I Need to Know That I’m Not Alone

I need you. I don’t know if you feel the same way, but I need you. Who am I talking about? You! I am talking to you reading this. More than likely, you’re a loved one of a child with autism, maybe a fellow autism parent or autism family member. I couldn’t go through this journey without you.

There are days that I just want to sit down and cry. Cry for my child because he can’t communicate with me. On some days I just want to cry because I see how my children struggle with social situations, struggle with sleep, and all the other challenges that autism brings. I feel beat up and lonely, and then I see you and I feel so much better!

What would we do without social media?

I believe that I have met almost all of my fellow autism parents on social media. The conversations that we have are amazing! The blogs, Facebook pages, autism websites—they’re the peanut butter to my jelly! I need you! You bring so much to my life and I wouldn’t be able to walk this journey without you.

There is nothing better in this world than talking to you and listening to your story. The stories you share about your child bring tears of sorrow and joy to me. You and your child are so dear to my heart, just like my own boys.

The struggles you go through daily are real, like mine.

It’s all real. Yet, the joys over the smallest of things are totally understood by you and that’s something that I need. I need to know that you jump for joy over pee in a potty too! I need to know that you know what it feels like to finally hear your name spoken by your nonverbal child. I need to know that you have many sleepless nights too. I need to know that I’m not alone.

As I walk my journey daily, I need you. I need your friendship; I need to read your stories. I need to know that you’re there too. We have to stick together. What would we do without one another? I can’t begin to imagine.

On days that I’m sinking in my pool, I need to know that you’re there to pick me up! We’re a special group of parents that have the most special bond that anyone could ever have. We’re all strangers, but the feeling that we have for each other is real. The respect, the loyalty, the beautiful children that we are raising—it’s all for real. Very few bonds can be stronger than ours.

So yes, I need you! I need to know that I’m not the only warrior mom out there. I’m here to let you know that you are doing an amazing job in our small, difficult, autism world. Keep your head up and I’ll do the same. Do the best that you can to hang in there daily. I know it’s difficult. I know the daily struggles. I understand. I’m here for you and please don’t ever forget that. May we all find peace in knowing that this beautiful world of social media can connect us with one another. Keep up the good fight, fellow autism parents. We’re very lucky to be walking this unique journey together.


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.

This Is Guaranteed to Make You Smile

Although it’s a few years old already, we couldn’t help toe tapping and singing along to this great video, sung by then 10-year-old Christopher Duffley and the WOC Kid’s Choir. Chris is blind and has autism, and although he didn’t speak until he was in first grade, he always enjoyed music and sings with perfect pitch.

We hope this makes your day like it made ours.


A Letter to My Neurotypical Middle Child

To my dearest Clara,

I’d like to apologise for today. I haven’t been cucumber cool, and won’t be winning any prizes for my parenting skills. I’ve shouted too much and got angry too often, but I need you to know how remorseful it’s left me feeling. Because you, my lovely girl, do not deserve a shouty mean mama.

On days like today I’ve looked at your beautiful face and big blue eyes, and noticed (not for the first time) how much sadness you carry around. You look like you have the weight of the universe upon on those tiny shoulders, and it breaks my heart, it really does.

Your quiet, unassuming personality and good nature leave you vulnerable. The way you just get on with your business, and totally know your role in our family dynamic brings tears to my eyes.

You can be so serious, and it makes me feel too sad that you don’t get to be a regular kid. That we don’t see you skipping down the street full of the joys of Spring. Unless daddy or I take you out by yourself of course, and then your soul almost visibly lights up and you’re barely able to contain your excitement.

When your big sister wants to play nicely it’s truly the most joyous thing to watch, but when she’s feeling irritated, which she does multiple times every day, you are always the first one to cop it from her. I try so hard to intervene before you get hurt, but the damage done by low-level violence and name-calling is evident. What’s even more heart-wrenching for me to witness is when you mimic your sister’s behaviour, and bestow it upon your two-year-old brother.

In most families I know, the second and third children benefit from their parents being super laid-back. They made all their silly mistakes on the first kid, and by the time No. 2 is as old as you are, they’re virtually getting away with murder. It’s not the way this family rolls though; there is nothing laid-back and stress-free about us.

For this, and so many others things, I’m sorry my darling.

Sorry for the way that your sister controls every element in the games you play, sucking the fun out of them and leaving you miserable.

Sorry that we get so wrapped up in keeping life balanced and level for her sake, that you are often left underwhelmed, crying out for attention.

Sorry that it took us so long to realise just how much you hated your gymnastics class. Your sister needs it so much, you see, and it made sense for you to go too. It’s become apparent that it was causing you a lot of extra stress on a Saturday morning, and you can rest assured that we won’t be sending you back.

Sorry for the way that you sometimes bear the brunt of my anger and frustration, even though you’ve not really done anything wrong. You’re hardly being naughty, just doing what most four-year-olds do. It’s all a little house of cards, you see, and it can come tumbling down too fast.

People talk about the close sibling bonds that autism creates, and I can only hope this one day relates to our family. When you’re old enough to have it all explained, and you can understand why she does the things she does.

High-functioning autism is a minefield. How on earth could I possibly expect you to ‘get it’ until I do? I’m still very much learning and trying to get to grips with it myself. This is our transition phase, my beautiful girl, I just hope that any damage done doesn’t stick around. It’s a well-documented fact that being the middle child is hard enough.

Please forgive me for days like today. I’m trying my best, I really am.

Know that I love you all so very much.

Your Adoring Mama



After surviving a severely dysfunctional upbringing, Reneé is determined to ensure that her own children have a better start to life than the one she had. Last year she wrote her first book. Become the Best You is part memoir, part self-help, and details how she ditched negative influences and behaviour to break the cycle of dysfunction.

