Future LPA National Conferences
Past LPA National Conferences
The list below is a work in progress. If you are able to help fill in any details for prior conferences (city, date, name of hotel, etc.), please let us know!
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The dream of going to space is a common fantasy shared by children (and adults) alike. And for those of us who grew up in the 1980′s and watched the Space Camp Movie, actually attending Space Camp as a camper was another dream. Fast forward to being a dad with a dwarf son who is a space/rocket/jet/missile/airplane fanatic and learning about Space Camp for Little People! We just knew this was something we had to provide for our son (ok, and for dad as well). We just got back from attending and our mini review is below.
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What are my chances of having a baby with dwarfism?
We frequently see incoming search queries related to people asking questions such as What are the chances of having a dwarf baby? and Do dwarf parents always have dwarf children? Since there is a lot of interest in this topic, here is our attempt at making this understandable. (A quick reminder: dwarf or little person is the preferred term, not midget).
Autosominal Dominant Disorders
These types of dwarfism only require one parent to pass on the gene (or through a random mutation at conception). Some examples are achondroplasia, pseudoachondroplasia, hypochondroplasia, and SEDc.
Two Average Height Parents (no history of dwarfism)
- Approximately 1 in 25,000 (0.004%) chance of a child with dominant dwarfism
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Finally getting to this subject, as it has been a discussion item on many boards and asked by many LP women and couples in our community. I would be happy to answer any more questions from our/my experience. There are just so many questions about the subject, it’s easier to leave it as just a Q & A.
Was finding maternity clothes difficult because of being an LP?
I didn’t find it to be difficult finding maternity clothes, personally. But, we are all different shapes and sizes in the LP world. Also, my taste is different than others. My style is pretty laid back, funky and comfortable. Also, I like to keep things affordable. Though, if you are in an office environment that requires you to wear business attire, it may be more difficult. When I was working for a university in the front line and not behind the scenes, I kept my attire mostly monochromatic with black, blues, greys, browns, and whites. It’s also very slim looking! I bought a couple of maternity pants in neutral colors, got them hemmed and mixed them up with my regular tops/non-maternity pants during the 1st and 2nd trimester. I had some dresses already on hand that either had an empire waste or a stretchy/loose fitting cut. I took these and mixed them with my maternity pants, especially if they were dresses on the short side. The product was a very chic, black or charcoal grey ensemble with low flat heels. On Casual Fridays, I bought some dark maternity jeans and paired it with a black or grey top, layering it with a maternity tank top as I got to be rounder. These were my must haves for LP maternity style:
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Kettler Oceana
Our Physical Therapist at CCS modified a Kettler Kettrike Oceana for our dwarf child. We’ve received multiple requests for details on how this modification was performed, so below are some pictures to assist with doing the same for your child. Our son has a 9″ inseam and is on the 3rd percentile (height for weight) on the Achondroplasia Growth Chart. So as you can see, even with the smallest of LP children, you can modify this store bought bike without welding or major modifications.
In addition to the tricycle, our therapist also used a set of foot cups and pedal blocks. These attach onto the existing Kettler pedals and have velcro straps to help keep your child’s feet in place. They are removable when no longer needed. One place to buy these is Amtryke as they make customized Kettler bikes for children with special needs.
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We always loved Halloween growing up and it continues to be a favorite holiday among many children. Unfortunately for those of us in the LP world, it can be difficult to find a costume that fits well. There are so many selections available for everybody from infants to adults online and in the mall, but they’re built for the average (average height) person! Here’s some tips we’ve found from our past experiences:
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Our dwarf son has had multiple MRI’s and CT scans, so we’ve had some extensive experience with anesthesia. In addition, we have had MRI’s and CT scans done as adult LPs. Here’s what you can expect for MRIs without contrast:
The length of the scheduled time for an MRI will be much longer than the actual imaging requires. From getting them out of street clothes and dressed to going under anesthesia and MRI imaging then recovery, it could take an hour or two. They don’t normally allow anyone else in the room, but parents usually are allowed to stay so you can ask. Anesthesia would just be general by gas or injection, just a little. Either way, they usually determine the dosage by weight. They will put earplugs in his ears because even though he’s under anesthesia, your child will be able to hear it. IT IS VERY LOUD!
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Among the many difficult choices new parents must face, one is whether to bank their child’s cord blood. For both our dwarf and non-dwarf child, deciding how to proceed was no easy task. We attempted to research whether there was any special benefit for LP parents or parents of dwarf babies to bank the cord blood, but we did not find anything concrete. And according to the Cord Blood Registry, “for inherited genetic conditions, the child will not be able to use his or her own stem cells. A matched sibling’s stem cells would be the first choice.” If you find any published research showing an extra benefit for cord blood banking with dwarfism, please do let us know so we can spread the word!
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Who said being a stay-at-home mom is not dangerous? I slipped on our glossy, 80′s kitchen tile this morning and then banged my head really hard on the wall. Thankfully, I didn’t black out. But, I did have this shooting pain throughout my body and seriously thought I might get major spinal cord injury from it. I fell on the carpet, which cushioned my fall. Still, it was a couple of minutes where my body was numb, especially my right arm, which has the most symptoms from my spinal compression. I just laid there in tears. Meanwhile, my LP son just thought it was funny and couldn’t stop laughing. Stunned, I clarified to him that I’m really hurt. He still continued to laugh. The baby thought that because her brother was laughing she should laugh too. In fact, she thought it was Mommy playing, so she tried to get on my back. I screamed to get her off me . . . there was nothing I could do to get them to take me seriously quickly. Feeling helpless, I yelled sternly to get the phone so I could call my husband. My son got it, but still continued laughing.
- Dwarf Mama’s Lesson Learned: Never play games with your kids faking injury. They wouldn’t know if you really need help. I never play these type of games with my kids, but other people do.
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I can go on and on as to how I got to this subject in my head, but I’ll try to keep this short and to the point.
Strength as a Person With Dwarfism
If there’s anything you can give your child with dwarfism, it’s strength. Strength to get through anything, even when the world is sometimes built against them. It’s something you don’t need to buy in a catalog, order online, or qualify for. But, the strength that you give your child to just live life to the fullest, without thinking they were gypped or swindled into less of a life just because they have dwarfism. It will be worth more than you could ever pay for or get assistance from. See them for them and not as “poor” them. Our life has NO limitations, despite our size. We ARE capable of whatever we want to accomplish.
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