National Dwarfism Awareness Month: A Mother’s Journey

I remember the first time I saw a little person. I was about 8 years old. My mom brought me to the grocery store, and as we were leaving, I saw an adult dwarf. He had the short stature of child, but the facial features clearly showed he was an adult. Little did I know then, I would one day become the mother of a little person.

200 Types of Dwarfism
200 Types of Dwarfism

Just weeks after celebrating my 40th birthday, my son came into the world needing immediate medical attention. Two weeks later, I would know my son’s specific diagnosis called Thanatophoric Dwarfism (TD). TD is one of 200 different types of dwarfism. The adult I saw as a child may have had the more well-known type of dwarfism called Achondroplasia. Unlike my son, whose dire respiratory condition labeled his diagnosis as Thanatophoric which means “death bringing” in Greek. His type of dwarfism would cause my son to need the help of a ventilator to breathe.

Thanatophoric Dwarfism is one of 200 Types of Dwarfism. Click To Tweet

Though the medical books predicted my son would not live past birth, God had other plans. My son, Samuel, has been surprising doctors with his survival ever since his birth. Incredibly, he is now 13 years old and one of approximately 12 survivors worldwide.

SAMUEL’S BIRTH STORY

In order to raise awareness for National Awareness Dwarfism Month 2018, I asked several Facebook groups to submit questions about dwarfism and my role as a mother to my little guy. Below are several questions and my answers to their insightful queries.

FACEBOOK GROUPS:

Coffee & Motherhood – 49,971K Members – C & M         https://www.facebook.com/groups/CoffeeMotherhood87/

Miracle In My Living Room Group – 4,657K Members- MIMLR https://www.facebook.com/amiracleinmylivingroom

Tampa Bay Moms – 1.4K Members- TBM- https://www.facebook.com/groups/842754292414320/

QUESTIONS ABOUT BEING A DWARFISM MOM

Q. Isana S. – What’s it like raising him? I’ve always wondered if it was any different than any other child? C & M

A: Samuel is an only child, so I have no comparison; however, I believe raising Samuel is similar in many ways and different in others. Samuel loves being the center of attention. (Don’t we all.) He can spend hours on his iPad. And he has us wrapped around his little finger. However, there is no denying Samuel is different. At age 13, he is 28 inches tall and 27 ½ pounds. He has a trach and a g-tube. His limited use of speech is a barrier to communication. However, my favorite similarity is the joy, giggles, and laughter that fills our home every day. He teaches us to live life fully and to love greatly.

Child with Dwarfism wears baseball cap.
Samuel, with Thanatophoric Dwarfism, smiles with joy.

Q. Sarah A. – What are your favorite responses to hear when kids point out his differences? C&M

A. The most touching is seeing how full of love and acceptance children are of Samuel’s differences. They will smile and wave at him and giggle in delight seeing Samuel laugh or blow kisses. Those moments fill my heart as a mother.

Q. Florence D. – Did you know this was a possibility in your pregnancy (any other lp in your family)? Or was it a surprise? C & M

A. At my week 20 sonogram, we found out Samuel’s growth was several weeks behind. We met with a genetic counselor several weeks later who asked us if there were any other family members with dwarfism. There were none. We later found out that TD is a random genetic mutation and is not hereditary.

Q. Florence D. – Also, I had an amazing little boy in my class a couple of years who totally opened my eyes to this. His determination, independence, and spunk were incredible to witness. Our class was very accepting because we loved him. I know we had talks about it, but I can’t remember what all I said. This year in another class there is an lp (little person), but he is much smaller, I’m not sure what type he has. Many student(s) from other classes make comments about how cute the “little baby” is in the hallway. What can I say if one my students makes a comment like that? Anything beyond we all are different?

A. A child recently called Samuel a “little baby.” My reaction can be found here:  www.miraclemann.com/love-our-differences/

Florence D. Response: So, I’m thinking something like, “He’s not a baby, he has dwarfism which means he is shorter than you. Everyone comes in different sizes. We all are different sizes. We all are different in different ways… size, shape, color, personality, etc.” Would that response upset you at all? I teach Kindergarteners who are naturally curious.

A. That is a great response. We are all different, from our fingerprints to our DNA. And then there are other differences like my son who has a random genetic mutation. I like the way you explained it in a way children can understand.

