Parent perspectives: How families with children on the spectrum are tackling back-to-school

With continued changes and uncertainty around school reopening plans, many parents with children on the spectrum are facing tough choices. Balancing the benefits of in-person learning, which is essential to some children’s development, with the requirements, protocols and risks to sending children back to a physical school is a challenge for so many. Some children on the spectrum have difficulty wearing masks or may not understand the necessity of social distancing, but for some, virtual learning poses a real concern for developmental progress.  The obstacles facing families are real and complex.

We recently asked parents in the Autism Speaks community how they feel about the upcoming school year. Here, they share their specific experiences and perspectives on in-person versus virtual learning.

Megan H., Mother to 10-year-old son AJ and 8-year-old son Asher

As a mother to two boys with nonverbal autism, I am very torn on how I feel about returning to school this fall. It seems like every day my thoughts and feelings change and there doesn't seem to be a perfect answer. Instead, we have plans that are doable. Plans we can make work. Yes, they will take flexibility and understanding and some creative thinking on my part, but they are manageable.

When I think about the boys returning to school, I am definitely concerned about their health. My boys are not at a point where they can wear their face masks all day. We live in a state where it is mandated, but the boys qualify for exemptions. However, it ultimately still puts their health at risk if they are unable to be in a mask while around others. My boys also have no concept of social distancing and so much of their work and school day requires one-on-one instruction and hand-over-hand direction. 

We also don't have the luxury of taking casual trips to the doctor for check-ups and there is no way we are having an easy experience getting a COVID test. Doctors’ appointments are very traumatic for the boys despite our best efforts. Things like temperature checks and taking medicine are major battles, so I can't even imagine how we would tackle the coronavirus. Not to mention, as a single mom to my two superheroes, there are no sick days for me. I have to show up and be present for the boys every day.

With all this being said, of course I have concerns still about the boys NOT being back in school. We managed to make last spring work, but it wasn't without its challenges. The concept of Zoom lessons and telehealth therapy was not easy for the boys to grasp. We ended up falling into a routine of the boys engaging with me and taking instruction from me, while the therapists/teachers coached me on what to do/what tasks they'd like to see. While this worked fine for the most part, I am not a special education teacher/speech therapist/occupational therapist/ABA provider/physical therapist, etc. There is no doubt in my mind that the boys would have progressed more had they been with these experts.

Ultimately, I feel fortunate to be in a school district that I trust. If they believe they can safely bring the boys in to receive instruction, then I will trust them. I know that at any point if they feel it is no longer in the boys' best interest to be in the school, they will let me know right away and we will change our plan. On the other hand, if our school decides that staying virtual is in the best interest of everyone, then I will respect that too. I know the school staff want to be back in the building teaching our children as much as we want that, but safety for all must be taken into consideration.

In these challenging times, I am not sure what the perfect answer is. Every state, every school district, every family, and every student is different. What I do know is that families with a loved one on the autism spectrum are resilient and creative. We don't give up. I'm not saying the fall will be easy by any means, but if we all work together and focus on flexibility, patience, and some outside-of-the-box thinking, I am sure we can make the most out of whatever situation we find ourselves in. 

Dekeda B., Mother to Leilani  

Five months ago, the pandemic threw us into the Distance Learning model, with no warning or preparation. To say that the change has drastically affected my 15-year-old daughter Leilani is an understatement. Having nonverbal autism and sensory processing disorder, she has relied on her school routine which includes targeted work with her teacher, occupational therapist, speech pathologist, school psychologist - and more! I had to split my "Mommy" role to accommodate what she was missing from school.   

In-person learning is so crucial for my daughter, but her health and safety are far more important. After struggling for the first month, I was able to develop some routines that have helped us with this "new normal": 

• When Leilani participates in her school lessons, I have to participate as well.  I am not able to send her to another room to work independently.  Because of this, I had to have an open discussion with my employer about my need to be present for her while still being present for work. 

