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Courtney Gutierrez, M.Ed., BCBA, LBA

Sensory Friendly Rain Gear

January 13, 2021 by Courtney Gutierrez, M.Ed., BCBA, LBA

Kids playing in rain. Child on rainy day.

Don’t let bad weather keep you from getting outside with your kids. In today’s post, we’re rounding up family friendly outerwear. Here’s what you’ll need to stay warm and dry when it’s cold and damp:

Rain Suits

Rain suits have become quite trendy with parents of young children in recent years. Have you ever outfitted your child in a raincoat and rain boots, only to have them fall on their knees in the mud? Enter the rain suit. Rain suits protect your child from head to toe. You can let them run, jump, and fall down in the rain and mud without worrying about moisture seeping through their pants. Rain suits can be off-putting for parents because of the cost. Your child may outgrow them quickly. They also take more room to store than regular rain coats. But there are budget friendly options available like this one. You can also usually find these items for resale through local social media groups.

Some kids with autism may find the sensory experience of wearing a rain suit to be unpleasant. Or, it may be too much of a struggle to dress in a one piece suit (and remove it once playtime is over). Fortunately, there are two piece rain suits available as well. Here is an example.

Headbands and Hats

You’ve probably heard before that heat escapes the body through the head and feet. Rain boots are a relatively easy staple to keep track of, but the same can’t be said about head gear. Additionally, knit hats that are sensory friendly and will stay on during outdoor play can be hard to find. A practical, budget friendly solution that works for lots of kids is the ear warmer or ear band. If your child is wearing the hood of their rain coat, they’re already protected from moisture – so a hat isn’t necessary. An ear band keeps them warm while the hood does the work of keeping them dry. Hang the ear band over a coat hook or hanger when you come inside to keep it handy for tomorrow’s trip outdoors.

The Right Socks

Rain boots, while waterproof, aren’t so great at insulating your child’s feet from the cold. Socks made from merino wool are perfect to pair with rain boots on cold days. Merino wool keeps your child’s feet warm, and also helps regulate body temperature. Look for budget friendly options or size up and look for sales to get more wear out of pricier pairs. 

Other clothing made from merino wool can help when temperatures fall even lower. Look for base layers your child can wear under their play clothes and outerwear.

Accessories

If you have young children, you are probably bringing at least some equipment with you when you leave the house. If you are taking a walk with littles and you have a stroller, consider a stroller rain cover. I have one that is specific to the brand of stroller that I own, but you can easily find universal options as well. Additionally, a waterproof blanket or water resistant stroller blanket like these ones can provide additional warmth and protection.

Finally, a waterproof backpack will help you keep snacks, your phone, and any other belongings dry as well. This is especially helpful if the weather where you live is unpredictable. You might head out when it’s dry and then have to run back home during a downpour. Depending on your child’s needs, you may also need to have things like visual supports and reinforcers with you while you are out. A waterproof bag or backpack ensures those things are ready and intact should you need them.

Now you’re ready to hike, puddle stomp, go on a scavenger hunt, or visit your local park. Have fun out there!

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.

Filed Under: For Parents

5 Opportunities to Teach Flexibility

January 8, 2021 by Courtney Gutierrez, M.Ed., BCBA, LBA

Smiling mother helping adorable son doing homework

“Being flexible” is a skill children with autism may struggle with often. “Being flexible” means dealing with a change to what was planned or what was expected. These changes tend to present themselves at the last minute. This can make it especially hard for your child to cope. It’s hard for anyone to continue to take part in a task or activity when it isn’t going as planned. For children with autism, these difficulties are magnified. For example, your child might have a meltdown when their favorite item at the drive thru isn’t available.

Situations where your child must be flexible in real life are last minute by nature. This means that practice is essential. Basically, you take a low stakes situation and turn it into a chance to show flexibility. The more you practice being flexible with your child in non-stressful situations, the more flexible they can be when stressed. Here are 5 opportunities to practice being flexible. These are common or easy to create in daily routines:

1. Vary the steps in your morning routine. This works for any daily routine that has many steps that occur in arbitrary order. It is tempting to follow the exact same routine each day. In fact, this predictability might be something you do on purpose. This helps your child learn independence or self regulate. But, if you are working on flexibility, considering varying the steps in the routine. This could mean starting with brushing teeth instead of getting dressed. You could clean up the playroom before dinner instead of after. Or, switch who handles which chore. Take turns being in charge of setting or clearing the table, for example. Varying the steps as a habit will help your child better deal with last minute or unexpected changes when they do happen.

