First Observation/Shadowing Session

On September 9th, I had the opportunity to shadow PT on two physical therapy visits with two different boys. These were my observations:

Child A – 9 months old; low muscle tone

PT  has been working with Child A for the past few months. He was born with extremely low tone and when visits began three months ago, he was unable to lift his head, hold himself up, or hold a toy on his own. His only possible position was lying flat on his back with arms laid flat out on either side of him due to his inability to lift his arms upward. A good tactic to help him was ‘side-lying’, which positioned him on his side. It forced his legs together and his arms were in a better position in front of him.

Positioning of the child’s toys are important as well. For example, placing a toy forward in front of the child’s head will make him move his head forward, strengthening the neck muscles. At first, on his stomach, Child A could not pick his head up. It would fall down and he would get frustrated; slowly over time, he had gained the strength to lift it up.

PT uses toys to motivate Child A to reach forward, especially ones that are colorful and noisy to grab his attention- the toys or objects that are used as motivation make all the difference. She helps to hold him up a little bit but tries to get him to do it mostly on his own. One of the issues associated with his low muscle tone is that when he loses his balance and falls over, he makes no attempt to lift himself back up. Also, when he is held up in a standing position his legs collapse. There is no attempt at all to stand or keep them straight.

One product that PT uses with children with low muscle tone is called a gertie ball, which comes in sizes of 9″ or less. It is a ball that comes in different textured surfaces and you are able to blow it up as firm or as loose as you like, which makes it easier to grab and adjust. The child is placed on top of the ball in a sitting position which enhances his posture and gives him the opportunity to bear some weight on his feet. The 90 degree sitting position is really important for them to learn to do on their own- it is great for leg strength, waist strength, and neck/head strength.

Child A can go from his back to his side, but once he is on his side, he lacks arm and shoulder strength to lift himself up on to his stomach. Also, Child A struggles to lift his head so with every turn his head shakes a little, representing how unstable the movement is.

Child B – 2 years old; high muscle tone

PT has been working with Child B for the past few months. He can only stand if he is held since he struggles to stay upright, so she is working with him on lifting off the ground to get into a standing position. His high muscle tone causes him to keep his hands fisted and all of his ligaments brought in close to his body. Instead of crawling, he scoots around with his right leg in front of him and his left leg behind him, using his right leg to pull his entire body forward like this:

To help him try to walk in the upright position, PT aids Child B in using a toy with a handle and wheels that he can use to support his weight. Even with the help, he is very wobbly when using the toy for support. He has problems with motor planning and has only figured out how to sit up 2 months ago with the help of physical therapy. Up until this point he can only sit up using the right side of his body; he still struggles to use his left side as support.

Child B is gaining strength in his leg muscles and learning how to move from sitting to a standing position. PT is hopeful that he will eventually be able to walk on his own in a couple of years with continued therapy. Another method she uses to help him stand is supporting him with her arms and leaning him up against a wall cushioned with gym mats to help him gain balance. It is easier for him to stand when he is distracted by visual cues, such as a video on an iPad that is held up in front of him. He is not thinking about what he is doing at that point, but as soon as the video ends and he is no longer distracted, he ends up falling instantly.

Gaining Some Professional Input

I sought out pediatric physical therapists in order to gain some more insight about my thesis topic. While the internet and library have been great resources so far, I really needed to meet with someone in person for additional guidance and to find out if I would be able to observe multiple physical therapy sessions. My searching brought me to a local pediatric outpatient therapy center made up of experienced pediatric physical and occupational therapists that primarily focus on early intervention. That is how I got in contact with the physical therapist (who I’ll be referring to as ‘PT’) who agreed to help me throughout this process.

PT has already given me some general guidelines when it comes to toys and objects used to work with children with abnormal muscle tone. All of the human senses are targeted during physical therapy sessions:

Vision

Vision leads to all movement. One big visual stimulation for children is color; black and white are early visual cues. For newborns, their visual field is best within 8-9 inches. Their initial visual field is not so strong.

Vision can also be used as an incentive to help them gain physical strength. For example, positioning of a toy or object can be key. Placing it forward in front of the child will cause him to move his head forward as well, strengthening the head and neck muscles.

Hearing

Children respond to voice, physical touch, heartbeat, and rhythm of breathing. If the child gets worked up, speaking soothingly or breathing rhythmically helps calm them when you hold them. (also applies to Touch)

Touch

Children with lower muscle tone do not have great movement. They are unable to crawl or move around to explore and touch objects in their surroundings. Incorporating texture into the designs they interact with is highly important to expose them to what they otherwise would be missing out on. Materials in their surrounding environment are also important for them to get used, such as the furniture around them and different floor textures. For instance, being able to feel the difference between hard/soft and warm/cold gives them a better sense and awareness of their body.

Within our first meeting, PT gave me really helpful advice that has altered the path of this thesis topic. Hypotonia is very specific and can limit the amount of users for my product, as well as making it incredibly difficult to create a universalized design. Instead of just focusing on children with hypotonia, I will be designing for newborn to 3 year old children with abnormal muscle tone, including both high muscle tone and low muscle tone.   A design will be created that can cover both extremes since they actually have many similarities.

