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EARLY
CHILDHOOD

3 to 5 years

Home adaptations

Adaptations and modifications

Gaining independence is a key part of your child’s development, and it’s important that they are treated in an age-appropriate way. Independence should be encouraged in tasks like getting dressed or going to the bathroom. However, children with achondroplasia often need adaptations or modifications at home and in school to help them perform these tasks independently.

The skeletal dysplasia community is very creative when it comes to modifications to promote independence. There are many tips, tricks, and devices to help people of short stature. You and your child might even create a new adaptation to share with others!

The following resources provide more information about adaptations:

Remember to talk to your child’s care team about any questions you may have.

Adaptations to support your child with achondroplasia

Place stools in places where your child may need extra height to reach something

Move your cups and dishes to a lower cabinet

Lower the height of your light switches or use light switch or door knob extenders

Get a modified bike designed for children with short stature

Make it easy for them to use the toilet, at home and in public Learn more

Clothing

As your child gets older, finding clothing that fits and is age-appropriate may become more challenging. However, dressing your child in age-appropriate clothing is important for their confidence and self-esteem.

Tailoring may be required, which usually involves shortening the sleeves and pants. If you don’t know how to sew and are interested in learning, there are many resources available to help you learn, such as local craft stores, friends or family members, or online tutorials.

More achondroplasia-friendly clothing ideas can be found here. Some advocacy organizations also host clothing swaps throughout the year.

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School accommodations

Children with achondroplasia may face challenges at school due to their short stature, mobility challenges, trouble accessing appropriate equipment, and speech delays

Before starting school, consider having your child meet with an occupational or physical therapist to determine whether they need accommodations. After that, you may want to talk with your child’s teachers and school administration so they know what to expect and how to help your child.

Your child may be entitled to accommodations from their school, such as:

  • 504 plan (a document created by the school and parents that will identify accommodations, such as providing step stools, to help your child participate in the classroom)
  • Individualized education plan (IEP) (a personalized document that describes the special education services your child will receive, such as speech or reading help)

Additional adaptations and accommodations:

Educating others at school

If you would like to educate your child’s classmates and their families about achondroplasia, one option is to write a back-to-school letter to be sent home with the students in your child’s class (an editable example letter can be found here). Another option is to ask a charitable foundation or advocacy group member to give a brief presentation about achondroplasia to the class at the start of the school year.

It’s important to involve your child in the decision about whether and how to educate their classmates about achondroplasia. This is a personal decision that should be made based on your child’s personality and environment.

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Extracurricular activities

Participation in sports and extracurricular activities

Children with achondroplasia have some physical limitations when it comes to participating in sports. They may tire more easily than their peers during exercise. This is due to a variety of factors, including a shorter stride length that causes them to take more steps (and therefore, expend more energy), shorter muscles that fatigue at an earlier stage, and a lower lung capacity that causes them to breathe more frequently.

There is also an increased risk of damage to the spinal cord from a forceful head or neck injury. Therefore, medical professionals advise that your child avoid contact sports or other activities that could increase the chance of head or neck injuries, such as jumping on a trampoline or American football. Activities generally considered safe include swimming, golf, tennis, soccer (without “heading”), baseball or softball, and basketball.

Encourage your child to try out physical activities in which they can participate safely. Adapted sports have many social, emotional, and developmental benefits for children with achondroplasia. The Dwarf Athletic Association of America is a nonprofit organization that provides amateur level athletic opportunities for athletes with skeletal dysplasia in the United States.

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Psychosocial support

Helping your child understand their achondroplasia

Your child will probably start to become aware that they are smaller than their peers around the age of 4 to 6 years. This realization usually happens slowly over time, rather than at a particular time point.

The conversations you have with your child will set the stage for how they view themselves. It’s important to respond to their questions in a sensitive and age-appropriate way. For example, if they ask why they aren’t as tall as their classmates, you may choose to say something like, “Your bones don’t grow the same way their bones do, and that is why you are shorter. You are different in your own way, and that’s what makes you special!” It’s important to help them develop their self-awareness in a positive and healthy way.

Some other approaches you can take to help your child understand their differences are:

Responding to questions from classmates

It’s likely that your child will be the only one with short stature at their school. They may receive increased attention and/or questions from their peers about their height. Practicing how to respond with your child can help them feel comfortable answering such questions on their own. You may also consider asking your child’s teacher to discuss these differences with other students to help them understand.

Managing feelings of frustration

Young children with achondroplasia often experience feelings of frustration due to physical limitations, such as not being able to reach door handles and light switches. At this age, they may start to compare their abilities to those of their peers. Adaptations and modifications, like doorknob extenders and lowered light switches, will help your child become more independent and may reduce feelings of frustration.

