The Moment I Knew My Husband and I Would Make It Through the Diagnosis

Eleven years ago my husband Jeff and I made our official debut into the world of autism.

Our then 18-month-old son Justin was given the diagnosis of PDD-NOS by a lovely and very caring developmental pediatrician. At the time she didn’t want to give him an official autism diagnosis because he was young and he was affectionate with his parents.

As the visit concluded she recommended we take him to one of the two medical centers nearby when he turned 2.

We hunkered down for six months and did 30 hours a week of therapy ourselves (at the time, Virginia’s early intervention system didn’t recognize an autism diagnosis) and waited for the big day we’d finally get the “A” word. When it came time to take him to the nearby hospital, we thought we’d get the official diagnosis we’d eventually need for a preschool program, and that would be that.

We could not have been more wrong.

Everything ran fairly smoothly until we had a lengthy wait for the examination by their developmental pediatrician, who I’ll call Dr. L. (My theory is your wait time for a member of the medical profession is directly proportionate to how important they feel you should think they are.)

Justin let his displeasure be known throughout the entire physical exam, but finally she finished. I then made the mistake of asking her if there were any tests that would help determine the cause of Justin’s intermittent reflux, diarrhea and constipation. She replied in the negative and then brightened considerably. This incredibly taciturn doctor actually looked like she was headed for a spa day. Beaming, she let us know there were no tests to be conducted on these issues but Justin should definitely get a 24 hour EEG.

I asked if there were any studies out there showing this test could actually produce results that would help autistic kids. She excitedly told us her colleague (we’ll call him Dr. Z) was performing a study on overnight EEGs, and if we were lucky, there would still be room for Justin to participate.

She then pointed out the pictures lining the walls of the room that showed a number of children with intimidating head gear. All of them were smiling, looking at the camera and were peacefully wearing what looked like an alien football helmet strapped to their skulls.

I sensed Justin wouldn’t even let us get one damn electrode on his little head.

I reiterated my question about how this could possibly help my son, and looking deeply offended, the developmental pediatrician responded that we would be helping science, implying how could we ask for anything more?

Jeff and I locked eyes, and I saw his expression of exasperation, fatigue and a little dose of hilarity mirrored mine.

That was the moment I knew my husband and I would make it.

We were a team.

We were in this together.

And we both thought Dr. L was full of crap.

We’ll be married 19 years on Monday. While our journey with autism has certainly had its share of bumps along the road, we’ve weathered them all together. We learned for our marriage to thrive, and not just survive, we have to take time for ourselves individually.

We learned we had to carve out time together without our kids, even though it’s stressful to make those occasions happen.

We’ve learned how to cover for each other when one parent has had enough.

We’ve learned how to ask for outside help, which wasn’t easy for us.

Finally, we’ve learned how to find the humor in almost any situation with our kids. I believe that’s the glue that kept us together the last 12 years.

We learned how to take a deep breath and rely on each other.

He’s my partner and my friend, and I wouldn’t want to walk this road with anyone else.

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Why I’m Thankful When I Find Poop on My Shirt

I looked down and saw poop on my shirt. Oh. Yes, it was on my jeans too. Too bad I was already in the car on the way to pick up my big kids from school. It was too late to turn around. So I just went with it.

I’d changed the bedding, scrubbed the carpet and changed her clothes twice already. After the second “poop massacre” of the day, I felt tears creep into the corners of my eyes. Yep, I was feeling sorry for myself. This wasn’t how I wanted to spend the day.  

Then she smiled at me. And my perspective changed.

I thought about the poop. I may be cleaning up poop for the rest of my life. But as long as the poop is here, that means she is here. Smiling. And as long as she is here, I will love taking care of her. I mean it. I love taking care of her.

It was then I was reminded… a happy life is totally dependent upon perspective. A poopy shirt means my daughter is alive and well. Having to prepare meds five times a day means she is here. If she were gone, I promise you I would miss these things so much. It takes a daily attitude adjustment to get my perspective in its proper place.  

It got me thinking about other things in life — how they can jolt things into perspective too.

My husband’s clothes left on the bathroom floor. It means he’s here. He’s fun, full of love and uninhibited. He balances me out so well.

My child cannot walk. It means I can cuddle with her for the rest of my life. And she doesn’t wiggle to get away.

My child cannot talk. I get to imagine all the beautiful things she would say to me if she had the words. And my imagination never includes sass.

Hospital visits. They allow me to come in contact with incredibly loving, selfless compassionate people. And they allow me to watch God at work.

Even the betrayal of a friend. It makes true, loyal friends look spectacular and makes me adore them even more. I’ll never let go of them.

