It goes without saying that all of us have been touched by the COVID-19 pandemic. Big changes have come to the way we work, shop, socialize, and plan for the future. Big changes have hit families with children, too, as schools across the globe flex to provide instruction both in the classroom and with distance learning. Every parent and caregiver can describe the plethora of challenges for children of all ages. But there is one community of children who have been hit hardest – those are the children who relied on school to also take care of their very special needs.
Children with varying learning styles or disabilities, those on the autism spectrum, and kids who have physical, emotional, social, and mental impairment struggle the most. And that is in the best of times. It is important to recognize the services that are needed in each individual instance and assess whether those services can still be provided in this splintered array called schooling. In this article, we will assess what parents find to be most challenging and how the pandemic may also provide an opportunity. To do so we will examine the struggles of Miriam and her son Noah.
Big families may be unusual in the United States, but not in the Muslim community. Miriam and her husband are both from Yemen and live in Chicago with their seven children. There are five girls and two boys ranging in age from four to 20. Managing a full household is a challenge in any big family, with each person having their unique strengths and needs. One of the children has extra special needs. Noah, age eight, was diagnosed on the autism spectrum when he was two. Miriam had always noticed something was a bit different for him – in his lack of eye contact, in his speech delay, as he missed developmental milestones the other children had mastered ahead of schedule. When Noah finally got tested, pieces of the puzzle started to fit together.
Special Needs Children Have a Right to Services
Throughout the U.S., children with special needs have a right to services. In Cook County, Illinois, there was access to diagnostic assessments, special schools, speech and physical therapy. Miriam and her husband had to get up to speed to understand how to handle Noah at home and to be his advocate within the school and social service systems. “And it is imperative that there is regular coordination between the home and school,” she emphasized.
Children who access special services through the public education system are provided with an IEP (Individualized Education Plan) each year. The IEP lays out developmental goals (physical, social, emotional) and measures to attain them. Parents have a special role to play in order to ensure that efforts at home and school are consistent. But the process of getting there can be intimidating. Miriam described the initial meetings with Noah’s school and IEP team as scary. “I would go in nervous and unequipped. It was hard to hear that your child is struggling so much . . . I was made to feel like we were both failing.” Rather than drown in her own mix of emotion and exhaustion, she got to work. “The most important thing for a parent to know is their rights and the rights of your child.”
Finding Local Resources
Noah started getting services initially with support from the Easter Seals Foundation. He entered an early childhood program at a local school that had a high teacher-to-student ratio; back then he had his own aid to assist with social and emotional learning. And there was a need to attend to every little detail. Noah frequently had meltdowns and trouble dealing with his surroundings. He was bothered by noise and struggled with normal physical needs like hunger and using the bathroom. And then the services maxed out as he got older.
Transitions are also more challenging for Noah. Moving to a new school and getting to know new teachers and therapists takes considerable time and effort. When Miriam was asked if Noah’s needs are currently being accommodated this school year, she quickly responded, “No, for sure no. Coronavirus has been very tough on us. We had felt like Noah was finally thriving last school year and then the pandemic hit and everything changed. I fretted a lot about that but now I realize that it was probably the best timing, Alhamdu lillah. He probably wouldn’t have been able to make it otherwise.”
All of the children in Miriam’s family are engaged in distance learning now. She has had to stock up on devices to accommodate all of the screen time and become a master organizer to keep on top of everyone’s schedules. Noah is online for several “classes” and there are good days and bad so far. Some of the services that he was benefitting from - things like physical therapy and occupational therapy - are no longer available in the distance.
Noah benefits from services provided by the public school system, but he also has frequent visits by a behavioral therapist. These visits the family had to arrange on their own and they are costly. Miriam talked about the fact that autism is often likened to a puzzle. She didn’t initially understand the reference, but fully agrees with the symbolic link now.
Change Is a Constant
Everyday, challenges abound, especiallly as Noah gets bigger and stronger. COVID-19 has kept Noah at home, protected from the threat of the disease. With his fragile autoimmune system, the tendency to put his fingers and everything else in his mouth, and his inability to wear a face mask, learning from home has been the best possible solution. It has also presented an opportunity for Miriam to learn more about him and for everyone in the family to play a role in his progress forward.
More changes may be around the corner though. The Cook County Board of Education will make decisions about bringing children back into the classroom next month. How the family has to deal with Noah’s education needs has implications for Miriam’s other children and their schooling as well.
Miriam is sharing Noah’s story with the hope that it also helps other families who are struggling to learn more about their special children and their very special needs. She provides interviews and offers advice, particularly because she has experienced the damage that comes from stigmatizing special needs families within the Muslim community. “Allah has created all of us unique and special. That is so we can get to know one another. Our community should not create barriers for either a parent or a child.”
Parents Must Be Advocates
It is important that parents get the information they need to make sound decisions and to be advocates for their children. Here is a list of resources that Miriam has found helpful for her autistic son Noah and her family.
MUHSEN H3
Muslim non-profit organization that advocates for special needs. Educators implement programs and services across North America, improving experiences in mosques, conventions, and weekend schools for people with disabilities and their families. They also have family and caregiver support groups.
Autism Little Learners
https://www.autismlittlelearners.com/
A great resource with advice and resources to help you and your child communicate.
My Autism Team
The group provides a social network for parents with kids with autism (great for support, practical advice, and insights).
The Mighty
The Mighty is a safe, supportive community for people facing health challenges and the people who care for them. In addition to extensive information about autism, the site also includes information about cancer, chronic illness, other disabilities, mental health, rase diseases, and more.
Local Facebook Parent Support Groups H3 Header
These are a Godsend. You never know who has done extensive research and/or come across certain things that might not be so popular. No one does better research than a mom who needs answers!
UPDATE: Miriam, Noah, and his siblings completed the 2020-21 school year with a combination of distance and in-person learning. And there were definitely ups and downs. They are gearing up for the start of a new year and strategically planning accordingly. For more tips for a smoother transition, check out Minimizing the Stress for Children with Special Needs.
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