For Parents

The coronavirus pandemic has changed how our children will experience education, maybe permanently. Remember back in the spring, when we all thought our kids would be back in school by this fall (at the very latest)? Now, many of us are planning for an entire school year ahead without any onsite instruction.

Most of what I have read in the media thus far has addressed how parents of neurotypical children are coping with these changes. But families of children with disabilities are facing a whole host of new challenges, too. Some parents of children with autistic kids may already be feeling disillusionment with their school’s approach to special education in the pandemic.

So, that brings up the question: should you give up on your child’s IEP? Moreover, should you give up on the idea that they can make meaningful progress in general this year? Should you adjust your expectations for things like IEP meetings and reevaluations?

In this article, we’ll discuss these questions. We’ll discuss the ways parents can rise to the occasion, without burning out. We’ll discuss how to adjust to changes in your child’s education, without giving up on your goals and dreams.

What Should I Do About the IEP?

Chances are your child’s IEP goals got turned upside down sometime last March or April. You may not even know where to begin in regards to the new school year. The good news: you don’t need to give up on your child’s IEP. The IEP is a blueprint for you and for the team. It is a formal document, but it is also a living document. That means that you can make changes.

If your child’s annual IEP review is due this fall, consider using that time to reset the goals. You can do this in a way that is responsive to the impact the pandemic has had on your child. For example, your child may have regressed on a goal that it looked like they were about to meet back in February. Many children – including typically developing children – experienced regression and academic slide. Your child will not be alone in this. It is OK to take a step back, and reset some goals back to square one.

Your child may also be experiencing some new challenges due to the pandemic, that are not already in the IEP. This is also a good time to talk to the IEP team about adding in some goals to target these issues. You may want to think about (at least temporarily) closing out or pausing some of the goals that aren’t relevant right now. The right amount of goals to work on now might be less than what the right amount of goals was before the pandemic. Think about what your priorities are for the upcoming year. Think about your child’s shorter term needs first. Then, think about how those might fold into their future. For example, you might choose to focus on goals to build independent leisure time skills. You might focus on goals to increase your child’s independence with home routines. These are things that will benefit your child and you right now. But they will also benefit your child in the future. Working on increasing independent activities at home now can be generalized to independence in the school environment, later.

Your child’s IEP might not be due until next winter or spring. In this case, consider reaching out to the school team over the next month or so to talk about your options. It’s possible that your child’s IEP date can move up. Explain to the case manager that you need to reprioritize the goals on the IEP. Explain that this is due to how the pandemic has affected your child’s rate of progress. Explain that you want the team’s input and collaboration on how to rewrite the goals or write new goals.

Don’t worry, though, if it isn’t possible to move up the review date right now. Your next step is to reach out to the teacher and make a plan. The teacher can help make decisions about what goals to focus on. They can also help take baseline data for any new areas you want to work on. They can test out potential programming for those areas. The same goes for your child’s related service providers. For example, your child may have received speech therapy in their classroom before. Now, those services might be occurring via telehealth. You can work with them on setting goals for your child’s engagement in the telehealth sessions. Or, set up a schedule where you can be present to receive parent coaching. Ask for training on how to work on appropriate speech targets at home. Advocate for coaching that will be realistic for your home situation, your bandwidth, and your needs.

What Does Progress Look Like Now?

The truth is that the most challenging aspects of distance learning may still be ahead of us. It is more important than ever to pace yourself and your expectations. This is true for your child and for yourself. That doesn’t mean giving up, or settling for “less than.” It may mean measuring progress in different ways, though. For example, you will have increased opportunities to see how your child uses new skills at home. You may have more time to see them learning “in action” than you ever did before. You may experience the positive impacts of them learning a new skill they can use at home much faster than before.

What If My District is Late on Something?

There may be delays for reevaluations, IEP updates or amendments, and new referrals. If you are concerned that something critical is late, advocate for a solution. For example, ask what the plan is for reevaluations: will they be remote or in person?

