"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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The Wash

I felt as if I had washed a tub full of sheets but not got them clean. ~ Girl With A Pearl Earring, Tracy Chevalier

This describes how I feel raising a child with special needs. You do everything properly, based on a combination of experience, instinct, and advice, only to discover that nothing is as it should be. Then you do everything again, expecting a different result, only to find the same challenges waiting for you. Ultimately, you exhaust yourself with the effort of trying to produce the wanted result in an environment where what you want to do is not possible. Adjustments on your part as the parent become necessary.

While autism doesn’t wash off, as Tim grows older, life becomes more manageable for him (and me). The key is to leverage his strengths instead of trying to change his nature. We had a meeting with his teacher and special education support staff at his school last week, and for once I had nothing to say. This is a good thing because if I go into one of these meetings with questions and concerns, and those go unanswered or pushed aside, the ugly, harsh, protective momma bird side of me that is tucked well away 99.9% of the time flares out in a split second, scorching everyone in its path. However, our most recent meeting was entirely unlike that. Tim has made so much progress this school year that I sat, flabbergasted, as his school staff had nothing but positive remarks to make.

Tim’s teacher mentioned that Tim becomes short when some of his classmates don’t understand or follow her directions. She said that sometimes she will be in a huddle with Tim’s classmates, explaining something to them over and over again, and finally Tim will have had enough, stick his head into the huddle, and tell his classmates what to do, how to do it, and how ignorant they are behaving. His teacher was laughing as she told us this incident. Working full-time with special needs teenagers requires the ability to emotionally bounce, and this often means good-naturedly keeping the day-to-day classroom situations as light as possible.

*Deep breath on my part because I know that Tim knows better than to speak to other people this way.*

Here’s what we decided to do. I knew that we needed to leverage rather than force Tim to change, because he ain’t changing. He is who he is. I suggested that what I see is a feature of Tim that can be used as a strength. He definitely had leadership abilities, and his classmates listen to him. What we, as the adults in his life, need to do is help him develop these abilities as positive parts of his personality. Not everyone is meant to lead. You need followers, too, but Tim has never been a follower. He, like a lot of people with Asperger’s, takes in an entire situation instantanously, which means that he is ready to go in the blink of an eye. He doesn’t need time to digest instructions or decide what to do. He knows it immediately. As a team we decided that next school year Tim will be ready for one of the many jobs his school offers. For example, he could work in the cafeteria, help with janitorial tasks, or assist in the school store. Starting him out on small tasks will help boost his self-confidence and hopefully start to develop his leadership traits positively.

The evening after our meeting at school I stopped by Daniel’s house for a few hours to help him set up for Peanut’s seventh birthday party. Yes, Peanut is seven years old. I came into his life when he was 2½, and how time does fly. This year Peanut wanted a Lego-themed birthday party, so we had Lego birthday decorations, Lego presents, and a Lego cake. If your little one wants a Lego birthday party like Peanut did, you can purchase a Lego party kit through Target’s website (www.target.com). The options include Lego Star Wars and Lego City. Anyway, the first task I tackled when I arrived at Daniel’s house was assembling Peanut’s Lego birthday cake.

Lego cake.

Lego cake.

After mixing up the frosting colors, I started smiling as I began icing the bricks. I knew the dark colors would temporarily stain all the children’s teeth, which always makes for a fun event. It made me of the quote I read in Tracy Chevalier’s book and how some things in life are easier to tackle than others. Since Tim and I had the weekend together, I wasn’t able to actually attend Peanut’s party the next day, which left Daniel in a tizzy because he wasn’t sure what he was going to do with six hyperactive first grade boys for two hours. Before I left, we put together a couple of Lego-themed games and I told him if all else fails wing it and let them do free play. When I saw him Sunday afternoon and asked him how Peanut’s party went, he told me that the cake frosting stained all the boys’ teeth, and they kept smiling at each other to show off their blue, green, and red grins. No one chose the brick frosted with white for some reason 🙂 . I told Daniel how happy I was that Peanut had a wonderful birthday party, and that the frosting colors would wash off the boys’ teeth.

