Nic has been working really hard at home in her therapy sessions and with mom. We have mainly been working on range of motion for muscles, sitting up, maintaining focus on objects and the ominous tummy time. Nic has been a trooper, while mom needs to work on letting Nic struggle. Nic cries a lot during therapy now, and the sore muscles at the end of the day have been concerning. No one in the world wants to watch their child struggle, and I view this as preparation (for lack of a better term) for the future.
Vision intervention (designed by mom and past coworkers) seems the most promising. Nic recently had a functional vision assessment to give us an idea of what she is or is not using when it comes to vision. The results are as follows:
VISUAL PROCESSING BEHAVIORS
The CVI Range developed by Dr. Christine Roman was used to
assess visual processing issues due to the neurological diagnoses. The scale ranges from 0-10 with 0 representing
no visual responses and 10 representing resolution of lower level visual
processing issues. Higher level visual
processing issues can persist if lower level issues are resolved. Nicolette’s combined score was 3.25 placing her in Phase I which pertains to building
more sustained looking behavior. She is
beginning to emerge into Phase II which starts to add function and meaning to
vision. The unstable status of the
hydrocephalus could cause some regression on the scale but it generally expected
that improvement on the scale will be realized due to the plasticity of the
infant brain. The visual processing
behaviors broke down as follows:
·
Color: Mother reported that red might be a favorite
color. Nicolette did best when targets consisted
of 1-3 bright colors. (Range 3-4; 0.25)
·
Movement: Movement cues and reflective properties were
instrumental in eliciting visual attention.
(Range 3-6; 0.375)
·
Latency: A “slowness to visually respond” was present
but slightly decreased as the session wore on.
(Range 3-4; 0.25)
·
Visual
Fields: The left field shortly left
of midline was preferred. Nicolette had
great difficulties using all outer peripheral fields due to the head control
issues and possible cataract interference.
Brain damage to specific fields could also be a possibility. (Range 3-4; 0.25)
·
Complexity: The environment needed to be controlled for
all sensory input so that Nicolette would visually attend. She preferred to use her sense of hearing
over vision and became distracted when she heard another child crying in the
hall. Visual complexity of the target
and background needed to be simplified.
(Range 3-4; 0.25)
·
Light
Gazing: Gazing toward lighted
targets could be re-directed to non-lighted targets but responses were better
to lighted targets. (Range 3-4; 0.25)
·
Distance
Viewing: Purposeful visual responses
to objects were limited to near space.
(Range 3-4; 0.25)
·
Visual
Reflexive Responses: The blink
reflex was sluggish and the threat blink response could not be elicited. (Range 3-4; 0.25)
·
Visual
Novelty: Nicolette briefly viewed
the new targets presented during the evaluation as long as they complied with
complexity requirements. (Range 3-4;
0.25)
·
Visual
Motor: Reaching attempts were not
visually directed and look and touch occurred as separate events. (Range 3-4; 0.25)
From this information, I then gathered baseline data on Nic's attending of color. Nic is "looking" at the colors red, yellow, orange, and blue. Blue needs a black contrast but she seems to love it. Focusing times averaged are as follows:
- Red-Most preferred as expected with CVI-8.25 seconds
- Yellow-6 seconds
- Orange 5.25 Seconds
- Blue-3.5 Seconds
It is important to note that when testing I use a simple piece of paper or large toy that is a solid color and add a black background if needed. I just added these photos because we also play, read books everyday, and well, she is SOOOOO cute!
These times give us a baseline to build off of to see if intervention is being successful. I'm also currently awaiting the arrival of a copy of
Roman-Lantzy, C. (2007). Cortical Visual Impairment: An approach to assessment and intervention. New York, NY, USA: AFB Press.
as Roman-Lantzy developed the scale of functional use of vision used in her assessment. Her intervention in the meantime is trying to implement the following ideas (summarized by Pam Shanks, Primary Educator, Inclusion Specialist at Raintree Montessori School in Lawrence, KS):
1. Color and movement elicit looking: Again what R-L would predict. If she is not looking, moving the item a bit might help. When she does fixate, allow her to look as long as she can. Watch for her to "stop" looking. You may have to keep the object moving to help her maintain gaze which frankly feels wrong at first. You will want to stop making the object move when she looks. Hopefully you will begin to see her length of looking grow and/or her ability to fixate, track etc improve.
2. Complexity: Invest in a black shirt or two and or a black apron. That way you will always have an easy black background for presentation. As you buy toys and items for her to use, think plain and one color (SO HARD TO FIND!!!!) and for now red (her favorite likely because it is easier for her see) or yellow. See example below of ways to use red. Red metallic curling ribbon bow would give movement (metallic reflectivity and actual movement) plus use red, Add a black background to reduce complexity and a desk lamp (see below) for a spotlight and you have a great toy to elicit look and reach.
3. Spotlight vs. light table: A spotlight (think adjustable desk lamp) can be very useful too. Dimming the light and focusing the desk lamp on the visual target can elicit a look as well. In fact, having a lamps as an alternative to overhead lighting in each room is a good idea. Dim is good.
Always put a hat or sunglasses when going outside. STILL WORKING ON THIS ONE as her helmet limits her ability to wear hats and sunglasses.
I will chart and post updates (hopefully) biweekly.
Currently, Nic is tolerating five minutes of tummy time per session at a rate of three sessions per day. This is the hardest to work on, because she literally cries to the point of throwing up. However, there are very few other ways to gear up her muscles to maintain head control.... And honestly, what a head she will have to control (HC 57 CM). We take comfort in the fact that there is a notable difference in how much we (mom, dad, and therapists) have to "help" her with her head when sitting up to play with stuff. This is incredibly hard for Nic. There is generally what the next hour looks like after we work on this.
But we try; we try everyday because that's our job as parents. And we love her, and sometimes that means making our child push harder, work longer, and letting her cry a little. Because, once she develops these skills, it will feel like winning the lottery, and all the sore muscles, all the crying and all the parental heartache will be worth it.
Dad is the best at sitting up time. She loves playing games with him while working on trunk control.
Tough work over here!
Also, I just wanted to note, that she confirm and monitor intervention with both of her PTs and her Pediatrician to make sure we are not cross in the line between hard work and hurting her.
