What I’d Go Back and Tell Myself The Day My Son Was Diagnosed

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This is a note written to my past self on the day my son, E, was diagnosed.

Faith, just listen.

Remember that first time your husband spun you around to change things up? Hold onto that…

It is OK to feel relief in having a prescription indicating your child has autism, or PDD-NOS! Now you can get the services everyone has denied your baby for six months. It’s OK that you feel only relief; tears don’t prove anything. Your tears were spent fighting, and that’s OK, too.

Don’t dwell on the anger or the feeble attempts of others to deny your sweet boy access to any services; it cannot help you. They didn’t do it to hurt him or you. They did it because few people know about or understand regressive autism. Few people have seen it first-hand.

Do get that second opinion because you need it and it will lead you to the best team E could possibly have and you will finally feel some peace. Do continue to be your proactive self — it will get you everything E needs. The specialists will want to be your son’s doctors, and you won’t understand it, I still don’t, but you will feel eternal gratitude.

Do get organized, but don’t allow yourself to feel so overwhelmed and terrified about timing. You will get E every service he needs in good time, regardless of your sense of urgency and panic.

Breathe — life will continue. You need to remember yourself, and you need to practice healing breath daily. It will save you a whole lot of anxiety.

Do not dwell on labels: PDD-NOS, autism, levels, DSM 5, SPD, ADHD… you will know so much more regardless of how little you sleep. Do read scientific data, but do also check the source. Don’t feel like you must read every single success and horror story relating to regression! Don’t think cure; think growth and believe in E.

Find your people — start that page, be open to those around you. You will find the most brilliantly supportive friends from all over the world and you will be incredibly grateful for having them by your side every single day. They’ll always there when you need them. You also have the support of loving family members; they will stand by you however they can as well. Do not be upset by distance.

Try not to go crazy with worry for further regression with every illness, with every tantrum. Try not to dwell on the timing of his regressions, for you are not to blame.

Stop blaming yourself! JUST STOP. It is foolishly unproductive and science has not discovered an official why yet, so blame helps nobody.

Your other two children will manage with less of you, and you will find more of yourself to give. They will learn compassion, understanding and acceptance long before their friends. They will love your son so much and they will want to help him. They will sometimes take tremendous pride when they learn they are helping him or making life easier for you. They will love and respect you differently.

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You will continue to adore this sweet boy regardless of labels and he will thrive with your love and attention. The pace will be wholly unlike his siblings, but it will be growth. You will focus on what you can control, because living in fear of regression is no way to enjoy life for any of your three children.

Although one of the only things the diagnosing doctor managed to warn you of was that there is a huge divorce rate in the autism community, don’t even harbor a moment of worry. Your relationship will only grow stronger as you work as a team to do everything you can for all three of your amazing children.

It will not be easy, but the love you feel for these three amazing kids will make it so extraordinarily humorous, so beautiful, and believe it or not right now, so much fun. You will wonder if other families laugh so much.

We will find new measures and new depths of joy because it feels right. We will keep spinning!

A longer version of this post originally appeared on Rantings of an ADHD Mom 2 3.

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Everything I Thought About While My Dad Was in the Emergency Room

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“Hold nice and still. Are you in any pain?” the medic asks my 87-year-old father. Pain is not the reason we’re back in emergency room after being released one month ago from this same hospital. “104,” the nurse exclaims. A high fever. The doctor on duty wants to ask me a few questions.

“Has your father been sick?”

I chuckle under my breath as I respond, “He’s had six months to live for the last 40 years.” The man is amazing in so many ways. Longevity is just one.

I met my father when I was 7. Even at that age, I was stricken. It was love at first sight. Instinctively, I recognized tall, dark and handsome. I’ve always been a problem solver, so in my great wisdom of less then a decade of existence, I recommended that my mother marry this man immediately.

He brought a calmness to our family. We’re Irish/German/Midwest farm folk. He’s British aristocracy. He wasn’t comfortable with contention. We thrived on it. He demanded we keep our elbows off the table and asked to be excused. We introduced him to huge family picnics with fried chicken and potato salad. He taught me how to swing dance. Jazz was his music. He once danced with Joan Collins.