As Autism Awareness Month is drawing to a close, I wish to give encouragement to all parents, siblings, friends, and caregivers of people with autism or an autism spectrum disorder. Sometimes there are no easy solutions for the challenges that our loved ones face. The situations that arise from having special needs don’t wash away, and I don’t think they should be expected to. People come in all shapes, sizes, colors, and functionalities, much like Lego bricks, so why would we want to change that? Tim likes himself just as he is, as do I, and I am excited about helping him develop his strengths as he is becomes a young adult.


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The Escape Artists

I packed my things and ran. ~ Mountain Sound, Of Monsters And Men

On the first day of our vacation in Mexico I inform Daniel that every time I travel to this part of the world there is a chance I will decide to stay put. A vacation to the Riviera Maya will come, in the far-off or maybe not-too-distant future, where I simply don’t come back.

Daniel: That’s odd that you say that. Another one of our friends just mentioned doing exactly the same thing.
Me: Really?
Daniel: He was serious about it. He told me you can rent an apartment in Mexico for $4000 a year.
Me: Oh my. I had no idea. You probably shouldn’t have told me that.
Daniel: We have enough money between the two of us now. If we didn’t have our boys I’d seriously consider not going back.
Me: But we have our boys…

Caribbean Sea on the Riviera Maya, Mexico

Caribbean Sea on the Riviera Maya, Mexico

The reality of the fantasy is that it becomes more of a realistic option as I age. In our youth-obsessed society, I feel that people tend to overlook the advantages of growing older, which include knowing what you want, when, why, and how you want it, and having the means necessary to achieve your goals. Tim will be an adult in three years, and Daniel will start thinking about retirement sooner than later. One day I just may make a run for the border and tell the people in my life they are either welcome to come with me or visit any time.

For now a permanent escape is not an option. Vacationing once or maybe even twice a year is sufficient, where we can leave our lives behind for a week and enjoy something completely different. There’s also nothing wrong with planning ahead, even if the end goal is decades away. Life is a marathon, not a sprint, and running a marathon takes a lot of preparation before the big day.

It was upon returning home that I received the note from my girlfriend about her niece. Reality came crashing into my mind like a bull in a china shop. Having to recall a lot of the struggles and experiences Tim and I faced when he was little is mentally painful for me. Those were difficult years, and I needed to find a balance between telling my friend the truth, the whole truth, and nothing but the truth about raising a child with special needs while emphasizing that it will be one of the most fulfilling experiences of her life.

One coping mechanism I have when I am feeling emotions such as grief, anger, stress, and frustration is to move my pain around. This is why I run, to transfer feelings of discomfort from my mind to my body. Running has a pain component which makes it both mentally and physically challenging. The pain is the good kind, however, the kind that reminds you that you are alive. For me it’s usually the bottoms of my feet that eventually start to hurt. When I am outdoors, on my trail, in the fresh air, all it takes is the first mile and every negative, toxic emotion clears out of my head. Then I run until my legs tell me it’s time to go home. Then I run a little more to push myself.

The afternoon before I called my girlfriend I knew I needed to run. There were too many black things swirling around in my head. When I returned home 75 minutes later I was mentally ready to have the conversation I needed to have with her. I showered up because Tim won’t let me near him when I’m stinky, made supper for both him and myself, and then picked up the phone to call Chicagoland.

Here’s the situation: My friend’s younger brother is married with two children. His oldest is four, and she has been diagnosed with Asperger’s Syndrome. Her sibling is 11 months old. The mother stays at home with the two children, and the father is on a tour of duty in Afghanistan. The mother, functioning as a single parent with an infant and a child with special needs, has suffered a mental breakdown and has been institutionalized. The grandparents are caring for the two children until more permanent custody arrangements can be made, and this is where my friend comes into the picture. Her brother had called her from overseas to ask her if she and her husband would care for his two children until he returns to the United States.

My first response was to say of course the mother had a mental breakdown. Wouldn’t you? In situations such as this one, sometimes the only escape is into your own mind. There is no vacation in Mexico. There is no long run through the sunny countryside. What you do have are small beings who need more of you than you are able to give, and sometimes it becomes too much. People break. Your brain is an organ like your heart, lungs, stomach, and skin. The danger is that injuries to the mind can be difficult to detect until they reach the level of trauma. When your brain has had enough and packs its bags, the hope is that intervention and healing are still possible.