Do you want your child to do their evaluations via Zoom (or a similar platform)? Or do you feel more comfortable asking for an extension? Or an alternative method of assessment, other than a standardized test? Can any evaluations happen via parent interview?

Remember that you and your child’s school team are both new at this. Special education in a pandemic is scary, because we don’t know yet exactly what it will look like. It’s also exciting, because we can explore new ways to teach kids with special needs. Parents can connect more closely to their child’s educational experience. Schools may figure out new ways to provide support to parents. They may consult parent expertise on their child’s development more. So: No, don’t give up on your child’s IEP.

Courtney Gutierrez, M.Ed., BCBA, LBA

Courtney Gutierrez, M.Ed., BCBA, LBA Courtney is a behavior analyst, educator, and writer in the Pacific Northwest. She has over fifteen years of experience in the field of autism services, and over ten years of master’s level experience in classroom teaching and ABA therapy. Her areas of expertise include infant and toddler development, parent coaching, ABA clinical leadership and training, P-12 special education, and case consultation for children and young adults with autism and other special needs. Courtney lives in Seattle with her husband and two children.

There are many ways to set up a home learning space for your child with autism. Many families have limitations like space, organization, budget, and multi-use rooms. This can make it difficult to set up a space that will be functional. It is important to think about your family’s individual needs. That way you can plan your home learning space around those needs. In this article, we will discuss how to set up your home learning space for success.

Think About Your Needs

Here are questions to answer in order to identify your individual needs for your home learning space:

1. How often will the space be used? For example, are you a parent who homeschools your child every day? Does your child with autism engage in home-based therapy every day, or nearly every day?

2. Will the space be used in other ways? For example, do you have other children who will be using the space? Are you converting a section of a bedroom, dining room, or living room? Is this a home office that you or your spouse also uses?

3. What is your budget for the space? This includes materials, furniture, and anything else you need to purchase to make the space functional.

4. What is your upkeep plan? Who will be responsible for organizing the space? Will you be resetting the space each day after your child is finished with it? Will they have clean-up responsibilities? How long will upkeep take?

Select Materials

You will need to identify what kinds of materials you need in your home learning space. The first thing to figure out is what the space will be used for. If your child is older, the primary material they need may be a computer. If you are participating in distance learning, the school may provide a computer for your child. They will also provide preset curricula and online learning platforms. If you are homeschooling, these are materials you will need to choose and procure.

In either scenario, your child with autism will likely require additional materials to help them succeed. Consider the following checklist when stocking your learning space:

1. Gross motor break activities: Does your child benefit from a yoga ball chair? How about a poster with stretches and exercises they can do while they’re on a break? Will you use a timer for outside play breaks?

2. Fine motor supports: Does your child need consistent access to fidget toys? Do they benefit from having a pencil and paper handy, even if the lesson is online? Do they like to take drawing breaks? 

3. Furniture: Have you thought about what a comfortable work space will look like for your child? Do they benefit from working at a table, a desk, or neither? Can you adjust which way they are facing to increase their ability to focus? If you will be helping them frequently, where will you sit?

4. Lighting: Make sure the learning space is well lit. This may require extra lamps if you are using a multi use space like a dining room or kitchen. Ensure the space is well lit from your child’s vantage point, as well as from your own. Be sure to account for seasonal changes in daylight.

5. Schedules and visual supports: You might need to create duplicates of schedules you already use at home. Or, you might need to make new schedules and visuals that are specific to learning at home. These visuals should be ready to go in the learning space. For example, your child may be earning a specific reinforcer for completing activities throughout the day. Or, they might earn a break every time they attend to a Zoom lesson for a certain amount of minutes. Establish visuals that outline this beforehand. Have them visible from your child’s spot within the learning space.

6. Learning activities: This may seem straightforward, but it’s worth thinking about. You need to determine your child’s priorities for this space. For example, will they be engaging mostly in academic learning activities? Or are they working on vocational skills? Maybe they are working on building play skills. Or maybe they are working on how to increase time spent doing independent activities in general. Your child could be working primarily on turn taking in conversations or in activities. They could be doing this one on one with a therapist, or with peers on Zoom.

