One of the The Scariest Parts of Autism...

Thoughts During Autism Acceptance Month... and this time also Awareness

Far too often I hear stories of children who have wandered off from their families, their homes, or their schools. Sometimes those stories have a miraculous ending, but all too often they end in tragedy. Usually those children are on the autism spectrum. Every one of these stories makes me stop cold in my tracks and assess where my children are at that moment in time...even my neurotypical Annie’s whereabouts. 

Among all of the reasons that autism can be challenging, the biggest one for me is keeping Lulu safe and preventing her from wandering. Lulu is crazy smart. She forgets nothing. And she is curious as all get out. This combination can be dangerous, especially for a little girl who has a love of water and fears nothing.  

Lulu has a history of eloping. She likes to explore her surroundings, and doesn’t care if you don’t want to go with her. She’ll figure out a way to get to where she wants to be. She’s stealthy and she’s quick. She should probably be a cat burglar.

Lulu is not able to tell someone her name or address. She doesn’t answer to her name, and doesn’t consistently turn her head when her name is called. (A slight disclaimer: she is beginning to be able to write different things that she is tracing at school, including her address. If you happen to come across a lost nonverbal child or adult, try handing them a marker and a piece of paper... you just never know...)

Lulu has escaped while we were at Wegmans on more than one occasion. She runs away in Target (I refuse to take her to Target, and Walmart for that matter). When she was 4, she snuck away from us when we were at Moe’s, and she nearly made it to the heavily traveled parkway. A couple of years ago she fled from one of her former community workers and waded into the Susquehanna River (disclaimer: her community worker at the time was great, but Lulu escaped from her nonetheless....diligence is key, but not foolproof. More details on that fun time here: http://autismisourtrip.blogspot.com/2014/06/river-rat.html?m=1 ). And she has made many a solo excursion throughout our old neighborhood and now our new one... some resulting in calls to the local police...

The worst event was when she escaped at the Color Run a couple of years ago. Talk about panic... there were so many thousands of people there... all dressed in white and doused with color. Though it felt like an eternity, she was found relatively quickly, safe and sound.

This is not a comprehensive list of her Houdini tricks. Oh no...I believe that her guardian angel gets quite the workout! 

Her elopement is the reason that I purchased a specially made harness...that Lulu was enrolled into swim lessons (and she did GREAT!)...that I researched and got insurance to pay for a special handmade bed that zips up to keep her safe (disclaimer again: due to some less than hygienic issues, Lulu has graduated to a regular bed, but I sleep with my door open so I can hear when she awakens)...that door alarms were installed on the doors of the house...that I often take pictures of her so that I can simply remember what she’s wearing.  

Lulu worked with an amazing behavioral specialist who focuses on this elopement, as well as other behavioral challenges (like listening to directions and eating). She is currently on a waitlist for a community worker who will work on simple goals, such as walking through a store. In school, Lulu is also working on following directions and the simple act of waiting. She’s making considerable progress, but she still has a long way to go to keep her impulsivity in check. But I’m grateful for the supports that she currently has and has had along the way...I can’t imagine how crazy life would be without them!

Exhaustion

More Thoughts During Autism Acceptance Month.

Exhaustion. 

I do not know one single parent of a child with autism or other developmental disability who isn't constantly exhausted - physically, emotionally, mentally. And not even from the usual day to day things of working, cooking, homework. 

You are just flat out exhausted from trying to put out fires on a more than daily basis. 

Exhausted from trying to guess what the next melt-down will be about, and whether or not it will occur someplace good and public. 

Exhausted from researching and educating yourself. 

Exhausted from having everything put on hold during the day so that you can be with your children, only to have to do everything you placed on hold into the late evening. 

Exhausted from fighting to make sure your child is getting the appropriate education and/or is being properly integrated into the general education classroom. 

Exhausted from trying to show your autistic child how to properly interact. 

Exhausted from working a more than full time job and then coming home to potential chaos. 

Exhausted from dealing with the OCD that plagues your child, and often leads to your house becoming trashed on the daily because your kid is searching for the thing that they broke/lost 10 years ago. 

Exhausted from your autistic teenager waking up in the middle of the night needing to have her sheets changed and her walls scrubbed down.

Exhausted from coercing your neurotypical child(ren) to do their chores or homework. 

Exhausted from making sure your neurotypical child(ren) is/are receiving enough attention. 

Exhausted from always being "on." 

These are my exhaustion inducers. Though I would do anything for them, it's a good thing they are cute!

