for Technical Assistance
Connecting people with disabilities who are facing day-to-day barriers with those who have overcome them.
Growing up there were a lot of things people said I would never be able to do. I would never be able to write my name. I would never graduate from high school. My goal was always: How can I do X so that I get it done, show the real skill being tested, and prevent exhaustion?
Around the time I was born, I was diagnosed with cerebral palsy. This is a movement disability that affects the way my brain communicates with my muscles. In my case, certain muscles are constantly very tight and stiff, and the opposing muscles in the pair are very loose. Whenever I want to move, I’m essentially fighting myself to make the tight and loose muscles do what I want. So physical fatigue is a major issue for me.
Many of the movement-related skills that most babies learn automatically and in a certain sequence--such as rolling over, sitting up, crawling, and walking--I could not learn on my own. I had to have a lot of extra physical therapy and training in order to learn these skills. One of these skills was crossing the midline. That’s where you take one side of your body and you move across yourself over to the other side of your body. Here are examples: reaching over to pick up something to your left by using your right hand, picking up and using an object with both hands, or sitting cross-legged on the floor. Crossing the midline also helps to develop spatial skills.
Crossing the midline is really important for learning how to write because you can’t draw diagonal lines at all if you’ve not learned how to cross the midline. When told, “Draw an X, Nicole. Here’s an X, copy it,” I would draw two parallel lines. I could tell that it was wrong, but I couldn’t figure out how to physically correct the diagram because I couldn’t cross the midline. (The fact that I could tell it was wrong indicated the cause was primarily physical or movement-related, rather than an intellectual or vision issue).
Some said I would never write. Handwriting was very, very, very difficult. I had to work and work and work at it. My dad had to break each letter down into micro-steps on how to hold the pencil, where to place the pencil on the paper for each line, and how to move my hand when drawing each line. If you think about all of the letters that have a diagonal line in them, like my name, I could not draw them until I finally learned how to cross the midline in late kindergarten.
But even after learning to write, my handwriting was not very graceful.
When I was in fourth grade, my handwriting still looked like a kindergartener’s handwriting. When writing on notebook paper, I would still use two lines of notebook paper instead of one. The middle line served as a visible midline to help me align my letters.
I would also often misjudge how much space I needed for a word and write over the margin. My writing on unlined paper was mostly illegible because my lines would slant a lot and would squish into each other. I had trouble aligning the letters next to each other in a straight line. (I would notice it afterward when rereading whatever I was doing, but by then it was too late to fix it). So having lines on the paper was (and still is) very helpful. Today I can write legibly on one line, though my handwriting is more functional than pretty.
I think my parents were less concerned with my handwriting by fourth grade because they knew that things were moving to computers. (Computers are amazing! They align text for you, so no more squished words, slanting lines, or margin crossing!) Typing was hard due to having to rapidly switch hands, and my finger dexterity was not very good. I had to practice a lot, but typing eventually became much faster and less fatiguing than handwriting. By middle school I was typing most of my take-home writing assignments. That made a huge difference for me academically. I could do my assignments legibly, so winning beauty contests for handwriting was no longer important. Also, in fourth grade, I started having other midline-related issues.
My difficulty aligning handwriting on the page crossed subjects: I also couldn’t line up numbers on paper. Midline-crossing became huge in fourth grade because it affected the way I learned math. Almost all math from long division onward was extremely hard for me. Long division was really difficult because you have to physically line up a lot of numbers to do the problems.
It took a while to figure out why I was having trouble because it was clear I knew multiplication and simple division: I was fine doing problems orally. I couldn’t tell my parents what was wrong because I didn’t understand why I was having trouble. (I thought I just had really severe math anxiety. I didn’t realize that there was an underlying physical-spatial issue that was causing and aggravating the math anxiety). I felt like math should be easy because I knew I was smart, but math on paper was overwhelming because of the physical layout on the page. It was extremely frustrating.
Once we figured out the issue, we did two things to alleviate it. First, I had someone copy math notes off the chalkboard for me so that I wouldn’t have to worry about listening to the teacher and lining up numbers on paper at the same time. Second, I started doing math on graph paper with the little boxes. (Actually, when I started out, I used homemade grid paper with fairly large boxes because graph paper sold in stores was too small for my handwriting!) I would put a digit or a symbol in each box, and that way the numbers would line up for me. That was the difference between math being impossible and math being doable with constant hours-per-night effort.
Then I took algebra in college, and it was mostly review: Even two years since I’d done algebra, I picked it up again in college quickly and needed only minimal help. My dad said, “See? You can do math!” Now I can usually do math without graph paper, but it helps to use notebook paper with lines.
