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Katie Kralovic
EDU 321
Roadmap to Holland

Road Map to Holland is a story about a family who experiences a dramatic lifestyle

change when one of their children is discovered to have Down syndrome. Jennifer and Tom

Groneberg, husband and wife, live in the mountains of Montana with their three sons Carter,

Bennett, and Avery. The majority of the story takes place within their single-story home and

follows the constantly changing routine of their lives. Both parents are writers; Tom full-time and

Jennifer part-time. When it is announced that they are having twins, Jennifer quits her part-time

job to focus completely on her pregnancy and raising their first son, Carter. The story is told from

the emotional perspective of Jennifer as she relives the first couple of years with the twins; from

the moment their world is flipped upside down with the news that Avery has Down syndrome, to

the moment they realize that pure, unconditional love finds a way to make things right again.

This book was for me like the opening of heavy curtains on a sunny day. A world I knew

very little about was suddenly made visible through the skillful tale of a woman living a not-so-

typical life. The way in which the story is told allows for such visual and emotional connection

that at times made it difficult not to tear up with empathy. This book made me seriously rethink

some misconceptions I had about children with Down syndrome; it allowed me to see more

clearly that it is more typical than not for children to grow and develop at different paces, and

that just because some grow at a slower pace does not mean they are less intelligent. It also gave

me a glimpse into the emotional and stressful life of parents of children with disabilities,

allowing me to develop a deeper respect for those who must march to the beat of a different

drummer, and endure judgmental looks and behaviors directed toward them and their children.
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Family life cycles exist in every kind of family, however, depending on the individuals

involved, the stages and transitions of the family life cycle vary. For Jennifer and Tom

Groneberg, they experienced a significant period of stability in the early years of their family.

The birth of Carter signaled the typical stage a young family enters as the family expands, which

brought on the transition from two couples caring for each other, to two parents caring for a

child. This stage lasted approximately four years, until Jennifer discovered she was pregnant

again, this time with twins. Here, without knowing it, they began the stage of their family that

involved raising a child with a disability. This transition was extremely difficult for them due to

the fact that they discovered Avery had Down syndrome only after his birth. Jennifer notes that

when she first told Tom the news she feared their marriage was at risk of falling apart because of

how unbelievable the unfolding events were. This clearly shows their beginning experience of

what is called the “grief cycle” as they come to terms with the knowledge that the way of life as

they had known it was about to change indefinitely, and in the realization that they would have to

throw away all the hopes and dreams they had for Avery.

As the Groneberg’s adjusted to this sudden change, certain rules had to be re-evaluated.

For instance, Jennifer realized that she would have to stay at home indefinitely while Tom

worked to ensure the three boys received the care they needed. On a deeper level, some of her

personal assumptions of life changed as well. Before Avery was born she held certain

misconceptions about individuals with Down syndrome and looked at them with a degree of

judgment. These misconceptions changed dramatically, however, as she learned that there are

more similarities than differences between children with Down syndrome and children without,

and began to see them as people first. Tom also made some rule accommodations in that he

began to help Jennifer more with daily chores and shopping trips. This shows that stages and
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transitions have an impact on both parents of a family. In addition to the expansion of their

family with two new members born, and more involvement from friends and relatives, one

particular individual “exits” their life cycle—Jennifer’s neighbor “Cathy”. It is unclear as to why

it happened, but after the birth of the twins Cathy cut off all communication with her friend, and

avoided her while out in public. This affected Jennifer so deeply that, years later, she reflects in

her book just how much she still misses her.

Within every family there are eight functions that the individuals rely upon to fulfill their

basic needs. Of the eight, “daily care” refers to the day-to-day activities and routines that

individuals of a family engage in to fulfill basic physical and health needs. These routines

provide the stable, structured foundation for each day that ensures a degree of reliable

consistency necessary for family function. When daily care routines experience a dramatic

change without smooth transition, the basic physical or health needs of family members become

compromised as the family adjusts to the change. The Gronebergs experience this rocky

transition when the twins are born prematurely, and even more so when Avery is discovered to

have Down syndrome. Jennifer provides numerous examples of how this daily care evolved as

they adjusted to the new demands of the family. Particularly in the beginning, the dramatic jump

from comfort to chaos was overwhelming for Jennifer, and she found herself slowly drowning in

the high demands of her family’s needs. The twins alone required constant supervision and care,

with pumping milk every couple of hours taking up a large portion of her day. Not only this, but