I do try to make sure that I have time for me so that I don't completely lose it on a regular basis (oh, there are days!!). I volunteer to be backstage for the shows Annie's involved with. I make sure I can at least grocery shop on my own (and luckily I enjoy that, otherwise it would not be considered "self-care" to me). I hang out with my friends. I take advantage of respite when I can. And I eat a lot of ice cream :)

Anyway, these are the things that I do for me in order to keep me sane. It doesn't always work. But once I do something for myself, then I realize that I might have a little more patience the next day (though not always 😉). 

I really do urge my friends who are dealing with something similar to make time for themselves. Call a friend who might be going through the same thing (I'm always available to listen!). Go for ice cream or coffee on your own. If respite is available, use it!  You might feel a little guilty, but it's how we have energy to fight the good fight the next day.

Siblings

Thoughts during Autism Acceptance Month.

 

When you have a one child with a disability and one who is neurotypical, you often hold your kids to different standards and expectations.  It doesn’t seem fair, but it’s just the reality, at least in my house.  Lulu is fifteen, and is still working on the very basics of life – writing her name and address,  getting dressed, answering yes and no questions, learning scaled down chores, following two step directions, asking for desired objects.  She is involved in very scaled down versions of activities that meet her capabilities, like pressing the "popcorn" button on the microwave.  Annie is 18, and is an academically advanced eighteen.  Over the years Annie has been involved in theater, Girl Scouts, softball,  and a variety of clubs.  At home there is an expectation that they will help with their little sister, and Annie, very much to their credit, has yet to complain.  There is not that same expectation for Lulu.  

Because there is such a large gap between Annie and Lulu, I often think that Annie is much more mature than they really are.  Even though efforts were (and are being) made for Annie to be a typical kid, they still grew up too fast.  Annie still has their own social issues that they're working through, but having to truly be the big sibling and role model for Lulu, Annie has made terrific gains themselves. 

I often find myself walking a tightrope in the fairness game. It's really not fair to Annie to always have to do the same things as Lulu, and the same applies to Lulu with Annie’s events. Often for Annie’s events we have a sitter because Lulu does not have the patience level to sit through some things.  However, when it comes to Lulu’s events and activities, we often drag Annie along for the ride, sometimes for the sole purpose of having someone else there to support Lulu.  Luckily, I think Annie actually enjoys it because they are Lulu’s biggest cheerleader.

I often say that Annie is the best big sibling to Lulu. I mean that with all of my heart. But Lulu is the best little sister for Annie.  Lulu brings out levels of kindness and compassion in Annie that are rare in siblings.

"If you want to know how you should treat someone with special needs, just look to their siblings. They will show you.'

No One Should Be Invisible

Today, during Autism Acceptance Month, I think about this: when you have children, you might talk about them in front of them, but as though they aren’t there.  “This kid has a behavior/sensory/academic problem.”  “This kid won’t eat her vegetables.”  “This kid won’t do her homework.”  "This kid is a monster." 

Kids understand more than you think.  They hear everything, and much is internalized by them and can have a major impact.  Just about everyone does it, but it doesn't make it OK.  

The same is true for people with autism or other disabilities.  All too often a person with the disability is talked about as if they aren’t there, even though they are standing RIGHT THERE.  Decisions are made without input from the affected person.  While it’s tricky when someone is non-verbal, every effort should be made to reach out and understand.

I remember a specific incident from when I worked in a residential group home. This nonverbal gentleman needed assistance in the restroom, and from what staff indicated loudly to a room full of staff and other residents, it was a bit on the odorous side. I said something along the lines of, "ok, that's enough," but staff continued to complain loudly.  It was at that point that I said, also loudly, "he's literally standing right next to you, and he understands every word you're saying. Stop it." 

If a non-verbal person has an accident, spills a drink, or does something that might be embarrassing to a neurotypical person, don’t you think it would be embarrassing to the person with a disability...even more so if they are being laughed at?  It’s not OK to laugh at someone’s shortcomings...ever.  Don't think for a second that a disabled person is incapable of understanding.  I know that while Lulu has a hard time expressing herself, receptively she understands everything.  

People don’t like when they are talked about behind their backs...why would ANYONE like to be talked about as if they are invisible?  Just don’t do it.  Think before you speak.  Always.

2022 Autism Acceptance Month - Day 1

Today is Day 1 of Autism Acceptance Month.  I thought I would kick off the month by providing some basic information that I found on the Autism Speaks website:

In 2021, the CDC determined that approximately 1 in 44 children is diagnosed with an autism spectrum disorder (ASD).

That's 2.3% of all children in the United States.

That's a 24% increase since 2016, when the estimate was 1 in 54. This 24% increase in prevalence shows progress in awareness and advocacy for early identification and diagnosis but also reiterates the need for a significant increase in funding for autism research and services to be provided throughout the lifespan.

Boys are four times as likely to be diagnosed as girls, holding steady from previous reports. This indicates the need for more research to understand the gap in prevalence and ensure girls on the spectrum are receiving the care they need.