2. Present two preferred options to choose from. Giving your child choices helps them learn to be flexible by selecting one option while they have to leave the other behind. This helps them learn flexibility in a situation where one preferred option is truly unavailable. 

3. Pause or stop a fun activity for a short time. Work on introducing “spontaneous” interruptions to a preferred activity. For example, if you are reading a lengthy book with your child, you can pause the activity to do a short task like check on a meal that is cooking. Practice having your child wait for you to come back. This helps teach flexibility in a situation where something is delayed or interrupted. This is especially important when there is no known end time for the interruption.

4. Insert a neutral step into the day without prior planning. Again, teaching your child the schedule of the day and following it is important. But when you are working on flexibility, it’s good to introduce small activities or tasks that weren’t communicated at the beginning of the day. You can also prepare your child at the beginning of the day. Tell them “today we will have a surprise activity” so they aren’t completely caught off guard. 

5. Skip over a step or a page “accidentally.” Skip a page of a book you are reading, or “forget” to bring silverware to the table at lunch. Coach your child on how to effectively communicate what happened and remedy it, without getting too attached to a perfect outcome. This will help your child deal with situations in the real world where a teacher or peer forgets or skips something accidentally.

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.

Filed Under: For Parents

Sample Daily Schedules: At Home Learning

December 30, 2020 by Courtney Gutierrez, M.Ed., BCBA, LBA

Mother and daughter learning math at home

If you’re at all like me, back-to-school 2020 hit like a ton of bricks! I find myself still in adjustment mode both as a parent and an educator. I thought I was prepared after a few months of remote learning in the Spring, but everything feels totally different now. I’m still figuring out why. One of my theories is that our bodies and brains are no longer in survival mode. But the needs of our children, now that summer is over, require immense energy and innovation. This goes for their general daily needs as well as their educational needs. These two things are more enmeshed than ever. And, that immense energy and innovation is required of us as parents as well as our child’s providers.

I personally am finding articles written by parents and teachers to be a good source of inspiration these days. My energy is at least a little renewed when I read about how others are coping. So, in today’s post, we’ll be tackling one area of at-home learning: the daily schedule. My hope is that providing some examples will inspire you, a fellow parent in the back-to-school trenches. These schedules are intended to be modifiable. As always, accommodations and modifications are a critical component of successful education for children with autism and other special needs. You can adjust them to fit whatever schedule your school has provided for your child. After the schedules, you’ll see three extension strategies to help you adapt these long-term.

Schedule 1 (for the early riser)

  • 7:00: Start morning routine
  • Use a light-based clock like this one or this one for kids who wake up early and need to know when to stay in their room and rest or read, and when it’s OK to get up.
  • 8:00: Start school day
  • Many schools are doing two to three hour blocks of “live” or “synchronous” school in the mornings. These are broken up like:
    • 8:00 Morning Meeting
    • 8:30 Reading / ELA
    • 9:30 Break and Snack
    • 9:45 Math
    • 10:45 Class Check-In
    • 11:00 “Sign Off” (many teachers will instruct students to de-video and mute themselves during this time, rather than exit the meeting completely, before they walk away from the computer)
  • 11:00: Lunch
    • I suggest making snacks available before lunch time, especially if your child is an early riser. This way they won’t be starving once lunch time arrives. Experiment with making the lunch block longer – 90 minutes to 2 hours – to facilitate rest and exercise time as well.
  • 1:00: Second half of school day
    • Example afternoon block schedules might look like this:
      • 1:00 Science or Social Studies
      • 2:00 Small Groups / Rotations
      • 2:45 Independent learning time
      • 3:30 “Sign Off”
  • 3:30: Parent-child check-in
    • This is a good time to see if your child has any homework or outstanding assignments. You can make a plan with them to complete the activities necessary, whether it’s on the same day or later in the week (many school districts are assigning Wednesdays to be fully independent, with no “live” classes).
  • 4:00: Afternoon activity: get outdoors if possible. If it is not possible to go outside, help your child select a specific activity to do together, such as a short puzzle, board game, or LEGOs. Spend about ten minutes “front loading” your child with attention and coaching at the beginning of the activity. Then, if they can sustain play for the next ten to twenty minutes, that gives you time to step away to start dinner, close out work emails for the day, or tend to another daily task.
  • 5:30: Dinner
  • 6:00: Bedtime routine (includes shower or bath)
  • 6:45: Reading time in bed
  • 7:30: Lights out
    • My children fall asleep with the light on. We have other cues that represent “lights out.” For my son, this is setting aside the book he is reading on his tablet. For my daughter, this is putting away her books and getting tucked in with her pacifier and stuffed animal. I go back in later before I go to bed to turn the light off.