at the beginning Avery’s apnea monitor alarm went off at random, adding a degree of anxiety and

stress to Jennifer’s daily routine. To prevent the idea of favoritism or neglect, Jennifer also had to

give Carter, her four year old son, the attention he needed at his young age. This entailed doing

learning activities with him such as reading, writing, art, and occasionally music. To help Carter
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understand what was going on, Jennifer tells of the moment she had “the talk” with him, about

how Avery would develop at a little slower and different pace than Avery’s twin or himself. His

response, that little things grow big with love, shows the innocent, unconditional love he has for

his brother. Eventually the added support of friends, family, and professionals provide the

physical, emotional, and material needs that allow for healthy family development, making the

demands of daily care more manageable.

As families adjust to change, members respond differently depending on their role in the

family. Jennifer’s initial reaction to the discovery that Avery has Down syndrome is one of shock

and disbelief. She is unable to take in what this means for her son, and when she does accept it

she experiences a feeling of distance from the baby. She cannot help but think of him as

different, especially when she is unable to breastfeed him. Her husband Tom, on the other hand,

responds more gently. Although Tom felt hopeless at the realization that Avery having Down

syndrome meant he would have mental retardation, Jennifer notes that “his way with Avery was

accepting and forgiving. When I found fault in Avery’s raggedy breathing, or saw weakness in

his sputtering heartbeat, Tom didn’t. What Avery gave was gentleness, and Tom returned it”

(Groneberg, pg. 77). It is important to note that, while they both were coping with immense

pain, Tom was able to be Jennifer’s anchor in reassuring her that none of what they were

experiencing was her fault. His calm response allowed him to help her through her own

difficulty, either by being there for her emotionally or physically.

As families develop and grow, certain professionals become a normal part of promoting

healthy development. One example is the addition of a family doctor, as the need for keeping

track of health records becomes necessary. Jennifer states that they had been seeing their family

practitioner since Carter was born. When they first took the twins to see him for their check-ups,
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he unintentionally offended Jennifer when he referred to Avery as “one of them” and treated him

differently, causing her to seriously consider changing family doctors. However, she changed her

mind because she knew he was a sincere and caring doctor. She saw that he had a few

misconceptions of his own about Down syndrome, and so she decided instead that she and Avery

would be the “sandpaper” in his life to help him overcome these misconceptions. When it came

time to test Avery for hearing loss, Jennifer took him to an audiologist at the hospital in

Missoula. In contrast, the audiologist was extremely unfeeling and unprofessional in her

treatment of mother and child, speaking to Jennifer in condescending tones, and handling Avery

roughly with the ear piece. The experience left Jennifer feeling as though she betrayed Avery to

such a cruel professional; as a result, she began to distrust new professionals.

More uncommon in typical families is the involvement of a family support specialist. The

role of a family support specialist is to provide in-home education and support in any way

possible for the family in need. Brittney, the family support specialist that the Groneberg family

is connected with, turns out to be extremely helpful to the daily care of their family. She assists

Jennifer by providing a plethora of strategies and teaching techniques; connects her with further

resources such as a physical and speech therapist; helps with the boys when Jennifer needs a

break; and integrates herself into the family by being professional and personable. But even so,

Jennifer tells of how she was reluctant to trust Brittney, and even took offense when the Early

Learning Accomplishment Profile revealed all the functions Avery couldn’t do yet. In the end,

Brittney gradually builds trust the more she helps the family with basic needs, and her passion

for what she does finally wins Jennifer over. The overall experience with the physical and speech

therapists at the Child Development Center was a positive one for the Gronebergs, which helped

to stabilize their family life, and allowed them to re-dream for Avery’s future.
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Jennifer Groneberg’s skills as a writer are clearly present in this book; she gives clear,

precise detail about the changes that took place in their life cycle, and expresses vividly the

emotional rollercoaster that she embarked on in those early days. She skillfully uses flashbacks

as a way to connect the past with the present, which allows the reader to imagine what life was

like before the twins came into their lives, and compare it to what life is like now. One thing I

would have liked to have read more about was their outlook on faith. She briefly mentions their

encounter with a pastor before Carter was born, and how she wonders about faith, but she does

not expand on this very much, and as a result, left me wanting to know more.