Significant differences remain in the frequency of autism diagnosis between the CDC’s monitoring sites. These range from a low of 1 in 60 in Missouri to a high of 1 in 26 in California. This may be due to how autism is diagnosed and documented in different communities.

While the CDC report found no difference in the overall prevalence rates by race and ethnicity, the prevalence of ASD among Hispanic children was lower compared to the White or Black children in multiple sites. This finding indicates barriers in ASD diagnosis for Hispanic children.

Further, Black children with ASD were more likely to have lower IQ scores compared to White or Hispanic children. This indicates that only more severe forms of ASD are being identified among Black children compared to White children and points to existing disparities and barriers.

Early intervention affords the best opportunity to support healthy development and deliver benefits across the lifespan.

There is still no medical detection for autism.

Seems scary, right?  Well, it is.  But I believe that the rates are skyrocketing because of a combination of things:  a better understanding of the disorder, as well as better tools with which to diagnose autism at an earlier age.

When Lulu was first diagnosed, I only knew a few people affected by Autism Spectrum Disorder, and interestingly, they were girls. Today, thirteen short years later, there are too many to name here. This truly saddens me, but it also brings a sense of relief. What I mean by that is as a result of the increasing rates of diagnoses, more attention is given to the disorder, and thus the hope is that funding will go toward additional research and cutting edge therapies for those affected. It also means that overall one might find an increased level of patience for children who are melting down, who have quirks, or who stim…this patience absolutely was not common when I was in elementary or high school.

I know that I sure am glad that Lulu was diagnosed in 2009 rather than even 20 years before that. 

Cheers to my Little Laurie Lulu and all others affected by autism. You are all my heroes!

20th Anniversary of 9/11/2001

When I was a little kid, I remember thinking that it was strange that people remember where they were when certain events took place... JFK's assassination, Pearl Harbor, etc. ... but couldn't remember why they walked into the kitchen.  I remember where I was when Reagan was shot and when the Challenger Space Shuttle exploded. And I definitely remember 9/11.

Around 5:55 am PST on September 11, 2001, I had just finished showering, and was drying my hair.  Usually John was in bed just listening to the radio news while waiting to take me to the BART station so I could go to work in San Francisco. This day was different.  I looked behind me in the mirror, and saw him sitting on the edge of the bed watching television.  

"Weird," I thought. Then I yelled, "What's so interesting?" 

He replied, "A plane crashed into one of the WTC towers. I'm not sure if it's a hoax or an accident." 

I yelled, "Probably an accident," and continued to dry my hair. 

Then I heard, "Holy shit! Another plane hit the second tower!!" 

I put the hair dryer down and walked over to him and said, "This isn't a David Copperfield trick."

That day, I didn't go to work.  I sat in front of the TV, watching numbly as the third plane crashed into the Pentagon, and fourth plane crashed into that field in Pennsylvania. 

John and I speculated that perhaps the fourth plane was a fluke, but later learned it was not. He spent the day listening to the news, searching the internet, and going to work at Berkeley.  He held class but didn't teach that day... he and his students who showed up just talked about what was happening. 

I called my parents and brother, who live about 90 miles from DC. They were as dumbstruck as I was. I hated being away from them more than ever. 

What happened in the days that followed was nothing short of amazing.  I witnessed the country coming together, politics were put aside for a short while, and people stopped being petty.  The American Flag was seen everywhere... patriotism was the highest I've ever seen. People were kind. 

I learned about the heroic measures people took to save people, or even just to save themselves.  I watched video clips, listened to the news, and actually sat on the edge of my seat as the President spoke. I learned of the families that were left behind, the kids who lost their parents. I was in awe of the passengers on Flight 93 who tried to orchestrate a counterattack that ended up crashing that plane into that PA field.

I'm not a fan of offensively attacking others. Admittedly, I was somewhat relieved when we attacked Afghanistan. Toby Keith wrote(?) and sang a song that captured what seemed to be the sentiment of the nation at that time ("Courtesy of the Red, White, and Blue.") And later Alan Jackson wrote a song about it that made me teary ("Where Were You When the World Stopped Turning.")

About a year later I was working in San Ramon, CA. I was so happy to see that they changed one of the street names to honor Tom Burnett, one of the passengers on Flight 93.  He was from San Ramon, and left behind his wife and three little girls. 

I'll never forget where I was that day.  It seems like yesterday. 

#September112001

#wherewereyouwhentheworldstoppedturning

#itisstillsurreal

#neverforget 

#letsroll

She's the Wanderer...

In the McNulty household, the rate of elopement has been on a steady incline. 

