To the Mom Who Told Me ‘Autism Can’t Affect You That Much’

You were pushing your twin toddlers side by side in the swings next to my son, Cruz, and me. We got around to the usual small talk most moms share at the playground or park. As you began to lift your second twin from the swing when it was time to go home, he began to scream. It wasn’t just a “I’m not ready to go yet” cry; it was a high-pitched, blood-curdling screech! My son instantly covered his ears and started rocking, kicking and smacking the sides of his head. Automatic sensory overload.

I immediately scooped him up for comfort, and you apologized and insisted your son do the same, which made him scream even louder. I smiled and explained it wasn’t anything to apologize for, and that my son has autism and sensory processing disorder. And then your whole entire demeanor changed.

As I began to tell you about my son’s diagnosis and why he reacted the way he did, you swiftly straightened up while placing a boy on each hip. You scowled at my son and me and with no hesitation in your voice said, “I have twins! Get over it! Autism can’t affect you that much!” Then you rolled your eyes, whipped around and stormed off.

As an autism spectrum disorder advocate, raising awareness is my duty. My son was diagnosed with autism at 25 months old in September 2014. I’ve never seen his diagnosis as a disability; I see it as having a different ability. But just because I’m proactive and hell-bent on advocacy, don’t think for one minute autism doesn’t affect me that much.

When my child can’t express what he needs and I’m powerless to understand, it can break my heart like no love I have ever known. Countless tests, evaluations, blood work, CT scans and doctor appointments can be challenging, especially when I haven’t slept in days because I’ve been awake researching everything to get a grasp on my new reality.

Then there are times when I can’t go to the grocery store with my son due to sensory overload. The bright fluorescent lighting, deafening crash of metal carts and thumping of feet would be too much for him.

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Yes, it can be challenging and emotionally draining at times. And yes, I can second-guess myself as a parent and feel defeated by self-doubt. But when my little warrior makes eye contact, smiles, holds my hand, hugs me, says one little word (signed or verbal), I realize I’m so much stronger than my weakest day.

I believe we are the voices of our nonverbal children. We are the gentle comfort in their world that can spin with chaos. We are their North Star, guiding them home when they feel lost and alone.

My son is my hero. He has taught me more about life and love than I could have ever imagined. I pray I can return the favor someday.

I’m my son’s biggest fan and advocate. I’ve watched him fight for every single milestone. I’ve challenged doctors who were too busy to see the signs in front of us. I’ve had tense discussions with loved ones who are comfortable in denial and can’t accept that this is simply a part of who my son is.

I’ve found one of the most challenging aspects of an autism diagnosis is not the diagnosis itself; it’s the outsiders I need to enlighten. And through it all, I wouldn’t change one thing about my little warrior, even if it were possible. He’s a puzzle piece of beautiful perfection, gifted to me by serendipity.

So in closing, though I do have two children, you’re right — I have no idea what it’s like having twins. I have nothing but respect for your day to day struggle and cannot imagine what your life is like, and how the impact must affect you. However, do not mistake my kindness for weakness. You have know idea how autism affects me.

Follow this journey on Advocate Momma.


A Great Way to Help Kids With Special Needs Get Used to Flying

George Bush Intercontinental Airport in Houston, Texas, had a special flight scheduled for Tuesday, Oct. 13 — one with no plans to leave the gate.

About 80 participants went through airport procedures, then boarded a United Airlines Boeing 737-900 and pretended it was flying, the Houston Chronicle reported. It was part of a program called “Wings For All” that gives families of children with intellectual and developmental disabilities the opportunity to experience a mock plane flight in the hopes of reducing travel-related stress and meltdowns.

“It’s hopefully going to alleviate a lot of fears and anxiety and provide a great opportunity for communication to practice talking about what’s going to happen on the flight,” Jana Kennedy, a mother who participated in the simulation, said in the video below. “To have something tangible for them to see and practice with should really help better their flight experience.”

Wings for All preps kids for flying

How do you get autistic and special-needs kids used to the stresses of flying? Put them through a dry run at George Bush Intercontinental Airport.READ: Coomer / Houston Chronicle)

Posted by Houston Chronicle on Wednesday, October 14, 2015

Similar programs have been popping up all over the country, like “Wings for Autism,” a collaboration with Jet Blue and the TSA; the Philadelphia International Airport’s “Airport Autism Access” program; and Detroit Metro Airport’s “On-Board with Autism” program.

Flying can be a stressful for everyone, but for people with special needs it can be added sensory input and a change in routine that’s hard to handle. As we’ve seen in the past, not all pilots and flight attendants are equipped to properly deal with special needs, so extra preparation is always appreciated.

Watch “Wings For All” in action in the video above. 

