Why I’m Not Celebrating Autism This Month

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For me, Autism Awareness Month is a time of celebration. But I’m not celebrating that fact that my son was diagnosed with autism. That day was not one full of joy and happiness. Today I’m not celebrating autism. Today I celebrate my son, Brandon, and all his accomplishments. He works so hard every day to be self-sufficient, independent and to communicate.

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Imagine the frustration this little boy has when he can’t tell me when he wants something, that he needs something, that he’s not feeling well or that he’s simply excited. For example, when Brandon wants me to push him on the swing, he has to walk all the way across the backyard to come grab my hand, walk me back over and put my hand on the swing. Imagine if every time you needed something, you had to walk all the way over to someone, take their hand, lead them to what you want to tell them and hope they get what you’re asking for.

If Brandon wants something to eat, the only way he can tell me what he’s craving is if he can see it in the pantry and put my hand on it. He’s melted down so many times because I can’t for the life of me figure out what he’s looking for.  He can’t say “gummies,” so, if he really wants a packet of gummies and they’re hiding somewhere in the pantry, he just won’t get them.

March was an awful month for Brandon. He was despicable. Unbeknownst to me, he had an ear infection and ruptured ear drum. He was in pain and uncomfortable for weeks, and I hadn’t the faintest clue there was anything wrong with him. No wonder he would break into full meltdown mode without warning.

I celebrate this boy and all others who are affected by autism who have to work so much harder to do things we take for granted. You’re determined. You’re courageous. You’re strong.

This post originally appeared on Ramblings of a Special Mom.

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The Lifeline That Helped Me Find My Way Out Of an Eating Disorder

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A year ago today, I graduated from treatment.

Treatment. It’s a funny word, isn’t it? Treat. Although in my case it’s appropriate. Nearly every day for over two months I was prescribed ice cream for my recovery.

The journey began when I was 14. I was at summer camp in Colorado getting ready for the camp dance. All the girls in my cabin were trading outfits and I realized, disappointingly, that I couldn’t fit into anyone else’s clothes. I spent the evening shyly resting against the wall while the other girls flirted and danced and disappeared in the dark with boys from the neighboring camp. I couldn’t wait to get home to hear all about their night.

The next day at lunch I was halfway through my meal when I looked around the table and noticed that I was the only one eating a burger; every other girl had ordered a salad. Clothes, boys, burgers… and the lightbulb was on. I don’t know where I got the idea, but when I finished my food I went straight to the bathroom to throw it up.

Quickly, this became the way I funneled all my feelings, managed all my stress. Too much homework? Eat, throw up. SATs? Eat, throw up. Feeling left out? Eat, throw up. Too excited? Eat, throw up. I always thought each time would be my last. Throughout high school, my friends and I would make fun of image-conscious girls with obnoxious eating patterns. “Small salad, please, dressing on the side?” Blech. What a bunch of superficial losers. So I’d eat my Chipotle burrito like all the cool kids, and then…

When college began I promised myself a clean start. I don’t know how long that lasted, a month, maybe two? I got assigned a roommate with another eating disorder: anorexia. She’d pick on one bowl of cereal all day long. While I was doing my best not to over eat, I found myself feeling envious of her self-control. Eventually, the embarrassment of being so much bigger (in retrospect, a perfectly healthy size) than my tiny beautiful roommate got to be too much. I devoured her box of cereal and then some, and threw it all up.

And on it went. School. Sports. Jobs. Relationships. Family. Everything that could possibly trigger my insecurities did, and I managed them all the same way: day after day, alone in a locked room, binging on foods I wasn’t allowed to eat and then hunched over and clutching a porcelain bowl, begging for help from a God I didn’t even believe in.

I didn’t tell my parents until I was 25. My boyfriend at the time had been amazing at helping me keep it together, but when we broke up, I had a full relapse. I was so scared I finally called my mom and dad to ask for help. They did their best for me, but I quickly retracted from them, too, promising I’d gotten a therapist and everything was under control. The therapist only lasted about 10 sessions before I was back at it.

By the time I was 30, I had enlisted many more people to help me. My best friends knew, and were doing everything they could, I finally found a therapist I loved, and even though my outward behavior hadn’t changed much, my internal commitment was growing. When my dad’s illness had taken its toll and he was in his final days, I made the decision to make his death mean something. If he wasn’t going to be here to look after me anymore, the least I could do was to look after myself. I made a vow never to make myself throw up again. Ever.

