What to do if you're new
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This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
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@themcleodfam Bc I keep getting this question…here ya go!
♬ original sound - Stephen Stanley
If you are the parent of a child with physical challenges, you may know that self-feeding can be a struggle. You may also be well aware that when you feed an older child in public, it can attract gawking. And you might know that it is not something people are always willing to do, especially during these germ-cautious days. Back when Max was little, his challenges with feeding himself prevented him from going to many camps—camp directors told me staffers could not help.
Steve Tyler seemingly had no hesitations. He put pieces of pizza right into Eli's mouth, just like a parent would. I am not ready to declare Steve Tyler a saint but this is not something everyone would do. While the collective "Awwwwwww" reaction does nothing to help anyone, perhaps the video will make people more aware of feeding needs, and feel less apprehensive.
There was another person-helps-disabled-person story I read the other week in a large parents group I'm in. A mom was pitching in at her daughter's senior party. Evidently, as this girl and her friends stood around taking photos, they invited a teen with autism to join them. He had come to the party alone. He was overjoyed and later told the mom how grateful he was because, he noted, "I'm not usually included in things." The mother mentioned in her post that she thought what the group of teens did was a good example of inclusivity, which is why she was sharing what happened.
I will sum up the majority of comments: "Tears in my eyes! Beautiful story! Amazing! All the feels! A great reminder! I can't love this enough! Tears!"
Rare was the commenter who saw it the same way I did: Had the group interacted with this boy ever before in high school? That would have been inclusivity. And while it was great they were nice to him in the moment, the fact that he was so overly grateful for those few minutes of being in a group photo showed how low the bar is.
Exactly.
We live in a world where gestures like this are seen as the biggest deal because: 1) Children and teens with disabilities are often not included with their peers and 2) Children and teens with disabilities are seen as people worthy of pity and kindness, not parity.
I worry about the message these stories spread. And OMG, yes, better that this group of high schoolers did include that boy then the opposite. But better that these stories did not bring tears to people's eyes or even be worthy of posts. Better that children and teens with disabilities were just a standard part of school social life. And that is so much easier said than done to be sure. But if you are a parent reading this, you could use these stories as springboards for discussions with your children.
Why was it nice of that group of teens to include that boy with autism?
Why do you think it made that boy feel so happy?
Would it be good if those teens were friendly to that boy at other times? Why?
Why do you think people are sometimes not so friendly to children and teens with disabilities?
How do you think that boy would feel if those teens were always friendly to him?
Exactly.
Image: Screen grab/video by Eeka McLeod
What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).
This guest post is by Jane Kim. A writer and mom of a nine-year-old with autism, she works in the field of immigration and lives with family in the Philadelphia suburbs. Find Jane on Twitter @JkimRites.
It’s often hard to venture out and try new things when your child is on the autism spectrum. Unexpectedly, the pandemic gave us extra courage to step out of our comfort zone and establish new routines.
Playdates, celebrations, the shuffling to and from lessons and sporting events were never an ingrained part of our routine. For almost a decade, my family has established our own routines. My son, T, was diagnosed with Autism Spectrum Disorder (ASD) at age three. When he was a little kid, we had a team of therapists that would visit our home. When T started school, most of those therapies transitioned to school, so after school and on weekends, we spent time outdoors hiking, visiting playgrounds, riding scooters and biking. When the weather was colder, we read, played board games and listened to music. There were few playdates. Reflecting on our lives back then, the activities that filled our lives in our free time mirrored those that many pursued during the pandemic.
Then in March of 2020, the pandemic was upon us. With racial injustice, death and social and economic disparities on our collective conscious, we learned to be kinder to each other. Months into the pandemic, I felt the shift. People said thank you and showed up bare-faced on Zoom meetings. Life slowed down long enough for us to ask each other how we were doing, how our families were doing and to listen and to give real answers. The vulnerability in those answers often gave me new appreciation into the struggles they were facing. Life right now is tough, but we’re in this together. We’ll get through this. The pandemic provided a bit of a respite from the lack of participation in All the Typical Things a 9 Year Old Does. It demanded isolation be the norm, and it took time to recognize that feeling I had been missing for so long: We were now part of the group, sharing the same experiences.
When the world started to open up again and much of our community was vaccinated, I spoke with T about some ideas I had, based on his interests. He was all in. In the fall of 2021, T began group swimming lessons and joined a choir. I could not have imagined the support and camaraderie that would come next — only that I won’t know for certain if it would have occurred without the backdrop of the pandemic. Regardless, I am filled with hope that when the right people enter your lives at the right time, inclusion can happen organically.
T joined a group swimming class. The pool was indoors and heated, with bright citrus colors on the walls. There were many lanes, with each class occupying a lane. It was loud, splashy and fun – all the ingredients needed to feed a kid’s soul during a pandemic. T made progress the first 3 months, and then he stalled. After a couple more weeks, I spoke with one of the instructors about giving him an extra push, as he often needs that to get to the next level. She told me they would keep a closer eye out on how he was doing next class. When T arrived for the next class, he was instructed to go to another lane. She encouraged, cheered and taught T one on one for the entire class. By the end, I was in disbelief – I had never seen him swim at that level. She had taken the time to see his abilities and trusted he could do it. Since then, he’s had more individual lessons, unprompted by me.