For parents of children with disabilities, this book is a wonderful example of how they

are not alone in the world. It shows that, even though Jennifer was going through so much pain

and loneliness, it was temporary as she began to reach out for help. It also provides parents with

many additional resources including titles of helpful books, websites, and companies that can

help families get the assistance they need to promote a healthy family lifestyle. Her perspective

as the mother makes this book a valuable resource for educators as it gives a glimpse into the

lives of parents of children with disabilities. In order to better educate students, teachers need to

be able to connect with their families because of the crucial role they play in their development.

This book can show educators just how much stress parents go through in order to meet the

needs of every member of their family. It can help educators understand why some parents are

overprotective of their children, or why some mistrust professionals who do not try to know their

story. As a future educator, I can relate to this book in that it reinforced the importance of taking

the time to get to know the families of my students. Doing so will communicate to the family

that I consider their individual experiences and opinions in the development and growth of their

children vastly important to me as they entrust me with their education.

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Katie Kralovic
EDU 321
Parent Interview Reflection Paper

For parents of children with disabilities, the most important thing they would have for

their children is to be loved and be given the same opportunities to grow as any child. During the

parent interview, one thing that really stood out to me was how Mr. Craig kept bringing up the

importance of allowing his children to grow, regardless of their disability. This simple statement

from a parent shows just how crucial it is that children be educated in the least restrictive

environment so that they are given equal opportunities to grow. Additionally, the education of

our students would not be complete unless we realize that parents too have specific needs that

can be met when we make the effort to connect with them through family centered practices.

With the understanding of the importance of the family in a child’s life, educators are

seeing the benefit of centering educational practices around the family; educators need to be

aware of where families are coming from and what struggles they are enduring before jumping

onboard the “solve the problem” train. Mr. Craig’s position as the father of three children with

disabilities helped to reinforce this understanding through his experience working with

professionals. He pointed out that all the professionals worked very well with their son Jude, but

when it came to working with and communicating to the parents they were not treated with the

same sensitivity. Educators need to remember that some parents are new to the idea of raising a

child with special needs, and as such we need to be empathetic and available to them. By

providing parents with their own needs, whether being there for them emotionally or simply

providing them with additional resources, we can more effectively meet the individual needs of

their children.
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Another thing that stood out for me as an implication for practice was the experience Mr.

Craig’s family had with discovering that two of their children had Autism. Early childhood is the

prime time for educators to implement early intervention. The difficulty is picking up on the

signs and indicators that a child is developing in a way that could be benefitted from

modifications and accommodations. Educators need to be able to develop a system where they

record patterns of specific behavior so that they can address them through early intervention

practices. Functional behavioral assessments, which look at the antecedent, behavior, and

consequence all in context of the environment, is a great way to determine what the function of a

behavior is, and what the best response to it would be. Keeping record of behavior could be as

simple as using a checklist to track specific behavior, or anecdotal notes of what happened at

specific times of the day. Making a habit of these observational skills will help educators pick up

on certain behaviors that would otherwise be missed and lead to difficulty for the student as they

grow up.

When it all comes down to it, educators need to remember that every child is a child first,

and their disability comes second. As Mr. Craig said, “He’s just our son.” A disability does not

define a person; what does is who they are, how they interact with the world, and what we do to

encourage their individual growth. Mr. Craig’s testimony as a parent to several children with

disabilities showed me that, while there has been significant improvement of educators working

with the student, there is still work to be done in regards to including the family as part of the

educational experience. Furthermore, there is also still a need for vigilance in observation and

assessment in early childhood education so that we can provide students with the

accommodations and modifications they need to grow and thrive in our world.
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Parent-Teacher Conference Group Project Role Play