Q. Lorae M. – If, let’s say, my child saw him and was looking out of curiosity, what would you’re or him (if he’s old enough) wish I would say or how do you address it with a child who is curious without coming across disrespectful? C & M

A. I would say it depends on the family. We are very open and love sharing our story. If someone approaches us with a smile and wants to ask a question, we answer and appreciate the opportunity to share. Other families may be more private. One way you could ask is, “Do you mind if I ask you a question?” Or, “Is this a good time to ask you a question? Usually, you can tell if a family is open when they respond with a smile to your smile.

Q. Jenece M. – What would be the best way to address in public settings, i.e., I have kids who are loud with their questions and really just want to understand the world around them. Would them introducing themselves and asking questions be ok? What is the best way to approach the situation of curious kids? C & M

A. I’d welcome it. Some families may be more private than we are. I’d smile, and if the parent smiles back, then I’d ask if it would be okay to ask a question. I would caution about touching. My son’s immune system can be easily compromised. But I think opening dialogue is wonderful… especially as a teachable moment for children. To learn understanding at an early age is priceless.

Q. Paige P. – 1. Did they know during your pregnancy? 2. Does it bother you or him when children innocently ask questions? My daughter doesn’t have a filter and might say things that seem “rude,” but she loves everyone and is very, very curious. C & M

A. 1. I did not know our son had a dire diagnosis until our week 20 sonogram. 2. I love when children ask questions about my son. Their curiosity is refreshing, and their acceptance of Samuel is precious. Questions are welcomed. The only time I was offended is when a child threw a pebble at Samuel. That could have been very dangerous. I wrote about that incident here: www.miraclemann.com/2202/

Q. Stephanie W. – What’s something special you see in his personality? Mother’s get the most unique view into our baby’s personality, and I’m always fascinated by the smallest details we pick up on. Is baby shark do do do on repeat in your home too? TBM

A. My son has such a sweet soul. He loves people, and he loves pleasing people. I see it every time he blows a kiss or lights up with one of his brilliant smiles when he greets family and friends. He also exudes pure joy from being the center of attention to learning something new successfully. The best way to see Samuel’s personality in his video’s and pictures. Check out his IG page here: www.instagram.com/miraclemann17. I posted a funny video of Samuel & I having fun with the Shark do do song on Instagram.

GENERAL QUESTIONS

Q. Beth L. – What do people with this condition prefer to be called? C & M

A. In July 2009, Little People of America declared the word “midget” as inappropriate and offensive. Preferable terms are: average-height, having dwarfism, short stature, little person, lp, and the medical terminology use of dwarf.

Q. Alicia C. –Does he do any type of physical therapy? What is he working on learning how to do in therapy now? Tampa Bay Moms

A. Samuel has a wonderful Occupational Therapist who has been working with him on range of motion. Typically working with grasping, reaching, picking up items, using adaptive scissors, etc. Recently she brought Samuel a plastic bowling set. He pushes the plastic bowling ball with his hand sending it crashing into the plastic pins. At which point he laughs out loud. (You can see this video on Instagram.) I love seeing his development and growth.

Q. Lena K. – How old is Samuel? MIMLR

A. He recently turned 13-years-old and is a full of life, and on occasion rambunctious teenager. : )

Q. Melanie B. – Does Samuel like to do arts and crafts? What’s his favorite cartoons/movies? MIMLR

A. He loves arts & crafts. The teacher recently used a spin art machine, and as you can see here, he had so much fun. His favorite character is Elmo/Sesame Street. And recently he has been seen being enamored by the Mickey Mouse Club.

National Dwarfism Awareness
Smiling Samuel Playing With Spin Art

Q. Erin S. – What are some of Samuel’s dislikes and likes when it comes to therapy, play, just everyday kid stuff? MIMLR

A. Samuel is a student of the Hospital Homebound program. One of the classes he receives is Speech Therapy. Being a typical teenager, on occasion, Samuel does not want to participate. His sweet school teacher will encourage him using all the techniques in her teacher toolbox, but he lay his head down on the desk. Other times, he can’t wait to follow directions and vocalize with her. Most times, he enjoys every moment of school. And, just like any other kid, sometimes he is not so enthusiastic.

