Dear Parents of Little People …

I am the mother of a child with Achondroplasia。 I hope that my knowledge, though limited may offer some piece of mind. Being that there are over two hundred types of dwarfism, and I am not familiar with but a few; I hope that what I have written helps all who read it in one way or another. Either to give you piece of mind about what you are going through so that you at the very least know that you are not alone; or to possibly offer a little information that you may find helpful.

First, please always remember that you are not alone.

Every one out of ten thousand births results in a type of Dwarfism; with eighty percent of those having average height parents. And being as such, there is a HUGE support system just waiting for you to join them through social media as well as several helpful organizations.

Secondly, your（our）concerns for our LP are perfectly valid.

Why?

Because Dear Parents of LP …

Our children are tiny and built differently than the average population and will more than likely at some point be subjected to someone being rude to them by staring, pointing, taking pictures, videoing, or saying rude things to or about them.

Just tell yourself and maybe even your child, that those people are ignorant; which just means that they don’t understand or know enough about dwarfism to know any better and maybe that they’re curious, but don’t know how to deal with that. Please take the chance to practice Dwarfism Awareness and educate them without drawing more attention to and possibly embarrassing your child. There are even cards, brochures, postcards, posters, and other educational tools that you can hand out or use to educate others about Dwarfism.

Our concerns are valid because Dear Parents …

Our LP’s physical development will more than likely move along at a slower pace than that of a child of average stature.

Because your baby’s neck is smaller, and their head is a little bigger and therefore heavier; and sometimes it may be too much for them to hold it up on their own.

Because your baby is supposed to spend most of their time laying on flat surfaces for the first year of their life, and aren’t supposed to start sitting up on their own until around a year of age because of their head being too heavy for them and because of the possibility of it causing spinal compression, kyphosis, or some other spinal issue.

Because crawling may come later due to the fact that holding up their head long enough is a great feat for your little one.

Because your baby may not crawl at all but instead, go from rolling around on the floor or doing what is called a snowplow or reverse snow plow, or scooting, straight to walking.

Because walking may not happen until your baby is anywhere between one and three years of age due to the way their muscles and bone structure are and the fact that other physical milestones were reached later.

Just keep in mind that all of this is natural for your LP’s development and don’t feel pressured into trying to rush your child because So-and-so’s child did such-and-such at whatever age. Remember that pushing or allowing your child to perform physical tasks before their body is ready can cause severe injuries or conditions that could possibly result in the child needing to have surgery, or worse.

Our concerns are valid because …

There are all of these new “rules” and guidelines that come along with being a parent of an LP.

Because your baby is not supposed to be in a baby swing or bouncy chair. Your child is not supposed to jump on a trampoline or in a bouncy house. Because your child with dwarfism isn’t supposed to tumble or wrestle or participate in contact sports.

Because again these things among others, could cause spinal injuries and long term problems.

It’s alright to be concerned that sometimes your child may feel left out because they can’t participate with other children; but you don’t want to see your child hurt.

Our concerns are valid because …

The Pediatricians, therapists, teachers, and other care givers in your area may not have experience working with a child with Dwarfism.

Because even though there are a lot of people with one form of Dwarfism or another, apparently it is still not a hot topic at Med School.

In this case, the internet is your best friend! Both you, your family, friends, and your child’s care providers are welcome to join organizations and Social Media sites to research and ask questions. The internet has plenty of resources and information for anyone who wants to learn more about Dwarfism. Including, but not limited to information that is specific to Dwarfism and sometimes specific types of Dwarfism such as … growth charts, milestone charts to show at what age babies and children should perform certain life tasks, information about genetics, resources specific to care givers, and even resources to purchase medical supplies and objects to make life easier for LP.

Our concerns are valid because Dear Parents of LP …

Your child faces the possibility of having one or more of many health risks that are associated with specific types of dwarfism.

Because LP are more likely to have smaller veins, breathing passages, and ear canals; which can all cause health issues.

Because a smaller esophagus causes reflux which makes your little one throw up over and over again; and you don’t want your little one to have to rely on medication to get through the day without spitting up.