This mother has lost custody of her children, and her marriage is also most likely over. The main concern of the family is to place both children into a stable, loving environment. I told my friend that her home is the perfect place for them. Her boys are nine and three. She and her husband are financially secure. She stays at home, and he has a good job that provides him with the flexibility to come home for lunch most days. They always have a pet or two running around and are active mentors to high school youth in the community. I can already see the benefits of this type of home environment. One of the challenges for children with Asperger’s Syndrome is socialization. You can’t get much more social than this.

I told my friend that my main problem with raising Tim has been the never-ending struggle with his schools. I understand that time, money, and resources are limited in the school system, but as a parent of a child with special needs I need to say that any form of improvement would be most welcome. I am not an angry, peevish person by nature, but some of the challenges I have faced throughout Tim’s school years have brought out a side of myself I never knew existed. I have learned to accept this as an opportunity for personal growth, and harnessing and developing this part of myself in a positive way has actually benefited other areas of my life.

My friend asked me what I think of homeschooling. I told her I think she has an excellent idea. She has never done it, but it’s an option. And options in situations such as the one she is in are good. Again, it’s like the marathon where you need to plan ahead. The end goal for her two new bonus children, in addition to the two she already has, is to raise them to be independent adults who are able to accomplish their own goals and pursue their own dreams. The independence, goals, and dreams of someone with special needs may be very different than someone else, but what we as parents want for the children in our lives, biological or bonus, is for them to believe that they are living their best lives. There is not a single, correct way to reach that. The twists and turns are what make the journey so incredibly exciting.

Ahhhhhhhhhh.

Ahhhhhhhhhh.

This past weekend was the first meeting between the two little ones and their new caregivers. I told my friend to let me know how it goes, to keep asking me questions. What I can give her in return are honest answers and perspective. I can tell her what I think I did right as a parent and what I did wrong, or should have done differently, as we say in politically correct Minnesota…after living here for 15 years I’m still learning the terminology. Hopefully an update will be in the works soon.

For now, one last picture of the Caribbean Sea.


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Convergence

It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. ~ Audre Lorde

Tim’s first week of school was last week, and it was blissfully uneventful. The only catch is with his commute, which is taking longer at least for the first few months due to road construction. Tim’s transportation to school is provided by the State of Minnesota. Each morning we have a minivan pull up in our driveway which drives him and a few other students in our neighborhood approximately 16 miles across town to school. When school ends in the afternoon, the van is waiting for Tim, and he hops back on and is dropped off in our driveway.

The van had been scheduled to pick Tim up at 7:20 am, assuming a 30 minute drive to school. However, that time changed to 7:00 am, which gives the van driver a full hour to get his students to school by the 8:00 am start time. Much of this morning commute entails sitting in rush hour traffic, and one of the other students on the bus spends his time in traffic loudly stating how much he dislikes sitting in traffic. When Tim told me this, my knee-jerk reaction was to immediately say, “YOU DO NOT REACT. You sit quietly and let the adults on your van handle the situation.” Tim says that yes, he knows not to say or do anything, but I know my child and I am aware that when he is stretched to the limits of his patience, he goes blind, deaf, and dumb with anger.

Step back for a minute and imagine yourself in Tim’s situation. How would you feel if you had to spend an hour each morning, before your day has even really begun, sitting in traffic with someone you don’t know and probably don’t even like sitting next to you talking the entire time? What kind of mood would you be in when you got to wherever you are going? And you have a full day of something or other ahead of you where you are expected to keep calm, carry on, and NOT LOSE YOUR TEMPER.

My child will surely set a world’s record for holding patience if he makes it through the van commute this year without snapping. Since there was no snappage last week, and so far this week everything seems to be going fine, we’ll worry about that when it happens. My goal for both myself and Tim, as much as I can control it, is to stay converged. I have a picture that explains what I mean, and it is incredibly ironic that I came across it. The image came from a book called The Facilitator’s Guide To Participatory Decision Making by Dr. Sam Kaner. A coworker who spends the bulk of her time facilitating interactive groupthink at my company recommended the book.

From “The Facilitator’s Guide To Participatory Decision-Making” by Dr. Sam Kaner.