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I was serving in the U.S. Navy and living in Japan as a newlywed when I got the letter telling me my father had been diagnosed with lymphoma. My parents were living in California, relaxing by their pool and while applying sunscreen to my father’s back, my mother found a large lump. Doctors were still running tests, but it wasn’t good. Best case scenario, he’d have two years to live. I received an emergency discharge and returned to the States. That was 40 years ago. His cancer comes, he gets treatments, it goes back in to remission, he survives.

The nurse just informed me his white count is 1,000. He doesn’t have any immunity left. His chemotherapy has kept his cancer at bay but destroyed his body’s ability to fight.

He’s living with chronic obstructive pulmonary disease (COPD), which we believe is the result of years of smoking as a young lad. He stopped smoking almost 50 years ago, but the damage was done. He survived Stevens-Johnson syndrome in the 1950s. The condition is a rare skin and mucous membrane disorder. He was in the hospital for months in a coma as his skin shed and his fingernails fell off. His fingernails now are ridged, thin and small, a reminder of this chapter in his life. But he survived.

“His temperature is 105.5,” the nurse now calls out with concern. They rush and now have him lying on a cooling blanket with ice packets. His white cells are so few that his body’s only recourse is to turn up the heat on the infection. Tylenol, aspirin, antibiotics, steroids — it seems to be working. His breathing is slowing down, his blood pressure had dropped for awhile, but it’s better now.

He’s worse than he was when we were here a month ago. I can tell because the nurse has barely left his side; the doctors routinely pop in and out.

In spite of his breathing apparatus, the IV tubes, the mashed pea-colored half-draped robe, he’s still a fine specimen. Visualize Jack Lemmon. No one believes he’s 87. His legs are long, and he’s stayed slim. My father carries himself with dignity. His shoulders have only just begun to hunch. It isn’t age that’s lowered his gaze but rather a neck injury he suffered a few years back. His British accent adds to his allure, no doubt. Even a proper tongue lashing from him hits the ear with rhythm and a strange peacefulness. I must throw in the proverbial, “Don’t you agree?”

We love to tease him. His properness gives us so much material; this family of Chicago comedians he married. He hates popcorn, root beer, and nuts in desserts. He loves chocolate. In spite of stern direction and efforts to conceal, we always found his stash of KitKat bars.

1910497_1032240502747_4140525_n My dad gave up a lot to head this family. He gave up his bachelor pad, his Volkswagen Karmann Ghia, his homemade sound system. He brought with him his reel-to-reel tapes, his albums: Julie London, Ella Fitzgerald, Mike Nichols and Elaine May, Jonathan Winters. His sports car was replaced with a Volkswagen bus.

I wish I was genetically linked to this man; if I had a tenth of his stamina, his morality or his inability to lie, I would be a better person tenfold. He will step aside, turn the other cheek, give you the coat off his back and let you egg his house. What he will not do is let anyone show any kind of rudeness or disrespect for his wife. He loves my mom more than air, more than the air he cannot get enough of these days.

A week later, he’s home. A few more meds, tired, more equipment, but he’s home. He survived. I say, “Good job, Governor, you did it again!”

Thank heavens you’ve survived. I don’t know what I will do without you.

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Kids With Autism Need More Than Our Awareness

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Usually around this time of the year I complain about the endless winter in Canada, and I also dress in blue and I join the conversation about autism awareness.

Since 2007, April 2 has been dedicated to talking about autism, to educating the public about the reasons why many of our kids flap around when they get excited; laugh for no reason, or don’t laugh at all; don’t make eye contact or don’t answer to their name when they are called; repeat constantly the same song or TV show; and throw huge tantrums at the supermarket or scream uncontrollably under particular conditions.

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Two years ago, I joined this conversation looking for answers to my current circumstances, and I started to navigate a colorful spectrum of information, from other people’s stories and concerns to possible causes and strategies to support the development of children with autism. At this point, I don’t focus anymore on the causes; I already passed the stage of “why” to deal now with the “what” and the “how.”

It has been quite a journey! Like a rollercoaster ride that never stops, that makes me dizzy but at the same time makes me wish for more and more, because maybe, in the next lap, we are going to make it!

Many times I’ve felt that my life can be divided in two. But I now realize that if this is true, and if there exists a point in my life that cut it in half, it could be when I started to live in the autism spectrum. I say “I started to live in” because, even though I am not the one who has autism, my life and the way I see the world had changed tremendously.