If your child has a therapist working with them in the home, the therapist might supply a lot of these materials. Or, you and the therapist may need to have a discussion about what is needed and who will supply what. 

Establish a Routine

Once your space is set up, work on the schedule for ongoing use. This includes how many days your child will use the space, as well as a daily timeline. For example, your child might be OK using their bedroom as a learning space in the morning, and a play space in the afternoon. Or, they might need supervision for their learning time, and less distractions. In this case you might set up your kitchen counter or dining room table as their learning space. Will this be available to them for a certain period of the day? Or will the time they are engaging in supervised learning fluctuate from day to day? If others are using the space too, how will the space be shared? How might members of the family trade off? This is especially important when siblings are involved, or if you are utilizing a shared home office space.

After you have established the routine, be ready to make adjustments. For example, you may have decided that online learning will begin at 9:00am at the dining table every day. Perhaps your child then has unforeseen struggles getting ready by that time. Or, you might have trouble clearing the breakfast materials by that point. By adjusting your start time to 9:30, you may be able to solve the problem easily.

Now you have a framework to use when establishing a home learning space. By taking the above factors into account, you can set your child with autism up for success.

Courtney Gutierrez, M.Ed., BCBA, LBA

Courtney Gutierrez, M.Ed., BCBA, LBA Courtney is a behavior analyst, educator, and writer in the Pacific Northwest. She has over fifteen years of experience in the field of autism services, and over ten years of master’s level experience in classroom teaching and ABA therapy. Her areas of expertise include infant and toddler development, parent coaching, ABA clinical leadership and training, P-12 special education, and case consultation for children and young adults with autism and other special needs. Courtney lives in Seattle with her husband and two children.

If you are a parent of a child with autism, you may be in “survival mode” when it comes to family meals. Many modern families do not have regular sit-down family dinners. Busy schedules and more than one child contribute to a “whatever works” lifestyle when it comes to shared (or not shared) meals. But, for children with autism, family meal time can be a great opportunity to teach valuable daily living skills.

Teaching family meal time as a household routine can also help you add to your toolbox as a parent. For example, familiarity with a family meal time routine will help your child build skills for other settings as well. This could include times when you have guests over for dinner, when you visit a friends’ home for dinner, or even when you go out to a restaurant.

In this article, we will discuss some strategies you can adapt to your own family meal time. You can use these strategies on a timeline that works for you. For example, some families may aim for a shared dinner time that lasts for around fifteen minutes, three times a week. Other families may share a longer dinner once a week on Sundays, while being more flexible about meal times throughout the week.

Balance Variety and Familiarity

Meal planning can be a struggle even for parents who love doing it. Part of the difficulty with meal planning for a family is not knowing what your child will love or hate. Food aversions and refusals might not stay consistent over time, making it extra hard for you to plan. 

A good way to relieve the stress of meal planning is to have a few reliable foods in your pantry, fridge, and freezer at all times. This way you can experiment with different recipes for your “main” while still offering familiar sides. On some nights your child’s entire meal might be comprised of sides. On other nights they might surprise you by loving a new recipe you tried.

Encourage, but Don’t Force

Offer your child everything that is available for the meal (within limits for allergies, choking hazards, and any other health concerns). Encourage them to try new things, but don’t force them to. Additionally, especially for younger children, allow the option to spit out the first bite of a new food. Say something like: “You didn’t like it, and that’s ok! Good job trying a new food.”

If your child refuses to try a new food altogether, resist the urge to engage in a power struggle. Reaffirm that the new food is available to try, and move on. 

Allow an Alternate Activity

One major source of stress during family meal times can be the amount of time spent sitting down and eating. Children may become full faster than their parents, or bored. They may want to leave their seat before one parent has even sat down to their own plate. If you set a goal for your child to sit at the table for a certain amount of time, it is critical to set a realistic goal. It can feel counterintuitive to set a goal at a level you have already seen your child do. But implementing a goal for regular mealtimes is very different from seeing that behavior happen at random.

