Educate Yourself About Achondroplasia

Obesity. People with the condition are prone to obesity. It can be managed with a healthy lifestyle.

Seeing your doctor regularly can treat and prevent these kinds of issues. Taking care of symptoms early can help avoid serious health problems later in life. Your child may see a team of health care providers, including a pediatrician, an orthopedic surgeon, a genetics specialist, a pulmonologist, an occupational therapist, and an ear, nose, and throat doctor.

Most people with achondroplasia live a normal life span and have normal intelligence, even if their development is delayed as infants and toddlers.

How Will My Child’s Development Be Different?

Kids with androplasia develop a little differently from other kids. Their whole body movements (gross motor skills) will progress on a later timeline. Fine motor skills (smaller movements with the hands and fingers), communication, and eating may or may not be affected.

Gross motor skills

You can expect your child to sit, crawl, and walk later than other children.

Some milestones to watch for:

• Rolling by 7 months old
• Starting to pull to stand up by 16 months
• Walking with their hands held at 19 months
• Standing independently by 20 months
• Walking by 23 months

Before learning to walk, babies with achondroplasia move differently from other babies because of their shorter limbs. They are more likely to commando crawl than crawl on their hands and knees. They might also bear walk or “snow plow” with their heads on the ground. All of these strategies are normal and safe.

They will also move from position to position differently, often moving one or both legs away from their body to sit or stand.

Fine motor skills

Fine motor skills are not usually significantly delayed for kids with achondroplasia. They should develop in about the same way as other kids.

Babies and toddlers may have a hard time grasping large objects because of their shorter fingers. Limited movement in their elbows and hypermobile, or double-jointed, wrists and fingers can also make fine motor actions harder.

You can expect your child to:

• Reach for objects by 6 months
• Bang two objects together by 9 months
• Scribble with a crayon by 18 months
• Build a 2-block tower by 18 months
• Draw a circle by 33 months

Communication

Some children with achondroplasia may have delayed speech or problems expressing themselves. This could be caused by low muscle tone (hypotonia) or hearing problems.

Expected communication milestones for kids with achondroplasia:

• Smiling at 1-3 months
• Babbling at 6-12 months
• Saying first words at 8-15 months
• Understanding peek-a-boo at 8-14 months
• Identifying body parts at 13-24 months
• Saying two-word phrases at 20-31 months

Eating

Your child’s feeding habits may develop later than other babies. Breathing problems, low muscle tone, and small airways can make bottle feeding difficult. They’ll likely eat less per feeding because of their smaller stomachs. Some children cough, gag, or spill from their mouths when eating.

Kids with achondroplasia should:

• Eat smooth, solid foods by 4-7 months
• Eat mashed solids by 6-12 months
• Eat with their fingers by 8-18 months
• Drink from a cup by 8-22 months
• Feed themselves with a spoon by 15-27 months

Becoming a Supportive Advocate

Remember that your child will have a healthy, happy life. Talk about achondroplasia as a difference, not a problem. Be straightforward when answering other people’s questions.

Treat your child according to their age, not their size. Ask teachers, family, and friends to do the same. Give them age-appropriate toys, activities, and clothing.

Teach your child that being bullied is not OK. Encourage them to tell you if they’re teased at school. Work with their teachers and school administrators to end mistreatment.

Remind your child that many things make them special. Point out and celebrate their talents and strengths.

Find ways to adapt your child’s environment to meet their needs.

What Accommodations Will My Child Need?

Encourage your child to be independent as they grow. Make sure they can reach what they need to at home, including closet rods, dresser drawers, mirrors, sinks, and doorknobs. Step stools and light switch extenders are important tools. Low furniture and chairs with foot support can make them more comfortable.

You may need to arrange special accommodations for your child at school to help them be successful. Some changes to consider:

• Step stools in bathrooms, classrooms, and near water fountains
• Extra time to get to and from classes
• Special seating
• Light switch extenders
• Disability accessible doors
• Movement breaks for stiff joints
• Extended deadlines for missed assignments due to doctors' appointments
• Extra time on tests if dealing with dexterity problems
• Changes to the physical education curriculum

Your child might need a 504 plan or an individualized education program (IEP) to make sure they are supported. These plans help parents, teachers, and students work together to help kids succeed.

Try to have your child participate in all school activities. All students benefit from including children with physical differences.

Let teachers know if your child has specific words they would like used when referencing their condition. Consider something like: “She is shorter because her bones don’t grow as fast as yours,” or “She has dwarfism, which means her bones grow differently.”

Finding Community

Connecting with other people with achondroplasia and other forms of dwarfism can be empowering. Joining a support group could be helpful for you and your child. Ask your doctor for local recommendations. Organizations that provide resources and support include:

There are many groups for parents of kids with achondroplasia on Facebook and other social media platforms. Try to find groups that don’t allow misinformation to be posted. However, don’t turn to online groups for medical advice.