Having Priorities Helps Children With Autism

Having Priorities Helps Children With Autism

One of the challenges of modern life is the lure of having it all. We believe that if we can just manage our time, our child with autism can have the best experiences at school, at ABA therapy, with friends, and at home with family. When we’re spread too thin, though, we don’t benefit fully from anything. But when we learn to prioritize according to our values, we may not feel regret about making difficult choices and doing less.

Letting our values guide our choices is an unfamiliar concept for most of us — and it requires a little self-exploration to determine our priorities. But the rewards can be huge.

How COVID-19 Affected Priorities

Despite COVID’s continued impact, families are beginning to have more options for kids with autism. In-person school might be slotted in next to ABA therapy, and the combination can radically alter evening routines as everyone in the family also needs to take time to prepare to do it all again the following day. Here, families may struggle to decide which treatments to pursue for their child.

A family may see major benefits with ABA therapy but also recognize that COVID-related disruptions were very hard. Many parents think their child will benefit from going back to school, yet they don’t want to lose ABA therapy and they also want to have family time.

In a situation like this would a family benefit from having some of everything? Or would fewer activities that allow for richer experiences be better? In a lot of cases, efforts are not necessarily concentrated enough to have positive outcomes in any of the choices.

A tough decision is easier when a family can figure out what they really value. Evaluating what parts of in-school therapy, clinical therapy, and at-home therapy can help families decide what is most important for their child.

Developing Priorities for Children with ASD

As with everything else in life, values are not necessarily constant. This means we can adjust behaviors and choices to align with shifting values.

Determining our values can help steer us toward more fulfilling outcomes, even on a day-to-day basis. If your child is working toward learning to tie their shoes independently, for instance, repetition will help them achieve this more quickly. The downside to a lot of repetition is that you aren’t able to get other values-related tasks done. Putting the things you value most at the front of your list can help tackle important issues first.

The beauty of a values-based approach to lifestyle choices is that each parent’s values are personal and specific to them. There’s no comparison or measurement of personal values, so no guilt should be involved.

For example; if a parent can better approach each day when there’s no lingering laundry to fold, they’re not prioritizing laundry over children. But they are placing value on having an uncluttered mind so they can be more present in the moments that really matter.

ABA Therapy from IABA Consultants

If you have questions regarding autism treatment, education, or plans using ABA therapy, we are here for you! Our goal is to make sure no family is turned away due to financial constraints. Our therapy team would love to talk to you. Find the location closest to you and give us a call. We’re here for you.

Originally Posted as Values Can Help Clarify Choices With a Child With Autism, Chicago Parent, September 17, 2021

Take A Stand

Take A Stand

Over the last few weeks, I’ve written to you from a more personal place than usual. My intention in writing these pieces of my story is to share my humanity with you. As human beings, we all go through trials and tribulations. We all have hardships. And we all fall down but rise to stand tall another day. The last twenty or so months have been challenging as a society and the world has certainly not been hardship-free, even before COVID entered our worlds.

Mitigating Damage from Outside Noise

This week I’d like to write about the noise of the world, including the noise that has surrounded me, and how to differentiate noise from the truth. When I say the noise of the world I’m referring to Brene Brown and her reference to the warrior’s ring featuring Theodore Roosevelt’s speech.

Remember that Brene teaches us that the noise from the stands (the outside world) says nothing about our worth and that worth is inside each warrior dusting the blood from their knees to fight another day. In my observations over these past 20 months, and speaking honestly since our last administration took office, the noise from the stands seems to have increased in volume. At times the roar of the crowd can be deafening. 

As someone living with PTSD, noise in and of itself can be challenging for me. When that noise is coming from others, it may not hurt my ears but can hurt my heart. Do you all remember this little ditty as a child; “Stick and stones may break your bones but words will never hurt me”? Yeah, me too. It’s a bullshit ditty if that’s a thing.

What the ditty should go like is “sticks and stones may break your bones but words can break your heart.” We as humans are not immune from the painful words of others and those words can make us question our own worth. It’s painful to realize that when others say unkind words (and worse) that there is a subset of people who choose to behave this way intentionally. These are the people making noise in the stands.

The Worst Part of the Crowd

The intentionally hurtful people in the stands seem to believe that by pointing out the imperfections of others that they are somehow pointing out their own perfection. That is to say that if they can be loud enough about how their belief system, sexual identity, race, gender, and the like is perfect that maybe, just maybe, it means their own, differing lifestyle is better than yours.

