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…

Elopement "Fun" at the Color Run...

Let me tell you a story about elopement, and no, it’s not the romantic definition. 

First, one of the definitions of elope is “to slip away or escape.”  Elopement is quite common with people affected by autism.  Lulu is no exception.

I work for the Franziska Racker Centers, and we support individuals with developmental, mental and intellectual disabilities.  My Lulu benefits from the supports that she receives from this agency.  It’s a fantastic place to work, and generally speaking, everyone is wonderful there, from the folks we support to the staff members who work there.  I really couldn’t ask for a better place to work.

At Racker, there is always a big emphasis on working together as a team, whether it’s a departmental team or an agency-wide team.  Today was the Color Run, and I began working on forming this year’s work-sponsored team back in January.  We did this last year with a team of 34 people.  This year our team was up to 90, which is simply inspiring to me. 

I was torn as to whether or not Lulu should participate in this event. There were just so many people there, and it was pretty likely that she would get overstimulated.  But then there's the argument that she should be included in events like these because it's her right and she deserves to have a good time just like everyone else.  I even talked to her behavioral therapist about it.  After talking with some of my co-workers, they all agreed - there are 80+ people who will be there to help, who want to help and who "get it."  So Lulu had a crazy outfit on just like the rest of us, and she even picked it out herself!!

I loved seeing everyone today – staff, the people we support, and family members all participated in this event.  Everyone encouraged each other, and there were lots of laughs and hugs.  Lulu made it the entire way, and though she wasn’t a fan of the slight hills, she seemed to like to get color on her.

Fast forward to the end of the event, and Lulu is just….done. John had her by the hand one minute with me standing right next to her.  He opened a packet of color and took a few steps away.  I turned to watch, then realized that Lulu wasn’t with him.  She had taken off that quickly…and there was a sea of white t-shirts as far as the eye could see.

I tried to remain calm, yelling to John that Lulu was missing.  One by one, my co-workers realized what was happening, and they all began to disperse in different directions.  Because of where we work, they all knew the potential severity of the situation…they all knew that Lulu was non-verbal, and would not come when her name was called.  Some knew that she was drawn to bubbles, water, music and bounce houses.  They were on top of the situation from the word “go.”

I was taken over to the Lost and Found tent where I showed a police officer her photo.  I have never been more grateful for technology.  There were many questions – what does she look like? How old is she?  What is she wearing? The police officer and the folks at the tent looked physically pained when I mentioned that Lulu was autistic and non-verbal, and that the likelihood that Lulu would respond when called was very slim.  Around that same time, I mentioned to a co-worker that Lulu probably wanted to leave, and then she ran off to the parking lot to look there.  After a few minutes, received a call that Lulu had been found by one of my co-workers...and later Annie told me that when she saw Lulu at the car that she pinned her down and told her not to run away ever again.   

I have never been more frightened in my entire life.  And I’ve never been more thankful to everyone who stopped what they were doing to help, whether it was to look for her or to keep me from falling apart. 

The African proverb, “It takes a village to raise a child” is not quite accurate.  In Lulu’s case, it takes a whole damn army.  And I am grateful to have my work army beside me.

to the woman at wegmans...

To the Woman at Wegmans:

Sometimes you just feel like you can't catch a break.  You plan for what should be a simple outing, and when you get to where you are going, everything falls apart. Take this real life scenario from a couple of years ago, for example:

I needed to buy groceries, and so I planned a trip to Wegmans.  Having no childcare that day, I put extra effort into what I was bringing with me and into the things I would need to do to make it a successful trip.  I called ahead to Wegmans to make sure that they had adequate staffing to accommodate Lulu, as she requires a dedicated person to be with her due to her adventurous nature (read: she climbs on EVERYTHING).  Having set up a timeframe in which we could arrive, the girls and I headed to Wegmans, where Lulu would go have an hour of play while Annie would shop with me since she had aged out of WKids. We walked in, headed toward the play center, and found out that for whatever reason they were not able to take her as they had originally planned.

<Queue the hysterics!>

First I explained to Lulu that she couldn't go in today because W-Kids was closed.  I said that she would have so much fun in the cart with her sister pushing her throughout the store.

<Ear piercing scream emitted here>

Lulu tried to get into the room by attempting to climb over the half-door.  She cried.  She screamed.  She would not listen to reason.  She just kept looking at me with those big beautiful eyes that were so full of hurt, saying repeatedly, "W-Kids? W-Kids?"  (My heart shattered into a million pieces that day). The W-Kids worker said that she was sorry, and that Lulu could come in next time.  Lulu just kept saying "W-Kids?" as I fought back tears.  Finally I did what I very, very rarely do...I asked her if she wanted to play with my cell phone (I have not allowed her to make my phone a toy for her to use at her whim -- this takes some perseverence on my part!).  She was having no part of it.  

After what seemed like an eternity, I went to my last resort -- I handed Annie a couple of bucks and gave her strict orders to GO BUY HER SISTER A HERSHEY BAR!  She took a couple of steps and, since she was never one to pass up on a golden opportunity, turned around to say, "Sooooo, can I have one too?" Oh. My. God.  Seriously?  I (not so calmly) replied, "Yes, Annie, just pick something out FAST!"  (Annie did as she was told (this was her first experience with actually purchasing something at a store), and ran back to us at full speed, candy bars in hand.  She showed Lulu the candy bar and said, "Laurie, we need to go to the car.  You can have chocolate if you come with me." This took a little coercion but finally Lulu agreed to walk out to the car.

While I was getting her jacket back onto her, this woman who had been standing near the exit just watching everything as it unfolded walked over to me and said, "I just want to tell you that you really are a great mom.  You're doing a great job with her."

All I could do was just look at her.  I was completely dumbfounded.  I had never laid eyes on this person before or since. I thought that anyone watching would be witnessing all of the parenting no-nos that a person could make -- giving in, bribing with chocolate, offering technology as a solution instead of teaching my daughter a lesson in coping and going with the flow.  I thought I was at my parenting worst.  Instead this woman saw me as a parent who was trying to work through a difficult situation with a child who obviously had issues with coping and understanding.  This was a woman who was trying to show empathy...who was trying to show that someone cared...was trying to show kindness.  At least this is how it appeared to me.

I saw this quote a long time ago, but it came roaring back into the forefront of my mind:

Everyone is fighting a battle you know nothing about.  Be kind. Always.

This is just a good rule for life.

So to that woman in Wegmans - thank you for not judging my ineptness to calm my little girl. I am forever grateful for your kindness.  It stays with me even years afterward.