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“If One Is Out Of Touch With Oneself, Then One Cannot Touch Others”-Anne Morrow Lindbergh

I was tired after a night of crazy dreams (Nazi’s, psycho religious cults and riding my bike across the Bong Bridge in a snowstorm and the bridge was full of holes) and had an early morning therapy appointment for Canyon. Then it was time to drop him at co-op, drive John back to work and go to Trader Joe’s. Lilo looked at me hopefully as I was grabbing things to go out the door. I really just wanted to take it easy but I couldn’t stand another day of her being trapped at home so I grabbed her collar and invited her along.

Passengers deposited, Lilo and I headed for the lake. The city has decided that I must now pay $10 to drive out to the end of Recreation Drive which is one of my favorite places in Chicago. Bastards. It’s all the more annoying because due to doctors orders I am not allowed to walk far so that means I can’t see my tree friends for quite awhile. I settled for parking down by the golf course and plugging the meter. It was overcast but almost warm so I left my coat in the car. The fields were flooded with the recent rains so Lilo and I mapped out a course through the park district lot over to the bird sanctuary.

As I was crossing the driveway a jogger passed us. A crazy, 90% naked jogger wearing only red speedo-type shorts and a red headband on his curly 70’s hair. He would not have looked out of place roller skating on Venice Beach with a giant boom box on one shoulder. I kept thinking, “thanks half naked jogger for way too much information” and tried to figure out how he could work into a funny Facebook status. Right about then it started to rain. Body soaking down pour.

Now I am not supposed to be walking let alone running back to the car so I decided to keep on walking. I was hoping to make it at least as far as the other side of the bird sanctuary where there is a lovely grove of old trees and a bench. I could sit and relax while Lilo ran around and stretched her legs. The rain is annoying but I am still appreciating being out alone with Lilo in nature.

Then I look up and there is crazy half naked jogger, only this time he is now 99% naked, the red speedo shorts are pulled down around his hips and well, there’s no nice way to say this, he’s masturbating. “Ok penis” is the first thing that pops into my head. The second is that the park district is mowing on the other side of the trees and no one would hear my scream if I had to.

So thankful that I had Lilo actually on the leash so I could just stare for a second and then turn around in shock and hustle out of the trees. I considered not saying anything but then decided this was creepy and a bit threatening. He knew I was coming down the trail and wasn’t making any effort to be subtle about what he was doing. So Lilo and I walked through the rain over to the Chicago Park District building to let the maintenance crew know. I enter the garage with an awkward look on my face.

“What’s up?” the nice man asks the soaking wet pregnant lady.
“Umm, there’s no polite way to say this so here we go. There’s a man jerking off in the bird sanctuary.”
The look of shock on the man’s face was kind of delightful. “ah, what??!!”
“Almost naked man masturbating over on your bird viewing platform. Just thought you might like to know.”
He grabs the phone and misdials, “Oh I always dial 411 for some reason” he says.
“Well this is some interesting information” I say. I describe the man and then Lilo and I walk away.

I am about 20ft away when he comes out and waves at me, shouting “They usually come really quick!” I shake my head and go “EEEWWWW.”, totally grossed out. He gets flustered and says, “No, I meant the police!”

So now Lilo and I have to walk the long way back to the car to avoid crazy half naked jogger and the flooded grass. By the time we get in the car we are both soaking wet and I am exhausted. I turn the heat on and update my Facebook status. When I get to Trader Joe’s a team member offers to let me dry my clothes off using the high powered hand dryers. I was that wet. Instead I just accepted her offer of dog treats for Lilo and went home.

I had my good camera with me but never took it out to get shots of the lake. So I have no photos to share but I have plenty of mental images!

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“Everything is temporary. Everything is bound to end.” Keren Ann

All the rain keeps washing away my sidewalk chalk art. Luckily I take photos…

“Tell me, what is it you plan to do with your one wild and precious life?”

Yes, I like to sit out in the yard and write motivational quotes on the sidewalk. I decorate them with little treasure stones. They please me.