For example, if your child can sit at the table for one minute, set your goal for one minute at first. Then you will guarantee success for you and your child. You can increase the goal over time. For children whose current skills allow them to sit at the table for a very short time, have an alternate activity available in the same area. Dismiss them to play or do this activity while you finish your meal. This way you can still supervise them without halting the mealtime altogether.

Another way you can use this strategy is at the table itself. This can help if mealtimes are very aversive for your child, but they will tolerate doing other things at the table. In this method, the alternate activity is available to your child right at the start of mealtime. They can access it by simply sitting at the table. You might work solely on sitting at the table as a goal for awhile. Meeting your child’s nutritious needs would not be the primary goal in this method. Instead, meet their needs for nutrition at other times in the day. Use methods that have already been successful. Gradually, your child will build skills to sit at the table during mealtimes. Then you can introduce foods. Switch between food and the other activity, all right at the table.

Use Schedules and Rewards

Many families will use social stories, first-then schedules, or other visual schedules for mealtime. This gives your child extra cues for what is expected of them during the mealtime and what is available to them. It also helps you and other adults or caregivers in the home to be consistent.

Reinforcement is also an important part of teaching your child new mealtime skills. Make sure reinforcement is available for at least one skill besides eating. This could be:

1. Washing hands before the meal

2. Sitting at the table

3. Pointing to desired items

4. Making a comment to a sibling or parent

5. Saying “no thank you”

Reinforcement should also be varied. Use verbal praise and positive feedback as well as rewards like stickers or toys.

Additionally, try to steer clear of requiring your child to finish a certain amount of food. They should not have to ingest a set amount of food to be excused or earn a reward. Children’s nutritional needs can vary greatly from day to day. Just because your child ate an entire banana one night doesn’t mean they need that much food before satiating the following day. 

It’s OK to Modify

Try the best you can to set yourself and your child up for success by setting reasonable goals and limits. But, know that you may still need to change things on the fly sometimes. Avoid having your child sit at the table for long periods of time if they are not successful. This also applies if the rest of the family has already finished the meal. Have a strategy you can use to close the activity, like saying “Let’s give this one more try tonight. If it doesn’t work tonight, we’ll try again another time.”

You may also give yourself room to change plans at the last minute. Be ready to say: “Tonight we were going to have dinner together at home. But the weather is really nice out, so let’s take sandwiches to the park instead!” Or, you might get takeout after a hard day at work. You might make your child one of their favorite, reliable foods that night. Make these kinds of modifications when you need to. This will allow you more energy to teach mealtime routines and skills in the long run.

Courtney Gutierrez, M.Ed., BCBA, LBA

Courtney Gutierrez, M.Ed., BCBA, LBA Courtney is a behavior analyst, educator, and writer in the Pacific Northwest. She has over fifteen years of experience in the field of autism services, and over ten years of master’s level experience in classroom teaching and ABA therapy. Her areas of expertise include infant and toddler development, parent coaching, ABA clinical leadership and training, P-12 special education, and case consultation for children and young adults with autism and other special needs. Courtney lives in Seattle with her husband and two children.

We live in the future. You may have heard that phrase recently. As a parent in the 2020s, you may remember a time before smartphones. You may remember a time before iPads and tablets were a common part of therapy and education for your child. You now have access to more technological resources than ever before. But sometimes constant access to tech may seem like more trouble than it is worth. Here are some tips on how to make sure technology is working for you and your family.

Time Limits

Your child probably has some access to technology with you at home or while doing school or therapy. You may wonder how much is too much. You may wonder if you should be setting time limits each day for screen time that is available. I encourage you to reframe these questions a little bit. Instead, ask “how much variety of activity is my child encountering throughout the day or week?” For example, time spent interacting with a screen may vary from day to day. But is your child getting outside at least once a day? Are you and your child engaging in a short shared activity together at least once a day? Are you and your child engaging in a longer shared activity together at least once a week? These questions can be more productive than an arbitrary limit on screen time per day. And, they prompt you to think about other activities that can happen throughout the day.