Because LP are more likely to have problems with fluid in their ears, are more prone to ear infections and hearing loss, and often have difficulty with speech.

Because our LP often have trouble gaining weight in the beginning and sometimes have trouble nursing and eating on their own and therefore need feeding tubes and/or specialty diets.

Because our LP are at higher risk for obesity which could cause even more health complications; so sometimes specialty diets are needed for this reason as well.

Because sleep apnea is scary. Because seeing your baby strapped up to that many wires during the sleep study is overwhelming. Because your child stops breathing. Because it can affect their heart and/or brain function. And because your little one absolutely hates wearing that CPAP or Bi-Pap mask, oxygen hose or mask, or trach tube.

Our concerns are valid because Dear Parents of LP …

Dwarfism and pain go together like bacon and eggs.

Because your little one’s legs will get tired and possibly hurt if you are doing a lot of walking such as being at a theme park or event.

Once your child outgrows the baby stroller, you can supply a scooter and/or a specialty bike that has no pedals to take some weight of your child’s legs.

Because LP tend to have a great deal of back and leg pain throughout their lives.

Many older LP use different types of motorized scooters or wheel chairs.

Our concerns are valid because …

Thinking of your little one going under the knife is scary.

Because it is common for LP to have difficulty with anesthesia.

Because it is common for LP to have their tonsils and adenoids removed to help them breathe more easily.

Because it is common for LP to have tubes placed in their ears to drain fluid, help with hearing loss issues, and to help cut out ear infections.

Because sometimes our little ones have to have spinal surgeries for spinal compression, kyphosis, scoliosis, and other spinal problems.

Because our little ones having fluid on their brain is a very real issue and so is the surgery to have it drained away.

Because fluid on the brain and spinal compression go together like chocolate cookies and a cream filled center.

Because sometimes trach tubes are absolutely necessary.

Our concerns are valid because …

Your child will more than likely face some physical limitations.

Because LP are shorter in stature, but our world caters to average height.

Your little one will more than likely need step stools, and special apparatuses to assist in the use of light switches and possibly door knobs and faucets. It is a good idea to dedicate a lower cabinet in your kitchen to dishes that your LP is accustomed to using. Switching round door knobs in the home to levers is also a good idea. Light switches and door knobs can always be lowered, but may cost you more.

Because LP may have shorter arms due to their type of Dwarfism; and there are some things those of us of average height may take for granted and/or not realize or think about …

Your LP may not be able to properly preform some tasks without aid. Items such as spray deodorant, a shower loofah on a stick, and even a device to aid in proper clean up during bathroom visits may be necessary.

Our concerns are valid because Dear Parents of LP …

This is more than likely a learn-as-you-go process for you; just as it is for me.

And that can be scary.

That is why I wanted to write this. To validate the fears and concerns that all of us, as parents of Little People have at one point or another. You are not alone; and it is perfectly normal to become overwhelmed and/or be concerned!

Just a couple of quick things I’ve learned so far with my daughter …

Our geneticist told me that behavioral “problems” (for lack of a better term) such as ADD, ADHD, Depression, Anxiety, and conditions like those are not common at all in people with Dwarfism.

So there’s something to cheer about!

Also, your child with Dwarfism will more than likely be stronger than your average height child was or is at the same age due to the structure of their muscles. LP tend to be very strong as well as flexible.

It is a good idea to know which types of therapists are usually needed for LP and what type of specialists are available in your area.

Physical and Occupational Therapy are highly recommended for LP starting within the first couple of months of life.

Also highly recommended are {and this is not limited to the following (just a recommendation)}…

• Geneticists
• Pulmonologist
• Nutritionist
• Audiologists
• Ear, Nose, and Throat Doctor (ENT)
• Speech Therapist
• Orthopedist
• Cardiologist
• Neurosurgeon
• Pediatrician (Of course)

I know that throughout this, I have probably missed some things. Please excuse my limited knowledge. I hope this has helped in any way.

Sincerely,

Concerned & Learning Parent of an LP