This may have made sense tens of thousands of years ago; classifying each other by how they looked and behaved. This allowed our ancient ancestors to know who was in their tribe and who was an actual threat. Yet as language and thought developed, currency also developed, and all of a sudden these cheap shot demographics became a sorting of worth. You need not look further than slavery and the treatment of women or look into the holocaust as societal examples for the danger of this type of behavior. 

At a societal level, in a power-over dynamic, fear is necessary to keep the power in place. Teaching people to fear other people is very simple to do: just sprinkle in judgment, divide a few resources you say are scarce, add a God of your choosing, and tada! you have power. This is also bullshit, yet remains very real for a lot of people today.

Power & Control

Personally, I’ve always hated power-over dynamics used for power and control. Using resources to restrict others fires up my soul up like nothing else. Using both covert and overt differences as the fuel to feed this power is the match before the gasoline that starts the fire. For those of us who refuse to use a power-over approach and believe in our bones that humanity is equal, deserving a life with choice, a life with resources to live day-to-day encounters can be maddening.

Also, personally, even as a woman I have never felt this attempted power-over as closely as I have this past year. I have been told hideous things from my father’s family regarding women and their “God.”  I have heard messaging from almost every person in the legal system to not fly my “feminist flag,” in our country courthouse. I have even faced the local football team head-on about racism in regards to my son. 

The words I have heard from others in the stands this past year have been ugly, to put it mildly. It took me almost a full year to realize the noise from the stands was not real but my worth is. I have stood in the ring, dusting blood from my knees, and forcing myself to face the hate but not using it to fight. Hate begets hate.

Stop Listening to the Noise

Here in the US, we’ve been struggling for over a year, but it’s been a lifetime for so many others. My son surely did not have his first encounter with racism on his freshman football team. I’ve been questioned as a woman countless times even before this past year began. And people in “power,” have been using others for personal gain at any cost (including human lives) for centuries. Yet outside of this power-over dynamic is a power within with a different dynamic. A power that demands that all humanity is treated equally and deserving of respect. A power that tells us that no matter how loud hate is, love can overcome it.

So which will you choose? Will you choose to continue to section off pieces of humanity based on what they believe, how they look, or if you feel you can gain control over them? I certainly hope not. I also certainly hope that if you are choosing not to use power-over, you are using power with and standing up for your worth, as well as the worth of others. 

We are brothers and sisters. We are more alike than we are different. If you ever find yourself in the stands, adding your anger to that of the crowd, know that you can stop, walk to the ring, and help your sister stand.

Xoxo,

Jessie

ASD & COVID-19

ASD & COVID-19

People with autism aged 16 and younger and 40 to 60 have higher odds of being infected with COVID-19 than their neurotypical peers do, according to new studies. Researchers analyzed data from 16,406 people with autism in Israel’s largest healthcare organization. The team matched participants with a neurotypical person of the same age and gender.

The results show people with autism aged 16 and younger were 1.3X more likely to be infected with COVID-19. Participants with autism in the 40 to 60 age range had double the odds, the study noted. All results from this study appeared in the Journal of Autism and Developmental Disorders in July 2021.

“These findings suggest that people with autism or other neurodevelopmental disorders should be prioritized for vaccines,” said the lead medical researcher. “There is awareness towards the increased risk of morbidity among people with neurodevelopmental disorders, but I can’t really connect the link and say, ‘OK, they’ve taken our findings and turned it into a policy.’”

Research has just begun, which is why it’s uncertain why certain people with autism have elevated odds of contracting COVID-19. Researchers noted the differences seen in participants aged 40 to 60 could be associated with familial interactions, but there isn’t enough evidence yet.

ASD & COVID-19 Research Studies in the US

The number of autism-specific Medicaid waivers went up nearly 500% from 2004 to 2015, according to a new study. Many states use Medicaid waivers to provide services to people who may not be covered for ASD Services under Medicaid.

US researchers compiled a list of 269 different Medicaid programs focused on providing services to people with autism or intellectual disability. During this 11-year study, 26 states changed their Medicaid waivers to increase care options for people with autism. Nine states added a type of waiver called (waiver 1915C) specifically for people with autism, far outpacing new waivers for other types of intellectual disability.

“There’s a big difference in how states use Medicaid to meet the needs of people with autism throughout their life,” says Lindsay Shea, associate professor and director of the Policy and Analytics Center at the A.J. Drexel Autism Institute at Drexel University in Philadelphia.