Schedule 2 (for the midmorning riser)

  • 9:00: Start morning routine
  • 9:30: Start school day
  • If your teacher isn’t starting the morning meeting until 9:30, this should work fine. Or, if you are homeschooling, you can adjust the start time to fit your needs. Additionally, your child’s school day might not start with a morning meeting – students might be expected to do independent work in the mornings. This could allow a later “start time” for your child. Talk to your teacher to find out your options.
  • 11:30: Lunch
  • 1:00: Second half of school day
  • 3:30: Parent-child check-in
    • This is a good time to see if your child has any homework or outstanding assignments. You can make a plan with them to complete the activities necessary, whether it’s on the same day or later in the week (many school districts are assigning Wednesdays to be fully independent, with no “live” classes).
  • 4:30: Afternoon activity (outdoors or indoors)
  • 6:00: Dinner
  • 6:30: Bedtime routine (includes shower or bath)
  • 7:15: Reading time in bed
  • 8:00 – 8:30: Lights out

Schedule 3 (for the late sleeper)

You may have a teen in your household who tends to stay up later and wake up later. The schedule above can still be adjusted to fit a much later wake up time. However, managing the later night bedtimes can be a bit more difficult. If you have a child who can do independent leisure activities for a couple of hours before going to sleep, the following schedule may work for you.

  • 10:30: Start morning routine
  • 11:00: Start school day
  • This time frame obviously isn’t likely to work if you are participating in a public or private school program, but check with the teacher just in case. If your child requires more radical schedule modifications to be successful, they may be able to facilitate an alternate schedule with you.
  • 1:00: Lunch
  • 1:30: Second half of school day
  • 4:30: Parent-child check-in
  • 5:30: Late afternoon / early evening activity (outdoors or indoors)
  • 7:00: Dinner
  • 7:30: Bedtime routine (includes shower or bath)
  • 8:15: Independent activities and reading in bedroom
  • 10:00: Lights out

Extension Strategies:

Cut: You will have days when there are just too many activities in the schedule. You might end up skipping whole blocks that are on the schedule (like the afternoon activity, if your child had a longer homework assignment that day). Or, you might find that the morning learning session runs all the way into the lunch period. You can cut out the longer portions of the lunch time to get back on track with the afternoon schedule if this happens. If you find that an activity is running behind early in the day, plan ahead to what future blocks in the day you can cut.

Expand: Similarly, you’ll have days when there just doesn’t seem to be enough to do to fill every block. These are great days to bring out some of those rainy day activities: puzzles, play dough, and baking brownies or muffins from a box. You can also extend certain academic activities. For example, play the audiobook version of the book your child is working on reading. For children who are just starting to read, you can find Youtube readings of lots of popular early readers online. For the late afternoon and before dinner period, you can expand activities by involving your child in the set-up and clean-up process. For example, if you are going for a walk, help your child go through each of the prep steps. They can get the water bottles ready, find jackets, put on shoes, and find keys. Coach them through each step and provide the help needed. This takes a long time, but if you have extra time to fill anyway, it’s a great way for them to practice new skills. 

Move On: Many families get to a point where they are ready to move on from an exact schedule. You may find you get into a daily rhythm and routine that works pretty well. If you are able to modify it as needed on a day to day basis, you can let go of the hour by hour breakdown. Just be ready to re-integrate it at the next transition (when school onsite resumes for at least part of the week, for example).

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.

Filed Under: For Parents

Zoning Your Home

December 25, 2020 by Courtney Gutierrez, M.Ed., BCBA, LBA

Mother and child in bed

Let’s talk about zoning your home to support your kids with autism. This strategy works well for a lot of families. We’re not talking about zoning for construction or renovation. Zoning your home for success is a lot more simple than that. Setting up zones in your home can help your child with autism understand their environment better. Zones help identify expectations for appropriate behavior, so you don’t have to. Zoning your home will take some time, trial, and error to set up. But, it pays dividends for a lot of families in peace and efficiency.