T also joined a group choir. In speaking with Rae Ann Anderson, Director of the Children’s Choir at Settlement Music School, about T and the novelty and uncertainty of fitting in with the group, she said, “Let’s give it a try.” T auditioned and promptly became a junior choir member. Practices were weekly, for an hour in the evenings, and they were fast and furious. T was assigned a seat in the front row, in an effort to minimize distractions and so Mrs. Anderson could provide more guidance if needed. Sitting outside the auditorium in the lobby, craning my neck to see what and how he was doing, was futile - I needed to get more comfortable with not knowing. Over the course of 5 weeks, I witnessed snippets of T learning the ropes: Mrs. Anderson would subtly point at a section in the sheet music or put a hand on T’s shoulder if he was fidgeting too much.
T’s laughter could be heard as the group warmed up their voices with zees and zoos, and then an older choir member helped T assemble his music in a neat package at the end of the practice. At home, I’d overhear the occasional Hebrew stanza. The practices would culminate in a Spring Concert, where four other choir branches would all participate. In addition to the weekly practices, combined monthly choir practices started in January. They were two hours, with about 70 choir members. I spoke with Mrs. Anderson and gave her the heads up that T may leave after an hour, and we would play it by year. T remained engaged in practice for about an hour and a half. But then he saw Mrs. Anderson conducting and wanted to be a part of that. He stood next to her, and for the rest of the time helped her do her job. Many of the kids gave him a thumbs up and continued singing. And he continued singing as well, just from a different vantage point.
I will look back on the pandemic with an array of emotions. But most notably, I will remember taking that first step to venture out and establish new routines — and being embraced and supported during a time of isolation.
At the end of every choir practice, the song is always the same:
May you go in peace and joy,
May you be surrounded with love.
May your days be long, seasoned with a song,
May you always go with peace and joy.
Wishing this for you and your families as we enter spring.
A special thank you to Goldfish Swim School in Media, PA, and Rae Ann Anderson, Settlement Music School.
What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).What to do if you're new
This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).
"He understands a lot!" the woman says to me.
"Oh, yes, he does," I agree.
Dave and I are talking with a potential babysitter for weekends, and she's just met Max. I'm always taken aback by how surprised people are by Max's intelligence. Intellectual disability is relative; Max has plenty of smarts though to be sure, I didn't totally get that during his early years. Until you know someone with intellectual disability, your perspective can be colored by preconceived notions and outdated stereotypes.
When Max was a tot, what I most noticed was what he was lacking. He wasn't walking. He wasn't saying sounds or, for the longest time, words. He couldn't grasp or pick up a ball. He couldn't feed himself. Couldn't/wasn't/couldn't/wasn't/couldn't/wasn't, went the soundtrack in my head. Doctors, specialists and society in general are laser-focused on milestones. And when your child isn't just behind but bypassing them, it's pretty much all a parent can think about.
As time went on, I learned to understand Max's intellectual and physical abilities. To focus on what he could do, rather than what he couldn't. To appreciate his unique mindset and strengths—his incredible emotional intelligence and intuition, his social skills and charm, his excellent navigational skills that rival any GPS.
"I can see the brightness in his eyes," a doctor told Dave and me when Max got a stem cell transfusion almost 12 years ago. And it's always been true.
March is Developmental Disability Awareness Month. It's also Cerebral Palsy Awareness Month (though not everyone with CP has ID). And I'm celebrating them in honor of my Max, who at 19 years old is full of intellectual ability. There is a tremendous range of smarts and brightness in this world, and people with intellectual disability aren't on the "low" end—they have their own unique intellect. And who are the rest of us to judge?
So what if standard test scores say differently—they are no reflection of a person's reality, as standard test takers of every ability know. So what if Max is not a person who does Wordle or reads the newspaper. So what if he thinks he is going to someday live in a Los Angeles fire department when he gets older; that boy can dream big. So what if he is not in college; he is acing the school of LIFE.
Max isn't just aware, he is ON it, some days more than Dave or I am.
"Russia is bad," he said to me a few weeks ago. He'd been down in the basement, aka the Max cave, watching the news.
Max knows.
"I have a half day of school on Friday!" Max texts.
Oopsie, forgot about that—but Max knows.
"Why are you mad at Daddy?" Max asks when he reads a ticked-off text I've sent Dave.
Max knows.
"I didn't take my medicine yet!" Max informs me at 9:15 p.m.
Max knows.
"We have to turn the clock back!" he tells me on daylight savings time weekend.
Max knows.
"Homework!" Max reminds me.
Max knows.
Ben is grouchy and could use a kiss.
Max. Knows.
Max is full of confidence and smarts, and he knows it. He is a person with intellectual disability as defined by the so-called norms. And he is a person with intellectual abilities as defined by anyone in their right mind.
If only more people could see it.
What to do if you're new
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This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).
Winter break already feels like it was eons away, mainly because my children were doing virtual school on and off these past few weeks. I didn't have any time to put my one New Year's resolution into action, which was: Be like Max. Literally, be.
We went to Florida for winter break. I was somewhat mostly extremely freaked about being in the airport and demanded that everyone double mask and wear face shields, which pretty much made everyone hate me.
