5 Essential Tips for Parents Starting the Autism Journey

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My son was not diagnosed with autism until he was 5 and a half. He has a high functioning form of autism known as Asperger’s syndrome. For some people, a diagnosis can be sad moment. For us, his diagnosis was a relief. We finally knew what was wrong and how to approach it.

I have learned quite a bit in our four years post-diagnosis, but there is always more to learn. I think the very beginning is the hardest part. So here are some tips for those of you just starting the autism journey.

Tip #1: Don’t be afraid of the diagnosis.

Having a child with autism is not the end of the road. You need to do what you have always done: adapt to the situation. Yes, certain things will have to change, but now that you have a clue what you are dealing with, the changes are more readily known. Adapt, live and love.

Tip #2: Don’t believe everything you read, hear and see.

I fell into this trap at first. I was given books, sent links to articles and listened to stories from doctors and on forums. Don’t do it. Just don’t. At least not right away. No child with autism is like another, so all of the “advice” people give you might scare you and stress you out. Nobody knows your child like you do, and now you have another layer to get to know.

Tip #3: Do start looking into programs that can help.

There are a lot of programs that can help children with autism and their families. I’m talking about beyond the doctor. Local play places sometimes hold sensory nights for kids with special needs, plus there are wonderful OT groups, respite (help for parents) programs and PCA programs. There are also grants and more available. The list grows every day as the awareness does.

Tip #4: Prepare yourself for questions and judgmental stares.

I can’t count how many times someone has asked me, “Are you sure your son has autism?” A lot of people fall into the cookie cutter trap. They think if they’ve seen one child with autism that they’ve seen them all. I get questioned all the time. It comes with the territory. I mainly get questioned by family and friends. If your child has a more severe diagnosis, you may get questioned by complete strangers.

The judgmental stares happen daily. When my son shrieks in excitement because a store carries blenders. When we eat out and he has more food on his face and shirt than my 3-year-old. When he can’t figure out if he should push or pull a door or how much force he needs to use. When I bend down and give him a stern warning, through gritted teeth, that he needs to knock it off. People stare. People judge. Just perfect your fake smile or if you are like me, your major stink-eye!

Tip #5: Your child has autism, but autism doesn’t have to have your child.

We set expectations, goals and rules for our son. We know it can make certain things harder for him, but we know he can achieve whatever he sets his mind to. I know that my son is capable of great things, so I don’t want him to be defined by his diagnosis.

Again, adapt, live and love.

A version of this post originally appeared on BecominNeurotic and The Mad Mommy.

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Family Allegedly Raised $187 Million for Cancer Patients, Spent It on Themselves

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The Federal Trade Commission says a family in Tennessee raised $187 million since 2008 through various cancer charities in all 50 states and then used a majority of the money “to buy themselves cars, gym memberships and take luxury cruise vacations, pay for college tuition and employ family members with six-figure salaries,” the Associated Press reported on Tuesday.

According to the AP:

James T. Reynolds Sr., his ex-wife and son raised the money through charities including The Cancer Fund of America in Knoxville, Tennessee, and its affiliated Cancer Support Services; The Breast Cancer Society in Mesa, Arizona; and the Children’s Cancer Fund of America in Powell, Tennessee.

The FTC and all 50 states have now filed a federal lawsuit against the four charities, according to The Knoxville News Sentinel. Tennessee Secretary of State Tre Hargett said this is the largest charity fraud Tennessee has ever been involved in.

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The Words That Make Me Question How I Push My Son With a Disability

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There’s a fleeting awareness that materializes from time to time when I think of my amazing kids, especially my son, Bunz, and his friends who have physical disabilities. It’s not exactly a comfortable awareness. If it were, I would invite it in more often. But it’s fleeting and thank goodness, because it makes me question every parenting move I’ve ever made.

I noticed it again yesterday afternoon as I walked with Bunz through the corridors of our local child development center. Bunz has mild cerebral palsy and is an extremely picky eater due to sensory, gastrointestinal and muscular issues. We were late for his weekly visit with a feeding therapist and I couldn’t help but urge him to move faster as we rushed toward the therapy room.

