Our Journey

Our first son was born in December of 2014, a month before his due date. He spent 19 days in the intensive care unit working to overcome latch and feeding issues, jaundice, too much weight loss, not enough weight gain plus whatever daily genetic concern the attending doctor had (high palate, webbed toes, tied tongue). He hardly ever cried, he hardly ever pooped and we hardly ever left his side.

Rafa had pretty significant delays in his gross and fine-motor skills development. He suffered from hypotonia (also known as ‘floppy baby syndrome’) which made tummy time impossible, it took months to get comfortable breastfeeding and we entered into Early Intervention when he was only 4 months old. We started seeing a physical therapist immediately (Hi Michelle!), had a brief relationship with a nutritionist and eventually settled into group therapy where he saw 3 different therapists (physical, occupational and speech) twice a week. Over the next 2 years, he would reach and then exceed developmental milestones in EVERYTHING except speech.

Our baby that never really cried, he also never really babbled or cooed. There were noises of course, but nothing consistent or significant. There was one time at around 18 months old when he said “bubble”. Clear as day, several times over a 24-hour period. And then…it was gone. We were so focused on the over-arching issues that his lack of speech didn’t really come into focus until some of the other delays were resolved.

Rafa is very communicative: at one point he was using about 30 hand signs, he lets us know anytime he hears a train or a garbage truck and he has very distinct noises for cats, dogs, cows, horses, tigers, and even dinosaurs. His receptive language is incredible, in both Spanish and English, and he flies through vocabulary books with excitement and ease. He understands us perfectly and there’s no question that he’s an intelligent kid. He’s sweet and smart and silly…

He just can’t speak.

He’s been flagged with Childhood Apraxia of Speech. It’s a neurological condition that affects a child’s motor speech abilities. Kids with apraxia have trouble planning out how to move their lips, mouth, tongue and/or jaw to form words and syllables. This disorder doesn’t affect a child’s intelligence, often a child knows exactly what they want to say – they just can’t. Rafa’s had many of the early symptoms: trouble latching, food stuffing, limited babbling, only producing single-syllable sounds, unable to pucker up for kisses, preference for adult company and early fine motor issues. We won’t be able to get a proper diagnosis until he’s a bit older, able to follow directions AND can say a few words.

We’re starting this blog as a way to record our journey navigating the system, his progress and our fears, feelings and fantasies.

Our goal is very simple, to help Rafa find his voice.

♥ Tim & Isa