Steps, we paid a beyond reasonable monthly fee. Our family fee was $6 a month (There’s an income calculation for this and for us- my husband was unemployed due to covid at the time). This covered all of his therapies, every hearing test, his orthopedic appointments, his SMO ankle braces, and if he needed hearing aids during our time with First Steps—they would have covered the cost.
What my son is doing now, thanks to First Steps:
We have been out of First Steps for about five months. Now, my son’s hearing loss is to the point where he needs hearing aids. Unfortunately, the need for hearing aids was after First Steps. He still uses his SMO braces; no more falling and bruising on his legs! He attends Early Childhood within our school district. He’s within a deaf/hard of hearing classroom, with audiology support, language therapy, occupational therapy, and physical therapy—all at one location. We’re so proud of the tremendous progress he has made over the past year!
Are you or were you a First Steps family? How did they help your family?