Related: A Letter to JetBlue From the Mom of a Child With Autism

When Bathing Is an Issue for Your Child With Sensory Processing Disorder

My son has never been one for baths.

It was evident from the start.

When he was just a couple of weeks old, he was admitted to a children’s hospital. He was desperately ill, and no one knew why.

We were there for more than a month. At some point a nurse came in, took one look at him and said in total disgust, “You had better give him a bath. You can’t just let him be dirty like that.”

Shame and embarrassment flooded by body. I had been trying my best to use little washcloths to freshen him up, but I had no idea how to actually give him a bath in the hospital room.

I asked her how.

She looked at me like I had two heads, then pointed to sink and walked out.

As soon as she left, I started to sob.

Call it postpartum depression. Call it sheer exhaustion. Call it craving a bath of my own after living in that hospital room for weeks. Call it never having given an infant a bath in a sink and being terrified of doing it.

Call it reality hitting me – I am the mom. I have to figure this out. Good moms don’t have stinky babies.

Through tears, I got the water to a good temperature and dipped my child in.

To say he didn’t like it is an understatement.

The entire floor of the hospital heard his wails.

A different nurse ran in, thinking he was in serious medical distress. When she saw the scene, and my tears, her face softened.

She grabbed a blanket, expertly swaddled him, and led me over to the chair/bed thing that is standard for moms staying with their infants in hospital rooms.

She said, “Some babies need to feel safe when bathing. They need their bodies to be wrapped. Here is how I do it.”

She washed him carefully, keeping him covered, warm and swaddled tightly everywhere except for the small part she washed with plenty of Baby Magic and water.

Every towel, blanket and crib sheet was sopping wet when she was done.

But he was clean. And he had not cried once.

She smiled and said, “You can do it next time,” and walked away.

And I did.

And it worked. At least for the first few years or so.

And then, not so much.

As a toddler, he was fascinated by the water. As long as I filled the tub before he entered the bathroom (the noise bothered him even then), he was fine. But somewhere around 4 years old, bathing became a nightmare – for both of us.

The temperature changes. The feeling of the water on his skin. The bathroom lighting. Being naked.

All of it was uncomfortable for him at best. Painful at worst.

We tried bribes rewards with inconsistent results.

We tried allowing him to purchase any body products he could think of. Trip after trip to Lush, smelling all the bath bombs, shampoos and body washes – it helped us establish at least an irregular routine.

Then puberty hit.

And his need for showers increased just as his ability to tolerate one decreased.

Twelve years after that desperate hospital bath, I posted this on the Not The Former Things Facebook page, feeling desperate again for help.

“What are your best tips for helping kids with sensory sensitivities shower?”

The following is a list of recommendations from all the comments. Some are from moms like me, trying to figure it out. Some are from adults living, and living well, with sensory processing disorder.

1. Change to a “rain” shower head. It will help ease the sensory overload of the shower water “feeling like needles.”

2. Change to a “rain” shower head. This will cut down the noise of the water beating down considerably.

3. Take a bath instead.

4. Warm up the bathroom ahead of time to make the temperature changes less dramatic.

5. Install a handheld shower nozzle. This allows our children to have a sense of control.

6. Don’t worry so much about it. We have a cultural expectation that is very different from most places. Body spray and a quick wipe down will help.

7. Dry shampoo works wonders.

8. Dim the lights. Sometimes the lighting is half the sensory battle.

9. Set a schedule and stick to it. The more it becomes a standard expectation, the easier it will be for both of you.

10. Try different times of day. First thing in the morning or last thing at night can be the toughest times for our sensory systems.

11. Buy lots of baby wipes and allow him to use them instead.

12. Let it go. Many teenage boys fail to shower regularly. You have bigger fish to fry!

We are slowly working our way down this list. It’s a really good one.

I am so grateful for the help, and I am conscious of the fact that this list just doesn’t exist anywhere – except in the hearts and minds of those who “get it.”

This list, and so many more like it, are born out of real life.

Time and time again, I find the ones who are living it have the most practical suggestions, mixed with a ton of grace and lots of encouragement.

If you are like me, struggling with the feeling that you are all alone in the day-to-day, please let this list remind you that sometimes we just need to ask for help.

Sometimes we need to raise our hands and ask the question.

My son and I will figure this bathing thing out, of that I am certain.

And when we do, I’m just as sure there will be more questions to ask.

I am so grateful y’all are here to answer.

Follow this journey on Not the Former Things.

Lead photo source: Thinkstock Images

When My Son’s Autism Diagnosis Was the Miracle We Needed

When I was in junior high, my dad built a large wood soccer kick board in our backyard. I grew up in rural New Jersey, and we had a good amount of yard space to practice any sport. This board helped me develop the skills I needed in the various sports I played. I vividly remember throwing and catching lacrosse balls with it and playing one-on-one matches with my dad using the board as my goal.