“Listen- are you breathing just a little and calling it a life?”- Mary Oliver

On Saturday I was almost too much, even for me. Sitting out in the yard, listening to Pink Floyd and writing out Rilke quotes. It was an awesome way to spend a spring day but so pretentious that I was too embarrassed to put it as my Facebook status…

“Let life happen to you. Believe me: life is in the right, always.”-Rainer Maria Rilke

Sometimes I just write cute things for Canyon and draw little pictures…

I have fun but I am no Julian Beever…he is amazing!

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In the spring, at the end of the day, you should smell like dirt. ~Margaret Atwood

Well Canyon has that covered…

I was trying to take that close up of his hand but he wanted to see what the camera was up to…

We spent about 3.5 hours outside today. Since I am not allowed to do anything strenuous like yard work it was mostly 3.5 hours of leisure for me. And for Canyon it was 3.5 hours of digging in the dirt and splashing in rain water…

He was particularly interested in transplanting the dirt from one pot to another, or to the stairs, or the picnic table…

Around 7:30pm I had to lure him in with a bottle of milk and then up to the tub for a good hour of splashing and de-dirtifying. He should sleep well tonight.

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Grackle in the Magnolia

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Spring Continues…April 23rd in the Garden

The garden seems to have held it’s own during last weeks wind, cold and rain.

The bleeding hearts are exploding with growth…

Forget me nots…

The peonies are peeking through…

The magnolia tree was the one I worried about the most but she seems happy and well!

I like to pretend Mr. Frog is makin moonshine…

My yard is more like my sanctuary. It has no grass so I feel weird calling it a yard. It’s part garden but it’s also part wild place. There are old logs and driftwood everywhere. Piles of firewood. Lake Superior stones. Old mulch and rocks. Statues and windchimes. Candle holders and bird feeders. Lanterns. Kids toys. New plants, old plants and rotting wood. It’s like this crazy combo of decoration, new life and decay. I sometimes feel like I should organize it and make it fancy and perfect, but that’s just not me. I want to make some changes this year but the basic feel will stay the same. We are hoping to remove all of the works and work in some new type of ground cover. We are adding another climby thing for Canyon and that will change the feel. I am hoping to plant more flowers this year and do some vegetables in containers on the second floor deck.

But we’ll see. Today I was just happy sitting on a blanket by the slide, drawing with chalk and watching how the sun moves through the space, showcasing certain trees and plants as it slips down in the sky.

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Eggstravaganza!

Today we made our second annual appearance at the Northcenter Eggravaganza! Last year was rainy and wet but today it was gorgeous.

Now the original plan was to all go as butterfly’s but when we took out the set of wings for Canyon we realized they were way too girly. Not girly in a cute androgynous kind of way, not a David Bowie kind of way, more like a “My Mom Has Issues” kind of way. There was no way I could send him out in the street like that so we scrapped the idea and went with festive head gear. And I added a boa. Mostly because I just wanted an excuse to wear a boa.

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Life On The Ever-changing Spectrum

On Friday we reported to Children’s Memorial Hospital for Canyon’s big evaluation with “the specialists”. He wore his evaluation uniform, a t-shirt that says, “I Still Live At Home With My Parents”. Specialists and therapists love this shirt. We like to start things off with a little bit of humor.

We leave our stroller in a dark room that has three doctors/therapists sitting in it. There is a two-way mirror so that they can observe us once we enter the adjoining room. “it’s just like Market Research.” I say. They laugh. We go into the even smaller exam room next door. There are three doctor/specialists in this room too. John and I sit on two chairs and Canyon is directed to a table in the middle of the tiny room. We are instructed to not assist him in any way during the activities. We sit back and watch as Canyon is asked to play with certain toys. Bubbles, a toy car, a plastic sheep, etc. He explores the room and tries to climb up the chairs and tables. Once he realizes the toys are being kept under a sheet on the exam table he just wants to see what is under the sheet until bribed with another interesting toy.

After about 20 minutes the people behind the mirror join us and the cramped room becomes even more crowded. I feel claustrophobic but Canyon doesn’t even flinch. He smiles and laughs at everyone, enjoying the attention. He plays with shape puzzles and I am quizzed on Canyon’s skills and accomplishments, his weaknesses and areas for concern. This goes on for another half hour and Canyon continues to play. Toward the end of this he has grown tired of being trapped in the room and wants to escaper. Or eat. Or both.

