The Look

Motivation

I’m not sure about you, but I’ve dealt with the stare numerous times since autism entered my world. You know the look you get from someone when they think your child is just acting out and that you, the parent, are not disciplining him correctly. Sometimes it is just a look. At other times, it can be the shaking of the head or the pointing finger.

It doesn’t matter how many times I get the look, it still hurts. I don’t let it ruin my day. I don’t let the look get me down. It just simply hurts. I hurt for my children. They simply can’t help it. I’m sure if they could change the way they behave they would love too.  They have just as much right in this world to try to go out in public as the kid next door does. Just because we have challenges that do not allow us to be quiet and still doesn’t mean we have to get the look or even worse, receive comments.

One of the first things that I was told after my oldest son diagnosis was to prepare myself for a rocky road with lots of people who don’t understand. Wow, where they ever right!

Honestly, I don’t blame the people who stare, look, or comment on my children.  They just simply are not educated on the often hidden disability of autism. Before my sons were born, and before I went to college for special education, I knew very little about autism. It had never entered my world before. Sure, I knew a few people with autism but that was about it. I didn’t know and understand the challenges that they went through behind closed doors.

So, for the people who do not live with autism; please don’t be so quick to give that look to a parent when you see a child misbehave in public. Don’t be so quick to say something that is judgmental to the parent. Not all disabilities have physical traits. Some disabilities, like autism, are hidden. You would have no idea and probably could never fathom in a million years what that parent and/or parents go through daily.

To the parents of kids with autism, let’s not be so hard on the people who judge us. I know all too well how difficult that is to do but let’s try to do it. They simply just need education on autism. Who is going to advocate and educate them if the parents and loved ones don’t? Let’s try to do our part and educate the world on our children. I know we expected the world to educate our kids but like we know all too well, life doesn’t always go the way we planned.

Every time I get the look from someone, every time I get a comment thrown my way, I don’t let it get me down. Instead, it is a huge motivator for me to raise awareness for my children’s sake.

We can help change how the world views our children.

We can make a difference.

On The First Anniversary Of Our Autism Diagnosis

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To the parents anxiously awaiting that first doctors appointment. Hoping, wishing, and praying that all those “idiosyncrsies” you see in your precious child, are just that, eccentric quirks. You’re longing to hear that everything will be fine – that it’s all in your head. That you’re just being overprotective, over reacting or jumping to conclusions.

I was you 365 days ago.

One year ago I sat in that sterile, white neurologists office regurgitating information about my son while he threw blocks, cars, and anything else he could get his hands on in the corner of the room.

One year ago I was told that my life was essentially over – while attempting to keep my composure, words I never thought would describe my life as a brand new mother were thrown my way – autism spectrum disorder, lifelong care, endless therapy, and thousands of dollars out of pocket. I sat there, attempting to take it all in – to absorb everything as I listened to a man who had just met my sweet son and I try and tell me that my son may never live alone and I may go broke attempting to care for him.

But today, today I’m drinking a glass of wine (or five) and skipping my evening workout. I’m going to sit in front of my TV and binge watch Chuggington on Netflix while I hold my precious little boy at my side.

Because we’ve survived.

We’ve survived one whole year of autism in our life.

If you would have asked me a year ago, I’m not sure I ever thought we would make it to the one year mark unscathed.

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To you newly diagnosed parents, I know it might seem like theres a dark cloud following you around and although this is new territory you’re venturing into, if theres any advice I wish I received at the beginning of our diagnosis, it would be…

Don’t google.

Google is NOT your friend. I repeat, Google is NOT your friend! The day my precious baby was diagnosed with autism, I immediately went home, locked myself away in my bedroom and googled. A plethora of information, most scary and worst case scenarios came up in my searches. It was information overload.

It’s okay to feel grief.

One of the hardest things about this autism journey is getting past the grief you feel and the expectations you previously held for your child’s future. It’s perfectly normal to feel a twinge of sadness as you see other children your child’s age jumping through hoops in terms of milestones, while your child is seemingly getting left behind. It’s okay to cry, it’s okay to take time for yourself. It’s okay if you don’t know what to do yet. It’s okay to search for what works best for your family.  It’s okay to scream and lock yourself away for a little bit, because sometimes that is the only place where you can find solace, as long as you realize when it’s time to brush yourself off, get up and be an advocate for your child.

