Tag Archives: ASD

Cancer and Autism

13 Jan

Last week my mom underwent a double mastectomy with reconstruction to treat her breast cancer. Her diagnosis and treatment were obviously a huge blow to our family, and I knew it’d be vital to prepare Dylan for what this meant.

In the days preceeding her operation I looked online for social stories about surgery and recovery. All I found were stories to prepare kids for their own medical procedures, but none explaining what it would be like when Mommy went in for surgery.

So, I created this story for Dylan….

On Monday, January 6th Mommy is going to the hospital.

Mommy has cancer. That means her body feels sick.

pain

The doctors will get rid of the cancer and help her feel all better.

doctors

Mommy will spend the night at the hospital so that the doctors can check on her.

sleeping

Soon Mommy will get to come home!

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When Mommy comes home she will be very tired. She will need to take naps.

tired

Mommy will have bandages, so she will have to be very careful when she walks.

There will be new people at home to help pick me up from school.

drop off

These new people will help make dinner and clean up.

cooking

Soon Mommy will feel all better.

I will feel so happy when Mommy feels better. Mommy and Daddy will feel happy, too.

HappyDyl

He read through the story with me and really seemed to understand it. When he got to the bandage page he looked up and asked my mom to see her bandage. We told him it wasn’t there yet, but that soon it would be.

A few days after the surgery I went over to visit and Dylan had a preoccupation with the bandage again. “Can I see my bandage?” he would ask, over and over (incorrect pronoun, and all).  Then he would ask, “Can I see the boo-boo boobie?” so she would show him a piece of the drain tubes. I mean…how could I not chuckle at that?? So that’s how Dylan understands all this. He knows mommy had cancer and that she went to the hospital to fix it. And now, she is at home with her boo-boo boobies. 🙂

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Christmas conversation

26 Dec

This year I spent Christmas on the other side of the country with my in-laws. I’ll celebrate with my family over the weekend, but since I couldn’t be with them on the actual day we improvised.

I was able to FaceTime with them from 3,080 miles away!

My sister facilitated the conversation and it really made my day extra special to get to talk “face to face” with everybody. Dylan was a little confused by the concept at first, but he got the idea. I got to hear about his YouTube videos and see his perfect little smile. Our conversation was brief, as usual, but it was priceless.

I’m excited to celebrate with him in person. And it was really neat to get to see him on Christmas, without actually being there.

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I’m thankful for…

27 Nov

A few days ago I posed the question on my Facebook page, “What (autism related) are you thankful for this year?”

I purposely left it at that, to see where people would go with the question. And before reading any of the answers, I typed up what I’m thankful for this year, as related to autism…

I’m thankful for Dylan. I’m thankful for his sweet voice, his smile, his kisses, and his laugh. I’m thankful for his little face, his curly hair, and his millions of freckles. I’m thankful for all of his words. I’m thankful for how smart he is; for his ability to understand, and his ability to communicate. I’m thankful for his doctors, teachers, and therapists (past, present and future). I’m thankful for how much he motivates me. I’m thankful for the the love he gives me, and for the love he inspires me to give to others. I’m so thankful for my littlest brother, Dylan.

I’m also thankful for my job, and for all my clients. I’m thankful for the sweet memories I’ve made with the kids I’ve worked with, and for the ability to make a difference in their lives. I’m thankful for getting to do something I genuinely love for a living.

Here’s what some of my Facebook followers are thankful for this year….

 
My son’s new school placement. He’s not only thriving, he’s exceeding my expectations.- Patricia
 
Young Living Essential Oils!!- Katie
 
Our ABA therapist. She not only cares about my son’s development, but our entire family’s well-being. I am so thankful for everything she does. – Deanna
 
That I was able to obtain a private placement for my son. He achieved more in his first 6 weeks than he did in 2 years in his “award winning special education program” in our district! I am so proud of him!- Jamie
 
Our boys’ new school has been a breath of fresh air, our boys are able to be themselves and are more confident, as parents we could not be happier and thankful when we see our boys smiling and happy to attend school instead of being fearful.- Jodie

My son’s hugs and kisses. -Sonya

Where do I begin? Progress is always great, fantastic siblings, innocence and lack of superficial nonsense ( I can look perfectly dreadful at any time and he’s the one person who would not feel a need to comment!), a super duper smile that lights up a room, and big hugs from a very big boy…. To name a few!- Bloom and Grow LLC

My son’s teacher who raised money to buy him an ipad without our knowledge and then surprised us with it. It was a huge blessing for my son with Autism who’s non-verbal.- Single Mothers who have Children with Autism

My son is the most honest person I have ever known. I don’t think he could ever tell a lie, in fact he gets very upset when other people do.- Hollie

