When you read our son’s list of grade school adaptive equipment, it’s like reading a rider list for a rock star. Well, he is a rock star in his own right, but this equipment helped him safely maneuver around campus. He has had some of this equipment since he was 2 years old in the Early Intervention program. Over 6 years later, I’d say that this equipment was worth all the struggle to get it. We had several physical therapists, occupational therapists, teachers, and adaptive equipment specialists help us start collecting these pieces. In the end, it was the special education department’s staff who worked with physical health and impairments that assessed his needs and got the equipment. They simply assessed his needs by watching him maneuver around campus and the classroom. From there, they made a list of equipment and measurements for any adaptations. He was assessed and monitored as he got older for adjustments. It was very cool to see some of the equipment leave. And once he got past kindergarten, it got better.
PSA (Public Service Announcement): Midget is considered an offensive term. We prefer to be called by our name. And more appropriately, we prefer to be called a person with dwarfism or some prefer Little Person (LP).
National Public Radio’s (NPR) World Have Your Say (#WHYS) asked: Have you been offended by a joke?
Well, yeah, I’m a dwarf and a parent of a dwarf. Midget jokes have been the “guaranteed punchline” forever. Why shouldn’t you hire a midget chef? The steaks are too tall. Google’s first auto-suggest response to a search on “Midget” is “Midget Jokes”. Groan. That means it’s a very popular. Again, we are the one disability community that is considered free game.
Talking this over with Dwarf Dad, he reminded me of the freedom of speech. It’s one of the rights as Americans that separate us from most countries. Look, I’m not protesting against my country for allowing the midget jokes. I just want to stop hearing blasts about our size and abilities coupled with offensive, Rated R sex jokes.
Don’t get me wrong. I used to love Chris Rock, Carlos Mencia, and Rex Navarrete. I snicker at the Filipino jokes told by a Filipino even more, probably because I can relate. The thick Filipino accent coupled with shots at our quirky culture is too rich to not chuckle at. But then it gets old. It gets really, really old. And before long, I’m looking at the time and I’m completely bored.
Being a comedian is an honest living that requires talent unlike dwarf tossing. You’ve gotta keep writing new material because before long your shtick making fun of people with differences isn’t so original or hilarious. So, don’t worry Brad Williams. I’m not going to protest outside the next comedy club you’re performing at. I’ve got bigger fish to fry without worrying about these types of dumb jokes. I’d rather not have jokes about my son and our family exist, but I bet President Obama feels the same way about his family. Just hope all you comedians can come up with better comedy material beyond midget jokes.
An Average Height parent of an LP recently posted that a restaurant in New York is advertising a dwarf tossing event. She thought it was completely disrespectful and that it “goes back to the whole idea of little people being used for entertainment purposes.” This mom of an infant LP son encouaged people to call into the restaurant and voice their opinion to the manager. Well, you would expect the dwarfism community to all be on the same side of the fence and be up in arms. Nope! We all have a different opinion on our role in the world just as we differ on politics and religion.
After watching the thread continue on with this conversation of “I want to be tossed like a salad” and “Government shouldn’t be my mommy to tell me what I can and can’t do”, I had to post about the big picture. Dwarfs outside the US and developed countries have a greater responsibility, which is to be treated with dignity so that other countries will follow. A friend of mine posted this article and is very active in the movement to stop human trafficking. Someone posted on that thread about how dwarf tossing can be a form of human trafficking. I think that is a very valid point and one thing to consider when thinking that possibly LPs “choose” to participate in dwarf tossing. Who’s to say that dwarf tossing in other countries outside the US isn’t a choice of an individual?
We should not condone dwarf tossing in the US, as much as we do not condone human trafficking. According to this article:
As the sexual attractiveness or labor power of victims are the object of exploitation, there are very few individuals with disabilities among victims. However, a study of children trafficked into circuses found a significantly high number of children with dwarfism. Said to be shunned socially in Nepal and India, these individuals are in high demand by traffickers to be exploited as clowns in circuses. Begging is another sector of exploitation where disability is in demand to generate sympathy among onlookers. Physically challenged minors are trafficked from Southeastern Europe to beg in the streets of Greece and Italy.
Question: I’m thinking of starting my older AH son on violin soon, which got me thinking, how that might work for my child with achondroplasia if/when he wants to start. Do any of your achon kids play? I guess they make violins small enough? Will his fingers make it around the strings? Does the asymmetrical posture have any impact on orthopedic issues?
This Dwarf Mom played violin from grade school until high school as well as piano for 10 years. Yes, they make violins small enough for LP children. I still own my 1/8 modern acoustic violin and look forward to passing it onto my LP son. He will be able to learn the strings by the time he is in 5th grade. If not, the violins can go even smaller (such as this 1/10 novice violin). Though, I hope he will keep mine after it’s well tuned and given new horse hair on the bow. When I took it out to take these pictures, he was actually very anxious to begin playing it. I assured him he will get to . . . once he learns the piano first.
When my husband and I were in grade school, there was no 504 or IEP for us. It was just a simple understanding between the principal and my parents that I needed some adaptations, which were very little due to just “having to work with it”. That was the 1970′s and 80′s where disability awareness was minimal at best. But, we survived with our one step stool and simple things like asking a friend to help. Fast forward to today with ADA laws and fear for lawsuits, our son has a nice adapted environment at school simply because we learned and are learning to make it easier and safer for him.
My own lessons learned as a parent:
- Ask for the equipment early in the year. Basically, each district is given an amount by the federal government each year. The pot is full in the fall semester, but once spring semester rolls around, it begins to deplete and you may need to wait until the following year to get it purchased.