When I was a freshman in high school, I got really lost. School had been going on for about a week, and I still couldn’t find the cafeteria without asking for help. I was frustrated because I knew I shouldn’t be having so much trouble. My teacher came over and said, “[The school] is like a box,” and he explained how there are buildings arranged in a square around the courtyard. After that, I never got lost finding the cafeteria again.
I use analogies and landmarks to navigate. I have a lot of trouble using printed street maps (due to having to turn and realign the map as you go), so it’s better for me to have detailed written directions. For example, suppose the traffic is going east, and I’m traveling as a pedestrian:
My directions: “Go in the direction of the traffic past Smith Street until you get to John Street. Turn left on John Street by crossing the street. You should see a Bank Z.”
Google Maps is also really helpful for me. It includes detailed written directions, and the map automatically rotates for you. Also, I can use Google Street View to look for landmarks and check for sidewalks that might pose difficulty to my wheelchair.
I’ve gotten a lot better at navigation now that I’m living independently, but it’s still something I’m working through. My midline-crossing struggles have changed over time, but I know I can work around the problem because I have done it before. It just takes a little creativity and a lot of practice.
Keep in mind that learning to type faster or write better was never the goal. My goal was always: How can I do X so that I get it done, show the real skill being tested, and prevent exhaustion? So I used double-lined writing, graph paper, computers, an app, and any other reasonable accommodations my family and I could think of. I also use my strengths to compensate for my weaknesses. For example, navigating using a map is difficult, so I use written directions as much as possible because I am strong verbally.
A lot of times people would say something like, “Well, if she doesn’t learn X within this window of time, then it’s really hard, and she probably won’t be able to learn it.” Was it really hard? Yes. But really hard does not necessarily mean impossible. And sometimes, finding a good reasonable accommodation is better than trying to learn the common skill. It saves time, stamina, and focus for other things. I’m still making physical gains because I’m figuring out new ways to do difficult tasks.
The irony of my story is that, after people said I would never write or graduate from high school, I majored in English with a composition emphasis and graduated with honors.
So I’m still crossing my midlines, and I’m just getting started!
My biggest obstacle has been people’s attitudes. If you miss a window of opportunity to learn something, some people assume that you may never learn it at all. Elementary school was the most difficult because everyone was thinking that I wasn’t smart, especially in kindergarten. Most of kindergarten--coloring, writing, everything like that--depends on movement skills. Between my obvious difficulties moving around and my terrible handwriting, people assumed I was either lazy or stupid because I didn’t have a way to show them otherwise.
As I got older, teachers started realizing that I was actually smart! This was a combination of having a computer for longer writing assignments and having other accommodations to help with difficult physical tasks. The accommodations allowed me to focus more on the intellectual part of learning, so that I could show mastery of the subject.
It’s not necessarily just one person: It’s the whole support network. This includes my parents, babysitters, a wonderful nanny who stayed with me during the day and after school from my infancy until I was a teenager, teachers, doctors, and my physical therapist, who worked with me from the time I was an infant until I graduated from undergrad. My therapist was able to help me work around the skills I couldn’t learn right away so I could keep making gains, and she provided invaluable continuity of care. But everyone around me who cares enough to encourage me to try new things is invaluable.
Don’t give up. The only true way to fail at something is to give up. If there’s a skill that you can’t do, figure out a way to get around it, or ask others for advice on how to remove the barrier you’re facing.
Find accommodations. These can be things to help you to be more efficient and less fatigued in school, in the workplace, and/or in daily life.
Pace yourself. When things get to be too much, take time to rest (without guilt), but never, never give up on yourself.
Take pride in small accomplishments. The small accomplishments give me the most satisfaction. Figuring out how to buy groceries, do laundry, and get from point A to point X is much more satisfying to me than reflecting on more major accomplishments. Because small accomplishments happen much more often than bigger ones, you can celebrate more often!
“Let’s plan” is essential. My parents pushed me a lot growing up, but not necessarily too quickly. ‘Making plans’ to move forward was very helpful in achieving each of my goals.
Find people who can help, people who understand what you are going through. Find help for your child and for yourself because you will need time to rest, too.
Don’t be afraid of change, especially if you’re a family member of a child with a disability. You have to make sure that you don’t give up either! Always encourage your child to become as independent as possible. I have learned so many things since moving out on my own. It’s not that I’m physically getting any better or physically more able to do things. It’s just a matter of “making a plan” and moving forward.
Questions or comments may be sent to Nicole by e-mailing the Southwest ADA and referencing ADA StoryTeller - Nicole in the subject line.