ASD State Benefits

Three states researched in the study— Arizona, Rhode Island, and Vermont — do not offer any 1915C waivers, which was the main type of Medicaid program assessed in the study, thus they were not included in the study data. Arizona, Rhode Island, and Vermont use a different waiver, called a 1115, to provide long-term patient care.

Researchers also used data from autism prevalence studies to estimate the percentage of people with autism in each state who could potentially be served using 1915C waivers. The study estimated that Wisconsin could serve more than 20 percent of people with autism or intellectual disability through Waiver 1915C, while Minnesota could serve about 14 percent. For most states, the figure was far lower. The average state could serve an average of 4 percent of intellectually disabled residents or people with autism through Medicaid waivers.

ABA Therapy from IABA Consultants

If you have questions regarding autism treatment, education, or plans using ABA therapy, we are here for you! Our goal is to make sure no family is turned away due to financial constraints. Our therapy team would love to talk to you. Find the location closest to you and give us a call. We’re here for you.

Sources

Spectrumnews.org, Community Letter

Health Services Research, July 2021

Take A Stand

Gratitude Within the COVID-19 Pandemic

Over the past several weeks I’ve noticed a recurring topic of conversation within my tribe; “I’m exhausted from the last year and a half.” Each person that I speak with is talking about the COVID-19 pandemic and is in disbelief this is still our life. I keenly remember the start of the pandemic and how high all our emotions were running in fear of a threatening virus entering our world.

To still be dealing with that same stressor, with case numbers approaching levels from a year ago, exhaustion is an apt way of stating how we all feel. We’re not just dealing with a virus, we’re dealing with living our lives through an active, dangerous virus. 

Trying to Find Peace During the Pandemic

With no end in sight, it’s hard to feel chipper and happy, let alone grounded. Peace can feel far away. I’ve heard a lot of “rinse, lather, repeat,” and “same shit, different day” comments in reference to what we are all walking through right now. 

In the early days of the pandemic, Brene Brown spoke on her podcast, “Unlocking Us,” that she was just waiting for a checklist of what to do and once she had the checklist her recovering perfectionist could rest. Well, Brene, we have our checklist and the treatment fidelity is low. In scientific terms, this means we are not near containing the virus, which is incredibly frustrating.

As the virus carries on in all of our personal lives it can start to feel hopeless. The heart of the matter is this; we can provide good, accurate information and it’s up to each and every one of us to choose to follow it or not. We simply cannot control other people’s behavior.

Thinking About Others

I am going to pause here to let you know that not being able to convince a person to make a logical, kind decision (even in non-pandemic times) has been the bane of my existence. Truly. I have an aunt and sister who operate the same way. We see the systems for what they are. We see human life as incredibly worthy of equality and get frustrated (OK, sometimes livid) when decisions are made that move us away from equality and logic.

I am still on a journey of realizing that no matter how much I believe in making kind decisions that I cannot control other people and make them drink my preferred brand of logical, kind Kool-Aid. People are, in fact, allowed to make their own decisions and it’s incredibly frustrating when those decisions can potentially cause harm to others (please see the ongoing pandemic).

In light of being given a magical wand of authority, what spell could we possibly conjure in the midst of this climate of adversity? What can we do when a real stressor or danger is presented day after day with high and divisive emotions being publically shared?

It is easy to lash out at others, question their beliefs, invoke shame, or simply shut down into our own little world. I have been guilty of both at times. Neither has provided any long-lasting relief. But something else has and I’d like to share it with you.

An Attitude of Gratitude

I’ve recently written that I have been in the process of divorce, which is stressful enough by itself. The stress from the divorce on top of the pandemic took me to my limit. Early on I started following the work of Lee Harris. At the time I did not have more good days than bad, quite the opposite. Lee recommended a gratitude journal as part of a healing journey. 

At first, this suggestion annoyed me. I’ve followed many different spiritual teachers for well over a decade and thought to myself, “I know, I know–an attitude of gratitude.” It felt like one more thing was being added to my checklist while my mindset was basically “what is there to be grateful for as my world is burning down?”

Lee gave a scientific reason, which at the time was just enough, that convinced me to begrudgingly start a gratitude journal. Lee explained that when you have experienced trauma your neurochemistry is depleted and leans more towards negative emotions. He went on to explain that writing five gratitude statements a day can change your brain chemistry. I was in need of rewiring and had already started acupuncture to rewire trauma inside my body. It felt right to rewire my mind so I started the journal. 

