"Normal" Is A Dryer Setting

Parenting A Child On The Autism Spectrum


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The Big Push

I’m kind of over getting told to throw my hands up in the air
So there
We’re on each other’s team
~ Lorde, Team

Screws in shoes

Screws in shoes

Spring is coming very slowly to Minnesota, in drips and drags, which means that soon I can begin running outdoors again. In anticipation of still snowy paths and icy patches, I modified an old pair of shoes to prevent me from slipping. To make your own, predrill holes in the soles and then insert small screws until they are about ¼” from being completely screwed into the shoe. I have found that this modification works better than boots or Yaktrax for gripping slippery places of the trail.

Last fall I promised my boyfriend that I would stop running half marathons. When I returned to his house in ice cube form after my late October one, he took me in with one glance and said, “You don’t look good.”  I told him, “I tore the bottoms of my feet on the big hill after Mile 11,” to which he grimaced and replied, “I don’t think you should run any more long races.” Upstairs in the shower, sitting with my head between my knees while the hot water warmed me up, I told myself that he was right. Why do I do things like this? Why race? Why compete? What am I trying to prove?

The point is not to compete or prove anything. I run because I love the combined mental and physical challenge. I knew the hill was coming after Mile 11, and, having run it in previous races, I knew what I was in for. The elevation increases by 100 feet within half a mile, and most of us choose to run it. I pushed myself because I knew after the hill I had less than two miles to the finish. At that point it was simply a matter of putting one foot in front of the other until the end. So close, and so tired, but nothing compares to crossing the finish line and knowing that I had accomplished my goal despite the voices in my head and the physical ache. Now spring is coming, fall is far behind me, and I am once again ready and eager to begin training.

“I’ve never had anyone do this that quickly.”

Our clinical study site.

Our clinical study site.

That statement was not made in response to my running. I’m a middle-of-the-pack kind of girl, each and every race. My son Tim recently participated in a clinical study on memory. This study is part of an ongoing research program by a psychologist at the University of Minnesota who studies the relationship between attention and autism. For an hour of Tim’s time once or twice a year, he earns $10 each session and enjoys being the center of attention. He does computer simulations, looks through diagrams, adds and subtracts, and recalls images and patterns. Everything is timed which helps provide statistical information. In his most recent clinical study, I overheard the doctor make the above comment when Tim was doing a number puzzle.

The clinical studies are usually done at our home or at the University. We tend to flip flop depending on our schedules. The first time our doctor came to our home for a study was approximately three years ago when Tim was in seventh grade. At the end of the study, she took a few minutes to talk to me with her recommendations. Her advice was that Tim should be taking college courses, not withering away in a middle school classroom. She stressed that intellectually he was ready for college and keeping him where he was would not be beneficial to him. I agreed but didn’t know how to start the conversation with the staff at the public school he attended.

This is an example of one of the patterns Tim had to copy using blocks.

An example of a pattern Tim copied during his clinical study using blocks. You can purchase this and other puzzles at Marbles located at the Mall of America.

Now Tim is in tenth grade and will begin taking college courses next fall in Animal Science as part of his regular school day. At our most recent IEP meeting, his teacher, staff, father, and I discussed him starting college early. We were all in agreement, and this would not be happening if we were not all on the same team. Tim’s teacher commented that she is reaching the point where she has nothing left to teach him, and it is time for him to begin transitioning to college. Tim will be taking one college course each semester, and by the time he graduates from high school he will already have four college courses in Animal Science on his transcript.

I wasn’t sure any of this would ever happen. When Tim started middle school three years ago, I participated in some workshops for parents of special needs children that his school generously set up. One moderator made this remark to our group that has since tumbled around in my head:

“Your child is not entitled to the best education possible. Rather, he or she is entitled to an education that is appropriate for his or her needs.”

As difficult as this is to hear, it is true. Reading it in writing makes me cringe. Not every person is meant to go to college, just as not every person is meant to get married, have children, travel the world, be an athlete, raise chickens, you get the point. I started to hold the thought in my heart that Tim may not go to college. Mentally I was Mile 7-8 of 13 miles, where you’ve come a long way, but you’re starting to feel tired, your feet are starting to ache, and you are well aware you still have a long way to go toward your goal.

Now we’re at Mile 11 with Tim regarding his childhood. The final part is one last push toward college, and then he enters the next phase of his life as an adult. The hill I had been fearing for years is no longer insurmountable. We just have to dig deep and run up it. Tim has come so far, and both his teacher and I have seen enormous mental and emotional maturity in him this past year. Even though Tim is nearly good to go, this is no time to rest. We have SATs and ACTs to prepare for, colleges to visit, applications to write, and choices to make. And what an exciting and delightful time it will be.