When the doctor confirmed the autism diagnosis for our son, Alejandro, I felt devastated. It was a very difficult time full of frustration and deep sadness. The confirmation of his diagnosis was something scary, and it made me feel really sad and hopeless. At that time, I thought autism was an incurable illness that was going to live with my son forever, and that was going to make his life (our life) very difficult.

More than two years later, things have changed a lot! Alejandro is still nonverbal, but he is learning to communicate in so many ways. He is looking at me and sometimes playing with me, and that encourages me every day.

I still feel anxious and overwhelmed, but I’m also stronger than I was two years ago, and autism doesn’t scare me anymore! I admit that I get mad at it sometimes, that some days are so difficult that I just want to leave and never come back, but other days are better.

When I can connect with Alejandro and I see his smile, I can easily understand that it is just a matter of coloring one day at a time: listening to my son’s own music and forgetting about conventional milestones; learning to be patient, or pushing when needed and celebrating his efforts and progress; promoting awareness with inclusion and, obviously, taking some mama time to enjoy a glass of wine on Friday nights to recharge.

As April starts, I’m complaining again about the endless winter in Canada (looks like spring isn’t coming this year), I’m wearing blue, and I’m joining the conversation about autism. But this time, I am not limiting it just to awareness.

Being aware is not enough; we need acceptance. Autism is not a choice for our kids, but we can choose to understand them and promote inclusion for all the people who live in the spectrum. Our children need love and appropriate resources; waiting lists for treatment are ridiculously long and private services are way too expensive for average families.

Our children need to be invited to birthday parties and play dates; they need to have friends. They have feelings and celebrate love and friendship, just like you and me. How are they going to improve their social skills, if they are not given the opportunity to socialize?

Our youth need to build confidence, and have access to opportunities to learn skills toward a successful job and a bright future. Our adults need fair salaries and ways to be heard. Autism’s parents need a friendly hand, not a judgmental stare or a comment like, “But he looks normal,” or “At least is not cancer.” (Believe me, it isn’t nice and doesn’t help at all.)

Sometimes I think that life presented to me this colorful spectrum to teach me that I need to slow down and really appreciate the music of people and the colors of the world around me… to be more humane.

Explore with us, and learn to see beyond the spectrum…

A longer version of this post originally appeared on One + One = Four.

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Why He’s Asking Strangers on the Street About Helmets

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To the kids (and adults) without helmets:

Going for a bike ride? Headed to the skate park? Jumping on the back of a Harley? Think twice, my friends, no matter how old or young, or big or small you are. I’m here to share with you a personal story, one that will hopefully inspire you to put on that helmet before you go on your next ride.

I’m a religion teacher at a church near my home in Munster, Indiana, and at this church is where I met a little boy named Cody, and his big sister, Korey. At the time, both the kids were very young, and it was one of my first years teaching. I could tell from the moment I met these two adorable kids, they were going to go places and do things in life.

What I didn’t know is that it would take a massive catastrophe for their new journey to begin.

One night, early in June of 2014, Cody and his dad were out for a bike ride near a skate park in their home town. Cody decided he wanted to try going (slowly) down a small ramp. First few seconds: fine. Next: boom. Cody’s front tire on his bicycle had slipped off the ramp, and Cody toppled over. He wasn’t in much pain, but his mom ran to check on him anyways, because he suffered from asthma. Then, into the car, and to the nearest urgent care center they went, just to be sure nothing was wrong.

Sure enough, as the doctors looked Cody over, they noticed several fractures in his neck, back, and ribs, and one rather major fracture in his skull. Cody wasn’t in much pain at the time, but the next thing the family heard took the wind from their sails. Cody needed brain surgery, as he had suffered from a Traumatic Brain Injury (TBI). Over the next six days Cody stayed at their local hospital receiving the care and attention he so desperately needed.

All of this, just because he wasn’t wearing a helmet? Yes. All of this.

Word of Cody’s injury spread quickly throughout the area by way of mouth, and of course, Facebook. Soon after the accident, the family started two Facebook pages: Cody’s Medical Updates and Helmets for Cody. (Please visit the second Facebook page to learn more about the accident.)

The next thing on Cody’s to-do list will warm your heart.

