Leah’s Mom: How OT helped my daughter live, learn, and play.

Leah's Story

Thank you for agreeing to be interviewed for Occupational Therapy New Mexico. We want to share your experience with OT with other New Mexicans. Please tell us a little about yourself.

I am mother of two wonderful girls. I work full time for a social service non-profit organization. Also, I volunteer in the community, especially working for people with disabilities. 

 

Why did you seek OT services for your child? 

My youngest daughter, Leah, was diagnosed with autism at around 2 years of age. OT services were recommended by a physician and the school system. At the time, I was not all that familiar with occupational therapy and its role for children. Leah began seeing a private OT and also received OT services through APS when she entered school.

 

What barriers to participation was your child facing...

In Everyday Life: She was very limited in her eating and would only eat a few different foods. She had some sensory issues, especially with sounds and touch. Also, she had a VERY hard time being toilet trained. There were noticeable social limitations, she was still mostly non-verbal around age 3. She had a hard time sleeping and a hard time with physical activities due to her poor coordination and muscle strength.

Learning: Initially, Leah had a hard time staying in a general education classroom without being disruptive. OT services were used in the school to help her stay in a general education classroom throughout the day, stay at the right grade level, (she was very bright), and to challenge her. Leah had disruptive behaviors when she became overstimulated so the OT also helped to provide acceptable modifications to use in the classroom to help her to self-regulate and calm down. This also involved sensory integration therapy both through the APS OT and the private OT. 

 

Playing: The biggest barrier was the reaction of the other children. She was often judged or ostracized because she behaved and played differently than the other, typically-developing children. She did not have the appropriate social skills to interact or play with others so she often played by herself in her own little world. She also did not have the necessary physical capabilities to play games with others (e.g. four square or kickball). She took adaptive PE to try and help her improve in those areas and to place her with other children having similar problems. Leah was almost never invited to birthday parties, which became a problem as she became older and recognized that she was being left out and saw others invited.

 

Describe a session with your OT.

Sessions were a combination of physical activities that included a communication goal. For example: swinging in a trapeze and reciting numbers or letters. She did not have a good idea where she was in space so the physical activities would help her understand that. Often the activities were set up to make her frustrated in order to force her to talk or ask a question, and it was not always much fun to watch. Sensory integration therapy often occurred in the classroom. When she would “ramp up,” the OT would give her tricks to de-escalate such as a brushing protocol, breathing, or stamping feet. The key was that the OT took the time to know what Leah liked and what motivated her (princesses were huge!) so these were used as rewards and were integrated into her sensory tools (sparkly treasure chest that she could go to and pick out a piece of gum to chew on). The OT was so creative! For example, she put a pink boa over a chain that could be placed on her lap to help calm her and provide deep sensory input, she wouldn’t have allowed the chain to touch her if it wasn’t pink and fluffy. The OT would also provide a pink or purple sharpie that motivated her to practice writing. Leah had very poor grip strength and some teachers had recommended she just use a keyboard instead. Sometimes the “rules” don’t apply or work for everyone. This same kid who could not hold a pencil or verbalize what she wants can today draw and paint extremely intricate pictures.

 

What was the most meaningful goal your OT helped you to reach? 

Our OT gave Leah one of the most helpful tools to help her be able to discern what was happening. It was called the SPACE Plan (Setting Problem Action Consequence Ending). This plan could be used to help her through meltdowns and difficult social situations that just didn’t make sense to her. She had to write down on paper all the components of SPACE. This gave her a visual to look at, which are very helpful to her. A goal of the plan was to have her try and select the correct Action to deal with the problem (e.g. instead of screaming, ask a question for clarification). This has been an excellent life skill for her to have.

 

Results of OT 

Physically, she was able to ride a bike, take ballet and belly dancing classes despite still having some poor coordination.

She was given skills to handle difficult sensory situations such as eating at a restaurant, where our family used to never be able to go to eat. She was able to go beyond the restrictions of her autism and try new things. OT took her challenges from autism (social, sensory, communication) and pushed her to conquer them. OTs don’t take no for an answer and they don’t put up with anything. They pushed her out of her comfort zone and pushed her to break through the barriers. Through the challenges and the barriers the OTs saw the potential that maybe even I couldn’t see. For example, many parents may say, “She’s crying, you should stop doing that activity.” That attitude will never help them grow or become independent.

I would say the results of OT were very successful, her goals were met and her goals always evolved with her and became more challenging. She just moved into a house with three roommates, is about to graduate from the University of New Mexico, and is learning how to drive. Before OT, no one thought that would be possible. I would still like OT services for her today if they were covered by insurance because I know that she could always benefit more from OT.

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