Not everyone you meet will be kind.

Not everyone you meet will be sympathetic. Not everyone you meet will understand the struggle of raising a limited verbal child. Not everyone will understand how hard it is to go out in public and not have an anxiety attack or cry an ocean of tears, right along with your child when they’re arching their back, hitting themselves compulsively in the face, and throwing everything off the grocery store shelves. When they struggle, you struggle. When they hurt, you hurt. When they feel overwhelmed with the world, you can’t help but feel the same. You wish more than anything that the world would just understand your child. The stares. The whispers. The unkind words. The looks of disgust. Try not to let them hurt you too much, although easier said than done. Not everyone knows, understands, or cares about your battle. Allow those unkind and challenging instances to give autism a voice and to educate those around you.

Everyone will all of a sudden become “autism experts.”

Many times when people think of autism, they immediately think of Rainman. Remember, every child with autism is unique. Post diagnosis, the floodgates of advice will open. Most mean well, but some don’t. You will be told that your child “looks normal”, you’ll be asked “if you’re sure.” You will most likely get the spiel that vaccinating your child caused it – or that if you would just give them this or that, your child will be cured. Your child will be compared to your uncles, brothers, sisters, cousins, friend with autism. Your journey may be vastly different from those around you. What worked for one person, may not work for someone else. Oh yeah, and Jenny McCarthy is not God.

Find your tribe.

You can’t do this journey alone. It’s just not possible. When the world feels like it’s spinning and you aren’t able to stand still, your tribe will be there to keep you grounded. They will understand the struggles, the meltdowns, the anger and grief, the feeling of being alone. Find them. Love them. Cry with them. Thank them for being so freaking awesome in your life. Seek out any and every avenue to meet others faced with the same journey.

Don’t discount those little milestones.

For us special needs parents, it’s the little milestones that many neurotypical parents take for granted that mean the most to us. I remember the joy I felt the first time my son looked at me when I called his name. Or the time he used sign language correctly, after 8 months of practice, to communicate his need of wanting more juice. I think we both jumped up and down like crazy people the day he pointed to the fridge and attempted to say the word “apple” – meaning he wanted applesauce. You will never take those seemingly small moments for granted – and you will feel on top of the world, each and every time they occur. So many times your child will surprise you and exceed and surpass your expectations.

I know it might seem as though you have a huge mountain to climb – and you’re afraid because you can’t see what’s on the other side, but I’m here to tell you that things WILL be okay. I was YOU one short year ago. I remember being devastated and terrified of this new life I was forced to live.

I won’t tell you that it’s been easy – there have been more days than I care to admit that I would want nothing more than to crawl into a hole and hide away from the world. There are more days than I care to admit that I wish and pray autism away. There are more days than I care to admit the defeat I feel for my child when I see how long it takes him to master a skill. There are more days than I care to admit where I feel sadness thinking of the struggles my child will face later in life. There are more days than I care to admit where I wish I could understand that little boy’s world. There are more days than I care to admit where I wish self-injurious behaviors, anger, anxiety, and aggression didn’t rule our life every second of every day.

Raising a child with special needs can be a tough pill to swallow. It alters your perspective on parenting and transforms you as a mother, whether you want it to or not. The days seemingly become longer and longer, and patience starts to run thinner and thinner. One year ago my world came crashing down around my feet.

But, over the past 12 months, we have been able to pick up those broken and shattered pieces of our life. We have been able to find some amazing therapy and a place that feels like home. A place that has allowed my child to thrive and progress, more than we ever imagined possible. We have pulled strength, courage, and determination from places we never knew or even realized exisisted, ESPECIALLY on those days where the weight of the world seems and feels like a never ending struggle. We have immersed ourselves in autism groups and become advocates for a child that doesn’t yet have a voice. But, don’t let that fool you, because even without words, this little boy is sharing his love of life with the world.