I’m thankful for progress.  When I look at my kids 4 years ago and then look at them today, I can’t believe they are the same people.  Thankful to everyone who helped them to date, those that are yet to come and for the two of them for being the special people who they are.- Ilene

Thankful that my brother’s have improved so much. – Erika

My son’s voice/giggles  being able to stop. Room full of people- Spinning cars and flying horses autism bipolar adventure

I’m thankful for progress.  I look at my pictures (literal and figurative) of my children now and 4.5 years ago when they were diagnosed.  I see so much progress in them both.  These changes are due to the teams of people who have worked with both of them as well as research that has given everyone new ideas.  ABA has given me my daughter who was trapped in her body for such a long time.  And my son was able to find his style through patience and music.- We Care About Someone With Autism

I’m most thankful for Autism itself. While yes, the heartbreaks and roller coaster rides that go along with this diagnosis can be enough to break even the strongest of people, it’s caused me to stop and be thankful for all the little things. The autism hugs, the autism kisses – I love every part of it, as it’s what makes my son, exactly who he is. – Jennifer

Have a Happy Thanksgiving everybody!

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Perspective

23 Nov

Something happened yesterday that so beautifully exemplifies this Thanksgiving season…

To give you a little background, I work with a family who has 3 children with Autism; a 15 year old, a 13 year old, and an 8 year old. One of them is so self-injurious his head has permanent bruises and welts from where he punches himself in the temples. His knuckles are constantly scabbed. He hurts himself probably at least 400 times per day (and that’s a conservative estimate). He also frequently undresses to poop and pee all around the house. His sisters roam the house, humming and slapping things. Not any of them speak. They communicate through crying, pointing, grabbing, and one of the kids uses some sign language. Their refrigerator has a chain and lock on it, to prevent the kids from over-eating. Their bathroom remains locked to prevent the kids from showering non-stop. Their front door to the mobile home they live in remains locked with a key to prevent elopement. Some of their furniture is broken because of one of the kids slamming his body into it during a tantrum.

This is their life….everyday. 3 Autistic kids, each with very severe disabilities in communication; each with very severe  behaviors.

So, while I was there yesterday, the mother said something to me that really made an impression…

She said, “I see the kids at their school. They are in wheelchairs, and with walkers. I feel so sad for them. They can’t run and play. Some people feel bad for my kids, but they can play with toys and they can run around. But those kids, I feel bad for them.”

What an incredible perspective. This mom of 3 displays no pity for herself or her circumstances. She finds joy in her children’s abilities, rather than despair in their disabilities. She may or may not know how many people feel sad for her, because of her lot in life, but she chooses to find joy in her circumstances, and instead offer her sympathy for those with physically disabled children. This mom inspires me. She has an incredible perspective on life.

lincoln

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Ring-Bearer

19 Nov

BREAKING NEWS!

Worlds Cutest Ring Bearer Strikes Again!

MeDylWedding

My sister got married earlier this month, and Dylan was her ring-bearer. Just like during my wedding, I wrote a social story to prepare him for the big day. He loved reading through it and knew exactly what was expected of him, in order to earn his reward (some Bendaroos). On the rehearsal day, I reminded him to walk slow, hold the flower girl’s hand, and most importantly: to have a quiet voice and calm hands. He did great!!

When the sound techs turned on the processional music, Dylan boldly ordered them “Turn it up!” Then when practicing the exit, he grabbed the flower girl’s hand and ran down the aisle, smiling and laughing. It wasn’t what he was supposed to do, but it was adorable. It was perfectly Dylan.

Then came the big day…. Unexpectedly, he got upset about his boutonniere. (Who woulda thunk?) So we did a little “First-Then” strategy with him. “First take a few pictures, then you can take it off.” He wiped his tears and smiled for the pictures, then we promptly removed the flower from his tux. As we were about to enter the church, he decided he was okay with the flower, so we popped it back on. I whispered to him to remember to walk slow, stand in his spot, and have a very quiet voice, with no talking.

He made his way down the aisle, escorting the flower girl like a gentleman.

DylAisle4

He stood in his spot, between 2 groomsmen, and held their hands. (SO FLIPPIN’ CUTE!)

Wedding

A few minutes into the ceremony, he left the stage to go sit with his dad. Then he was chattering about who-knows-what. He eventually quieted down and even came back up to walk the flower girl back down the aisle at the end.

