Our story part 2: The toddler years

Bearhug and Cuddlebug each said their first words at 16 months, but their few words were mostly limited to object identification. Aside from that, they did a LOT of babbling, and what we later learned was known as “jargon,” which sounds like speech but doesn’t have real words. As their vocabulary grew, their impressive memory became evident. By age 2 they could recognize all the letters of the alphabet, shapes, colors, animals, and could count to 20. Labeling is not the same as interactive communication though. They struggled to express even basic needs and wants, displayed little “joint attention,” had limited eye contact, and didn’t point.

Aside from each other, neither of them showed much interest in other children. They often completely ignored us, almost seeming to look through us even when we were directly in front of them (dh called it “ghosting” because it felt like we were ghosts). Cuddlebug tuned out so often that we joked about him being in his own little world. We didn’t realize it was anything to be concerned about. They loved to look at books, but wanted no part of having the actual story read to them. They sometimes lined up their toys, and occasionally even sorted the letter magnets on the fridge into separate lines by color. They continued to enjoy spinning wheels, or lying down as they rolled trains back and forth so they could watch the wheels spin.

They were each prone to frequent, intense meltdowns, and more often than not, we had no idea what had triggered the meltdown. It was not unusual to have several meltdowns in a day, and sometimes it felt like we were walking on eggshells to avoid triggering the next one (hard to do when you’re not sure what is setting them off). We eventually learned to spot the signs of an impending meltdown, but most of our attempts to prevent them were unsuccessful (because a lot of times we still couldn’t figure out what was wrong, why they were getting so upset). It was a lot like the old cartoons where someone is tied to railroad tracks – you can see the train bearing down on you but can’t get out of the way.

On the sensory front, Bearhug was forever crashing into people and furniture. When he wasn’t climbing something, he was hanging upside-down off the couch or a chair. Despite his fearlessness in other areas, he was terrified of certain sounds (like the geotrax trains, he ran for the hills any time someone turned them on). Sometimes he’d cover his ears and we couldn’t figure out what was bothering him, probably something we didn’t even notice. He put everything in his mouth long after it was typical to do that. He drooled a lot – his shirt always had a big wet spot because of it (but he wouldn’t wear a bib). We later learned that was due to muscle weakness in his mouth.

Cuddlebug often stuffed his mouth so full of food that he choked on it. We watched closely to try to prevent that, but we also got pretty adept at scooping clumps of food out from his throat. He hated swings and disliked having anything grainy on him (like sand). He sometimes walked on his tip-toes.

Both of them could spin or run in circles over and over and never get dizzy. They loved to run their hands in water and turn light switches on and off (not a good thing as flashing lights are a trigger for dh’s migraines, so we had to keep them away from light switches). They each got “stuck” on things and trying to redirect them was nearly impossible. Transitions, even small ones, were extremely difficult.

The first time anyone mentioned concerns to us (other than “gee, are they always like that?”) was in their nursery class at church. The teacher pulled me aside one day and said she was concerned our boys might have hearing issues, because she could be right next to them saying their names and they showed no response. I laughed it off and told her not to take it personally because they ignored us all the time too. She also expressed concern about our boys running in circles around the room while all the other kids were sitting in chairs for the brief lesson. Having only my own boys as a point of reference, I found it hard to believe that any children their age were capable of sitting in a chair for more than 2 seconds but as I later learned, I was wrong.





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