I’ve gotten some feedback from some parents asking for a little bit more information about Nik in an effort to help me find some things to try with him. Seems reasonable enough.
Without getting into Nik’s very involved history, I will say that he was born 3 months early and weighed little more than a pound. Nik spent a long time in the hospital and has gone through multiple surgeries on various systems. He has CP to a lesser degree which affects his strength and coordination mostly on the left side. He has absence seizures, intestinal malrotation with reflux and has a g-tube. He is visually impaired in his right eye and he has recently been diagnosed with autism.
We’ve had three different developmental evaluations over the past calendar year. Each one shows Nik roughly in the 6-9 month range for expressive language, 12 months for receptive language, 10 months for fine motor, and 12 months for gross motor. All the evaluators, Nik’s teacher, and his therapists all agree that he has skills scattered to roughly 18-24 months. We all sort of agree that Nik doesn’t test well in strange environments or with unfamiliar objects.
Nik is incredibly curious about how things work. He’s obsessed with things that open and close (doors, drawers, boxes), cannot sit still for more than a moment or two, loves music and toys that light up. He’s big into cause and effect toys. Nik tends to throw things for entertainment (as opposed to a negative response to something). He has a completely ludicrous sense of humor and will dot hings like stick his fingers in his throat to gag himself and laugh hysterically. He finds velcro highly amusing, and he mouths and chews nearly everything EXCEPT food. He has a REALLY tough time with unexpected change and transitions.
Nik responds well to musical cues versus spoken ones. He is mastering a lot of gross motor skills quickly; he’s on the verge of walking and climbs like a monkey! He definitely has some sensory issues but we haven’t yet identified what they are exactly. He likes things that vibrate, loves to swing, loves to roll and clap and kick. In spite of some of his attention and motor skill deficits, Nik has figured out things like how to fasten and unfasten the clasp on his lapbelt in his seating system. He’s learning
One person mentioned not wanting to overwhelm me with information but I believe that information leads to knowledge and understanding. Nik has been receiving early intervention of some sort pretty much since he came home from the hospital (at 7 months) so the idea of therapies and such is not new to us. Frankly, I’d rather try SOMETHING than do nothing.
Thanks to everyone who has reached out to me. On an intellectual level, I know that we are not the only family going through this. On an emotional level, it really helps to connect with all of you.