I feel hopeful and confident about our future. We have prevailed. We have overcome an abundant amount of roadblocks, many that I never imagined we would be able to maneuver through. I may not have all the answers yet and there may be more twists and turns on this adventure than I would like, but I realize our life isn’t over and that autism doesn’t mean a death sentence. That this is just the beginning of our new and beautiful life.

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This Ausome™ article was originally published on Caitlin Cavallaro’s blog, “Life Through a Different Lens” and republished with permission. Please visit Caitlin’s website or like her Facebook page for more great words.

Waukesha Police Officer Saves the Day with Kindness

As many of us know only all too well, children are rarely on their best behavior out in public. Still, cloistering ourselves and our families off and living like hermits within our homes isn’t the right answer. While some of us do our best to run errands while the kids are in school or at home with the other parent or other caregiver, there are those occasions when we’re forced to shop with them. Or, we know that it’s a good idea to take our kids out with us on our errands to introduce new experiences. Either way, we do it and hope for the best.

It doesn’t always go as planned. That’s why it’s nice to hear more and more of these stories about strangers not just staring and pointing, or quickly averting their eyes and moving on, when our kids have public meltdowns. And what happens when they’re older, and on their own?

A public meltdown in a Target store in January led to somebody calling 911 because the teen was becoming “physical.” When police officers arrived, one of them approached the teen to find out what was going on, getting down on one knee so he could talk to her on her level. He soon realized that she had autism, and the root cause of the violent outburst was that she wanted a doll.

After asking his partner if it would be okay, the officer bought her the doll and the crisis was averted. Now, everybody has different parenting techniques, and we’re not saying one way or the other whether it’s appropriate to have purchased the desired item for the child.

However, what impresses us and, truthfully, makes us most happy, is that the police officers in Waukesha are being trained to recognize autism and mental health issues so that they can identify a situation more accurately and determine the best course of action for each and every person—not just for what they would perceive as “normal” behavior. This is a great step forward for the police department, helping remove stigmas one town at a time.

Unless You Walk a Mile…

A Little Patience and a Small Dose of Love

Love and Patience

She doesn’t pick up on social queues like girls her age should, and she doesn’t understand the concept of personal space- especially with people that she cares about.

She has a sensitivity to sound and her eye contact is poor.

She has to work extra hard when following multi-step directions.

She gives the best, tightest hugs and if you give her your time and patience, you would never question for one second how much she loves you.

She has no intellectual impairment but rather an encyclopedic memory that would blow you away.

Her glasses are always crooked and there are kids that exclude her, she also has friends that look for her and think she is hilarious.

She takes under her wing, and has a special place in her little 7-year-old heart for kids that are visibly struggling- so naturally and so much so, that if you were paying attention, it would make you stop and catch your breath.

She loves Star Wars and Pokemon, her books, music on the radio, her friends and her older sister.

She doesn’t listen well and gets obsessive about things such as time, schedules and menus.

Along with her sister, she makes up my whole world.

I would ask that you remember that you can’t always see what people struggle with on the inside.

A little patience, some understanding, and a small dose of love can make all the difference in somebody’s world.

An Open Letter to Family and Friends of Autism

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“If you have met one child with Autism, well, you have met one child with Autism”.

While these words perfectly sum up the complexity of Autism, they are limited to the diagnosis itself. These words do not speak to the needs of parents. Needs which are critically vital to the health and mind of those gifted with the responsibility of caring for someone on the spectrum.

Every parent needs the support of loved ones. Special needs parents however, need both support and a level of understanding not found in “typical” households. This higher level of support extends to grandparents, siblings, cousins, friends, aunts, uncles, co-workers and more. A smile and random phone call is nice for many parents, but what these parents need (and often hope for) is a true understanding (even an attempt) of the responsibilities of raising a special needs child by loved ones.

I know. I am one of them.

Autism is not like a common cold where a few pills can help. Autistic children are not pets you can leave inside. Autism knows no age limits (yes, older people have it also). Autism is not something every “professional” understands. Autism is different for everyone – all those on the spectrum are unique. Parents and/or caretakers living with Autism have a complex need and desire to find support and have others relate.

