Life with a Non-Verbal Autistic Child.

My wife and I suspected nothing major after learning our twin girl will have some health issues when she would be born. The twins were born almost 3 months early and spent months in the NICU, so when she came home we thought she was just catching up on development. Long story short, she was diagnosed with (nonverbal) autism around 2.5 years old. Then the fun began, of course, I’m being sarcastic but at least we knew what was happening from then on, kind of?!

From coming home with a feeding tube, going through a heart, eye and ear surgery, she’s a happy girl and tolerates pain better than her older brothers COMBINED. Oh and in case wearing a diaper (still) and not being able to communicate weren’t enough, seizures are a semi/constant occurrence with her and a consistent lesson for us. Every day isn’t the same but we’re starting to catch her groove even when she doesn’t feel like grooving her usual way.

Fast-forwarding to the present, here’s how a typical day goes or I should say night, make that 24 hour period. It’s VERY similar to Abby from the “Fathering Autism” channel on YouTube, except our little lady is younger and sleeps in our room.

She loves my or my wife’s pillow better than her own, so that’s why a lot of nights she comes to our bed and just stands there, trying to talk or make audible noises in any way she knows or just starts tugging on a blanket… a few seconds later my wife helps her climb into our bed and if I’m completely out I just continue sleeping, otherwise I relocate to her bed and continues my dreams there, where I left off (if only). Speaking of sleep, she cannot sleep too far away from us, because you know, seizures. There were a couple of times she went limb and unresponsive from having seizures for so long in her bed, but by this time we knew what to do so the ambulance didn’t need to be called. Even having a camera there with the microphone didn’t help us catch it, what did do it was a parental instinct to check on her in the middle of the night.

Upon waking up, Milana does one of these things:

• Puts a pillow in her lap and starts jumping.

• Finds a teeter or a binky and combines that with the previous option.

• Starts running around the room making sounds, usually happy childish grunts or screams.

• Finds a music toy and puts it against her ear or on the pillow and rocks away, literally back and forth as if she’s in a rocking chair (autism thing).

• If she’s on the cranky side, things start coming down from dressers, nightstands, and bathroom counters.

• If we’re in our bed, guess where she goes?

We usually grab her and help her down the stairs to the first floor when we hear things star falling down or she tries to call for help, by cry-yelling.

When she’s downstairs, she continues to do what she started upstairs; mainly rocking on the sofa with a tune-toy in one hand and a teeter or some other chew-friendly object in the other. She is supposed to wear eyeglasses and does a lot of the time, but on a few occasions, she kind of destroyed her prescription glasses by biting the frames and messing up the lenses, we’re on her 5th pair right now.

Breakfast can be tricky. Some days she’ll eat almost anything, although she prefers crunchy things like crackers, cereal or granola bars. Food can also be a tipping point for whether or not she feels happy or starts throwing a major fit and knocking things down. A major fit usually happens on an empty stomach and when she smells food in the air but doesn’t get any to munch on right away. So we learned to bribe her with crackers or small pieces of the main dish before everything is ready. If the meal can’t be consumed by using her hands, we need to feed her. We are in the process of teaching her spoon-feeding, but that’s a whole new challenge.

ABA (Applied Behavioral Analysis) staff does come over for 2 hours Mon-Fri, and they do help a lot with her learning and developing abilities, but they’re only here 2 hours a day. The rest is up to us to continue teaching her. When they do come, they work on their program to help her with things she needs to learn to do. Currently one of the big ones is potty training and spoon-feeding.

Once ABA leaves, we give her lunch (my wife usually) and she continues to rock away, or runs around before settling on the sofa and either watching TV (her favorite are kids songs and nursery rhymes) or pushing buttons on one of her many toys with music or songs.

Most days go smooth but we do need to be present in the same room with her, if not us than her brothers or the dog… otherwise she feels alone and starts getting anxious and runs towards the kitchen gate to cry for attention, that’s why we pretty much never leave her alone by herself, anywhere. The TV can distract her for a little bit longer, but she soon realizes when she is alone.

Naps aren’t consistent, as is everything with autistic kids. When she does nap, she feels and behaves better. When she can’t nap or simply doesn’t want to, we don’t make her. She just goes on with her day, snacking a lot, rocking away to once again either her humming or the same old ABC songs and lullabies with play buttons worn out and batteries constantly draining. Towards the night, when she is too energetic but needs to sleep, she almost always expects a melatonin gummy and falls asleep much faster.

Things aren’t always like that, however. When she has a cold or random fever, yep just random fever of 101+ for a day and then back to normal the next, she just isn’t herself. Fevers often lead to seizures and that’s another level of caregiving right there. It takes her 2-3 days to fully recover after a grand mal seizure, and those two days are hard. She just hates everything and everyone, and I get it, it’s not her fault and she is feeling miserable. Even on seizure medication, she has them. Luckily they’re not super frequent, but even once every couple of months is one time too many for any child.

She used to be able to say things like: “ball, papa, apple, ouch, wow, oh oh” but her brain cleared that word-cache after one of the seizures years ago and the process of learning them or attempt to at least starts all over.

The only thing we wish she could have the ability to do is to communicate with us, even if it’s in sign language, pictograph app on an iPad or a modified version of ASL. That would make her understood and happier girl. For now, we’re learning what she likes, how she asks for things, and what her pain points are and work around those. Yes, she is mentally slightly older than a one-year-old toddler, but her weakness makes us stronger, even if we’re running on caffeine and are sleep deprived sometimes (I do have access to that bottle of melatonin after all…)

There are a few things she loves, couple that are on top of the list are hugs and kisses. Her innocence is priceless and knows no bounds. She comes up to a stranger and just leans or puts her head on their lap or just starts hugging strangers at their waste. She doesn’t care who’s holding her, or whose hand she’s holding. She will grab your hand and start playing with the fingers, lean into you and you can’t help but hug her. As the saying goes, a daughter may outgrow your lap, but she will never outgrow your heart… especially hugs, kisses and nightly tickles :)