Therapy Guidance for Parents of Children with Special Needs

Marsi and LangstonMarsi Jackson is mom to 2 and a half year-old Langston, who has Down syndrome and has been attending The Harry and Jeanette Weinberg Child Development Center in Washington, DC

At Easterseals, Langston receives a variety of services from a speech-language pathologist, physical therapist, and occupational therapist through the early intervention program to help overcome some associated challenges with mobility, play and communications.

Easterseals’ speech-language pathologist, Corinne Zmoos, MS, CCC-SLP, recently chatted with Marsi for this blog to discuss how they were doing during the coronavirus pandemic and find out how they were adjusting to the transition of receiving therapy services virtually.

Corinne: Thanks so much for taking the time to share your experience. First, can you tell me how has the outbreak of COVID-19 impacted your family’s life?

Marsi: For the most part, it has been okay, but there are moments when we really miss our extended family. My children miss their friends and I miss my friends as well. Just being able to go out and have lunch seems like a foreign concept. I never thought I would say, “What would it look like to eat with friends?” Now I think about every little thing. It has me thinking a lot about what is next for our family. What will our new normal look like?

Corinne: It really has reframed what “normal” feels like and looks like as a community. What role would you say Easterseals has had on your family’s life before and after this pandemic?

Marsi: Easterseals has been a great. I don’t see at it as just a daycare, but a place where my son could thrive with other children, his teachers, and his therapists. He is growing in ways I never thought. I don’t know of another place like Easterseals. I’m lucky to have gotten Langston in so early. Now, with COVID-19 creating stay-at-home orders, Easterseals has been reaching out and providing the same therapy services online.

I was excited to hear that because I was worried about Langston losing all of the skills he learned, but hopefully he’ll return with more skills. The therapy sessions actually give us structure and it helps me remember what day it is. It’s been go for good for all of us. It also gives me confidence that when we do go back, Langston will still be excited about Easterseals.

Corinne: Being able to work with you and Langston every week gives me structure, too! Can you share what it is like to be a mother of a special needs child during this pandemic?

Marsi: As a mom of a child with special needs, my initial concern was whether the coronavirus was going to make my child very sick, especially since he would be considered one of the most vulnerable. I was afraid to imagine what that would look like for him. When we first started staying in the house, I thought I had to keep up with his routines like in daycare. It was incredibly frustrating because I couldn’t get him to take a nap and eat when he was supposed to. Eventually, I realized that we needed to choose our battles and take it one day at a time. And I am grateful that he is healthy, happy, and I can tell he continues to thrive more each day.

Corinne: It sounds like you were concerned that the way you interact with him would not be enough for him to grow, and yet you can see that he’s thriving at home. What have you learned about yourself and your strengths?

Marsi: [laughs] That I can actually do OK! Langston has special needs and for the longest time I’ve always thought: I’m not a therapist, I am just a mom. So, I leaned on Easterseals to help him because you have people who specialize in helping children like him. But I’m slowly starting to let go of the ‘I’m just a mom’ idea. I have been looking up articles and researching different things I can do to help him learn. And I am grateful for all the strategies you have shown that I can do with Langston right at home. I’ve also come to understand and follow his cues more.

Corinne: That’s what I’m talking about! Your consistent enthusiasm and ability to follow his lead makes all the difference. What is the most encouraging lesson you have learned from Easterseals to be able to help Langston during this difficult time?

Marsi: The most important lesson I have learned from you is to see moments as an opportunity for learning. For example, when we are asking, “What is Langston doing right now?”, I always try and figure out how can we turn that into a learning moment. That alone has helped me gain confidence in myself when I don’t have access to your professional help.

While we’ve been at home, I have found moments to practice words, fine motor skills, and practice movement like crawling in any routine and I’ve been able to teach him the things I remember you have taught me. And if he’s not feeling it, I say that’s fine and I just wait for the next moment. In the beginning I did have doubts. I remember thinking, ‘I don’t know if this is going to work out. I’m going to fail. They’re going to be disappointed.’ Then, I remembered your advice that he will give me the cues and that’s when I can help him learn.

When this pandemic is over, I’m going to cherish these moments we’ve had staying at home together. I’m also grateful to know that if push comes to shove and we have to stay home again due to a lock down, this time I know I can do it. I feel confident of that because of Easterseals. And I know Langston can do it, too. Just watch.

Corrine: Finally, what do you want people to know about the impact COVID-19 has had on your community?

Marsi: For my community, the one thing I want people to know is to take seriously the recommendations of social distancing, wearing a mask, and not going out unless you need to. I know it’s hard because we want to be free to do what we want, but we have to think of others before we think of ourselves. All I can do is do my part and I’m hoping that by doing that, I can help someone else be okay.

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