Here are some websites that may be helpful in researching colleges for students who fall on the autism spectrum:

  • AHEADD – Achieving In Higher Education (http://www.aheadd.org/): Provides coaching, mentoring, and self-advocacy for students with special needs.)
  • USCAP – US College Autism Project (http://www.usautism.org/uscap/): Provides support for students on the autism spectrum to help ensure they have both a successful college experience and a successful transition to the working world after graduation.
  • ISER – Internet Special Education Resources (www.iser.com): List of college programs to help students with the transition to college, independent living, college planning, and much more.
  • College Lists (http://collegelists.pbworks.com/): Nationwide list of colleges that have support programs for students with a former diagnosis of Asperger’s. Augsburg College (http://www.augsburg.edu/) is one of them if you live in the Twin Cities.


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Old School

An expert is someone who has made all of the mistakes which can be made in a very narrow field. ~ Niels Bohr

SDS-PAGE

When I was in graduate school, our lab studied proteins, lots of  ’em, and I spent my days running electrophoresis experiments. Since our lab was running on start-up funds, we did all of our procedures as cheaply as possible. While some of the set-ups took a little more time, one enormous advantage to building things from the ground up is that I learned how the systems work. Instead of using expensive kits or the latest fad in the world of cellular and molecular biology, I had to put the pieces together myself. In order to do that, I needed to understand the theories behind why certain steps are performed in a certain order.

Today, working in biotechnology, life is different. The time we scientists spend in lab in limited due to us having more responsibilities in our job functions. In addition to experiments, we have meetings to schedule, presentations to draft, customers to visit, and other odds and ends that arise during the day. We also order the kits and the fads to help us out in our experiments because we simply don’t have enough time in the day. A kit will let you purify DNA in four hours instead of eight. A computer program will design your PCR primers for you, preventing the need to scratch your sequence out, nucleotide by nucleotide, with paper and pencil. This morning I set up an SDS-PAGE to analyze the purity of one our proteins, and I pulled a precast gel out of our coldroom in ten seconds instead of taking an hour to pour one by hand the way I did almost every day in graduate school.

The recent college graduates who come to do internships at our company is that all they know are the kits and the premade supplies. They don’t understand why the procedures work, and a lot of them don’t care to discover the theories behind the systems. No one has taken the time to educate them on some of the fundamentals behind Why Things Work. Even if you never need to do it the old-fashioned way, it is still good information to know. It makes you a better scientist. It helps you make mental connections, think faster on your feet, and *gasp* come up with inventions.

The best part of all, however, is that you make mistakes when you do experiments by hand, without the kits, without the ready-made solutions. The more steps you introduce into a procedure, the greater chance for error. I have done so much electrophoresis and goofed it up so many times, every which way, and I’m talking both DNA and protein gels, that I know everything about the procedure, inside and out. The only way to become really proficient at something is the willingness to fall down, over and over again, and scrape yourself up each time to make a fresh start.

Little bites of gingery heaven!

My son and I made our first batch of Christmas cookies for the year last night. I have found that cooking and science are quite closely related. If you do good work in lab, chances are you are also an excellent cook. As an aside, I always look forward to potlucks with work colleagues because the food is guaranteed to be outstanding 😀 . As with experiments, I like to spend time in the kitchen cooking as opposed to picking up a pre-made meal. Last night we made soft gingerbread cookies from a new recipe I tore out of a magazine. After so many years of learning how to cook, I had a feeling the recipe would be good. My son, the picky eater, tried one when they came out of the oven and declared them delicious. As with science, not all of my recipes turn out every time. Poor Daniel has borne the brunt of a few dishes gone horribly awry, but that is an easy fix…you simply start over and cook something else.

My son is participating in two clinical studies. The first one, on ASD and attention, starts on Friday. You can read about the study by clicking here. The second one, on body chemistry of ASD, starts next week. The doctors who are conducting these studies are experts in their fields, and yet I feel skeptical, and I don’t know why. I should be supportive and enthusiastic about their programs, one scientist to another, but I wonder if they will know what to do with their results. Too much information is also a bane of modern technology. What do you do with a million data points? How do you begin to sort through and organize all of that? And is any of it meaningful?

We volunteered for these studies in the hope that the results are relevant, that they do mean something. Some of the techniques I use to run my experiments in lab are decades old. The scientists who pioneered these techniques needed to start somewhere, and, knowing how research goes, they probably had a lot of failures. The good part for the experiments my son has volunteered for is that there is no harm done to him if the results are ambiguous. The ASD And Attention Study is an IQ test and an interview, and the Body Chemistry Study is a urine sample.

The scientists coordinating these studies are at the early points of really beginning to dig deeply into autism research. With all of their hard work, they will be experts in no time! While there are bound to be be mis-steps and hurdles along the way, there is also the opportunity for them to gain an in-depth understanding of what autism spectrum disorders are and how to help affected individuals live healthy, happy lives.