This is a model proposed by  Dr. Kaner on the dynamics of how groups make decisions. When you first form your group, you are feeling each other out. You all have different backgrounds, experiences, opinions, and ideas to draw from. As you discuss your new topic, you begin to realize that, while you may have something in common with the other members of your group, more likely than not you have a wide array of diverse perspectives. As you brainstorm your new ideas, you enter into a divergent process which can feel frustrating and chaotic. The key to making a decision point is to enter a process of consolidated thought, where you and your team members converge to a unified set of ideas.

In addition to managing groups of people in the workplace, this diagram also applies to raising a child with special needs, such as Tim. As a parent, I go through this process every school year. Tim never has the same teacher twice, and the support staff change as well depending on what Tim’s needs are at the time, his age, and how he is performing both academically and socially. We have had school years that have gone extremely well, but this only happens when both the parents and the educators make a concerted effort to cooperate and communicate effectively. When communication begins to break down, so does everything else.

The most divergent part, where absolute chaos threatens to break out, is usually the most stressful for me as a parent. Some years I feel like I am barely keeping the school situation under control. I have learned to manage the stress by exercising, eating a balanced diet, and spending time with friends. Finally, nothing helps more than a good night’s rest. Life becomes more manageable when I do these things for myself. It’s similar to the emergency instructions we receive before an airplane takes off, where you need to put your own oxygen mask on before assisting someone else.

Mmmm…need I say more?

Tim commented recently on how his entire life is one big ball of stress. He is at the age where he can identify what stresses him the most and how to avoid it, or at least de-escalate the situation. I try to spend time with him where we are in low stress environments, which can be as simple as hanging out at home. Tim enjoys cooking, so we’ve started making fun meals together. One of my coworkers dropped a big bag of tomatoes from his garden by my desk this morning, and I told him some of those will be going straight on the pizzas we are making tonight with homemade sourdough crusts. Tim enjoys spreading the sauce and cheese on his pizza and picking out his toppings. This simple task gives him a sense of control that he doesn’t seem to feel very often in his world.

This afternoon I received a message from Tim’s teacher indicating that he seems a little bored during maths and independent reading. I wrote back that Tim functions at a college level in both, and perhaps there may be a way to give him assignments that help him feel more challenged. His teacher also wrote that Tim mentioned he already knows all the science they are reviewing, so I mentioned that we’re able to do science experiments at home if Tim could spend class time doing data analysis or writing a report or presentation. These are the little things that Tim has no idea go on, the background communication between the adults in his life, that will hopefully assure him an appropriate education this year. I, as usual, remain optimistic for what the future holds, even if it is nothing more than loosely organized chaos.

Here is an excellent recipe for sourdough pizza crust from King Arthur Flour’s website. It is dairy-free and freezes well too. We split one batch into four rounds, and each round makes enough pizza to feed two hungry people. Bon appétit!

Sourdough Pizza Crust

  • 1 cup sourdough starter, unfed (straight from the fridge)
  • 1/2 cup hot tap water
  • 2 1/2 cups King Arthur Unbleached All-Purpose Flour
  • 1 teaspoon salt
  • 1/2 teaspoon instant yeast
  • 4 teaspoons Pizza Dough Flavor, optional but delicious

Directions

1) Stir any liquid into the sourdough starter, and spoon 1 cup starter into a mixing bowl.
2) Add the hot water, flour, salt, yeast, and Pizza Dough Flavor. Mix to combine, then knead till smooth and slightly sticky, about 7 minutes at medium speed using a stand mixer with dough hook. Place the kneaded dough in a lightly greased container, and allow it to rise till it’s just about doubled in bulk. This might take 2 to 4 hours; it might take more. A lot depends on how vigorous your starter is. For a faster rise, place the dough somewhere warm (or increase the yeast). To slow it down, put it somewhere cool.
3) For two thinner-crust pizzas, divide the dough in half, shaping each half into a flattened disk. Drizzle two 12″ round pizza pans with olive oil, tilting the pans to coat the bottom. Place half the dough in each pan. Cover, and let rest for 15 minutes. Gently press the dough towards the edges of the pans; when it starts to shrink back, cover it, and let it rest again, for about 15 minutes. Finish pressing the dough to the edges of the pans.
4) For a thicker-crust pizza, drizzle olive oil into a jelly roll pan (10″ x 15″) or half-sheet pan (18″ x 13″), or similar sized pan; or a 14″ round pizza pan, tilting the pan to coat with the oil. Shape the dough into a flattened disk or oval. Place it in the pan, cover it, and let it rest for 15 minutes. Push the dough towards the edges of the pan; when it starts to fight back, cover it and let it rest for 15 minutes. Finish pushing it to the edges of the pan.
5) Cover the pan, and let the dough rise till it’s as thick as you like. For thin-crust pizza made from fairly fresh starter, this may only be an hour or so. For thick-crust, using an old, little-used starter, this may take most of the day. There are no hard-and-fast rules here; it all depends on the vigor of your starter, and how you like your crust. Once you make it a couple of times, you’ll figure out what time frame works for you.
6) Towards the end of the rising time, preheat your oven to 450°F.
7) For a thicker crust, pre-bake the crust for about 8 minutes before topping. Top, then bake till toppings are hot and cheese is melted and bubbly, about 10 minutes. For thin crusts, bake for 4 to 5 minutes, then top and bake for an additional 8 to 10 minutes, or till toppings are as done as you like.
8) Remove from the oven, and loosen the edges of the pizza with a table knife or heatproof spatula. Carefully lift it onto a cooling rack; you can serve it right from the pan, if desired, but a cooling rack helps keep its bottom crisp. Serve hot.
Yield: one 14″ round, or rectangular thick-crust pizza; or two 12″ round thin-crust pizzas.