Along the way, we passed a little girl around his age, brown pigtails bouncing as she knelt on the floor in front of a walker. Her mom, or maybe a female therapist, sat on the floor beside her. From my hasty glance, it seemed the girl was learning to push the walker down the hallway.

As we hurried past, I glimpsed at her face in tears. “It’s too hard! I can’t do it!” she wailed.

“Laura,” the woman said. “Look at me. You can do this. You’re already doing it! Let’s give it another try.”

There.

Those words.

How many times have you heard those same words from a coach, a birth doula, a best friend or a partner? “Look at me. You can do this.”

Throughout my life, those words have propelled me past countless fears and perceived shortcomings. At age 5, when my father swam with me past the ocean breakers. At age 10, when I called home on the first night of sleep-away camp. At age 15, before my first-ever cross country victory. At age 30, during the birth of our first child. At age 35, when I contemplated a career change.

Those are words of endurance, perseverance and determination. And these kids have those qualities in spades.

In that moment, I became suddenly, terribly aware that when we run a race, give birth without anesthesia or change careers after collecting various graduate degrees, that’s our decision. We elect to put ourselves through hell and back for a desired benefit. We sign up for that.

These kids don’t sign up for this.

What does that say about us, their parents? What are we supposed to do every day when our children are afraid or trying their hardest? Who are we supposed to be for these kids?

Whenever I have these moments of awareness – whenever it hits me just how hard Bunz must work to meet my expectations – I start to question my role as his parent.

Who am I to push him so hard? How dare I insist that he wake up every day and enter this race? Who am I supposed to be for him?

Well. I’ve given this some thought, and here it goes:

I am his cheerleader, his coach, his advocate, his mom. I am the woman who believes in him most. Together with his father, I will give him space to fall, to fail, to stand up and try again as he works toward independence.

I am the one who sees him as whole, perfect, complete. I see his light, his darkness, his weaknesses, his strengths. I see all of him. I see him and I believe in him. Unconditionally and without exception, I believe.

A version of this post originally appeared on Team Bunz.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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I Thought I Tried Everything to Stop My Son’s Pinching. Then I Tried This.

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My 6-year-old son can’t see, walk or talk. He has a few signs and some sounds I can interpret, but it’s hard for him to make us understand his needs and wants. It’s hard for him even to know what the possibilities are. He can’t tell me when he has a headache, had a tough day at school or when he wants me to stop talking about a sensitive subject. He can’t tell me what his favorite flavor of yogurt is, that something funny happened on the bus or that he wants to play his harmonica. The people who love him — his family and his school family — have become pretty good guessers, but we are almost always guessing.

Sometimes he gets frustrated, and that’s why he digs his fingernails into my hands and arms and leaves marks. Sometimes he pulls my hair — hard. It hurts, it hurts my feelings and it’s embarrassing. More than once I’ve had a big scratch on my nose, and people would ask me, “Did the cat do that?” I would just nod yes.

Therapists suggested that I make a spreadsheet and take notes to figure out a pattern of his “behaviors.” I don’t, though, because when he gets into a “pinchy” phase, he does it all the time for weeks at a time. And then one day it’s over.

One day, I picked him up out of his bed and expected to feel the usual pain from his pinching. Instead, he just snuggled with me. No pinching, no pulling. Both of us were relaxed.

When it started again, I tried using the language his teachers suggested: “Gentle hands.” I’ve tried putting him down as soon as it starts and holding his arms against his sides. To be perfectly frank, I’ve tried yelling. I have tried telling him, earnestly, that it hurts. And I have tried telling him it hurts my feelings, which made him cry bitterly. He understands so many things he can’t talk about.

Last week, after about six blissful pinch-free weeks, it began again. I told my husband, “This time, I’m going to pretend it’s not happening. I’ve tried everything else. I’ll protect myself, but I won’t say anything.”