Read more from Reneé by visiting her website, Mummy Tries or follow her on Facebook.

Meet the Kids Marching in a New Orleans Mardi Gras Parade

Photo courtesy of The Advocate

Photo courtesy of The Advocate

I just read a fantastic article in the Advocate, about a group of teens with autism who marched in a Mardi Gras parade in New Orleans this past Saturday. If you’ve ever been to New Orleans during Mardi Gras, then you know what an overwhelming experience it can be for anybody, let alone somebody with sensory issues — we’re talking loud music, yelling, crowds, lights, a wild array of colors, and did I mention LOUD NOISES? It’s likely not at the top of any list of potential vacation spots for any parent planning a trip with a child with autism.

But yet, here’s a group of seven children and young adults with autism who didn’t just attend the Mardi Gras parade, they participated in it. Amazing! The group, known as the “Stomp Troopers,” are all students at a studio in New Orleans called the NOLArts Learning Center. The Stomp Troopers project came out of behavior-based therapeutic drama, music, and art classes that began this past December and are led by art therapist Kate Lacour, with the help of volunteers. For the past five weeks, Kate has been blogging about the techniques need to help the kids learn everything from sewing electroluminescent (EL) wire to their costumes to make them light up, to creating drums out of buckets, to creating their own logos.

Of course, the biggest challenge wouldn’t be known until the Stomp Troopers actually found themselves amid the din of Bourbon Street during Mardi Gras. But Lacour has been preparing them for this throughout the process.

“Mardi Gras can be overwhelming even for folks with the most robust sensory systems, and we are very aware that every step should be taken to minimize irritation from noise, movement, physical sensations and general chaos,” Lacour wrote on her blog. “Because novelty is usually aversive, things go more smoothly when presented in small pieces.” These small pieces have included using videos and pictures to help “envision costume themes or parade throws.”

Credit also has to go to the organizers of the Intergalactic Krewe of Chewbacchus parade, the 900-member Chewbacchus Krewe. (As you guessed, members are fans of all things Star Wars, as well as Star Trek and Dr. Who.) They worked with Lacour and her students, helping them design the drums, which are intended to help the Stomp Troopers drown out surrounding noise with their own, controlled noise. They also had them attend rehearsals, and made sure the group had a place right behind the Preservation Hall Jazz Band, at the front of the parade.

Chewbacchus founder Ryan Ballard is happy to be a part of “dispelling the idea that autistic kids shouldn’t march.”

Photo courtesy of NOLArts Learning Center“They came up with the concept, looking for a parade to accommodate children with autism, and I said absolutely,” Ballard said. “The Chewbacchus ethos is one of truly open acceptance.”

And it isn’t just the general public and the Stomp Troopers themselves who should be learning from the experience–it’s also families of children with autism. Sarah Ambrose, a music teacher for kids with autism, told The Advocate: “A lot of families feel they can’t fully engage in New Orleans culture when they have autistic kids,” Ambrose said. “We want to say nay to that.”

How did it turn out? It was an overwhelming success, even when the parade dragged on for an unexpected three hours. in Lacour’s words:

“When they reached the end of the route, the kids were exhausted but elated. ‘We did it! crowed Oliver. The whole crew cheered.”

We only wish we could have been there.

To find out how it went, read Kate Lacour’s blog here.


Looking to the Years Ahead

Looking Ahead

I have thought a lot lately about my journey with autism. I can’t believe it has been four full years since the word autism was thrown in my face. So much has happened in those short four years. I have grown and became stronger in ways that I never thought was possible. I have learned how to become a fighter, and I have learned more about the definition of “hope” than I ever thought I would.

In my short journey, I have shed countless tears of sorrow for my boys. At the same time that I shed tears of sorrow, I have shed tears of joy over the smallest of accomplishments. I have learned the meaning of “tough love.” I have been up around the clock for days on end, which has led to severe sleep deprivation. I have fought battles that I never knew were possible. I have become a pro at foreseeing the things that will trigger meltdowns with my children. I learned to read all of Trenton’s noises and body language and know what he wants, since he can’t tell me. I have learned that severe and mild autism are nothing alike.

I discovered how to become an advocate for my children. After all, they can’t advocate for themselves, so who is going to if I won’t? I have spent days and nights researching the latest news in order to find something to help them. I have spent hours upon hours on social media talking to complete strangers because we have autism in common. I have learned that complete strangers often know and understand what I’m going through better than anyone else. I’m not sure what I would do without my “autism friends” on the Internet.

Sadly, on my autism journey I have learned that autism didn’t just bring challenges to my children, it also brought challenges to my marriage, family and friends. I soon faced the fact that the people who don’t get it are often the ones closest to you. Unfortunately, because of this, I have lost family, friends and a marriage in the past four years. However, as I mentioned earlier, I gained many new loved ones dealing with autism by seeking out the people just like me.

It has been a rocky road the past four years, filled with many challenges. If I could sum up what I have learned over the past four years and will continue to learn the rest of my life in one short sentence, it would be this: I never knew the amount of strength and fight that I had in me.

Autism has knocked me down, but I always get back up and will continue to do so. I didn’t know before that it was humanly possible to go on such little sleep and still have the energy and strength to battle each day. I never knew that two little boys could teach me so much about both myself and their disability. The past four years have been challenging, yet very rewarding at the same time. I am very blessed to travel this difficult road in life. I look forward to what the years ahead have in store for me and my children. I know, just as in these past years, that we will have many difficult times ahead of us, but we will get through it. We have that amazing strength to help us get by.


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.