I have a very serious question, and need some help getting connected to people with relevant experience.
How do you connect to and motivate a deaf and blind infant?
We have done everything we can think of when working with this one infant at my day care for the past 6+ months.
And the growth she’s shown so far - her personality, her fierce independence, her exuberance and love of cuddles and jumping - shows we are connecting, and making gains with her.
She’s such a character, despite everything medically she’s gone through (details below cut) it’s so easy to treat her like a regular, stubborn child.
We talk with her the way we do any of the other babies, cuddle, make sure she can reach toys to chew, do our best to move her to something new when she gets fussy - generally the jumper, her favorite.
But she’s finally getting to the point where she can work on moving, and we’re struggling with reinforcing things.
She was making progress with scooting before the most recent medical crisis, but now she just seems content to focus on her fine motor (being able to hold stuff) and rolling.
She’s in physical et al. therapy, of course, but us day care teachers are getting a tiny bit frustrated with their “results” focus - when we know how much she can do when she’s not frustrated with being forced.
Full toddler stubbornness in that little body, let me tell you!
Can we grape vine this enough to connect me with disability specialists or people with real life experience with comorbid deaf blindness in infants???
I’m going to be obfuscating a lot of personal details whenever possible, because of reapect/confidentiality/etc. Because unfortunately there are some unique medical issues I want to share for context.
We’ll proceed with calling this girl Margret, and say that she’s about seven or eight months developmentally at this point (attempting to compensate for developmental stunting due to various medical crisis events).
Margret was born three months premature, with pretty much most of the associated heath concerns from that. She also, unfortunately, suffered seizures and Hypsarrhythmia (disorganized brain waves), which are associated with the two “medical crisis events” I reference.
Fortunately, she seems past the second crisis event, and is showing her personality, independence, and interests again.
Right now, the therapy specialists are focused on getting our girl on sitting and eating solid foods.
And having worked with babies for three years, I wanna smack ‘em!!! 🥴
My big thing with babies is “are they working on something?” Part of it might be my own neurodivergence, but as long as they are working at something within their developmental range, I’m happy.
Pre-Toddler “capable of learning not to do bad things,” of course (and of course I don’t let the babies get away with “bad stuff,” but I’m at the preteaching stage to make things easier for the toddler teacher later).
I’ve only had two babies freak me out for not doing something, and it’s poor Margret during her two medical crisis events and another child I, unfortunately, never got to see the resolution for.
Other older teachers keep pushing six/seven month olds to focus on unsupported sitting.
And you know what? One family had two perfect examples: the elder son wouldn’t sit because that meant staying still, and the other was so chill they just liked laying down. Both grew up to be insane movers and developmentally on track with everything else.
If a baby doing something other than what the sanitized charts say is expected? Most of the time they’re either the former - want to move - or the latter - satisfied with amusing themselves playing with their feet.
Both are building skills, and developmentally appropriate at that stage.
Generally, when I want to engage a child in sitting, I use our hanging toy gyms in front of them. The toys are up, encouraging keeping the body up, and there’s something of interest.
I don’t know how to motivate Margret with something similar, though. She only seems to know if there’s a toy when she’s able to feel it, and obviously laying down or sitting in a high chair/baby table is best for being able to keep track of a toy by touch.
As for eating… You’ll read below Margret has literal trauma about food, being force feed for health reasons, etc. I’d like her to eat, but it’s only a priority for making this easier for the adults. We have supplemented fluid we can use, I’d rather let her work on gross motor skills and being happy instead of “learning to eat [like a normal child].”
😠
This is where I’m really asking for help: We can connect with Margret though touch and her preferred toys. I used to tap her pacifier on her cheek, try to reassure her it wasn’t the (wet) bottle and I was done trying to get her to drink.
Putting her pacifier or other toy in her hand is now the best option, she recognizes it faster!
She’s also very vocal! It’s hard sometimes to determine right away if she’s happy or sad, but she quickly makes it clear.
My favorite recently is that she will scream when she drops her “honey dipper” “spoon” we’ve been using at meal times for baby oatmeal. She’s not too fond of the food part, but she loves chewing on it! Great for teething!! She’ll throw her biggest fits when she drops it, then giggles when we get it back in her hand.
She’s learned “screams = help!” and I am beyond thrilled she’s made that connection!!!!!
I don’t know how much of her other vocalizations are similar attempts to communicate, or self soothing.
Anyone with experienced opinions, I’d love to hear them!!
I’ll try summarizing the medical background, if the details help…
Margret started at our center about six months chronologically, three months developmentally. She had some delays there, but our primary concern was eating.
Poor girl, feeding has been a struggle except for one miracle period. Lots of regurgitation, which makes her resent bottle time generally, and the more upset she is the more likely she’s to gag.
She was even losing weight for a while, so as much as I didn’t want to traumatize her I did my best to balance times feedings with listening to her feedback.
But for a bit, I didn’t overall worry. The more she fought the bottle, the more I was sure there was a person inside, and at first we got to know Margret as she started building skills.
Number one: She loved to stand. Easiest way to make her happy was to get her on her feet. She built muscle fast for all her weight issues, you could hold her by her hips and she’d be able to keep herself upright at a level you usually don’t see at her developmental stage.
Once she was big enough for the jumper, she found heaven. She will let us know if she’s done, but usually she wants to be in there until she rocks herself to sleep.
Like most babies even up to her current development level of 7-8, so I was thrilled there!
Then she plateaued, and I got worried. We noticed she almost never responded to auditory stimulation, and never focused on anything - her eyes always wandered.
For a while, I wondered if she was severely near or far sighted, which is why she never seemed to focus on anything.
Then two bad wammies.
First: Tests suggested her eyes and ears function well. Any issues with vision or hearing is in information conveying or processing.
Second: After regular EEG scans without concern, Margret began showing seizure activity and Hypsarrhythmia.
Potentially responsible for the first via brain damage, we obviously can only hypothesize.
That’s the first medical crisis in my personal experience with her.
We got her on meds, and - Margret was back! As stubborn and as curious and as energetic as ever.
She was even trying to scoot. One day, she shocked me by basically trying to pull herself into the wall mirror we have for the babies! 😊
They got her on some anti-regurgitation medication, too, and bottle times became a joy for all of us!
And then…
I don’t have the details. All I feel comfortable with saying is there were bad decisions being made about the seizure medication…
They down-titrated all of Maegret’s medications.
This period is the second crisis event, and we’ve been fighting to get back since.
She lost weight. She’s been regurgitating all her bottles again - we’ve had it as bad as 7 regurgitations while at the center, and we have to keep trying again in half an hour in a vain attempt to get calories into her.
She’s gotten back into her old personality, though, and her fine motor skills seem to be increasing! She searches for toys on the jumper, instead of needing them handed to her, and will pick up stuff on the ground if she rolls enough to feel it.
But she has no interest in scooting anymore, and when she tries to walk when held her legs are very very unstable. Her feet roll, she doesn’t know where to put her legs…
She can stand flat footed in the jumper, but I don’t think she’s fully put together how, it’s just chance.
I want her to keep making gains and showing off her skills. I want her able to move, and get even more independence.
And the older kids in the baby room are great with her, we have a 90% great group! (one stinker, but he’s a stinker to everyone, and typically prefers the active babies to rough house… lol)
I’m running out of stuff I feel safe to share/need to vent.
I just… got really frustrated with the therapy people today.
I know they want the best for Margret. But she was tired today, she did not want to sit, and it infuriates me we can’t show off the stuff she’s actually working on because they’re fixated on two narrow things.
