The end of an era

I dreaded Caleb’s 3rd birthday since he started in Early Intervention at 2 months old.

Soon after Caleb came home from the NICU, we had an Early Intervention evaluation.   This is about a two hour long process where a team of three multi-disciplinary providers come into your home and go through a long list of assessments and tests to determine your child’s developmental skills in several categories including communication, social-emotional, adaptive, motor, and cognitive.  Your child must have a medical diagnosis that puts them at risk of delay, or demonstrate developmental delays based on the assessment, in order to qualify for Early Intervention services.  Not surprisingly, given Caleb’s long list of medical complications and feeding challenges in his short first 5 weeks of life, the team determined that he was eligible for services.

We were quickly matched with an occupational therapist who I will call J.  The first day J walked into our house I knew it was a perfect match.  Not only was she great with Caleb - that’s pretty much a given for a pediatric occupational therapist - but she was an incredible support for me.  In those early weeks and months when I was on maternity leave and my only outings were appointments with Caleb, J felt like the best friend who was always there for me.  She quickly became a part of our family.  I remember one time she left her coat on our kitchen chair and it ended up getting buried by other crap.  We joked that I didn’t even notice she left her coat - it just fit right into our household.  And that’s how I felt about J as a person.  She fit right in.

J’s knowledge about infant fine motor, gross motor, communication, and feeding development amazed me.  She had endless creative ideas to try and get Caleb to tolerate tummy time and work on his torticollis which was resulting in plagiocephaly.  The way she came into the house without any special equipment or toys, just looked around and used what we already had, was incredible and made it very reasonable for me to replicate what she showed me.

As an overwhelmed mom of a NICU baby who was receiving tube feeds and had multiple medical challenges, I didn’t feel like I would fit into any mommy and me classes or groups.  I couldn’t sit through a support group talking about breastfeeding and sleep schedules when I was experiencing something astronomically different... medical procedures and tube feeding schedules.  I felt totally alone, and I was too deep in the thick of it to help myself.  J was my person.  I would talk to her about anything and everything related to Caleb’s care - tube feedings, bottle feedings, sleep, play, schedules, and debrief about appointments and procedures.  She cared about the whole picture, and she validated my experiences as a mother.

In Caleb’s first 3 years of life he had literally hundreds of appointments and procedures including swallow studies, echocardiograms, EKGs, ultrasounds, X-rays,  lab work, 3 surgeries, 3 hospital admissions, and a handful of ER visits.  As we navigated all of this, J was at the center.  She didn’t focus on what was “wrong” with Caleb.  She focused on his strengths and was there for every milestone - big and small.

She texted me on every surgery day and checked on us.  She remembered every big appointment and always asked how it went.  She shed tears alongside me when I shared the amazing news that Caleb had successfully passed his swallow study without aspirating.

Alas, Caleb turned three and Early Intervention services came to an end.  J did help us make a fairly smooth transition to school-based services, but it is so different.  The focus is on Caleb and integrating him into a school classroom, rather than Early Intervention which focused on integrating Caleb into our home and family.  But, I know that’s not the end of our relationship.  She’s still my person.  The first one I texted when Caleb drank water without thickener in it for the first time just a few days ago.

My 5 year old daughter Abby asked for J recently and said she missed her.  She understands that J won’t be coming to work with Caleb anymore.  Abby said “but Mama if you have another baby then J would come back right?”  My heart broke and my eyes filled with tears.  Abby cannot imagine raising a baby without J either.

My gratitude for J  and the entire Early Intervention program cannot be put into words that feel remotely adequate. Early Intervention providers help babies and families when they are most vulnerable, dealing with developmental delays, challenges, and diagnoses.  By coming into the home, they see the real picture of what is going on, what a family needs, and what they can reasonably be expected to do.  We could (and arguably, we do!) have the best surgeons, physicians, anesthesiologists, etc. in the world taking care of Caleb’s medical challenges, but if we aren’t supporting his developmental growth in our home in a way that works for our family then we haven’t actually helped him at all.

*For more information about Early Intervention, visit https://www.cdc.gov/ncbddd/actearly/parents/state-text.html and find the link to your state’s Early Intervention program.

Every state offers an Early Intervention (also called birth to 3) program.  You can refer your child yourself, or obtain a referral from your child’s doctor.