Purpose

You are likely no stranger to the possible benefits of screen time for your child with autism. Technology may be a critical part of their therapy program or educational progress. Ask yourself what the purpose of screen time is within your family structure. The answer to this question may vary based on the activity. You might engage in screen time to have shared family leisure time, like during a family movie night. Or, you might be using a specific app on a tablet to teach and increase your child’s communication skills. Sometimes you might use a tablet to set up and following a daily schedule. Make a mental list of the different purposes of technology in your life. This will help you inform therapists and educators about your priorities for technology.

Content

Managing content goes beyond parental controls to ensure your child is safe online. (Online safety is also critical). Consider that the spectrum of online content that is available to your child can vary a lot. Technology diets can consist of anything from junk food to nutritious content. First, consider your child’s preferences when it comes to technology content. Once you know their preferences, you can then look at the most “nutritional” options. A video showing how to take turns might be more useful than a shorter video that doesn’t teach any new skills. Or, if your child already had screen time earlier, you might opt for the short video.

There are many ways you can assess how technology is working for your child with autism and your family. The areas discussed above can help you with this reflection process. Of course, it is important to pay attention to signs of technology addiction. One example is a total disinterest in any other type of activity. Another example is extreme distress when technology is not available. But for most families, as long as it is intentional, technology can be a great resource over time.

Courtney Gutierrez, M.Ed., BCBA, LBA

Courtney Gutierrez, M.Ed., BCBA, LBA Courtney is a behavior analyst, educator, and writer in the Pacific Northwest. She has over fifteen years of experience in the field of autism services, and over ten years of master’s level experience in classroom teaching and ABA therapy. Her areas of expertise include infant and toddler development, parent coaching, ABA clinical leadership and training, P-12 special education, and case consultation for children and young adults with autism and other special needs. Courtney lives in Seattle with her husband and two children.

Outside time is an important part of childhood development. Playing outside provides many opportunities to work on skills that might not happen inside. Outdoor spaces are places to practice following directions in new environments. They are places to learn lots of new words and connect those words to their real-life counterpart. They are places to practice interacting with other people in safe and respectful ways.

But getting outside is a project. And if you have a child with autism, the outdoors present many uncertainties. There are things to plan for. Is there a bathroom available? What about water? Even if you’re playing in your own backyard, it can be hard to plan fun and educational outdoor activities.

And what about materials for any activity you might plan? Preparing for a thirty minute outing to the local park can start to feel like you are packing for a three day camping trip. The following 5 activities don’t require any materials. So next time you want to plan a quick trip to the park with your autistic child, you can be “stuff free.” And you’ll also know you’re working on meaningful play and community skills.

1. Hide and seek. This is a great activity to play at a park with large rocks, trees, or even a play structure. If your child is not ready to hide independently, be their “partner” and play with a sibling or other adult. Practice hiding behind large and small items. Show your child the difference between large items that hide their whole body and small items that cannot completely hide them.

2. The alphabet game. This is a great activity to play when you are on a walk. Find an item that corresponds with each letter of the alphabet, in order. For example, “apple tree” represents the letter “a.” “Bug” represents the letter “b” and so forth. If you live in an urban area, try finding each letter of the alphabet on license plates and street signs as you walk.

3. Rock collecting. This is a great activity to play on a hike or at the beach. Try collecting a specific number of rocks to help your child practice counting. This is also a great opportunity to practice leaving things behind. If the beach has a sign instructing visitors not to take any items away, you can practice following this direction with your child.

4. Cloud gazing. This is a great activity to do in your own backyard, or after a tiring game of tag. Try finding geometric shapes (oval, circle, triangle) with your child. You can also practice more abstract concepts like animals, vehicles, and types of buildings.