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The Worry Wart

Worry often gives a small thing a big shadow. ~ Swedish Proverb

And I had been worried about school starting soon.

Noon in Florida earlier this week.

Earlier this week my brother, who lives on the eastern side of Florida, posted a photo of his back yard. He and his wife, whom I tend to refer to as Bonus Sister, own a beautiful Spanish-style home in Port St. Lucie and live about five miles from the ocean. My brother was home the day he took this photo since his work had given him the day off. Hurricane Isaac was coming, and he documented the turmoil brewing over his backyard. You can tell by the body language of their new dog, Lady, that something is seriously amiss.

I hope that all is well along the Gulf Coast and southeastern seaboard of the United States, but the news reports that keep popping up on CNN state otherwise. I have noticed a lot of international readership on my blog lately, and, first, THANK YOU so much for your interest. I have hung out in general with internationals of all sorts for most of my life, starting when I was six and our school took in an immigrant family from Laos who escaped the Khmer Rouge. I remember playing on the swingsets of our school’s playground with one of their daughters who was in my class, and I watched her mother, who was probably no older than twenty years, out of the corner of my eye as she swung with us, with her eyes shut, and a small smile on her face, as if she was…decompressing from some traumatic event. As an adult, I now understand why this woman found northeastern Indiana so peaceful.

Back to the subject at hand, international readers. Second, thank you for reading because, if you are, you’re interested in events and experiences outside of your country, even if it’s only happenstance. Believe me that when you have wars, typhoons, government changes, brilliant successes, or really any major event occur in your home country, I am following everything eagerly. I love learning about new people, places, and things, and I love the feeling of community that modern media is able to provide. I love being connected.

When people ask me how I can STAND to live in Minnesota, how I can BEAR IT, why I don’t MOVE AWAY, my answer is usually weather-related. The worst weather we have in MInnesota are blizzards. What do you do during a blizzard? You sit inside your warm home, watch the snow fall while drinking a mug of tea, and then when the snow has fallen you go outside and play in it. Every time I venture outside while the snow is falling, I am amazed at the deafening silence of it all. My favorite time to do this is in the evening, when the windows in my neighbors’ homes are lit up a warm yellow and I am in the black night, surrounded by the gently falling flakes.

When people ask me, but don’t you get COLD? How can you stand the FREEZING temperatures? I respond that the one important investment in living in Minnesota is warm winter gear. We will cover this in another entry, especially since this season I need to purchase Tim new boots, but for now the take-home message is that spending money on a few good quality pieces of winter clothing is worth the price tag. When I am properly booted and bundled, I don’t get cold, not even standing still, and then the winter becomes that much more beautiful.

School is starting on Tuesday for Tim, and with the start of school comes dropping temperatures. I had been stressed, worried, losing sleep, unable to concentrate, because each school year for Tim is a new adventure. Some years school is great. Some years it is the opposite. This year Tim will again be attending Capitol View in District 916, and currently I have no real concerns. I had been starting to worry about whether I should be worrying more until I saw the photo my brother posted of the sky over his backyard, and then my worry about school vanished.

