Baseball Season

8 Mar

Dylan started baseball this weekend and had his first game yesterday. He’s playing on a special-needs league and his team is made up of children with various disabilities.

His team doesn’t play against another. Rather, they are divided in half and take turns being at-bat and in the outfield. Each child has a buddy. These buddies are typical children from other teams whose games are immediately following the special-needs game. They also have teenage volunteers and parent volunteers. His team has no practices; only games. There are no strikes, and no outs. Each child gets to bat until they hit the ball, and then they run all the bases.

This weekend Dylan played for the first time ever, and he did amazing. The cheering was so exciting for Dylan, even when the crowd wasn’t cheering for him. He loved dancing around in the outfield, watching his shadow, and pretending to run alongside the other players as they rounded the bases. He imitated a perfect ground-ball stance when it was modeled for him. And he grabbed and threw the ball when prompted.

For his second at-bat (ever, in his whole life), he stepped up to the plate… And whacked the ball. We all screamed! He smiled ear to ear, and in typical Dylan fashion, he let out a high pitch squeal and began running the bases (although never quite touching them).

Watch Dylan’s home-run here.

It was incredible. His first time playing baseball, and he hit the ball! Not from a tee…an actual coach-pitched ball! We were so proud of him. Not only for his incredible hit, or for running the bases. But, for engaging in a new social activity, following directions from strangers, taking turns, and attending to a task that isn’t in his usual repertoire of preferred activties. Playing on this team is good for him in so many ways, and I’m so grateful this league exists.

AngDylBaseball

Proud big sis with her little “Angel”.

BaseballDyl1

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IQs and ID

15 Feb

I recently ran into an issue when considering “Intellectual Disability” diagnoses among those with autism. Intellectual Disability (ID) was formerly known as “mental retardation”. Diagnostic criteria looks at adaptive skills in addition to IQ scores. Both adaptive skills and IQ are measured using standardized tests.

And therein lie the problem.

“Standardized” tests, by definition, are given in the exact same way for all it’s test takers. The problem this poses to those with autism is obvious (or at least it is in my mind, anyways). Children with autism are not like every other test taker… they all have unique strengths and challenges.

Many children with autism have attention issues. While they may notice the tiny piece of frayed rug, or the patterns in the painting on the wall, they may not be attending to the instructions given to them. Or, while they may be able to sit for a couple questions at a time, they may get restless or require sensory breaks in order to sit for longer periods of time.

Another aspect of standardized testing is that it relies on a child’s ability to follow directions. Many times children with autism do not comply with instructions, not because they don’t understand them, but because they don’t want to. How is the administrator going to know whether it’s a compliance (behavioral) issue, or an intelligence issue? They’re not… so it will just be marked as an incorrect response.

Let’s also consider the response time aspect of testing. Perhaps a child does know the answer, but takes longer to process the question and produce a response.

Now, I’m not saying that testing considerations are the only problem and otherwise all autistic kids would show high IQs.  What I’m saying is that there is no way to know for sure whether a child doesn’t know the answer or just isn’t providing the answer. And, clearly issues with attention, compliance, and response time make it problematic for people to function in the world we live in. So deficits in those areas should be, and need to be, considered when looking at the overall functioning of the individual. But, what I am suggesting is that these tests do not look at the overall WHOLE person, and they have no way of truly measuring the intelligence of a child with autism. They simply measure an ability to respond to questions. And, responding to questions is not synonymous with “intelligence” in my book.

To me, it would be like giving an english test to a spanish speaking child. They will score pretty low on many of the questions, not necessarily because they don’t know the answers, but because the questions aren’t being asked in a way the child can understand.

Giving a test made for typically developing children to ATYPICAL children does not provide a valid measurement of intelligence. That is my whole-hearted belief. And using the scores of such a test to determine a secondary diagnosis of “Intellectual Disability” is misleading, and an incomplete representation of the child. Einstein said it best….

genius

(PS- why is IQ so important anyways? If the child already has an autism diagnosis, we already know they have deficits in socialization and communication. What value does an IQ score add?)

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Cruisin’ with autism

19 Jan

Almost exactly 3 years ago I embarked (literally) on an adventure with one of the families I worked with at the time. The family paid for me to go on vacation with them, so that I could work with their son. He has autism and I was one of his in-home ABA therapists, so the family thought it would be helpful to have me around for their international vacation. They paid for all of my travel expenses, and they also paid me for my time. It was a really unique experience, and I’m glad I did it.

We took an 8 day Disney cruise to various parts of Mexico, and during my time on the ship I worked almost 12 hours a day with their little guy. We had some 1:1 time in the cabin to do our regular ABA tasks, and then most of the day I would facilitate his participation in the various kids club activities, and I would also join the family at all of their meals. We worked on lots of things like:

  • Behaviors- managing his self-stimulation, aggression, and non-compliance
  • Meal time- sitting appropriately, waiting, trying new foods
  • Socialization- following what the group was doing, interacting with other kids, responding to family members
  • Language- requesting, labeling, lengthening sentences, varying his phrases
  • Academics- Counting, reading, and completing worksheets

Another important purpose for me joining the family was to work with the parents. We worked on things like:

  • How to elicit more language (withholding items until he asked for them)
  • How to reinforce appropriate behaviors (token systems, praise, access to the iPad, etc)
  • How to decrease maladaptive behaviors (extinction, follow through, etc)

While it was an exhausting experience, and it didn’t go exactly as I had expected, it was a really neat way to do my job…..on a cruise-ship! A few weeks after the trip, we had a team meeting and the boy’s mom told everyone how my presence helped decrease her anxiety and helped her enjoy her family vacation a little more. Plus she was still beaming about the progress he had made on our trip (learning to swim with me, and eating several bites of new foods for me). That right there was my validation. I got to make a difference for this family on their vacation. Plus, I not only got to travel to Mexico for free…but I got paid to do it!! It was really neat, and I’ll always treasure the experience. I think the idea of being a traveling ABA therapist is so cool and I count myself very lucky to have gone on the trip with them.

CruisePics

So… I’m sharing this story because I recently learned of an organization that does this sort of thing. Autism Adventure Travel matches up families with special needs children with specialists who would be willing to join them on vacation. The specialists (Occupational Therapists, Speech Therapists, ABA therapists,  Psychologists and more) volunteer their time, in exchange for a free vacation. Autism Adventure Travel (AAT) arranges 3-8 days cruises, including group vacations, and charges families a nominal fee to find the right specialist. AAT not only makes arrangements for the specialist, but they also put together on-board activities, book group excursions on behalf of the families, and plan the entire vacation itinerary!  They provide full service travel planning, with the added bonus of finding “degreed, background checked, and […] experienced” therapists who are willing to volunteer their time for the families. In addition, AAT fundraises in order to help the therapists get to the ship ports so that the families are only responsible for paying the actual cruise expenses. And, this organization is awesome for therapists who would like to travel the world at no cost. Sure, they have to work on the cruise (just like I did), but it’s an opportunity to utilize their skills in a unique setting.

Autism Adventure Travel provides a wonderful service to families who might otherwise not be able to vacation with their special needs child. And they provide a rare opportunity for specialists to travel for free. For more information you can check out their website here.

 

***I was not asked or otherwise encouraged to endorse AAT. The views expressed are my own.

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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!

house2

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…

pumpkincollage

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