5. Shadow puppets. This is a great game to play when you are walking on a sidewalk or another large flat space. First, point out your shadows to your child. Then, show them how to make a shadow puppet with their hand. If your child finds this activity really interesting, you can do a follow up activity at home. Get a flashlight and show them different ways to make shadows. Practice making shadows in different rooms and observe how they are different.

Going outside doesn’t have to be a huge undertaking. You may go outside with the plan to do one of these activities. You may find that you don’t have time for a specific activity, and that’s OK! Sometimes, walking to the park and walking home is more than enough of an undertaking. I hope this article will help you build your toolbox of activities you have in your toolbox “just in case.” Then, even if you don’t use them, you’ll feel more confident about planning outside time!

Courtney Gutierrez, M.Ed., BCBA, LBA

Courtney Gutierrez, M.Ed., BCBA, LBA Courtney is a behavior analyst, educator, and writer in the Pacific Northwest. She has over fifteen years of experience in the field of autism services, and over ten years of master’s level experience in classroom teaching and ABA therapy. Her areas of expertise include infant and toddler development, parent coaching, ABA clinical leadership and training, P-12 special education, and case consultation for children and young adults with autism and other special needs. Courtney lives in Seattle with her husband and two children.

If you have a child with autism, you’re no stranger to forms. You’ve probably memorized more than your fair share of rote family details. At a certain point, you might question the value of all that paperwork. As a provider of education and ABA, I am often asked this question by families. They are frustrated by the seemingly endless stream of forms to complete. This frustration is understandable! Here are some reasons why that boring paperwork is worth your time.

1. It helps providers make sure you have all the resources you need. Intake paperwork often poses boilerplate questions to every new family. These questions serve an important purpose though. They let your provider know what services you need that they may need to refer you out for. They may have a resource list compiled to help you find a specialist in your community. Different needs may be best served by different providers. 

2. It helps providers serve your child better. Providers ask a lot of questions at the beginning of services. This is because they are using the information you provide to adjust their methods to fit your child. The more information you provide, the better your provider can individualize services. Don’t be afraid to be too wordy. But, don’t feel like you have to include long answers. Sometimes a short, succinct answer will be more than enough. This can be especially true if you’ve had a lot of practice answering these types of questions already!

3. It helps keep you and your child safe (in two key ways). First, your providers must meet certain standards set by their regulating authority. This could be your state department of health. It could be the office of public education. It could be a certifying board in your provider’s field. Your provider demonstrates many of these standards in their patient records. Second, your provider will likely ask for more safety information than emergency contacts. This helps them quickly respond if an emergency happens during services. For example, for telehealth, they will want to know the hospital closest to your home.

4. It keeps your information up to date. The upside to filling and refilling out paperwork often is that your information is less likely to become outdated. This is important for basic information like email addresses and phone numbers. It is also important for information like allergies and medications. Updated reports from other providers may impact updates to treatment.

If you’re struggling to find time to complete excessive amounts of paperwork, you are not alone. Ask your provider if there are ways to merge the information, but don’t be surprised if that is not an option. It is often a rule that each form be completed by the family. Your provider may not have control over these requirements. Another strategy is to set up a meeting with your provider or someone from their office to fill out the paperwork together.

You may be asked for documents from somewhere else, like your pediatrician. If so, it can be helpful to give your provider an update. For example, let them know you have reached out to your pediatrician and you’re waiting on the response. This way your provider knows the paperwork is in process, even if they don’t receive it right away.

Courtney Gutierrez, M.Ed., BCBA, LBA

Courtney Gutierrez, M.Ed., BCBA, LBA Courtney is a behavior analyst, educator, and writer in the Pacific Northwest. She has over fifteen years of experience in the field of autism services, and over ten years of master’s level experience in classroom teaching and ABA therapy. Her areas of expertise include infant and toddler development, parent coaching, ABA clinical leadership and training, P-12 special education, and case consultation for children and young adults with autism and other special needs. Courtney lives in Seattle with her husband and two children.