- Research ideas for equipment by trying them in stores, going to friends houses, and getting input from other parents with children with dwarfism. Not all forms of dwarfism fit the same needs. For example, a product perfect for a child with achondroplasia, but not a child with diastrophic dysplasia. YOU should decide which equipment fits best for your child, not the OT, PT or teacher. They may suggest some ideas, especially an OT who has experience with other children who have gripping or orthopedic issues. Ultimately, you should be bringing them the picture, product link, or idea to help get the purchase through or get someone on the staff to build it (janitor, adaptive equipment dept., etc.). Otherwise, your child’s needs may not be met and you will wind up with a big $300 piece of equipment that will just sit there collecting dust. Another child could benefit from that low incidence funding.
- Come to school and see that it actually fits! Sometimes, a purchase will not go through or that the product won’t fit in a space as you might have expected. When this happens, you can take care of the problem right away by discussing it with the staff who purchased it and see if they can return it or re-purpose it to order something else. Sometimes nothing will fit that’s off-the-shelf. Custom builds are common for children with orthopedic impairments, so don’t hesitate to ask. If the District doesn’t have someone on staff to do the job, you can offer to find someone and outsource the work.
Here are some of the adaptive equipment our son has at school. Some of them have been with him since he was 2 years old at Early Intervention pre-school. You can find more information about Low Incidence Funding here.
Glow Sticks Are Fun!
A favorite staple of dances at conferences are the glow sticks worn by both children and adults. They come in a variety of colors and lengths. When we recently purchased a large amount of glow sticks for a regional conference, we tried to research online the best brand of glow sticks. There is not much information available, mostly that the Lumistick seems to be highest quality.
So we decided to do a semi-scientific comparison — activate the same number of glow sticks from different brands at the same time and judge their brightness. We purchased a package of major name brands from Amazon, WalMart, etc. We also bought the small 10-packs you can get from Target, Dollar Tree, etc. Right away we can tell you the Dollar Store glow sticks just don’t cut it compared to the major name brands. A lot of them were already activated or duds, and they just weren’t that bright.
My grandmother was very wise in her years to instill the fire in my belly. But, I never knew how much that fire would need to be re-lit and fueled continuously throughout my life because people are just plain jerks. I’m not talking about the random, uneducated person that calls me a midget or the bratty 9-year old kid that thinks it’s funny to measure themselves against my height to show that I’m definitely shorter than them. It’s the continuous need to build a community for my children that is encouraging and supporting of them, no matter what they look like or what they accomplish. Coincidentally, that community is in one of the toughest places to build positivity– school.
Tirades about why bullying sucks is so passe’. We all know it and most of us have experienced it. But when children are involved and they have done nothing wrong to deserve it, but to exist, that sucks.
- Find peace within yourself to know that you deserve to be here on this earth, just as much as anyone else no matter how smart, fortunate, or popular they are. You are amazing just being you.
- Don’t you go discriminating against anyone else or you’ll be discriminated yourself. The next person has just as much to offer you as you have them, no matter what size, color, creed, or shape.
- Be graceful in your frustration with stupidity. How’s the saying go? Life is 90% how you react. It’s tough, I know . . . but, it will serve you well. If you really need to blow off steam, throw coins.
- Power comes in many forms and it’s not just to make someone feel small. Take that power and do good with it. Uplift someone else who has been wronged. They will in turn empower the next person.
- Numbers don’t mean anything, so when any popularity comes into view, ignore it. Know that you are loved and cherished.
Whenever in doubt, I remember this affirmation that a college professor taught me. It’s simple, so keep remembering it.
I am brilliant, powerful, limitless, love.
I’ll be the first to admit. I.hate.flossing. Absolutely hate it with a passion. First of all, my mouth is too small to reach my molars in the back. Having short fingers doesn’t help with flossing either. I could never get the floss around my fingers tightly while at the same time trying to wrap it around my tooth. Also, Achondroplastic dwarfs are prone to orthodontic issues. With the small mouth and normal sized teeth, it gets crowded and teeth are forced up against each other, which leads to tight spaces between the teeth to floss. All of these factors make it very discouraging to floss well and often.
Our son didn’t have any teeth until after age 1, probably due to having Failure To Thrive. In any case, his geneticist told us from the beginning to keep on top of his overall health. The Early Intervention program helped by offering health clinics free of charge like vision and dental screening. He saw a dental hygenist at one of these clinics when he was only 2 years of age. That’s where we learned dental hygiene techniques for young children, whether or not they had a disability. We use these techniques even today with the kids being ages 7 and 3. His first visit to the dentist was at 2 1/2 years old. At that age, he had 17 out of 22 teeth. His follow-up was 6 months later to check on the flossing. Our son hated brushing his teeth, but singing a song helped ease the chore. He tolerated flossing only the front teeth. Over the years, he got better at tolerating the brushing and the polishing at the dental office.
Some thoughts from an LP adult perspective . . .
It is okay if your child does not have access to a disabled placard. There are many LP adults whose parents did not have a disabled placard to use when we were young. In fact, there are some LP adults who don’t have a placard because they don’t want to live a life with special adaptations, which is awesome. Any kid has to learn early to be aware of our surroundings, not to walk away from our parents’ car when in the parking lot, hold someone’s hand, and always wait before crossing. Having a disabled placard should not be a right that’s misused. And an infant with dwarfism who cannot walk yet does not need a disabled placard.