And I kept it, mostly. One and a half times over the next two years I slipped up and I immediately told my support people. Though the purging had finally stopped, my recovery was tenuous at best because I was still restricting my food regularly, making excuses for skipping breakfast and lunch because “I ate too much yesterday.” Or “I’m going out to eat tonight.” I over-exercised and dieted. Except for throwing up, I did whatever I could to keep myself from gaining weight.

But it didn’t work. The internal struggle for permission, for myself, from myself, eventually got to be too strong, and I found myself acting out everywhere, sneaking food when people weren’t looking, binging late at night, and absolutely totally unable to stop myself. And hating myself for it.

One day, in October, 2013 I was with a group of friends who support one another to live a conscious life. It was my turn to receive feedback and one of the members, Jim, said the words I had apparently needed to hear: “You are a beautiful woman. You are a powerful manifestation of feminine essence, but you are f*cking it all up somehow. Maybe it’s your food thing, I don’t know, but I want you to find the best place in the world that deals with this stuff and get it taken care of.”

By December, I found myself standing on the doorstep of Monte Nido Eating Disorder Treatment Center, about to turn over every ounce of control in my life to receive the help I needed.

A year ago today, I graduated from my residential treatment, stepping down to receive three more months of out-patient care before moving back to the Bay Area in May.

When I woke up today, I had no intention to share this story publicly. I wasn’t sure if I ever would. “You’re not really one to hide things,” a friend said to me recently (about something else). I laughed. So much of my life has been lived in hiding.

But I don’t want to hide anymore.

I believe I was literally loved back to life by the people close to me. No matter how much I pushed them away, my mom and Sue never stopped asking how I was doing. I’ve lost count of the number of times I fell completely to pieces in Scott and Joanna’s arms. And so many others who have tried to love me over the years helped get me to the place where I could finally receive that support.

If someone you love has an eating disorder, don’t try to fix them; they already feel broken. And if you have the courage, don’t ignore it either; silence is shame’s best friend. Ask. Listen. Tell them you see them and you love them as often and in as many ways as you can. Even if it feels like the message isn’t getting through, the person you care about is trapped in there somewhere, starving for love.

It may take years, it probably will, but that love is the lifeline they will use to find the way out.

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The Heartwarming Way This Veteran Explains His PTSD to His Daughters

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When Retired Army 1st Sgt. Seth Kastle returned home to his family in Wakeeney, Kansas, after his latest deployment, he wasn’t his old self — he often felt angry and sad for no clear reason. After 16 years in the army, Kastle was living with post traumatic stress disorder (PTSD). He knew his condition was impacting his children but didn’t know how to explain it to them.

Unable to find the resources for what he needed, Kastle decided to write a book to help him explain PTSD to his kids. “Why Is Dad So Mad?” is a picture book that tells the story of a family of lions who work together to help Papa Lion cope with his PTSD, NBC News reported. Papa Lion is illustrated with a burning flame in his chest.

“In my book, I talk about the fire inside Dad’s chest. To me, that’s what it feels like,” Kastle told NBC News.

Kastle added that he hopes other family members returning home will be able to use this book as a resource. He is already working on his next book, which is about military mothers with PTSD, NBC News reported.

The book is already resonating with Kastle’s daughter, Raegan. “No matter what, I know there’s love,” she says in the video below.

Hear more about Kastle’s heartwarming project in the video below.

“Why Is Dad So Mad” is available now at Kastle Books.

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The 6 Stages of Receiving a Down Syndrome Diagnosis

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The moment your baby is diagnosed with Down syndrome, the universe injects you straight into your heart with the most powerful drug known to man; let’s call it “Enhancenon.”

In small quantities, this drug causes happiness, joy, euphoria, but an overdose of Enhancenon of this magnitude has some profound side effects on 98 percent of the population. Side effects that might be experienced vary vastly in each individual but can include any or all of the following:

Stage 1: Rage, fear and sadness – in any quantity

These emotions are so enhanced, you might feel like you want the world to swallow you up. You might feel you want the world to swallow your baby up, just to make these feelings go away. You might cry uncontrollably or be furious beyond anything you have ever felt before. You might feel grief – this baby is not what you had planned.

Don’t fight these feelings – they are all side effects of the overdose. They are not your fault and they certainly are not something that you can be expected to control at this time.

Stage 2: Heightened awareness

Suddenly everything you hear is “Down syndrome.” Friends especially will relay stories of knowing or having come across a person with Down syndrome. The diagnosis becomes a hot topic. Your eyes and ears pick up and seek out anything linked to the diagnosis and hawk-like you will see and hear more than you have ever done before.