Q. Cynthia O. – Does it bother him that he has this condition? C & M

A. Because he is developmentally delayed, he does not have an awareness of his condition. TD is all he has ever known. He does not know his limitations except on occasion when he tries to use his walker. He will use the couch or a table to stand and “walk” along the edge, so the desire it there. Physically, walking is a bit of a challenge, but he keeps trying and smiling with each effort.

Q. Holly S. – What is the main thing Samuel likes to try on his own? Or at least the best he can do without Mommy’s help.

A. He has a “Boogie Board.” It looks like a square skateboard with padding added for comfort. He leans on the boogie board and pushes with his legs to get the rollers underneath to turn. Then he will “boogie” all over the house. It is the cutest thing to see. And he gets a lot of joy out of independently getting around. Plus, it is great exercise for him, and he prefers using it instead of his walker. 

A Child with dwarfism using a walker
Samuel in his walker.

Q. Chris S. – Besides smiling, chewing and blowing kisses, what are some of Samuel’s favorite things to do? MIMLR

A. Another activity he enjoys is going for a ride in the van. Once we buckle him in the car seat, he squeals with delight. He’ll laugh and happily yell out loud as we drive around doing errands. A few days ago, we had driven Samuel to the grocery store, and after we got inside, he started blowing kisses to the other customers. It was so cute. He not only loves car rides but people too.

MEDICAL QUESTIONS

Q. Christine G. – Would you share resources that serve as adaptive tools for helping Samuel to participate in daily life activities? I would also love to learn about accommodations other families like yours could request or access to help them participate more in respective communities. I love what you’re doing. Educating everyone on how they can also help build inclusive communities is important to our family as well. Facebook Question.

A. Adaptive Tools include using Alternative Communication Assistive Technology. The TouchChat HD app offers Samuel pictures he can select to communicate. For instance, he can tap the stick figure picture of a boy, and the device says, “My name is Samuel.” Or he taps a picture of a birthday cake, and the device speaks his birthdate. Though he is very familiar with using an iPad, there is still a learning curve in using this device. We are very excited to see how he will progress over the school year using this technology.

Though we do not utilize this resource, there is a group called Buddy Break. They offer respite services at various churches. Since Samuel still has a tracheostomy and stomach tube, it is best for a qualified ventilator trained nurse to care for him. However, many special needs families utilize the Buddy Break program offered through Nathaniel’s Hope. https://www.nathanielshope.org/

Q. Florence D. – Does this type affect his mental capabilities at all or fine motor? C & M

A. Thanks to therapy services, I do not see issues with his fine motor capabilities, per se. Though he has some challenges with using his hands, he has adapted well. And he still working on walking. His developmental delay does create some challenges in communication. However, he is learning new words to add to his vocabulary with the help of speech therapy.

In receiving many questions from across Facebook, I asked Sarah L. of Coffee & Motherhood, a question of my own. Her brother is a little person, so I asked her this question:

Q. Evelyn Mann – What was the best part about being a sister to an little person?

A. Sarah: So many things! He’s an absolute joy in my life. Although we do fight. He’s taught me to really live my life and don’t let things hold me back. He’s stubborn though and doesn’t like me helping him at all. He’s really made me open my eyes about all different walks of life. I’m blessed to have him.

I enjoyed reading Sarah’s perspective on growing up with a brother who has dwarfism. He taught her lifelong lessons. The lesson I’ve learned is to cherish every moment with my miracle son. To bask in the  joy and laughter, he brings to our home.  And to be in awe of God’s work in his life. When I sign my memoir, Miracle In My Living Room: The Story of a Little Mann, I write this verse down: Luke 1:37. Here Luke 1:36 & 37.

Luke 1:36 Look, even Elizabeth your relative has conceived a son in her old age, and she who was called barren is in her sixth month. 37For nothing will be impossible with God.”

I had Samuel just weeks after I turned 40. I gave birth to my son in my old age. I was told he had a lethal form of dwarfism and was not expected to live past birth. But then verse 37 came to life. A verse I have been living ever since.

If you enjoyed these questions and answers or if you didn’t see your question answered go to Tampa Bay Moms Blog Dwarfism Awareness Month for more of the story.

To read the memoir, go to www.miraclemann.com/book-store for a signed copy.

Thank you for reading this blog about National Dwarfism Awareness Month. Comment what you learned about dwarfism below. I read each comment. If you would like to spread dwarfism awareness, consider sharing this blog with family and friends and help get the word out.

Why Being A Mother Has Great Value

October 22, 2018

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