He did a fantastic job, all in all. And I know my sister feels just as blessed as I did to have him be a part of her wedding. Afterall, Dyl is the best ring bearer in the world 🙂

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Trick or Treat

3 Nov

Another one of my traditions with Dyl is taking him trick-or-treating. Since he was very young I’ve been able to celebrate Halloween with him, more years than not. When he first started trick-or-treating we would prompt the entire process, and we were his voice. “Trick or treat… Thank you, Happy Halloween”. We would help him hold his bag out, and prompt him to repeat a simple “thank you” at each house, although he was inconsistent in responding. Then one year I was impressed when he independently said “Trick or Treat” at a few houses! And, one time he even greeted a neighbor with “Chuck E Cheese! Where a kid can be a kid!” We laughed and reminded him, “did you mean trick or treat?”

This year he recited an online social story over and over in between houses. He told himself, and us, “People give out candy, and small snacks!” …. “Wait here!” …. “Don’t go in people’s houses unless you know them.”

Then after I prompted him a few times, he kept repeating  “Look in their eyes and say ‘thank you’.”

I have thought about his perseveration and I’m still not exactly sure what to make of it. Does he repeat it as a way of reminding himself of what to do? Does he repeat things because he doesn’t know what else to talk about? Does he repeat it because he’s excited for the routine at each house? Does he repeat it because he thinks he’s supposed to say it over and over? Does he repeat it because it’s a favorite story he’s recently learned? I don’t quite know why he perseverates so much on social rules and exectations. But, regardless, he did a great job trick-or-treating, and I had fun going with him.

I also loved something else he said this year…. We went up to a dark house, knocked, waited, and then realized no one was home. He turned and said “That’s weird”.  !!!   He was spot on! Absolutely right! And it was hilarious! He knew that Halloween night was all about going house to house to get candy. So to come to a house where no one opened the door or gave out candy… that was weird! It was so appropriate, and totally spontaneous. It was a highlight of my night 🙂

Our Halloween’s through the years…

Halloween

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Tradition

23 Oct

I’ve taken Dylan to the pumpkin patch almost every year since he was a baby. It’s one of my favorite traditions with him, and for the past couple years my sister joins us, too. Over the years we’ve been able to see his progress in our annual outings to the patch.

I remember the year he kicked me in the stomach because he couldn’t have my water bottle, as an uneducated onlooker told her kid that he was “being a bad boy”.

I remember the year he handled being told he was too big for one bounce house LIKE A PRO! He easily transitioned to a different bounce house for kids his age.

I remember the year he appropriately used his words to let us know he was over it, and wanted to go home.

I remember the year we tried taking him to a different pumpkin patch and he described the one he wanted to go to instead.

I don’t think he looks forward to our yearly trips to the pumpkin patch as much as I do. But, I know that he counts on our routine. He wants the same pumpkin patch, to do the same activties (pick a pumpkin, get cotton candy, go in a bounce house, ride the train), and then he wants to go home. Plus, he smiles for pictures, even when his nutty big sis insists on taking about 1,000 😉 Our pumpkin patch trips are one of my favorite things about fall. I love our tradition, and I count on it every year.

Here are some pictures from our yearly adventures…

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Radio Coverage

29 Aug

Yesterday something amazing happened. My blog was featured on a popular Los Angeles / Orange County radio station, The Fish 95.9.

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I couldn’t help but cry as I heard my post read over the air waves.

My little brother, my inspiration…he mattered to somebody. My story, my experience…it mattered to somebody.

Dylan’s life is touching so many others.

I’m so humbled, and so honored, that The Fish shared my story on their incredible platform. It’s a great feeling of validation and support. What an amazing gift. I am so thankful.

To hear the broadcast, click here.

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12th Grade Journal

16 Aug

Last night I was digging through an old box of high school memorabilia and found my 12th grade English class journal. Each day we had prompts on the board, telling us what topic to write about. I’ll let my entry for “A Significant Event” speak for itself…

DylJournal

I had no idea back then what the future held for him, and for our family. I was so excited thinking about the conversations he and I would have someday, not yet knowing that his words would be exponentially more valuable than I ever imagined, because they would come after such struggle. I was so excited to be close with him, despite the age gap…not yet knowing that he would inspire my entire career; that he would inspire me to write about him on a website read by people all over the world; that he would be the reason I help dozens of other families. I was so comforted back then, knowing our Lord already had a perfect plan for Dylan’s life, not yet knowing how much I would lean on that truth as a comfort for years to come. I was right back then… my little brother would grow up so loved and so cared for. More than he could ever know…

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Project Heart Touch

14 Aug

This week I’m proud to announce that my blog is featured in Project Heart Touch’s E-Book of resources for families of special needs kids.

Project Heart Touch, ” is a compilation of several heartwarming Facebook pages [where] you will find passionate and compassionate communities.” The e-book is a collection of online groups and pages where families struggling with autism or other disabilities can come for support and encouragement.

I’m honored to be part of this project and hope that you will download a copy of this amazing resource, and share it with anyone who may benefit.

Click the picture below to download a free copy!!

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