The specialists/doctors all leave the room to discuss my family and we eat snacks. I wonder out loud if they are watching us from behind the mirror, to see how we handle the pressure.

They come back in.

This is where things get fuzzy. This is where I am torn between paying close attention and trying to control my facial expressions. This is where I try to remember to breathe.

“Oh he’s on the SPECTRUM. He’ll go to college, but right now he’s on the SPECTRUM.” Oh the dreaded Autism Disorder Spectrum. I am handed paperwork. They suggest that we try to get into intensive therapy programs. They suggest that he is by far not the worst case they have seen and that he might test out of the diagnosis with more intervention. We are complimented on how pro-active we are. How supportive we are. We are given a list of resources and told to come back in 6 months.

As they leave the room one of the specialists pulls me aside and says, “You are doing an amazing job.” I smile and try not to cry.

I don’t want to have to be amazing. I want to be normal.

According to Autism Speaks, this is how we deal with an Autism Diagnosis.

Stages Associated with Grieving

Shock
Immediately after the diagnosis you may feel stunned or confused. The reality of the diagnosis may be so overwhelming that you’re not ready to accept it or you initially ignore it. You may also question the diagnosis or search for another doctor who will tell
you something different.

I don’t know why we were even surprised. Maybe we were soothed into denial by all of his progress in the last few months. We watched documentaries on Autism and none of those kids really seemed to be like Canyon. His three separate therapists all said they did not see him as Autistic. So were we expecting to breeze through this evaluation and have them say, “he’s perfect! He’s just delayed! Nice work Mom and Dad!” No. But it was still felt like being punched in the gut when they said “oh he’s on the SPECTRUM. He’ll go to college, but right now he’s on the SPECTRUM.

Sadness or Grief
Many parents must mourn some of the hopes and dreams they held for their child before they can move on. There will probably be many times when you feel extremely sad. Friends may refer to this as being “depressed,” which can sound frightening.
There is, however, a difference between sadness and depression. Depression often stands in the way of moving forward. Allowing yourself to feel sadness can help you grow. You have every right to feel sad and to express it in ways that are comfortable. Crying can help release some of the tension that builds up when you try to hold in sadness. A good cry can get you over one hurdle and help you face the next.

This kicked in right away. I like to think I hid it well while in that little room but I am pretty sure if I was watching myself through the mirror I could see it all over my face. After we left the room we needed to wait for a moment to get an answer on a referral. Hanging from a piece of medical equipment was an electronic story book toy that Canyon has at home and loves. Of course he wanted to play with it and started to scream bloody murder when we left it behind. The poor kid had just been through 2 hours of analysis that cut into his normal nap time and he was exhausted. But we still needed to check out, schedule a follow up appointment and get approval from our insurance company for a series of expensive blood tests. The longer it took to do these things the harder it was for the three of us to hold it together. The final straw was having to hold poor little Canyon while they drew three vials of blood. He just looked into my eyes and screamed and cried. He had no idea why we were letting that woman hurt him.

Anger
With time, your sadness may give way to anger. Although anger is a natural part of the process, you may find that it’s directed at those closest to you – your child, your spouse, your friend or at the world in general. You may also feel resentment toward parents of typical children. Your anger may come out in different ways – snapping at people, overreacting at small things, even screaming and yelling. Anger is normal. It is a healthy and expected reaction to feelings of loss and stress that come with this diagnosis. Expressing your anger releases tension. It’s an attempt to tell the people around you that you hurt, that you are outraged that this diagnosis has happened to your child.

Yes, I was angry. Angry that people felt they could “observe” Canyon for thirty minutes and then proceed to define him with a diagnosis. Then I was angry that they proceeded to diagnose the twins in my tummy. “Just so you know the odds of the twins having autism are significantly higher because you already have one child on the spectrum. The girl has a blah blah blah higher risk and the boy is even higher with blah blah blah.” Awesome. Kick us while we’re down. Angry that this was happening at all.

Denial
You may go through periods of refusing to believe what is happening to your child. You don’t consciously choose this reaction; like anger, it just happens. During this time, you may not be able to hear the facts as they related to your child’s diagnosis. Don’t be critical of yourself for reacting this way. Denial is a way of coping. It may be what gets you through a particularly difficult period. You must, however, be aware of that you may be experiencing denial so that it doesn’t cause you to lose focus on your child’s treatment.