With almost every circumstance, there’s a blessed silver lining. It can be seen with a quick, intentional shift in perspective.  

It was no coincidence that after mulling over these thoughts, I read the following passage:

“Bittersweet is the idea that in all things there is both something broken and something beautiful, that there is a sliver of lightness on even the darkest of nights, a shadow of hope in every heartbreak, and that rejoicing is no less rich when it contains a splinter of sadness. Bittersweet is the practice of believing that we really do need both the bitter and the sweet, and that a life of nothing but sweetness rots both your teeth and your soul. Bitter is what makes us strong, what forces us to push through, what helps us earn the lines on our faces and the calluses on our hands.  Sweet is nice enough, but bittersweet is beautiful, nuanced, full of depth and complexity.”  — “Savor” by Shauna Niequist

Here’s something I never thought I’d say: I’m thankful for my poopy shirt. It gave me a shove back into place. It’s a place where I’m on an all-out search, despite the splinters of sadness, for all of the richness and beauty of raising a child with a disability.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Thanks!

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Woman in Wheelchair Wins Ironic Prize on ‘The Price is Right’ and Has the Best Response

Danielle Perez, a comedian from Los Angeles, just had a memorable win on “The Price is Right.”

Perez, who lost her legs in an accident in 2004 and uses a wheelchair, won a treadmill on the gameshow, CNN reported.

I kept thinking that it was a really big joke,” she told the outlet. “But there was no irony in their cheers or applause.”

Perez herself appeared unfazed by the prize, and despite an awkward pause from the audience that was later edited out of the show, she said everyone seemed genuinely excited that she had won.

She even later displayed her good humor by poking fun at the incident on Twitter.

One of Perez’s friends made an excellent point.

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The Beautiful Moment a Blind Woman ‘Sees’ Her Unborn Baby for the First Time

For an expectant mother, seeing your unborn child for the first time during an ultrasound exam is a special moment. But mothers with visual impairments don’t usually get to experience this. Until now.

In the video below, watch as Tatiana, a blind soon-to-be mother from Brazil, gets to “see” her unborn child for the first time thanks to a 3D-printed model of the sonogram of her son. Huggies Brazil worked together with advertising agency Mood and 3D printing firm The Goodfellas to complete the project and give Tatiana this special moment, according to Ad Week.

Watch the video below to see the moment Tatiana “meets” her unborn son:

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The Time My Son Taught Me More About Autism Than Anything I’d Read

“Ma-ee whats hearts mean?”

“Why don’t you tell me?”

“Ma-ee hearts, hearts, its mean love Ma-ee.”

So says the amazing wonderboy. Hearts mean love. Whenever he says this, and it is quite often because there are hearts everywhere, he gets this open, innocent smile that spreads into his eyes. He has the most incredible smile.  He’s latched onto this symbol and can spot them a mile off. In a room full of paraphernalia and dust collectors, he bee-lines to the hearts and says, “Look Ma-ee look, hearts, its mean love.”

He came to my home when he was 6 years old. Stuttering, crossing fingers, twirling and just plain scared. We had transitioned a couple of months where I visited him at his foster mom’s house and he had come down to visit us. But I was such an unknown to him.

Years before I had decided that I wanted to adopt again. I had adopted my daughter when she was almost 6 and was now a beautiful, well-adjusted 18-year-old. I thought we were ready. I got my foster license specifically to adopt an older child and then waited and waited. No referrals. I contacted people across the state and said I was here, wanting to provide permanency. I felt like I was in a room with hundreds of other foster and potential foster parents jumping up and down in the back, waving my arms and yelling across the din, “I want to adopt! I want to give a child security,” but I waited.

As I was sending my homestudy across the state and outside the state to any contact that was mentioned, I talked to Erica, the recruiter for Wendy’s Wonderful Kids, a remarkable program started by the Dave Thomas Foundation. Erica and I touched bases a couple of times within a few months and then one day she sent me an email that said, “There’s this little boy, but I have to be honest, he has autism.” Autism? What did I know about autism? Absolutely nothing. So I read and read and cried and laughed. I asked Erica for more information and she sent a picture of a beautiful little boy, dark hair, dark, soul-filled eyes. And a hint of a smile.

I received some records on him. Could I really do this? I read a little about his past life and inside, then and there, I knew I could give him security and advocacy. Love was a given. It is easy for me to love a child, but security is what he and every child is entitled to that they all aren’t getting. I read his records. Wow, they scared me. I still didn’t have a grasp on what autism meant, and then the paperwork mentioned developmental and cognitive delays. I envisioned essentially a child who would have no concept of what was going on in the world. But, I remembered that hint on his face. Something unique was brewing under that smile and that flash in his eyes that you could see sparkling in the picture. I went to meet him.