After all of the surgeries, hospital stays and pain complications, Cody wanted to help others. His goal was to make sure that no other child, nor adult, for that matter, would have to go through all of the terrible things he did. He started approaching strangers, people on the streets, and sharing his story, and asking people to wear helmets to protect themselves from these types of dangerous incidents.

I’ve now taken it upon myself to help spread awareness for TBIs and Cody’s story.

I’m sure he’d love to see some new photos of people wearing their helmets because they heard about his story, and want to make a difference, on his Facebook page, Helmets for Cody.

He’s a 9-year-old boy making a big impact on the world. The least we could do is help brighten his smile, and put hope in his heart, so that kids in the future won’t go through all that he did.

If you, or a loved one you know, do not have a helmet, and plan to ride anything other than a car in the near future, PLEASE get a helmet, and wear it. It could very well save your life.

Post your photos to Facebook with the hashtag: #HelmetsForCody and tell them Katie sent you! It would mean so much to me, and even more to my little friend Cody, and his family, if you would do this for us!

Thank you, and remember to wear your green next March to show your support for TBI research and brain injury awareness!

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When My Service Dog Realized I Was Crying

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Emily Grad One of my favorite stories happened just this past winter during one of our horrible snowstorms. I’m sure you all remember those as well as I do! Anybody else looking forward to spring?

The snowstorm was just hitting us; it was starting to come down pretty hard. I wanted to take my service dog, Carmel, out before it would become impossible. I have a pooper scooper system, and I was trying to clean up after her when the stick spun and everything fell out. I’m a patient person, so I tried once more, and it happened again. Now I was getting frustrated. Carmel isn’t used to the snow; she was born in California. So I decided to bring her inside and have one of my aides hold the leash so I could go try again.

I rolled back outside; at this point, the snow was really coming down. I went where I’d left everything and realized the pooper scooper stick was now on the ground, and I couldn’t reach it. I had to go back inside, get the dog and roll back out. Carmel handed me the stick, I picked everything up, and you know what happened? The stick fell again. I was officially angry, wet and aggravated. My chair was getting wet, Carmel was getting wet, and I still couldn’t pick up after her. I began to do what anyone else would do — I cried. Bawled, actually.

I use a mask in the winter fro my asthma, and Carmel can’t stand it. I’ve worked with her on it, and she’s gotten better, but every time I put it on you can tell she gets uncomfortable; she doesn’t quite understand why my face “changes.”

So at this point, I had this mask on and I was crying hysterically and the snow was making everything a mess. Miserable. Suddenly, I felt something on my face. It was Carmel, upon my wheelchair. She was pawing at my face, even though that mask was on. She was trying to get me to stop crying. I started to cry more… and laugh. At the same time!

Service dogs help change peoples lives. I’ve had Carmel for four years now. Not only does she know and complete more than 50 different commands (like picking up dropped items and opening doors), she’s also a great emotional support. She makes me laugh and keeps me “on my toes” every day. She’s a joy in my life and I also met my husband, Frank, through Canine Companions for Independence. His service dog, Bastien, is a wonderful helper as well.

An added bonus is this: when I’m out in public, people don’t see my power chair anymore; they see my gorgeous labrador by my side.

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This Dancer Won’t Hide the Facial Birthmark an Agent Suggested She Photoshop Out

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Cassandra Naud was born to stand out.

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Via Instagram

On her right cheek just under her eye, Naud has a large birthmark covered in hair. When she was born, her parents were given the option to remove it, but doing so would have risked badly scarring her face, The Daily Mail reported. They decided against it, and Naud says she’s grateful for that decision.

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It’s part of who I am,” Naud told the outlet. “Having a birthmark distinguishes me and I don’t feel that it has ever held me back.”

Only once, while in high school, did she briefly consider removing it but changed her mind.

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Via Instagram

The 22-year-old from Alberta, Canada, moved to Los Angeles to study at the American Musical and Dramatic Academy, according to her Facebook page. She now works as a professional dancer.

A casting agent once told Naud to photoshop the mark out of her headshots, but she ignored the advice. Despite working in an industry where appearance is held to ridiculous standards, she’s had professional success and feels that her birthmark helps her stand out in a crowd.

People should appreciate their individuality,” she told The Daily Mail. “Times are changing, so don’t worry about looking normal. Don’t let bullies stop you and be proud of your uniqueness.”

Check out more of her stunning photos below:

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