I stuck with it for the most part, except for a couple of involuntary ouches. Then I noticed he wasn’t pinching as much. One morning, I picked him up, and he ran his fingers through my hair. He pulled them back out and placed his hand gently on my cheek. When we see his neurologist, I always tell him that my son is making progress, and he wants examples. This is the kind of proof that is difficult to describe to a doctor, but they’re signs that my son is learning self-control.

We all have these things we don’t want to do and don’t mean to do. Sometimes we have no good way of getting our hurts and hopes and feelings out. If we are lucky, someone makes a safe space where we can learn. I try to keep myself safe, but without holding back, without shying away.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Mom Says 17 Special Needs Students Were Excluded From Yearbook

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A high school in Utah has excluded several special needs students from their yearbook, according to one young woman’s mom.

Amber Bailey, 21, has Down syndrome and attends a transition program in Tooele County’s Community Learning Center, which shares a building with Blue Peak High School, according to Fox 8 News. Although they’re not Blue Peak students, Bailey and her classmates have been included in the school’s yearbook for the last two years.

This year, Amber Bailey’s mother, Leslee Bailey, says she was surprised to find that her daughter, as well as 16 classmates, were excluded from the yearbook.

Mat Jackson, director of special education for Tooele County, told Fox the change was made because this year special needs students didn’t participate in classes with Blue Peak students as much as they have in the past. Bailey is unhappy with that reasoning.

They’ve been to school with these kids. They’ve walked the halls with them. How would you feel if it was your child?” she tells Fox News. “It bothers me because it seems they’ve gone back in time to where we’re not including them, and we are going to tuck them away and say, ‘No, they don’t exist.'”

The Mighty reached out to Blue Peak High School for comment but has not heard back yet.

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The Ways My Wife Showed Me Love in the Midst of My Depression

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To My Wife, AKA Honeybear:

I want to say thank you for all you do for us and our family, for loving me so much and giving me a reason to be a better person.

When I was growing up, and throughout my life until I met you, I didn’t ever think I’d be able to face my problems and have this wonderful life that we now have. My illnesses threatened to create a world where I would always have trouble with daily life, until I met you. You, my beautiful, amazing and wonderfully kind wife, gave me new hope that I, we, could live an amazing life together.

When we first met over seven years ago, I was in a bad place. But you didn’t care. You just saw all of the good in me, and when we went through some really horrible times, you just saw my smile and you knew we’d be OK. You knew we’d make it.

Thank you for making me want to be a better person, a better wife to you and a better mom to our fur-sons. You and I have walked through a lot together, and you’ve always been the one person I could count on to love me unconditionally, help me with anything I have needed, support me in all aspects of our life, give me a laugh and always “see the good in me,” like you always say.

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Photo source: Thinkstock Images

Thankfully, you’ve always seen the good in me, even when others have not, and you have always been the one fighting for us to have the best life possible together.

There are so many moments that remind me how lucky I am to have you as my wife. There was the time I was suicidal and had to be admitted into the hospital for my safety and to adjust my medications. I’d just quit my job because I couldn’t handle it anymore, and I fell into a very deep depression. I was so miserable and didn’t have any happiness or joy in my life because of the depression. You were in a new job at work and were stressed with that, but when I called you at work to tell you that I needed to go to the hospital, you came right home and took me there. You selflessly stayed with me in the ER and went up to the unit with me, where you had to leave me for the night until visiting hours the next day.

I was in the hospital for a week and you came to visit me every single day. You brought me everything I needed and loved me through it all. On the weekend, there was a break in the visiting hours to let the patients eat lunch, so you had about an hour to yourself. You went to the gift shop and bought me a book that you filled out for me. That is just how you always show me your love — it’s always the little things!

what i love about you book

what i love about you book

You are my everything and I love you with all my heart. We have the best life imaginable, and that is thanks to you and your heart that’s as big as Texas.

Thank you for always believing in me and for doing whatever is needed to help our family.

I love you mostest infinity!

Love,
Your Sweetheart

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