For everyone affected by Hurricane Isaac, I hope you are somewhere safe and dry. I hope your homes have not sustained too much damage, and I hope that you are with your loved ones. My worries pale in comparison to yours, and I wish every one of you well.

xoxo


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Child’s Play

We don’t stop playing because we grow old; we grow old because we stop playing. ~ George Bernard Shaw

Now that Tim is older (14 in June!), as tall as I am, and has bigger hands and feet than I do, he isn’t much for playing with toys anymore. That doesn’t mean that I can’t, however, so I hopped, skipped, and jumped out to Creative Kidstuff to see what types of wares they were selling during April’s Autism Awareness month.

One helpful employee pulled together a few items she recommended for Autism Awareness month.

Upon arriving at the St. Paul location, located at Lexington and Grand, I browsed around the store looking for a display of toys for children with special needs. When I didn’t find one, I asked one of the employees. She replied that a specific display didn’t exist, and that the toys and games were scattered around the store. Then she took me over to her computer, and as she began pulling up links to some of the recommended items, I quickly figured out why. Creative Kidstuff has literally dozens upon dozens of wares for children with special needs, ranging from emotional/behavioral to the spectrum disorders to physical challenges. Pretty much anything you touch in the store can be used for a special needs child. On Creative Kidstuff’s website, categories for children with special needs include

Social Engagement and Interaction

Emotional Development and Regulation

Creative Thinking and Imaginary Play

Sensory Motor Development

Communication

Cognitive and Problem Solving

Creative Kidstuff has toys, activities, and books for children of all ages. While a wide assortment of what Creative Kidstuff sells are applicable to children with special needs, the toys are for everyone. Daniel and I have taken Peanut to Creative Kidstuff on several occasions, and we have bought him blocks, books, puzzles, and science kits.

This has Tim's name written all over it!

Creative Kidstuff is partnering with St. David’s Center during the month of April to raise money for autism awareness. Highlighted events include the following:

First, St. David’s Center Community Education Series presents “Parenting Siblings of Children with Special Needs”. This lecture will be held on Thursday, April 26, from 7-8:30 p.m. at St. David’s Center, which is located at 3395 Plymouth Road in Minnetonka. You can register online at www.stdavidscenter.org/ces. This is a FREE EVENT and open to the public. Childcare is available, and St. David’s asks that you request it when you register. Presenters include

  • Angie Bellefeuille – mental health professional in the Autism Day Treatment program at St. David’s Center
  • Lori Brown-De Alba and Pamela Reigel – Both family support mental health practitioners in the Autism Day Treatment program at St. David’s Center

Tim would have enjoyed this game when he was younger, maybe between 8-10 years old.

Second, Creative Kidstuff is holding “Shop For A Cause” at all of their stores on Sunday, April 29th. 10% of all sales that day will be donated to St. David’s Center. Store locations are strategically scattered around the Twin Cities, including Edina, Maple Grove, Minneapolis, St. Louis Park, St. Paul, and Wayzata, so wherever you live, you have no excuse not to stop in 🙂 .

Finally, Creative Kidstuff’s Warehouse Tent Sale runs from Thursday, April 26 through Saturday, April 28. The tent sale is located at the Creative Kidstuff Warehouse (3939 E. 46th Street, Minneapolis). If you shop on Saturday, you save an extra 50%.

If you would rather shop from home, Creative Kidstuff’s website provides free ground shipping on orders over $50, and there is a promo code on their homepage that will knock an extra 20% off your order. For the rest of you, I hope to see you at the sales this weekend!


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The Eye Of The Beholder

Normal is in the eye of the beholder. ~ Whoopi Goldberg

The last few weeks have been busy, with this past week being especially hectic. Tim is switching schools, but before I get to that, I need to pay tribute to the LÄRABAR. Tiny, yummy, and usually made with five or fewer ingredients, these puppies have helped me get through my workday. Eating one at breakfast fills me up until lunch, and between the energy bars and lots of coffee I have been able to push full steam ahead. Nine hour workdays have been turning into twelve hour workdays, and Tim has started to give me flak about coming home from work so late.  This from the child who normally pushes me out of the house so he has the entire domain to himself.