Teacher: Thank you so much for taking time to come out today and speak with me.
Mom: No problem we are eager to discuss Sam’s academic and behavioral performance this
year.
Teacher: I share your eagerness! Sam is a great student with a big heart--Today while we were
reading about different public service workers he said he wanted to be a firefighter so he could
help kids who can’t help themselves! It was so sweet!
It just made my day.
*Pull out binder* So let’s get started, over the phone you said you had some concerns about
Sam’s performance in school that you wanted to talk about--could you tell us a little more about
these concerns? This will help us start to think about a game plan for Sam for the rest of the
year.
Dad: Well my wife and I have high expectations for our son when it comes to his academics,
and we’ve noticed he’s not been receiving the desired results we’ve been led to believe he’d
achieve. We were just wondering how our son has been in the classroom.
Mom: Yes, we’ve noticed his self esteem has lowered drastically at home and are very
concerned. He is not as willing to do his homework at home like his siblings are and we feel like
we are providing him with all the opportunities he needs to excel in the areas he is failing at
school, but we are concerned that he is not being provided with the same amount of
encouragement here school.
Teacher: It sounds like he’s not being motivated here, that must be very frustrating for you,
especially when it affects your child’s self-esteem. I want to assure you we do provide Sam with
encouragement in the classroom--we have the school-wide positive behavior plan in place with
frequent reinforcement tokens for good behavior. But, not every child responds to the same
strategy. Can I ask what specifically you do at home?
Mom: Well we are paying for a private tutor to help him individually, we are also hoping to buy a
home computer if finances allow because we know how mechanically inclined he is, I study
with him one on one before any test, and provide him with quiet rooms to make sure he is not
distracted and remains focused.
Principal: The school offers an after school tutoring program that Sam can enroll in that can be
a great benefit to his academics. Also, because this is a free program, you would not need to
hire a private tutor and can use that money to purchase a home computer. We also have at
least one iPad in every classroom that I am sure Mrs. Katie can provide Sam with during
independent work, so he is using manipulatives that help him reach his full potential.
Teacher: Yes, I can absolutely provide him with as many technological manipulatives as
possible in the classroom, it may even help with his focus
Dad: You also have to understand, that in response to his negative feelings and his siblings
receiving excellent academic achievements, the family has been trying to motivate our son to do
his best! Whether it be utilizing his favorite activities like swimming and soccer, or simply
verbally assuring him He is doing all he can to do his best in the classroom. However, as an
educated man myself, I’ve noticed that even with all we’ve been doing to ensure his success,
the bad behavior and poor report cards have to do with the teacher failure in the classroom
itself.
Principle: First of all, what you’re doing at home is exactly what Sam needs, and having all this
information will really help us determine where to go from here. I’m sorry you feel there is a
teacher failure. We have noticed that Sam seems to lose motivation in the classroom. He gets
distracted easily and his excess energy is preventing him from being able to focus on his work.
We do have the positive behavior support system in place for the whole school, and the token
reinforcements, but from what you’ve just said it sounds like Sam really needs a more
individualized approach.
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Teacher: The tangible rewards may not be individualistic enough for Sam. This really connects
well with what we’ve talked about---but earlier this week I was thinking of developing a
contingency contract and a portfolio assessment for him, what would you think about that?
Dad: What’s that? I don’t think assessments will help; we already know he’s not doing well.
Teacher: This is an informal assessment that involves the student on a more personal level. We
create a portfolio that he designs, and in it we keep record of samples of his best work. Not only
does it involve him, but it also motivates him as he sees how he has improved over the year.
Principle: It’s a way to focus on his strengths instead of negative aspects of results.
Mom: That actually sounds like it could work--Sammy is very creative when he gets to create
what he wants. But I feel like there is still something we can be doing at home to help him
behaviorally at school...
Principle: I see what you’re saying. We definitely want to make sure we complement the
practices being done at home with those being done in the classroom. We could send home
additional samples of his good academic work so that you can hang it on your fridge. That way
this form of motivation carries on from the portfolio in the classroom to home environment, and
he sees that his work is meaningful!
Dad: That’s simple enough.
Mom: You mentioned a contingency contract---Correct me if I am wrong, but that’s an
individualized contract for students that encourages them to do their work as well as behave,
right? What would that look like in the classroom?
Teacher: Yes, you’re right, so for example at school, for every 3 assignments Sam turns in, he
will receive 10 extra minutes in free choice time, or he can choose to use the iPad during that
time.
Dad: Ok, so how can we compliment that practice at home?
Principal: It wouldn’t change too much. The contract could be created for homework he needs
to complete before he gets to do an activity he enjoys.
*Parents act satisfied*
Teacher: Are there any other questions or concerns you have that we can work out together?
Dad: No, that’s everything for now. We just really want to see improvement from his school
environment.
Mom: It sounds like highlighting his strengths will really help build up his self-esteem, so we
look forward to seeing improvement.
Teacher: Great! Yes, we will start these practices right away, and on Monday we’ll introduce the
portfolio and contract to Sam. Thank you so much for meeting with us today! Hearing about
everything you do at home will really help us as we move forward with Sam’s academics and
behavior.
Dad: Alright, well *get up to leave* I’m glad we could work something out. Make sure you follow
through and send home his good homework. We’re already doing a lot.
Principal: We’ll make it our priority! We really appreciate you coming in. Let me walk you out.
***Goodbyes***