It also was a way to bond with my dad. We spent hours outside together. We would talk about sports and school. He would give me advice, and I would tell him my goals for the future. The simple board helped create a special connection with my dad.

When my son, Max, was born, I was so nervous to be a mom. I loved him with all of my heart and soul, but I didn’t know what I was doing. Parenting was something new, and it was something I didn’t go to school for. I read books on parenting, nursing and having a happy, well-adjusted baby. But when Max started missing basic milestones and was socially behind his peers, I was unable to connect with him and didn’t feel like a good parent. I was failing my child. I wasn’t doing something right. Max would spend hours screaming all day and physically hurt himself. He was unable to communicate. As much as I wanted to understand, I didn’t. I was frustrated, depressed and worried I wasn’t a good mom.

Then a miracle happened. We talked to our pediatrician and discussed the things we had observed with Max. The doctor comforted us and told us there was help. He also told us weren’t bad parents. Instead, he explained we’re the parents of a special child who needs our help to navigate through life. 

At age 2 1/2,  Max was diagnosed with autism. This was a year and a half ago. Since then, I have been gathering the tools to allow me to enter his world. The diagnosis wasn’t the end of the world; it was the beginning of a brand new one. It’s a world I’m so lucky to be a part of. Autism has helped me reach both of my children. It has helped me become a better mother, wife and teacher.

Max has been the best guide in the world. He is a fantastic example of unconditional love, kindness, stubbornness and devotion to his love for life. He still faces challenges, we all do. But at least now he has parents who have the tools to help him be successful. Having two children with autism gives us even more tools because what we have learned works with Max might not work with our youngest son, Dexter. We have to be constantly learning.

Autism isn’t a label for my family. It’s a tool, a guide and a world that connects me to my boys.

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Follow this journey on Spaceship Max.

‘Switched at Birth’ Scene Tackles Ignorance Around Down Syndrome

The ABC Family show “Switched at Birth” is taking on ignorance surrounding Down syndrome.

In a clip from an upcoming episode of the show, the character of Lily, played by Rachel Shenton, is opening presents at her baby shower. We come to learn that her baby has Down syndrome after a guest apologizes for gifting her an elaborate train set. This prompts another guest to pipe in with some opinions about the genetic condition, to which the character of Kathryn Kennish, played by Lea Thompson, responds. Thompson shuts down the woman’s ignorant views.

The full episode will be airing on Oct. 19 at 8 p.m. on ABC Family, Zap2it reported.

Watch the clip below: 



h/t Zap2it

8 Ways to (Kind of) Prepare for Your Child’s Brain Surgery

Wouldn’t it be nice if an actual list or blog existed to prepare you for something like brain surgery?

Over the past two years our family has fumbled our way through tuberous sclerosis complex and all the crazy curveballs it can throw. From seizures to hospital stays, to therapies and now brain surgery. I’ll be honest though… I never expected to be having to prepare for brain surgery. It wasn’t something I’d put on my radar. Was I aware that behavioral problems may arise? Yes. Was I aware that seizures could wreck havoc on our daughter? Yes. Was I knowledgeable about most anti-epileptic drugs (AEDs)? Yes! I’ve advocated for our daughter, researched for our daughter and gone blue in the face fighting for resources for our daughter. But I never imagined being here, sitting on the phone hearing the words, “Our next step is brain surgery.”


It felt like we were being told of her diagnosis all over again. The words stung. I felt all the warmth in my body fall to the floor. Images of her having her brain opened up flashed in my mind along with images of her in a hospital bed, being unrecognizable to us. There’s something haunting about seeing a tiny child in a hospital bed that engulfs them. It doesn’t fit; they shouldn’t be there.


It’s been a few months since we heard those words, and we’re now nearing the surgery date. Nothing has changed as far as my fear. I still feel as if we’re blinded to what will truly happen once we walk into that hospital. My hope and focus is on my desire to not be constricted by the walls that this disease has put around my family. Hope is around the corner; I can see it and feel it on days when clouds aren’t weighing me down.

So here we are, a little over a month to go before we go down a less-than-inviting road without a map. We have no clue what to expect; we only lean on the small percentage of families who have traveled this road before us. We will lean on them until we have our own story to tell.

But if I had to make a list of how to prepare it would look like this:

1. Lean on your fellow surgery parents

2. Don’t get caught up in the what if

3. Pray… alot

4. Expect great things to happen after surgery

5. Trust in your ability to parent

6. Take a deep breath

7. Show your child love you never new possible

8. Allow yourself a good cry in the shower

For now, this is how I will prepare… if there is even such a thing.


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