Tomorrow Tim is starting the Creative Alternatives Program (CAP) at Capitol View Center in Little Canada. This is part of the Northeast Metro 916 Intermediate School District, which provides Educational Services, Special Education Services, and Administrative Services. Tim falls under the Special Education Services umbrella. The reason for switching him from the public school in our district to a program a 30 minute drive from our home is due to him being in a special education crack. Tim is too high functioning to be qualify for special ed services in his home school district, but he is too low functioning compared to most of the other students his age to remain mainstreamed. When you have a student like Tim who is 99.9% more intelligent than his peers but has next to no social skills, you need to become, well, creative, at figuring out how to help him be successful in life.

Tim’s father and I didn’t know much about Capitol View until we toured the school last week. This program was formed two decades ago and is really different than anything I have ever seen. The school is for high functioning children like Tim in grades 6-12, and they have neurobiological problems such as Asperger’s Syndrome, Tourette’s Syndrome, Pervasive Developmental Disorder (PDD), obsessive/compulsive disorders, and panic and anxiety disorders. The incoming student needs to be referred by his or her home school district, and everything, including busing the student to and from school, is at no cost to the parents. All I pay for is Tim’s lunch money, and he packs his lunch from home.

The entrance to Capitol View Center.

When you walk in the door to Capitol View Center, which is a former middle school, the first person you see is security. All visitors need to register at the office and wear a name badge. If I pick Tim up from school, I need to go through security to meet him. He cannot come outside to wait for me. As we started our tour, I noticed that all of the doors were locked. All of them. The classrooms, the art room, the bathrooms, the gymnasium. The only door I saw unlocked was the cafeteria, and that may have been an accident for all I know. The reason for the security and for locking the doors is to make sure that staff know where all the students are at all times. A student with a panic disorder, for example, could decide to run and hide, and if the doors are locked it makes it easier to find the escapee.

My next impression of the school was that is was VERY QUIET. Here is why: each grade has a maximum of eight students. That means that Tim  shares space with a maximum of 55 other students during his school day. In Tim’s grade, which is eighth, he is Student #4, so he will be spending a large part of his day with three other students. The students have the same teacher all year, in the same room, so there is no passing time between classes. Tim will be taking a traditional curriculum  of Math, Science, English, Art, Physical Education, History, and a few others, all with a twist. With Phys Ed, students do not change their clothes, which removes the chaos of the locker room. With subjects such as Math and English, Tim will be working at his own pace. This means, for example, that if as an eighth grader he is performing math at a tenth grade level, he will be given tenth grade math, not eighth. As Tim grows older, he can also start taking college courses at Century College as part of his high school curriculum to help him work ahead and ease his transition into independent living.

Tim's middle school for the past two years.

Any remnant of a disorganized environment has been removed at Capitol View. Contrast this to the middle school Tim has been attending for the past two years, where passing times create a sea of students clogging the hallways and stolen gym bags from the boy’s locker room remains a problem that school staff have yet to solve. At the middle school, the lighting is blindingly bright, the walls are decorated with the school’s name, mascot, and sporting events, and it screams social. Capitol View has dimmer lighting and a contains one rec room which some of the students have painted murals on over the years. Capitol View also has a large sensory room, which I have not seen in a school before. In addition to weighted blankets, which Tim enjoys, it has a small type of hugging machine, brushing tools, and visual stimulants such as lava lamps.

I left Capitol View Center hoping that it is a good fit for Tim. I am trusting other people to help make this decision for me because my perspective is skewing my opinion. As a teenager, I would have withered away in a place like Capitol View. I am a social person who likes to have a lot of friends and just hang out in general. Everyone new person I meet is, in my eyes, a potential friend. I would not have survived high school in a classroom with three other students. I loved lunchtime in the cafeteria, and the noisier and more people-packed it was, the better. I also never had to leave the classroom due to stress, and sitting surrounded by other students didn’t bother me.

I talked this over with a friend of mine who is an adult with Asperger’s Syndrome. He told me that he had also toured Capitol View Center, and his impression was that it was a warm and welcoming place. I told him it felt cold to me and unfriendly. He assured me that Tim will probably react the same way he did, and that is why the school is designed that way. We’ll see what happens. I have not told Tim what I think of his new school because I don’t want him to go in with any type of negative thought in his head. If this works for him, and if it gets him through high school and on to college, then let’s give it a try.