He brought me his favorite Dr. Seuss book and I read to him and made him laugh. He twirled and talked into a fan and laughed at his voice and turned and looked at me, right in the eyes to see if I was laughing also. What? I was so confused. This wasn’t the autism I read about. The autism I read about was the lack of connection. (I think I was reading the wrong book…) This was a little boy who was funny and maybe not so articulate at times but loved to laugh.

He moved in with me. Months later, we found his true diagnosis through genetic testing and I understood even more about his “flavor” of autism. He has a duplication of his fifteenth chromosome, what’s commonly called Dup15q syndrome. I realized this is a part of him and always will be. It is in his chromosome makeup, just like dark brown eyes and brown hair. Soon after getting his results, I adopted him. It has been three years since we finalized the adoption. He struggles at times because there are parts of life he doesn’t understand, but there are also parts of life that he understands in a very unique way. I love hearing those bits of wisdom. He is quirky, funny, loud, an awesome mimicker of noises, energetic, a brother… he is my love and he is my son!

In the early morning, he soars out of bed and pounds down the hall. Then he throws himself into my arms. I hold him for his special early morning ritual. I stoke his back and tightly hug him, not uttering a word. Seconds go by with his arm wrapped around my neck. His breathing is slow. I can feel his heart beat and then he says, “Ma-ee, there are hearts coming out of my head.” And I tell him I love him too.

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This Is the Perception People Have of My Son. And This Is the Truth.

Some people say that perception is reality. I don’t know. It’s just too black and white for me.  Maybe if we add one word, I can get on board with it.

Perception is sometimes reality.

There. The first quote seems to imply that perception is ALWAYS reality. I think the best way for me to explain my thinking on this is to share a few stories about my son, Matthew.

Perception: He’s in his own world and not listening to what others are saying, especially adults.
Reality: A few weeks ago (maybe over a month now… I can’t believe I could keep this story under wraps that long), we were sitting in church and our pastor was delivering the sermon. Our pastor mentioned the word Mt. Calvary. Matthew looked up at me and put his arms out and moved his body to signify “flying.” I know what you’re thinking… there were no airplanes at Mt. Calvary, but follow me a little bit longer. It took me a minute to make the connection, but when I put it together I was floored.

We recently figured out that when he made that flying gesture, it meant that he wanted to hear The Army Song (a song that we sing in Children’s Choir). That took some detective work to figure out, believe me. But when we sing the song, we put out our arms like we are flying for the line that says, “I may never fly over the enemy.” I quickly went through the words in the song in my head until I hit, “I may never march in the infantry, ride in the calvary…”  So even though the word calvary was used two different ways…he heard it…he was listening! The potential for what this could mean for him is HUGE!

Perception: He’s not aware of what’s going on around him.
Reality: One day at school he was heading up to the carpet and he passed a classmate who was having trouble finding her book. He paused, pulled her book out far enough for her to see and kept on walking up to the carpet to join his peers.

Perception: He probably has trouble with long-term memory.
Reality: If he has been to your house, he will remember exactly where you keep your vacuum. When we are driving and are one the same road as his doctor’s or dentist’s office, he will do his invented sign for those places. When we go to my sister’s cabin (which we only visit one to two times a year), he will remember specific places that objects are kept. And he will know if they are missing! We found that out the hard way last summer when he kept signing “wagon” because he remembered that they had had a riding toy that you can push.

Perception: He can’t problem-solve.
Reality: At school they started using a “standing desk” (a desk that is tall enough to stand at). They took pictures on his iPad and commented that he loves it. That week at dinner, he pushed away his chair and pulled up his stool and made a “standing table.”

Now I don’t condone this next behavior, but it does show his problem-solving abilities. He made garbage by unrolling toilet paper and throwing it away because he loves to empty wastebaskets (one time he threw away multiple pairs of underwear to make garbage.) When we are at restaurants or new places, he will sign “bathroom.” He often barely has to go, but he knows I will not say “no” to the bathroom sign and it gives him a chance to explore and see more.

Your perceptions will be based on what you initially see: Matthew’s noises, his jumping, his flapping, his smelling, his silly giggling, etc. Your perceptions will also be based on your experiences with other people with autism or other disabilities. If you’re in the education or medical field, your perceptions might even be influenced by a clinical definition of autism and its characteristics. And some of your perceptions might be true… SOME of the time.

At least that’s my perception. And you know what they say about perception…

perception versus reality

This post originally appeared on Autismic.

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