Special needs parents know the personal challenges all too well.

The loss of friends, the strain to relationships, family members who don’t understand, acquaintances who suddenly disappear, teachers who blame bad parenting skills, strangers who judge, the cruelty of other children and more. Lucky parents have amazing (or at least decent) support systems. Many others often feel like they’re raising a child on an island.

Five years ago, my world changed when my son was diagnosed with Autism. So did my view of everyone around me. I have seen incredible kindness from strangers, extreme ignorance from “friends,” unconditional love from unexpected people, the best in teachers, the worst in teachers, financial motivation of “professionals,” brutal honesty from loved ones and more. This entire journey has allowed me to grow in ways I never thought possible.

First and foremost, my son is my world. He is the single most important thing to me, and always will be. He has taught me more than I could ever teach him. His autism is not a disease, not a virus, not something toxic. His joy, his love of life, his charm, his laughter—all of this is the autism I see.

But I am human. I am not perfect. It took time for me to get here. Once my eyes opened, I saw someone who would change my life forever. He also changed my perception of humanity.

That screaming child on the airplane whom I previously wanted to scream back at?

Today I would gladly sit next to that child and have them scream in my ear for a 14-hour flight so their Mom (or Dad) can have some rest.

That “annoying” child flapping his arms around and making weird noises in the movie theater?

Come sit next to me: I’ll buy you popcorn and laugh with you for hours at a scene I don’t even understand. You are amazing.

That non-verbal teenager who will never listen to anything he’s told?

Let’s be awesome together and play with crayons, drawing undecipherable images for days. I’m in.

That Mom or Dad who is trying to hold it together while their child loses it in Target since he dropped a sock?

Mom, Dad. Don’t worry. I will get on the floor and make funny faces and drop a whole row of clothes on me to make him laugh while you both go for a 5 or 50-minute break. You are heros.

Almost nothing annoys me anymore—except for people who do not (even attempt to) understand.

Most people live in a bubble.

A bubble of comfort, a bubble of expected privileges, a bubble where “first world problems” seem to be more important than decent humanity at times.

For the most part, I don’t blame anyone. I used to be one of them. Many have paid their dues raising their own children; some families have saved for years to go on a “peaceful” dream vacation; some friends didn’t see you the way you saw them. However, for those who have people they love raising or taking care of someone with special needs, then it’s important to try and understand—truly attempt to understand—the challenges they’re facing.

How can you find out what these challenges are?

Ask Them. Be Direct.

Ask direct and specific questions like: “Have you seen an Autism specialist?”; “What did the doctor say about his rocking?”; “Have you had his eyes checked?”; “Has the teacher ever told you what he likes in school?” Be specific. Don’t limit your questions to generic words like, “How are they doing?” Your loved one is likely way too tired to respond with anything more than, “They’re doing good.” Basically, another wasted moment of politically correct conversation that didn’t help. Also, never say, “That’s what all little boys or girls do.” These words will likely shut you out of ever having someone open up to you again.

Offer Help.

Truly offer help. Don’t just say, “If you need something, let me know.”

Many special needs parents have a hard time letting go and asking for help. This is not because they don’t want to or need help—it’s because they literally don’t have the energy to explain everything required for you to actually help. Trusting your child with a babysitter for a date night, and being able to actually enjoy that date night without thoughts of war at home, is a task very few people will ever master. (They really should find another name for date night for special needs parents—“temporary leave” sounds better to me.)

Read and Learn.

Trust me, it’s scary when you first start reading about any special need. Now imagine how your loved one feels being years into this. They probably have Google nightmares at times.

Show Up.

Just show up. That’s half the battle.

No child was ever raised without a community. And if you want to understand how your loved ones are dealing with special needs, then you need to become part of the community.

ACCEPT RESPONSIBILITY

The responsibility is on you, and you alone, to take the first step. You might even have to take a dozen steps to break through. Most parents want help even if they say they don’t. Sometimes the challenges are just embarrassing to talk about, other times they are trying to show you they are strong. There are also many times when some parents simply cannot find the words to ask for help.