At first, I wrote very small things like “I’m grateful for a Henry kiss goodnight,” “I’m grateful for Declan belly laughs,” and “I’m grateful for a dinner with my three boys.” I wrote moments each day that started to become a tiny light. As I leaned into this tiny light, I truly did begin to see more things to be grateful for regardless of the world around me.

I was able to move outside of the tiny gratitudes and see bigger things to be grateful for; a huge one being the incredible people that surround me. I call them my tribe but my family and friends are unmatched in their ever-present love of me (and my love for them). I am a lucky woman. In writing gratitude statements I was able to see that even when the world looks like it’s burning down around you, there is still more good than bad. Truly.

Staying Positive & Looking at the Good

My own external circumstances have not changed. I am still living in a pandemic and still dealing with a divorce while recovering from domestic abuse. I am still running a company during a pandemic. I cannot speed up any external circumstances beyond my control. They will stay, just as yours will stay.

I do not know when the pandemic will end. What I do know is that we can take care of our own hearts and minds even in stressful times. Especially in stressful times. I know what it feels like to want to wrap yourself in a blanket and cry the day away. I know what it feels like to scream in frustration at the top of your lungs. It’s OK to ride these feelings out. As they subside noticing what was beside you all along will shift your internal world. I promise.

The world outside is messy but I bet you have a few things to be grateful for. So, maybe even today, instead of arguing with someone for the millionth time about your stance on (masks, vaccines, the economy, etc) you could take a deep breath and call your mom. Tell her you love her. Can’t talk to your mom? That’s OK, call dad, a sister, a brother–make a phone call to someone you love. Say thank you. Then pick up the pen and find what you’re truly grateful for.

Xoxo,

Jessie

A New Chapter

A New Chapter

It’s been a little over a year since I started blogging. I was asked to start blogging by my marketing team to bring relevant information to our families. I was secretly waiting for this invitation because I’ve always wanted to be a writer and felt ashamed while thinking about “proper writing.” The invitation to write for you all quickly became therapy for me. The perfectionism that was holding me back was put down and writing has quickly become my favorite part of every week (outside of basement snuggles and coffee…).  

When I began writing the blog I was focused on the services provided by Instructional ABA Consultants to support families of children with autism. I also wrote as a mama of two young children and one adopted teenager to let all mamas (and papas) out there know they are not alone. That even someone like me, an experienced clinician and CEO, has struggled with motherhood, tiny humans, and teenagers. Raising other humans is no easy feat and it takes a village of support and love. My hope was that my writing created a space of belonging for parents of both neurotypical children and children with autism.

Finding Myself During the COVID-19 Pandemic

As the pandemic hit in early 2020, I was not only burdened with running a company through a pandemic. I was also burdened with sheltering in place, taking care of my children, domestic violence, and the end of my marriage. I’ve alluded to the fact that I am a survivor of domestic violence. What I have not told you, however, is that I am one of the too many women who were (or are) not safe at home. 

For a long while, I did not want to write this because I was ashamed. It’s not easy to identify domestic violence, let alone leave it behind. I was also fearful that anything and everything I wrote or said would be used in court against me. That by speaking up about my situation I would damage myself. There is much I will not say until I am ready, but please know this: I was not safe in my marriage. Neither were my children. I hold no ill will toward my ex-husband, but I absolutely believe abuse deserves accountability and that we all deserve to be safe. Writing about healing, alongside a community of support, helped show me the way out. I hope someday my writing will be a candle for others.

Shifting into a mindset where I can speak up (after 6 months of trauma-based therapy and more love than anyone can ask for) showed me that my current focus is shifting away from the original focus of my writing. I want to be able to continue to explore my own writing while not forgetting the part of my tribe who need online support for their children with autism and parenting. In a gentle way, I found it to be true that the content surrounding autism and parenting should be given to a writer who is currently more aligned with this topic. I also wanted to continue writing personally as a way to heal from trauma and live a life built in joy.

How did I decide what to do?

New Writings and Blogs

As usual, when I don’t know what to do, I went first to my gut, then to my team (tribe at home) and asked what to do.

This month my company will be splitting the blog section into two tabs. The first section will be for autism-related topics and family support. The second will be my writing, wherever that takes us. It is my hope that both blogs serve each community that receives them by being relevant to their respective topics.  

Professionally, I continue as the CEO and owner of Instructional ABA Consultants serving children and adults with disabilities regardless of funding source. We have a clear mission and a badass team. Personally, I’m embracing the author I’ve always wanted to be and hoping my words bring peace, hope, joy, and connection to others.

May we all be happy, healthy, safe, and free.

Xoxo,

Jessie