Ariel Morales

EDU 215 Roadmap to Holland:

Part 1 of the Family Project

Written from a mother's point of view, Roadmap to Holland is the story of Jennifer

Groneberg and her family as they embrace the diagnosis of Down Syndrome. It is a reflection on

the two first years of their son's life and the adjustment of not only the family, but the adjustment

of the mother. Jennifer and her husband, Tom, live in Montana with their 3-year-old son Carter,

and infant twins Bennett and Avery. The story begins after Avery and Bennett are born. Avery

has just been diagnosed with Down Syndrome which is surprising and almost unrealistic to the

parent's ears. As mom reflects upon her pregnancy, she recalls the excitement and joy as she

found out that she and her husband, who were having some trouble conceiving, were going to be

having twins. As an older mom pregnant with twins she was medically considered "high risk"

and "advanced maternal age". As the story continues, we take a peek into both parents'

experiences as children. Jennifer grew up in a comfortable home with her mother and father until

her parents divorced when she was older.

Jennifer then tells about her anger, confusion, and embarrassment at learning her son was

born with Down Syndrome. She conveys this fear and shame surrounding the diagnosis strongly,

as she writes about envisioning

"the thick neck, the big tongue, and the wide, staring eyes. I think of adult diapers, health

problems, and poverty. I'm sickened with fear, and devastated at the grief I think I've

brought down upon us, the happy threesome . . . I'm ashamed, and my shame disgusts me."

As the reader I felt empathy towards their family and the changes they were undertaking. I can

imagine how hard it was for them to discover that one of their sons, who was already premature,

was going to be developmentally different than them or their other boys. Although they
Ariel Morales
EDU 215 Roadmap to Holland:
Part 1 of the Family Project

embraced it, I felt as if they went through a grieving stage with the support they needed from

family and friends. However, not all their friends were supportive.

One of Jennifer's friends and neighbors completely ignored them after she found out that

Avery had Down Syndrome. It was as if she thought it was contagious for her and her growing

family. This reaction appalled me and made me question how one could be so rude to a friend.

Jennifer writes that unfortunately she had to let that friendship go due to the lack of response and

support. However, God sends just the right people at the right time. Jennifer had some friends

who were very supportive and also met some new friends who would help her through this

experience.

The family embraces these changes and challenges and makes adaptations that work for

their family. These adaptations include overcoming her own shame and ignorance, as well as that

of others. They also involve learning about the inner workings of raising a child with special

needs, the challenges of early intervention, therapies, and medical care. Jennifer experienced

some interesting reactions from people. In the Neonatal Intensive Care Unit (NICU), she was

told that "people adopt babies like that" which surprised her. She was also surprised when she

brought the twins to the family doctor for their first appointment and she noticed that the doctor

was treating Avery differently. She eventually realized that the doctor was showing them pity

which frustrated her. It was amazing that she ended up forgiving them. One thing that caught my

eye was how reluctant Jennifer was to embrace early intervention. She eventually makes an

appointment after meeting with a mother and her school aged son with down syndrome. This

experience gave hope and confidence to Jennifer's outlook on the diagnosis. Brittany, a family

support specialist, was very helpful in getting the family information on intervention and Down
Ariel Morales
EDU 215 Roadmap to Holland:
Part 1 of the Family Project

Syndrome in general. After meeting Brittany, the family was introduced to great physical

therapists and speech therapists. Reflecting upon the lack of information given from the NICU

and the struggles they had with the family doctor it was great, as a reader, to see someone who

genuinely wanted to help and support not only Avery, but the whole family.

One of the chapters focuses specifically on an assessment done with early intervention,

one in which Avery is graded with pluses and minuses on a series of skills, and, at one point,

actually judged on his ability to "poke."

"The papers and their letters and the yes-or-no answers aren't the whole story," she

writes. "They don't capture Avery's gentle, easygoing nature. They don't mention how he

sucks his foot. There's no place to check off how he opens and closes his fist. . . The way

his chin quivers when he cries. . . . The most important things don't fit on any form; they

are not quantifiable, or able to be gauged. But they count -- they are the measure of love."

This statement made me question how the testing was done. Should they have used more open-

ended questions in assessing Avery and learning the family history?

As Jennifer continues to write about the growth and maturity of her boys, she realizes that

she has also grown and matured. Through learning experiences and research, she has learned to

embrace this new life with her husband and her three beautiful boys. I really enjoyed the ending

of this story because it provided so much hope for the family's future and Avery's future. Jennifer

writes about the night that Avery says I love you while she tucked him into bed. This action

brought so much joy and love to both her and her husband. She reflects upon how God has

touched their lives and given her family exactly what they needed and she concludes her story,

that is still being written, with the words "He's the child that I wanted, that I didn't know I
Ariel Morales
EDU 215 Roadmap to Holland:
Part 1 of the Family Project

wanted. He is my son.". As the reader, I was filled with love for this family and I was overjoyed

to see their growth together as they overcame this obstacle. This story was a truly inspiring and

accurate depiction of what it is like for families with children with special needs.

As an aspiring educator I really liked this book and the viewpoint that it gave me on not

only Down Syndrome but special needs in general. It was a "bird's-eye" view of the diagnosis

and early stages as told by a mother who has experienced it firsthand. It gave me a more

empathetic outlook on special needs and the families they affect. In my opinion, the author did a

wonderful job of relaying and describing her feelings as she underwent the changes but could

have put a little more focus on Carter and Dad and their adjustment. This would have given me a

better view on family life and the interactions and relationships within the family. Overall, it

was a wonderful story and reflection on a family's experience with Down Syndrome and the

adjustments that had to be made. Parents and teachers alike could use this as a sort of sneak peek

into the lives of a family with a child who has been diagnosed with Down Syndrome. This book

was especially intriguing to me because I know a family with a little boy who has Down

Syndrome and I am always so amazed at the love and joy that radiates from their family. The

parents are such strong people who embrace and work with their son with great support and love.

I always love seeing the Facebook updates on progress he has made in speech or other areas of

academics and love seeing photos of their three boys smiling so big and so full of life and love.
Ariel Morales
EDU 215 Roadmap to Holland:
Part 1 of the Family Project

References

Groneberg, J.G. (2008). Roadmap to Holland: How I found my way through my son's first two

years with Down Syndrome. New York, NY: New American Library.