Try not to “shoot the messenger.” When someone, a professional, a therapist or a teacher, tells you something that is hard to hear about your child, consider that they are trying to help you so that you can address the problem. It is important not to alienate people who can give you helpful feedback and monitoring of your child’s progress. Whether you agree or not, try to thank them for the information. If you are upset, try considering their information when you have had a chance to calm down.

Oh yeah we want to be in denial. Lots of “how could they say that Canyon doesn’t know how to manipulate toys? Because he wouldn’t make the sheep hop? He’s never seen a sheep! And because he flipped the car over to check out the wheels rather than making it go “vroom vroom”? Whatever.” Lots of other examples of how they didn’t know and how could they say that after 30 minutes, etc. Everytime Canyon does something “non-Autistic” we comment on it. “Take that expert!”

Loneliness
You may feel isolated and lonely. These feelings may have many causes. Loneliness may also come from the fact that in your new situation you simply don’t feel you have the time to contact friends or family for company or that, if you did reach out, they wouldn’t understand or be supportive. In the pages that follow, we have some suggestions for taking care of yourself and for getting the support you need.

After the appointment we had to drop John off at work and I did feel lonely then. Canyon fell asleep in the car and I managed to drive us home. I pulled up in front of the house in the pouring rain and sat in the car, sobbing. I wasn’t ready for the sad Facebook status update and couldn’t stop crying long enough to call someone. I finally got us in the house and put Canyon to bed. I moped on the couch with Lilo then I went to sleep too. When I woke up I was calm enough to call Henning and that helped.

Acceptance
Ultimately, you may feel a sense of acceptance. It’s helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism. Accepting the diagnosis simply means that you are ready to advocate for your child.
The period following an autism diagnosis can be very challenging, even for the most harmonious families. Although the child affected by autism may never experience the negative emotions associated with the diagnosis, parents, siblings and extended
family members may each process the diagnosis in different ways, and at different rates.

Are we there yet? Yes and no. We accept the diagnosis as an opportunity to get Canyon the help he needs. It still sucks though. I try to decide which Autistic character from popular culture he’ll turn out like. Abed from “Community”? Max from “Parenthood”? That really tall girl from “America’s Next Top Model?” Please not “Rain Man”.

Give yourself time to adjust
Be patient with yourself. It will take some time to understand your child’s disorder and the impact it has on you and your family. Difficult emotions may resurface from time to time. There may be times when you feel helpless and angry that autism has resulted in
a life that is much different than you had planned. But you will also experience feelings of hope as your child begins to make progress.

So here we go down the rabbit hole. Monday I start making phone calls to get him the help he needs. The hospital didn’t give us much hope that he’ll even be able to get into the programs that they suggested even though he is an ideal candidate. But we have to try. Because we are his parents and we will do what ever it takes to get him the help he needs.

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Second Chances

I am usually a great plant person. I have house plants that are more than 20 years old. I have been known to rescue rubber trees from alleys, aloe vera’s from rummage sales. Moving out of state and need to find a home for a cherished piece of greenery? Call Laurie! I have lectured Garden Center employees on the proper care of plants and once spent 20 minutes rearranging the annuals outside of a Jewel to get the poor fuchsias and impatiens out of full sun. I am the Red Cross of Plant Lovers.

But every once in a while I get lazy or overwhelmed and am not the best plant guardian. Last year I bought more starts than I had time or energy to put in the ground and I left to fend for themselves on the picnic table in their original containers. Then a family member gave me a large rhubarb plant that I just never got into the garden, adding to my plot of shame. I know I should have tossed them into the composter since I felt like crap every time I saw them there, withered and constant reminders of my failure-but I couldn’t do them that final insult. I watered them and righted them after a strong wind but never really gave them a chance to thrive. Fall came and went and there they sat. I left them there all winter, never offering them any shelter or assistance but still couldn’t toss them away.

And now here they are…

It’s like they are saying, “We know you can do better. Let’s try this again shall we?”

Oh we shall! I will not betray them twice!

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