Tuesday, September 1, 2020

How I’m Helping My Child With Special Needs Navigate Remote Learning


My children always start school two weeks before everyone else. So after two weeks of e-learning—or what I am calling two-weeks “in the trenches”—I feel like I am ready to offer suggestions to all parents, but especially to parents of children with IEPs. 

As the parent of a child with disabilities who has an IEP, I was dubious, to say the least, about the school experience for my 8-year-old daughter. In the interest of fairness, because all of this is new for students, parents, and especially for teachers, I wanted to give myself time before I made any comments about e-learning. I made a commitment to reserve judgment and hold my comments about schools for the first couple of weeks. I fully expected remote learning to be a hot mess: chaotic and frustrating.

Spoiler alert: It was—and is—a hot mess. That said, I have figured out some tricks. Here are some helpful tips for parents of children with disabilities and IEPs based on my experience during our first weeks. 

  • Expect chaos. This is an unprecedented time and we need to give everyone, especially teachers and schools, patience and grace. Assume that the Zoom link will not work. Assume that your screen will freeze. Assume that your teacher will have difficulty loading programs. Assume that your child will be frustrated. Assume that your teacher will be frustrated. By assuming that everything will be crazy and expecting lots of glitches, you will be mentally prepared and, hopefully, calm. And having a parent that is calm and chill, is a great help to our children as they navigate e-learning. 
  • You are your child’s full-time aide. Assume that none of the usual aides or provisions will be working for your child and that you will be solely responsible for your child’s education. I know, I know—the law, ADA, IDEA, is all on our side. I get it! But the reality is that schools haven’t totally figured out how to do individualized plans for children with disabilities in this new space yet. And even the “plans” they do have are probably not adequately individualized for your child and their needs. The reality is that you will have to be your child’s aide, and it’s up to you to help create your child’s IEP. In the first few weeks, you should be looking for what works well for your child and what doesn’t. You will then present strategies that work to your school for your student. 
  • Only have ONE person at home serve as the aide. We are so blessed to have such a loving and supportive family for our autistic child. This means that mom, dad, both grandmothers, and even sister, wanted to help. In theory, “it takes a village.” In reality, during a pandemic, e-learning with a child with autism and an IEP, more people equals more chaos and anxiety! Again, no one really knows what they are doing. So trying to get multiple people in a house to “figure out” what is un-figure-outable, is a recipe for disaster. I promise, one person—maybe two—but no more than two “aides” to your child should be participating in e-learning. 
  • Document everything! Because this is all new and we are building the plane as we fly it, we need to take notes! Especially document what activities specifically aren’t working for your child. Just as important, you need to document things that are working. For our family, we realized that a yoga ball and e-learning DID NOT work for our child. The constant movement of the yoga ball stopped her from having the ability she needed to focus on the screen. 
  • Patience and calm is the goal for your child; not an academic success. You do NOT need to concern yourself with academic achievements now. Your only goal should be getting your child comfortable with this new environment and with the tools they need to participate. 
  • Do No Harm.” Everything about this process is new and many schools aren’t prepared. However, in the process of figuring it out, you need to prioritize your child. If the school is asking your child to do things that they are unable to take part in because of their disability (speaking, writing, interacting socially), don’t allow your child to participate if it will do them harm. They don’t need to hear they are “bad” or “not following directions” at the beginning of school. They need to be pumped up with affirmations and understand they can succeed. Do not allow their spirits to be damped by trying to follow requests that are beyond their ability. 

    For our family, this meant individualizing the class schedule. I choose to look at each session as optional. If my child is O.K. and the instruction is something she can follow, we participate. If my child is not O.K. and needs a break for whatever reason, we do not participate. This is not the time to worry about your child’s attendance and tardiness. Especially if your child needs order to function, it is better for them to skip a chaotic session than to be triggered and over-stimulated. Honestly, just skip the session, give your child a much-needed break, and try again in the next class session!
  • Process “best practices” with your child’s e-learning IEP team. We realized quickly that my child needs her 1:1 aide to do more and that me solely doing the work of her personal aide was not sustainable. Through troubleshooting with my daughter’s IEP team, we came up with the idea to have her 1:1 aide create a separate Zoom meeting link where they can work together privately, in addition to the general class schedule. 

All of these tips are based on our family’s first few weeks of school. And I guarantee that by the time you read them, some of the tips will have changed and evolved! The only thing that I’m sure of is that this experience will be chaotic for the foreseeable future. And, the best way to prepare your child for chaos “at school” is to be a calm, relaxing presence for their e-learning experience.

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