Elopement is a common behavioral occurrence among those with autism where a person will leave a safe and supervised place and expose him/herself to potential danger.  This behavior is one of the largest causes of death among those with autism.  Often wandering is goal related, where the person is seeking a return to a favorite place or is seeking to escape an undesirable place. 
http://blog.stageslearning.com/blog/wandering-and-autism-6-strategies-to-prevent-wandering-behavior

The McNulty household has been dealing with an increased rate of elopement of late, most recently last week. Since we moved to the next town over, Lulu has increased her eloping game, escaping or trying to escape at least a couple of dozen times. If you are on your game, you’ll catch her before she’s off property or even before she’s descended the steps.  If you’re not, well, let’s just say that you might be getting some exercise.

Lulu’s affinity for eloping started back in 2011, just two short years after she was diagnosed with autism. The first truly significant time she wandered was when we were at Moe’s which is within sight of Chuck E. Cheese.  John caught her when she was nearly to the parkway.  After that she had wandered away while we were at Wegmans, from our old house, at the horse farm, and more recently from our current home. When we were at the old house, she would go across the street to our neighbor’s house…luckily Tara has a special place in her heart for that crazy little Lulu, and quite honestly, I felt comforted knowing that if she had run to Tara’s house, she would be very well cared for. Fast forward to this year, and in addition to running across the street, Lulu has wandered from us at the Color Run and from our previous and current homes. At the Color Run I think that she simply wanted to get away from all of those crazy, loud people (can’t say that I blame her). I think that currently she just wants to go back to her old home.  Since the move, she has been running to the church next door.

Little by little I’ve been securing the house with the help of my best friend Mary.  Alarms have been put up and special locks have been worked on.   It doesn’t help that Lulu has figured out how to disable the door alarms.     

Lulu’s most recent escapade happened while I was at work. It seems that she had left her iPad playing loudly while she slipped out the door, so her disappearance was unnoticed for a period of time.  She didn’t go into the church next door because the doors were locked.  Instead, John called 911 as he drove around the neighborhood looking for her.  They had a girl who fit the description:  a non-verbal girl who was wearing a purple sweatshirt.  Lulu had entered the home where a woman was taking care of her young granddaughter.  It is my understanding that the woman had been quite startled and ended up contacting 911.  Lulu had made it a quarter of a mile away from our home. 

I learned about this as I was getting ready to leave work.  To say that I was an enormous mix of emotions was an understatement.  I began texting my “fixit” friends to gain advice on how to shore up the house. Then I got home, checked on Lulu’s whereabouts, and gathered more details of the situation from John.  (Glass half-full moment:  Lulu was dressed!!)  

Then I headed for Lowe’s.  I called my dad when I got there, who just didn’t know what to say when I began crying because I felt so scared and helpless, though he was very supportive.  He suggested jingle bells for the doors.

While in Lowe’s, I contacted my friends who work in this field with me to find out how other families handle these sorts of situations, to ask advice about possible residential placement if her eloping continues and worsens, and to find out what sorts of things I could try (additional respite, perhaps?).  I called Lulu’s behavioral therapist, who then seemed to begin an action plan for Lulu’s safety and my own peace of mind. I brought up medication, but they all confirmed what I already knew...medicating her for the sole purpose of preventing her from running will not prevent elopement if it is goal-driven, which it is in her case.

I purchased special locks for the sliding glass door and a bike chain & padlock for our gated backyard.  I then went over to the Christmas Tree Shoppe to see if they had jingle bells.  They did not have any that were Christmassy, but they DID have Halloween jingle bells.  Score one for Mom!!  Let me say that Lulu loved them.  But then she figured out their intended use, and she was NOT happy!  Sorry Lu, but a mom has to do what a mom has to do!

I think that Lulu knew that she scared me.  When I came back from Lowe's, she came over to me, hugged me tightly, and didn't let go.  She did this without prompting...another milestone in my eyes.

After speaking with Lulu’s service coordinator on that following Monday, I learned what doors are definitely shut for the time being (residential placement), and what doors could possibly be opened. It’s actually a positive thing to know what you can’t access…you just turn your attention to the things that are accessible rather than beating your head against the wall.

I did receive information about Project Lifesaver, and I’ve been in contact with them.  They provide a bracelet that the child will wear at all times, and it has a GPS chip in it.  I’m not sure how Lulu will take to that, but she MUST. STAY. SAFE.

At this time the only thing that I really know is that hypervigilance will need to be the driving force to keep Lulu safe.  Locks, alarms and jingle bells will help give you a few extra seconds or even minutes, but ultimately knowing her whereabouts might mean that you sit with her in the same room…might mean that you put your phone away…might mean that you simply sit and watch her.  Hardly seems fair to an 11 year old girl who should be able to have a little more independence as she grows older…