People change. People adapt. Your loved one is showing you how strong he/she is. Maybe it’s time you do the same.

When you do, the rewards will be much greater than you can imagine.

I know. It happened to me.

A Special Needs Dad.

A Very Proud Special Needs Dad.

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One Mother’s Attempt to Calm Her Daughter’s Meltdown

Meet Helen Rutan and her daughter Isabella, who has autism. This video has been viewed almost 800,000 times and shows what many parents of Autism go through every day. While it can be hard to watch, we think it’s incredibly important to present real stories about both the good times and the challenges with Autism.

The most important thing to always remember is — YOU ARE NOT ALONE.

This Mom is just one example of the bravery and patience many Autism parents go through to help their children grow. Helen’s caption for the video reads:

“She is a sweet little girl with severe autism. She cannot speak, but she laughs, smiles, and adores being tickled! Every once in a while, she spirals into a meltdown and tries to bang her head. When attempts to soothe her don’t work, Isabella’s mother, Helena is left with no choice but to restrain her, as she does in this video. ‘It’s utter torment to a mother’s heart and soul,’ Helen writes in the video’s description.

“The bigger she gets the harder it is to control her….I won’t be outdone, though, I’ll become a body-builder first.”

We salute you. Both of you.

Katy Perry’s Impact on Autism

Katy Perry is one of the most famous singers in the world with number one hits like “Teenage Dream”, “California Gurls” and “Firework”.

She is also the first woman to have five number one singles in America from a single album.

However, for the autism community she has done so much more. She has provided hope, inspiration and tears of joy for millions of people worldwide.

In 2012, at Comedy Central’s “A Night of Too Many Stars”, Katy teamed up with 11-year old Jodi DiPiazza (who has Autism) to sing her hit song “Firework” and it could not have been more amazing. After the performance she said:

We couldn’t agree more. Over 9 million views later, this video will eternally be one of the greatest moments in music.

 

The Life that Built Me

If you are like me, you often wonder how in the world you got to the place that you are at in your life. Seriously, it seemed just like yesterday that I had no worries in the world but now I have many. Autism wasn’t a part of my life before I had my sons but now it is a huge part of my life. I have come to realize that it has been the best thing to ever happen to me.

Now don’t get me wrong, I would love to not have the worries about what will happen to my children when I am gone. I would love to not ever have to worry about whether Trenton will talk or not. My daily list of worries are enough to send most people over the edge. However, when I think about all that autism has done for me and my sons, I can’t help but think that it has been the one that thing that has built me. It has made me the person that I am today.

The strength and courage that it has forced me to do daily is phenomenal.

Autism doesn’t allow you to give yourself a choice. It forces you to do the unimaginable. It builds you up to be even stronger that you ever thought was possible. It forces you to walk the daily journey with the most courageous spirit of anyone. Autism has the power of turning a family upside down but it is how that family responds to their new, unexpected journey that will determine who they are in life.

I never thought I could be so strong but I am. My strength grows daily through our challenges that we face.  I am beyond blessed to say that autism has built my strength  and courage to be the best that it has ever been and ever will be.

Autism is known to bring many challenges to not just your child but your whole family. In fact, it completely changes the life that you had and that you thought was possible. Autism will build you a completely different life and it is can be amazing if you allow it to be.

Some families are not as affected as others. We all know that it is a spectrum and some have more challenges each day. However, in one way or the other, autism builds you. It builds your loved one that it has affected and it builds your whole entire family and character.

In the beginning of my journey it was hard for me to see that. I spent many days crying and simply just trying to survive in a whole new world that was beyond challenging. Nonetheless, I realized that autism wasn’t going away. It was part of my children and part of me. With that said,  I wanted to make the most of it. I decided to let autism build me up to be the best person possible and to make the best life that I could for my boys.

I know your journey isn’t easy. Mine is not either. However, lets chose to let our new life build us up to be the best that we can be.

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Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.

She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.

To read more of Angela’s journey please visit her website or like her Facebook page.