Why Zone?

You should consider zoning your home if:

1. Your child responds well to zones in another environment (such as at school or in their ABA clinic)

2. Your child is more calm when there are less distractions in the environment

3. Your child responds well to visual cues or signals (like a picture of a toothbrush and bathtub on the bathroom door, or a picture of shoes on the door to the backyard)

4. Your child demonstrates signs of stress in new or confusing environments

5. Your child has difficulty staying on track with routines when you are not present to direct them

6. Your child seems overwhelmed by lots of verbal directions

What is Zoning?

Zoning is setting up your home so that each area is clearly divided by purpose. There are many ways to zone. Here are some examples:

1. Zone by room: this is the most common way for lots of families to zone. This is because it follows the natural layout the home already has. Zoning by room means making the purpose of each room clear: the bedroom is for sleeping. The dining room is for eating. The playroom is for playing. The office is for homeschool or remote learning. The kitchen is for cooking or baking. It’s helpful to keep as many rooms as possible having only one purpose. That way it’s easiest for everyone to understand and follow the expectations of routines for each room.

2. Zone by area: this is the way a lot of teachers zone within their classrooms. Zoning by area is a great way to workaround small spaces like apartments. It can also work well for homes with open floor plans. Additionally, zoning by area can work well for families with multiple children sharing bedrooms. In zoning by area, clear visual markers are used to divide spaces within the same room by purpose and by person. For example, your dining area might be for homeschool or remote learning AND mealtimes. An easy way to zone the dining room by area is to use two colorfully distinct tablecloths. One tablecloth can be used during school time and one can be used during mealtimes.

3. Zone by materials: zoning by materials is another way to maximize a small space. This is also helpful when you have a lot of spaces in the home that need to function for multiple purposes. Zoning by materials means limiting what you put in a room to one purpose and storing everything else. For example, you might want your child’s room to function as a supervised play space during the day. But, you need to remove distractors at night in order for them to fall (and stay) asleep. Zoning by materials is a relatively simple way to deal with this. Select the toys that you want to be available during playtime, and put them in plastic storage bins that are easy to move around. Move the toy bins to the garage or another room at night. Bring them back out the next day when it’s time to play.

How to Zone:

Now that you understand why zoning can be useful, you might want to try it in your own home. Here is a brief outline of the process to use to set up zones. You can modify this checklist depending on what type of zoning you are doing. Additionally, there is no need to limit yourself to one of the three types of zoning described above. You can mix and match according to what works best for you and your family. One strategy might work well for certain rooms in your house. Another might work especially well for one floor. Also, you can zone according to other methods as well. The methods listed here are just a start!

Checklist to Zone:

1. Review each step of your daily routine. Are there areas where your child with autism seems confused or overwhelmed? Could adjusting the environment help?

2. If yes, identify the room associated with the routine or activity.

3. What is in the environment now? Take the time to actually visit the room and look around. You might be surprised by what you find. Often, things you have learned to overlook each day could be distractors for your child. Make a list of what is in the room. Mark the things that don’t serve the primary purpose or purposes of the room.

4. Clear out the things that are not necessary. See how your child responds.

5. If more adjustments are needed, make a plan. You may need to obtain additional materials – such as the multi-colored tablecloths or plastic storage bins mentioned above.

6. Teach your child how to use the room and its contents now. This is the most important step. It’s likely that your child will need at least some coaching on what to do in the room, now that you’ve cleared out distractors. They will need clear expectations about any new materials you introduce. You can also take this opportunity to reset expectations about behavior that is expected in the room in general. You do not need to use the word “zones” when you do this teaching. Use whatever communication system and vocabulary is easiest for your child to understand.

7. Monitor your child’s response to the newly adjusted environment, and continue to make adjustments as necessary.

Now you are ready to zone!

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.

Filed Under: For Parents

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

November 20, 2020 by Courtney Gutierrez, M.Ed., BCBA, LBA

Stressed man with paper work

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.

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.

Filed Under: For Parents

Book Review: Heather Lanier’s Raising a Rare Girl

October 14, 2020 by Courtney Gutierrez, M.Ed., BCBA, LBA

Book cover of Heather Lanier’s Raising a Rare Girl

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

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.

Filed Under: For Parents

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