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.
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.
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.
Call me the dwarfism and disability rights crusader for my son’s school. First, there was a call to action against a charter school placed on our campus. Then, there was a call to action for air conditioning to be placed in our area schools. Often, PTAs will send out template letters for parents to send to the school board. Instead of just copying and sending the template letter, I like to use that letter as a big red flag to say: I’m a parent of a child with dwarfism! Here is your Dwarfism Awareness educational moment!
This is a letter I wrote to the school board members to demonstrate the effects of not having air conditioning at our schools (the name of the school proposition has been changed):