• We utilized the same space to participate in class daily.  Consistency helped a great deal for us. 

• Don't forget: The IEP still exists - even at home! Don't forget to allow those movement breaks and other accommodations where possible.  

• It was evident that Leilani was not fully interested in watching her lessons on the laptop screen, so we connected the device to the big screen TV to project the sessions.  This was a game-changer and I suggest that you also give it a try! 

• Since you may now have more time at home with your loved ones, I encourage you to incorporate ADLs (activities of daily living) into your daily schedule.  Grooming, light chores and self-care can be a focus during this time.  When this is all over, your child can emerge with a few new skills under their belts, which will help to foster independence. 

These are uncertain times, but try to find a bit of light and hope on the darkest days! Patience and purpose! 

David W., Father to 9-year-old son Zakkary  

Virtual learning has presented a variety of challenges for our family. My wife and I were considered essential workers this past spring and this left us trying to find care to meet Zakkary’s unique needs and then cramming stressful work during the day. 

Doing class in person is vital for my son and for others on the spectrum. Personalized individual instruction is vital to progress in our kids’ lives. Also, without in-person instruction we are forced to choose between our careers or jobs and watching our children. For our son, we are unable to find a daycare who will care for his unique needs. Teachers are trained to teach our kids with specialized instruction which takes years of experience to perfect. I try my best, but I am not a Special Education teacher. We value their expertise. 

Kelly L., Mother to 4-year-old Tate and 5-year-old Layne

We have struggled with the decision to do virtual or in-person learning for this upcoming year. My husband has several health issues that make him high risk. Additionally, neither of my two boys on the spectrum will communicate if they are sick or not feeling well, which also makes me nervous. However, I know that the structure and face-to-face interaction is key for their development. Therefore, we have been mask training and we have decided that we will be sending our boys back to school for in-person instruction.  

The virtual learning we did last year was a mixed bag for my boys. Our schools were great in providing instruction, interesting lessons and material and special accommodations for them. However, one of my children has an adverse reaction to online videos of people and our poor internet out here in the country causes those videos to pause, which he also struggles with. Due to his sensory issues with the pausing, he goes into instant meltdown. I am very much looking forward to him not having to struggle with that this year.  

My other son will be in first grade this year. He did great with virtual learning last year, but I have a feeling that there will be a lot of rebuilding at the beginning of this year. For example, he never was able to memorize the one to five addition and subtraction problems last year and is still counting them out. He has a general education and a special education teacher at his school. This year, both of those teachers will be new so it is absolutely necessary for him to be there to build rapport with both teachers.

Kristen T., Mother to 4-year-old son Hudson

I cannot express enough how essential in-person learning is for my child, Hudson. He is a visual learner, so being around peers that are tasked with the same activity as him is EQUALLY as important as being in-person with an educator or therapist. 

In the past 5 months, I have learned so much. I am not a professional; I am not a therapist; I do not have the know-how and tools that these professionals have been taught or, more importantly, accumulated over time through experience in the field. But if asked of me, I will do my best at the job and I feel I have, but to what end? I will say – Hudson has done very well in his therapy sessions since COVID began. However, my son has experienced extreme regression with classroom structure. Sitting for long periods of time, participating in group activities, following directions - these are things he had somewhat mastered and has now completely lost. These skills are equally as important as therapy for my son’s success. These mastered skills are what will eventually allow him to be in a typical or integrated classroom. 

But, as much as I yearn for my son to be back in the classroom, I also question what sort of experience this upcoming school year will be for Hudson. What sort of impact will these school restrictions have on his learning experience and his willingness to connect with others? We recently toured a school we had hoped would be a good fit for him come September but seeing the spacing required between each child, the masks being worn by teachers and students was disheartening. My son needs connection.  He needs to see your facial expression; he needs to see the words you’re forming with your mouth in order to learn them himself. We are stuck in between wanting him to be back in school and being nervous about what kind of experience he will have with the new COVID restrictions and the long-term impact those restrictions may have on him.