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References

  1. Campbell J & Dorren N. It’s a Whole New View: A Guide for Raising a Child with Dwarfism. Little People of America, Inc. https://www.lpaonline.org/assets/documents/LPA%20New%20View%20FINAL.%20122806.pdf.
  2. Crazy Little Projects. Sewing for beginners: Everything you need to learn to sew. https://crazylittleprojects.com/sewing-for-beginners-learn-to-sew/. Accessed 28 February 2024.
  3. Dwarf Athletic Association of America. http://www.daaa.org/. Accessed 28 March 2024.
  4. Hoover-Fong J, et al. Health supervision for people with achondroplasia. Pediatrics. 2020;145(6):e20201010.
  5. Ireland P, et al. Optimal management of complications associated with achondroplasia. The Application of Clinical Genetics. 2014. 7:117-125.
  6. Jacinto M, et al. Physical activity, exercise, and sports in individuals with skeletal dysplasia: What is known about their benefits? Sustainability. 2022;14(8):4487.
  7. Little People of America. https://www.lpaonline.org/. Accessed 20 March 2024.
  8. Pauli R, et al. Achondroplasia: a comprehensive clinical review. Orphanet Journal of Rare Diseases. 2019;14:1-49.
  9. Shediac R, et al. Experiences of children and adolescents living with achondroplasia and their caregivers. Molecular Genetics & Genomic Medicine. 2022; 10:e1891.
  10. The Clinical Guide to Child Psychiatry. Edited by David Shaffer, Anke A. Ehrhardt and Laurence L. Greenhill. New York: The Free Press. 1985. Pp. 619.
  11. U.S. Department of Education. Protecting students with disabilities. https://www2.ed.gov/about/offices/list/ocr/504faq.html. Accessed 28 February 2024.
  12. Understanding Dwarfism. https://understandingdwarfism.com/. Accessed 28 February 2024.

Community Connections

“I see in my future pretty much what anyone else would: graduating school, graduating college, going on to a job I like, starting a family.”

teenager living with achondroplasia

“Typically, with achondroplasia, people focus on height, but there are other important aspects of the condition that impact quality of life.”

father of a teenager living with achondroplasia

“My friends would describe me as someone with a big personality, very outgoing, and someone that always is smiling. I’m a people person, and I love making people happy.”

young adult living with achondroplasia

“There was some unknown going into the birth. As soon as she was born, the first reaction was, ‘she is beautiful!’”

father of a teenager living with achondroplasia

“I would tell myself back then [at time of diagnosis], just take a deep breath and let go of the fear a little bit. Fear is normal. Once you are over that fear, you kind of just dive in. You dive into the information, and you educate yourself and learn everything you can learn about achondroplasia and really try to be your kid’s biggest advocate.”

mother of a teenager living with achondroplasia

“My joy is seeing my child’s daily progress. There were many things she couldn’t do like other children. She is gradually becoming capable of those things, little by little. I realized that it’s okay to grow slowly.”

mother of a child living with achondroplasia

“We were always outside, we always were being competitive, playing sports, just being kids.”

young adult living with achondroplasia

“I was four years old when my younger brother was born. I was young and didn’t understand what achondroplasia was. I don’t care if my brother is tall or short. I was simply happy to have a younger brother.”

sibling of a person living with achondroplasia

“Really, we are just like everyone else. We may look different, but we like being treated like everyone else.”

teenager living with achondroplasia

“Our daughter is a person. She has feelings. Yes, she may be physically different than other children or other people, but I think that it is important to be aware of those differences without necessarily calling attention to them.”

father of a teenager living with achondroplasia

“Shortly after he was born, he was diagnosed with achondroplasia. At first, I was worried and anxious. However, as I learned about people with achondroplasia who thrive and lead full lives, I gradually began to feel at ease.”

mother of a child living with achondroplasia

“We have relied heavily on the community. We are quite appreciative of the community and the resources that are available to help parents, siblings and individuals with achondroplasia. The diversity within this community has been quite enriching on many levels.”

father of a teenager living with achondroplasia

“His diagnosis was a major turning point in my life. This was when my new journey as a caregiver and advocate began.”

father of a child living with achondroplasia

“Having achondroplasia, you are going to come across challenges consistently. The way you are going to deal with them is really going to impact your life. Yes, I have challenges; obstacles get thrown at me all the time, but it’s the way of going about it and realizing there is so much more to life than having achondroplasia.”

young adult living with achondroplasia

“What we have seen is that she has done a great job of adapting herself, getting creative, doing things a little bit differently, but she always finds a way to be successful.”

father of a teenager living with achondroplasia

“The greatest joy as a parent is seeing my son be energetic and cheerful. I hope that my son will continue to look forward proudly, hold his head high, and live confidently and cheerfully.”

mother of a child living with achondroplasia

“What I want to convey to society is that rare conditions exist, and there are many people in the world who need help. I genuinely wish that the world would be kinder. I hope people have a level of knowledge that allows them to understand the condition when they see a child that is smaller or looks different.”

mother of a child living with achondroplasia