In this episode, we discuss self-care, coping, stigma, advocacy, and helpful teaching techniques that parents can use at home. Guest Leah Moore has 3 children with different needs. Her daughter Jordan was born with Cri Du Chat Syndrome. She began to lag behind developmentally, which led Leah to looking for a diagnosis for Jordan. Symptoms of this disorder can include a kitten-like cry, microcephaly, cognitive and developmental delays, hypotonia, require feeding tubes, and some children are unable to walk or talk. However, Jordan walks and talks but has some cognitive and social challenges. She also has epilepsy and some medical challenges.
Due to her husband being a carrier for Cri Du Chat Syndrome, Leah did IVF, and ended up having twins. One of her twins, Austin, had hydrocephalus at birth, although he never required neurosurgery. He does have learning disabilities, but is doing well. Her other twin, Oliver, started developing some spots on his skin at one point. His doctors were concerned that he had leukemia, so he had numerous procedures and tests. He was later instead diagnosed with ITP, idiopathic thrombocytopenia. He is generally healthy, but has a tendency to bleed more than other children would.
Leah found that she felt isolated during Jordan’s early years, as they were figuring out how to navigate the different needs. Leah also found it terrifying to manage all the needs at the same time. They learned to focus on the children as they were, and not focus on the appointments, and conditions, and paperwork that came with everything. She tries to just focus on who they are as people. When she tried to stop the sadness she was experiencing, she found that she squashed the joy, too. She wanted to remember that even in the worst time, there was still beautiful things happening every day. She found that reaching out to others and sharing her story was incredibly helpful for her. She uses writing as a huge outlet. She and her husband also take turns taking breaks. Keeping everything afloat is a challenge, but having a strong support system, starting psychotherapy, finding enjoyable hobbies, and relying on those tools when she needs them really help. She learned that she can’t be all things at all times. She struggled with finding her community, but she found them within social media, the Cri Du Chat community, and at conferences. She also connected with parents through her special education PTA and through her website.
During crazy times, it can be helpful to control what can be controlled. Leah works hard on basic self-care, like dressing fully for the day or dressing up, which really helps to boost her mood. She noticed that any one thing doesn’t work for everyone. Each person is an individual. She noticed that finding tiny ways to care for herself works best. She works hard to be mindful during her day.
Leah deals with stigma by educating others. She recommends reading books about differences and disabilities to help lessen stigma.
Through teaching an adaptive theater class, Leah learned the following:
- Use structure and visual calendars. Make sure your child knows what his/her days look like.
- Be purposeful with your transitions. Be detailed about what will happen. Provide choice within structure. Have transitions look the same each time, when possible.
- Pause and notice. Notice what is working and when there is an opportunity for more learning.
- Yes and. Instead of focusing on “no,” say yes to the direction the child is leading you, within reason.
- Every single person has a voice. Each child has an opinion about something.
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Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple