This Special Life

Autism Advocacy & Support

For Parents

My Child’s Therapist Gave me a Ten Page Behavior Plan. Where Do I Begin?

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Behavior plans. If you have a child with autism, you’ve probably heard about these in some form. You ears might sometimes ring with acronyms that stand for some version of a behavior plan, a behavior support plan, or a positive behavior support plans. You might have received some training on what a behavior plan is and how it gets developed. But often, families are given a behavior plan and asked to implement it without any prior training. In this article, we’ll go over some quick tips for how to read a behavior plan and make it work for you.

Tip #1: Let yourself be overwhelmed.

Guess what? I have been practicing behavior analysis for 11 years and I still get overwhelmed when a colleague sends me a behavior plan. They are long. It is easy for the writer to slip into use of jargon. And they deal with sensitive content – usually the challenging behaviors of your child.

I even get overwhelmed by behavior plans that I myself have written. Why? These documents are intended to be rigorous. That is because the person writing the plan has to justify whatever intervention is being used. It a big deal to dictate what adults will do when a child “misbehaves,” and that is what behavior plans do. Of course, behavior analysts and ABA therapists don’t call it “misbehavior.” The essence of a behavior plan is to teach the child how to get their needs met, by engaging in positive behaviors – not challenging ones. But the behavior plan still has to say what to do when the challenging behavior occurs.

That’s why behavior plans have to include so much detail. By the title of this post, you might think ten pages is super long – but I’ve seen longer. And more often than not, these documents are single spaced!

So, it’s OK and natural to feel overwhelmed when you get that plan. Give yourself time to read it. Try reading it in a few different chunks. Try the first couple of pages one day, and a couple more each following day. Let your therapist know that you need time to review this plan before you can give feedback. Of course, there might be a reason for your review of the document to be time sensitive, such as an IEP deadline. If this is the case, try asking your partner, a friend, or another trusted individual to have a look at the document and help you review it.

In reading the document, don’t feel that the world hinges on every single word. Instead, try to read the document for its overall meaning and what it is telling other adults (including you) to do. Try to envision what is described in the document as happening in real life. Can you picture it? Based on what you know about your child, does it seem like it has a good chance of working in real life?

Tip #2: Ask for a cheat sheet.

OK, so now that you’re familiar with the long version of the behavior plan, chances are you might never read it in that form again. This is for a few reasons:

  • You’re unlikely to reach for a 10 page document when challenging behaviors happen.
  • If the behavior plan works, it will get updated very soon by the therapist to reflect your child’s success.
  • If it doesn’t work, it will get updated within a few weeks or months to try something else.
  • You and the other people on your child’s team can ask for training or coaching on the plan from the therapist. This is also something that your therapist may reach out to you to schedule.

Of course, scheduling a session to receive training and coaching on the plan takes time and work. It might not happen right away. But it is important to establish clarity on how to implement the plan as soon as possible. There is usually something in a behavior plan about parental involvement at home. Even if the behavior plan is school based, I have seen a lot of examples where the family does have some role. This might be in delivering reinforcement at home, for a contract that is met at school. It might mean the therapist is asking you to respond in a certain way when a behavior does occur at home. It might mean that you are being asked to send certain supplies or materials to school.

So, if you are on board with the behavior plan, but don’t want to have to keep track of the large and long document, ask for a cheat sheet. Ask your therapist to write this cheat sheet not only so you can implement it, but so that an older teen or babysitter could implement it, too. Even if you don’t have a babysitter, this kind of framing will help your therapist write something that is easy to understand. Ask that the cheat sheet not be more than one page if possible. I also find that bullet points are helpful. This is not the time for a long narrative.

Tip #3: It’s OK if you can’t do it.

What if you read the plan and you’re not sure you can do what it is asking you to do? That is OK. Often environments and routines look so different between the home and school or the home and the clinic that extensive adjustments need to be made. Sometimes families do need a completely separate behavior plan for the home environment. It can inform and be informed by the other setting plan, but it might not even be developed by the same provider. I have worked with several families where they had one team in the school environment and a totally different team at home. Both teams collaborated and shared their behavior plans with each other, and made edits accordingly, but the plans were written and implemented separately. This might be the right route for you.

What if a therapist is working with you in developing the plan specifically for your home, and you feel nervous about it being successful? I encourage you to be honest about that sooner than later. They should be able to work with you to develop something that meets your needs and what you are able to do in your home. Sometimes, this might mean taking a step back and doing some parent training with you on general behavior support strategies. It could mean putting the parental component of the individualized plan on hold until later.

You can and should ask for as much training as you need to be able to feel confident about implementing behavior strategies yourself. And, you can and should be honest about which strategies fit with your parenting philosophy, and which don’t. If something isn’t working in your home environment, it could be that adjustments can be made to the environment itself. But, it could also mean that the strategies need to be adjusted to fit your home environment. Don’t be afraid to have these conversations openly and honestly with your child’s therapist.

How to Shop When Your Child Won’t Wear a Mask

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All over the country, many popular stores now require face masks for employees and customers. Big brand companies including Walmart, Apple, Best Buy, Whole Foods and several others won’t let people inside without face coverings. This means a lot of difficulty for parents of autistic children who can’t wear a mask for a long time or will not put on a mask at all. Care takers of special needs children who have sensory issues may have to try alternatives to masks and/or in-person shopping altogether. Thankfully, there are some options available.

Mask Alternatives

Traditional masks might be too difficult for a child with sensory issues to get used to. Bothersome ear loops, scratchy textures, and breathing anxieties might be fixed with alternative face covering.

Face shields. These clear face coverings don’t have any earloops, don’t fog up glasses, and don’t come in direct contact with the face. These are usually attached by some sort of hat or headband, and may be more comfortable than a mask for your special needs child. Beware, however, that they will still have to maintain social distancing as the shield will not protect your child or others as well as an actual mask can.

Scarves. There are scarves becoming available on Etsy that can also be used as face masks. Several models do not have any ear loops, and you can find them in a wide selection of styles. They are easier to put on and take off, and won’t tug at the ears. This option can protect the face as much as the average cloth mask will.

Instead of In-Person Shopping

Consider finding other ways to get what you need without leaving home, or without entering the store, when possible. You may not always have this choice, but take advantage of it when you do. Check the websites for information such as curb-side or in-store pickup if you do not want delivery.

Have it delivered. Order as much as you can online. Many restaurants, retailers, and grocery stores often have delivery options that you can access online. You won’t have to leave the house, your can stay with your child mask-free, and save yourself from stress.

Curb-side pick-up. Alternatively, sometimes you need things right away, and in that case you may be able to do a curb-side pick-up. Place your order online, pay online, and drive to the location at the given time. When you get there, an employee will come out and get your information. They will then come out with your order. You won’t have to force a covering on your child, since you won’t need to go into the store. Just keep your child at about 6 feet away from others.

Pick-up In-store. Sadly, not every store will bring your items out, and you will still have to go inside. It is still a great option to pay online and have everything set aside for you. This will reduce the amount of time that you need to be inside, and reduce the amount of time your child will have to cover his or her face. 

Stand Up For Your Rights

Be aware that under the Americans with Disabilities Act (ADA), business may have to make reasonable accommodations for your child.  This may require that you call ahead to request a curb-side pick-up at a store that does not normally offer it. Do your best to follow guidelines, but also know your rights. Do not fall for false claims that state the ADA exempts people with disabilities from wearing masks in public. Public safety comes first under the law. Business can and should, however help under special circumstances.

Top Tips for Helping Special Needs Children Cope With Masks

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The coronavirus pandemic has created a number of additional challenges for the parents of children with autism or other special needs. The new mandates across the United States requiring everyone over the age of two to wear masks in public settings can be uncomfortable at best and triggering at the worst for those with sensory issues and/or difficulty adjusting to changes in routine. Autistic children in particular can feel overwhelmed with anxiety about breathing or seeing other in masks, or uncomfortable with the feeling of the masks on their mouth, nose or ears. There are ways to help.

What Can Parents and Caretakers Do to Help?

You can take a few steps to reduce the stress and discomfort that comes with mask wearing. To begin, talking with your child about it can help. The next thing that you can do is allow them to get familiar with masks. After that, have a trial run with different types of masks to find the most comfortable fit. Problem solve as necessary, and incorporate wearing masks into the regular routine. Here is a closer look at each step.

  1. Talk about it. Explain why it is important to keep themselves and others protected during this pandemic. Using a social story can help children see it in a positive light, and can help them to accept it as something others around them will also be doing. Using more than one social story or an activity can also help make the point and explain expectations. You can also demonstrate using their favorite toys and model wearing a mask yourself. Be honest about the discomforts, so that they don’t feel alone in disliking having to wear them. Let them know that it is worth it to you to keep everyone safe. Autism New Jersey has a number of helpful links to help parents communicate and help kids cope with masks.
  2. Let them get to know masks. Allow your child to touch and hold a mask with their hands. Gradually have them touch the mask to their face and then try wearing it, even if only for a minute at first. Show them how to properly put on and remove them. Considering doing this with a few different kids’ masks and increasing the amount of time wear very gradually. 
  3. Go out for a test. Pick a location that is not crowded and does not have a lot of noise, lights or other potential triggers. Wear masks and see how it goes for a short period of time, such as 15 minutes. If you need to make a change in the size, type or texture of the mask, do so for added comfort.
  4. Add it to the routine. If you have a visual schedule add a picture of a mask before going out. Try to normalize it as much as possible, and incorporate it into any other type of dressing or packing activity you would normally do before leaving home. Even if you will be able to social distance and won’t need to use it, make it routine.

Problem Solving

Allow time for feedback. Let you child express to you, as best they can, about how they are dealing with masks. Make sure that they know you understand how they feel and be patient. Not every child will easily adapt, and it may take daily effort over a period of time. Avoid pressuring them or forcing the mask if they are truly against it after extended efforts.

Teach them how to properly wash their hands, and stay at home when possible. Be sure to cover social distancing. The Autism Educators website is offering a free download that covers social distancing. 

Book Review: Heather Lanier’s Raising a Rare Girl

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Heather Lanier’s new book details the first few years of her journey raising a special needs child. In the book, Heather weaves together several strands of storytelling. The first strand is her daily life experiences raising Fiona. The second strand is about her family’s spiritual values. The third strand is a series of anecdotes about disability rights history. This approach creates a unique yet universal tale.

If you love prose, you will love this book. As soon as I began reading, it became clear to me that Heather is not only a natural writer, but also an experienced one. Heather doesn’t hold this back from the reader. She tells about teaching college level writing courses before and throughout early parenthood. I highlighted many long passages while reading because of their lyrical beauty.

Many mothers reading this book will resonate with Heather’s experience job hunting as a new mom. She interviews for tenure track positions while breastfeeding and sleep-deprived. Longterm, parenting a special needs child hinders her job prospects. She pulls no punches about this in the book. As readers we know the even longer term outcome. Heather started a blog and got a book deal. Then she published a memoir reviewed by the New York Times as a critical read for expecting mothers. Heather’s writing career changed paths through raising a child with special needs. It didn’t fall away completely.

Parents of children with autism will be able to relate to Heather’s experience in several ways. Her daughter has Wolf-Hirschhorn Syndrome (WHS). WHS is a rare genetic syndrome. It has serious impacts on both physical and cognitive development. WHS is a low-incidence disability and autism is a high-incidence one. But there are still many parallels for parents.

Heather and her husband bring Fiona to a conference for families of children and adults with WHS. The non-uniformity in every attendee with WHS is striking to Heather. They have the same diagnosis as her daughter.  But their individual ways of living with WHS are very different. Similarly, children with autism each impart their own way of being onto the world. They are not defined by their diagnosis. Heather’s writing insists on this value throughout the book. The world should embrace children with disabilities as individual humans. It should not categorize them according to characteristics of their condition.

Heather goes into detail about her experience interacting with the outside world. She describes encounters with parents of typically developing children in detail. In each encounter, she realizes again and again how much the other parent cannot relate to her life. Other parents complain about things she desires for her child, like talking too much. She details her unique difficulties breastfeeding. For example, night feedings continue for months longer than is typical due to Fiona’s small size. She notes how other parents complain about night feedings and rejoice when they are over. But they do this without any knowledge about what it is like for parents of children with special needs. 

These comparisons on their own would be eye opening enough. But Heather takes it a step further. Included in the book is the story of how her second, typically developing daughter Petra is born. Again, Heather pulls no punches in describing the differences between the two girls. She acknowledges that Petra develops without hours of therapy and medical scares. She doesn’t have to always be working on something to help her development.  But she acknowledges something else, too. By the time Petra is born, she has become at home in the world of Fiona’s atypical development. Thus, she is able to also be at home in the world of Petra’s typical development. She doesn’t feel conflicted or torn between the two. Instead, she expresses gratitude at living both experiences in the same household.

Heather’s experience with early intervention services will also be relatable. The same goes for her experience with special education. During the time covered in the book, their family moves from Ohio to Vermont. This is roughly the first five years of Fiona’s life. Heather is honest about the differences in services across the two states. She also goes into detail about differences across individual therapists. Her chapters on obtaining an AAC device are particularly interesting.  (Read more about Augmentative and Alternative Communication here.) She describes their weekly speech therapist as cautious. She describes their AAC consultant as much more bold. The consultant helps find a system that unlocks Fiona’s expressive language skills.

Heather also provides a crash course (or review course) in disability rights history. She does this through short examples and quotes woven alongside her personal stories. She also addresses her own privilege as a white parent in a two income household. When Fiona requires more intensive care, Heather is able to stay home for a period of time. (Though she also describes the challenges that come with that role). Heather also addresses ableism in mainstream parenting culture. She names her own ableism and challenges overcoming it.

Some readers may find one aspect of the book surprising. Heather spends a significant amount of time describing her husband’s spiritual life. Her husband is an Episcopal priest who also trained in Zen meditation. She uses this narrative as a vehicle to describe her own inner journey. This journey is specific to coming to terms with parenting a child with special needs. This may be the most unusual aspect of the book. Heather herself seems to have a somewhat ambiguous relationship to faith and religion. Yet, she embraces her husband’s career in the church as an integral part of her family’s story.

The last quarter of the book speeds up a lot in comparison with the first three quarters. The first part focuses on Fiona’s first two years of life in great detail. The last part describes her development and the family’s journey from about age 2 through 5. Some readers may find this a little jarring. But the book is so well written that if anything, readers like myself will wish for more rather than less. I hope Heather publishes a sequel in a few years that does a similar deep dive into her daily life experience. Also, the reader follows Fiona to the point where she starts kindergarten. I was happy Heather included this in the book. If the book had stopped when Fiona turned two, it would leave the reader wanting more.

I loved this book, both as a parent and as a provider. Parents of children with autism will find this a resonant read. Parents of children who are typically developing will find it to be illuminating. I also recommend this book for other educators and therapists. They will find a new avenue for empathy in Heather and her family’s story.

Raising a Rare Girl

A Memoir

By Heather Lanier

320 pp. Penguin Press.

Available in various formats on Amazon; preview the book here

Should I Give Up On My Child’s IEP?

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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.

How To: Set Up a Home Learning Space

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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.