August Visit to Adaptive Design Association

In the beginning of August, I had the chance to spend the afternoon at Adaptive Design Association, a spectacular non-for-profit located in Manhattan that focuses on creating custom adaptations for children with disabilities. I was taken around the facilities to learn more about the materials they use, the children that require their help, and how they design custom pieces for the children that they work with.

My thesis seeks out to design products to work alongside the sessions that an occupational and/or physical therapist would conduct with the child. They would be products designed for the home environment; products that parents could use during play, mealtime, and other times throughout the day to help advance the work being done by the therapist.

Adaptive Design Association designs custom pieces for individual children. For each piece, the designer works with the child’s therapists, usually the physical therapist, to figure out exactly what the child needs in order to help them with their physical development. The custom pieces have very specific details, such as knee-blockers to prevent overextension outwards, head pillows to prop their head up and prevent them from having it faced downward due to lack of strength, and soft body straps to hold the child in place where it is necessary. All of their designs are made out of tri-wall, which is essentially layered cardboard that is low in cost yet sturdy enough to create long-lasting results.

Rocio Alonso, an Adaptive Designer and Fabricator at ADA, told me that it is possible to add too many details to each product. She told me to remember that adding too much support will cause the child to become less likely to work on his own at all and he will not be able to advance at the expected pace. If there is too much help, the child will not be able to experiment with movements and try things out for himself.

As I’ve already explained, ADA creates custom pieces catered toward individual childrens’ needs. With my project, mass production has to be taken into account. Therefore, I have the intentions of observing at least one child with hypotonia to help base my designs on, but then I will continue to carefully add on to those specific features in order to universalize the design for a much larger market with slightly less specific needs.

A small chair designed to be adjustable with the child’s growth.

Some of the many children that ADA has designed for.

Soft, adjustable straps.

ADA’s ‘Tippy Stool’ design.

Getting Organized

Throughout the summer I began collecting research so that once the fall semester began, I would be able to sort through it all and pull out what could help me with my thesis. The research includes medical websites, scientific journals, blogs for parents of hypotonic children and assorted articles that focus on designing for children with disabilities. Before I begin sorting out all of the information that I have collected the past couple of months, I decided to create a list of three stages that I will tackle by the end of this process:

Stage 1: Understanding hypotonia.

– what is it exactly?

– what are the symptoms?

– how moderate to severe is it?

– statistics?

– age group to focus on? (infant to 3 year old? 3 year old to 6 year old?)

 Stage 2: Helping children with hypotonia with the use of design.

– what symptoms affect them physically?

– how does this have an affect on their daily life?

– what actions/movements can help them gain strength?

 Stage 3: The positive effects of design for children with hypotonia.

– should the designs focus on helping them with daily activities or making them stronger/more independent?

– what are the exact problems I am trying to solve?

– what human interactions am I trying to positively affect?

– what type of design can be used to help (i.e., furniture, environment, toys, household products, etc.)?

– how can each of these individual designs help them?

– how can these designs work together to help them get stronger & more independent?

And so it begins…

This blog will be my way of staying organized and keeping track of my MFA thesis development from beginning to end. I am excited to get started but there is definitely a lot of hard work ahead of me. I want to share my thesis proposal so the overall thesis is clearly stated:

“Hypotonia is a condition in which a person has decreased muscle tone. It is more common to see hypotonia in children than it is in adults, although children with the condition can have it their entire lives. A condition that equally affects males and females, hypotonia is becoming more common than it used to be. This is because the survival rate of those who are more likely to be born with a disorder that causes hypotonia is higher than it was in the past. It is common to see hypotonia in children who have disorders in which it is a symptom, such as central nervous system (CNS) disorders and neuromuscular disorders. The most common disorders in which hypotonia in children occur is cerebral palsy and Down syndrome, although other disorders that can cause the condition include muscular dystrophy,Prader-Willi syndrome, and Tay-Sachs disease”

-www.wisegeek.com/how-common-is-hypotonia-in-children.htm

Hypotonia is a condition that affects the physical development of young children and makes even the most minute task incredibly difficult for them to accomplish. It renders them highly immobile and dependent on others at the prime time in their life where they should be developing both mentally and physically. Symptoms such as low muscle strength and lack of coordination affect the way that they interact with the environment, people and objects that surround them at all times. Low muscle tone weakness can become more burdensome as the children develop and will continue to lessen their ability to do even the most menial tasks on their own.

This thesis project will utilize the ability of design to aid in the physical struggles associated with hypotonia and to find a solution to help children suffering from this disorder become more independent. Extensive research into hypotonia will reveal all of the developmental challenges that these children suffer from, which will then be used to find a way for the design around them to be catered toward their needs. A solution will be sought out in which the products that children with hypotonia interact with in their surrounding environment will help make their daily lives easier and positively contribute to a steadier physical development process.

I will be working with children, parents, and occupational therapists to strengthen my research to learn more about the problems associated with hypotonia firsthand in order to enhance the overall outcome. This will allow me to later focus on the design of either toys, products, furniture or spaces in which children with hypotonia will interact with. The outcome of this project is to show the ability that design has to have an immense impact on their lives for the better, both in the short-term and the long-term.

Let the research begin!