Our advice at this time – FORGET everything you have ever heard before or any assumptions you are making now. Your perception will be skewed because the overdose is still coursing through your veins.

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Stage 3: Thinking you are a fortune teller

You will look to an unknown future and think you know what is coming. You will see and plan a future that you think is waiting for you.

Try and ground yourself at this point. Without this diagnosis, you would be marveling at your baby’s tiny fingers and tiny toes. You would be happily examining nappy contents and laughing at baby farts. Try and pull yourself back into the here-and-now and do these things.

The hallucinogenic qualities of the drug is strong, but resist the temptation to to map a future for yourselves and your baby, which is no more possible now than it might have been without the diagnosis.

Stage 4: The “fix” stage

You might become obsessed with Googling, obsessed with finding ways to help your baby. Drugs, physio, speech and language, portage, tests, vitamins… STOP! Enjoy your baby. You cannot cure Down syndrome and right now, your baby is a baby and needs you.

Deal with the here-and-now. Deal with any proven medical problems, but the rest should be as it would have been without the diagnosis. Cuddles, cuddles and more cuddles. Let your baby lead the way and it will all fall in to place.

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Stage 5: Opening doors

As your confidence grows, the drug allows you to step outside your comfort zone and make some connections. Slowly, there might be a little prick of realization coming through the fog: this baby is opening your eyes to something new. It might be frightening, it might be uncomfortable at first, but out there is a whole multinational, multicultural family waiting to embrace you.

Stage 6: Delirious pride

When you have reached this stage, your body has almost metabolised the drug enough to function normally again. You will see your baby smile or sit up or roll or put food in his or her mouth and your heart will burst with pride. The pride will come from so deep inside that it might make you weep.

The pride will be so much more enhanced than if your child hadn’t had the diagnosis. Now the fun bits begin and your eyes will sharpen and you will see your baby! Days will come and go and the diagnosis will not be at the forefront of your mind; your baby will be!

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The End

But really, the beginning…

This is the start, the start of your very amazing, wonderful journey together. The day that life overtakes fear, the day that love overtakes presumption. Enjoy it.

Once your body adjusts to the huge levels of Enhancenon, you will look into the eyes of your child and realize that this is the child you always wanted. You will feel much more at peace, much calmer.

The fact of the matter is that, occasionally, Enhancenon will still cause flare-ups of any or all of the original side effects, but for different or altered reasons. As for what Enhancenon is… it is pure, undiluted love.

When you finally adjust to this new life, you will realise how much better it has become – all because of this little, tiny, unexpected diagnosis that means so little in the grand scheme of things. You will end up feeling grateful and realizing that you have so much more love in your life now than you ever did before. Thank the Universe.

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This post originally appeared on Future of Down’s.

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A Down Syndrome Diagnosis Through the Eyes of a 3-Year-Old

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Miles’ diagnosis of Down syndrome at birth caught us by surprise.

Surprise, perhaps, is an understatement.

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Despite all the fear, sadness and grief for the dreams and expectations we originally had for our second child, one person immediately saw hope. Nolan’s eyes never shed a tear, but they gleamed with the pride and glory of seeing his little brother for the very first time. He didn’t see a diagnosis — he saw his baby brother, his future partner in crime and his lifetime best friend.

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In those first moments I feared all the things they maybe wouldn’t get to experience together as brothers. I focused on the “won’ts,” “can’ts” and “shouldn’ts.”  In retrospect, it took a 3-year-old to teach me the “wills,” “cans,” and “shoulds” of brotherhood.

With or without a diagnosis, brothers teach one other, learn together and live a life full of happiness, challenges, triumphs, fights, boogers, messes and everything in between.

One year later, Nolan is a typical 4-year-old who has heard the term Down syndrome, knows his brother goes to therapy and knows he wears blue glasses to help him see better. He’s more concerned with the toys Miles is trying to steal or chew on. He is also overly cautious of his little brother’s super gross reflux capabilities and other typical baby “aromas” he produces.

When Miles was born, his eyes begged us to love him and cherish him, even though he wasn’t what we expected. His older brother expected him all along and knew just what to do and say upon being promoted in his new brotherly role.

Sometimes superheroes don’t wear capes, don’t fly, and don’t always save the world. But they can help save a Mommy’s heart, and soar in just when they’re needed the most.

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A version of this post originally appeared on We Choose Happiness

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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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