one crazy ride

This is the crazy ride we're currently on...almost to a T.

This post is about real life with Lulu. It's accurate and it's raw. I don't write this way often at all, because who wants to dwell on the negative? In no way does this writing negate all of the wonderful things that Lulu does or says, or any of the tremendous progress that she has made. She is an amazing girl who is so loved. 

Lulu is getting bigger and stronger on the daily. And the behaviors are ramping up to all new highs. My house is tossed on a regular basis. She's busted through my bedroom doorframe, and has destroyed many pieces of furniture in a variety of ways, including bouncing with full force and having accidents on them. She sneaks food, and becomes really aggressive if you try to stop her. Lulu's sleep patterns are wacky at best. She has hurt Annie, John and me on many occasions. She has pretty gross bathroom habits. And she has severe OCD that medication doesn't seem to touch, and instead seems to make worse. 

In the very foreseeable future, Annie will leave for college in the fall. John and I will take care of Lulu, each on a rotating basis. And then what? The outlook is scary for me personally.  

The entire process is seriously heartbreakingly flawed. Questions are asked of us: Have you tried respite? Have you tried getting comm hab? Periodically Lu does stay at the respite house for a couple of days at a time. But there had really been no in-home respite for quite some time. And the same thing with Comm Hab. The fact is, there is a huge staffing crisis in the state of NY, and the people with disabilities...and their families...seem to be suffering the most. 

Have you talked with the school about placing her at a residential school? Interpretation: let's kick it to the school so the school district will pay for it. This is a no go, because she does well at school. There are a classroom of adults who can support her if she has a challenging time. But those supports are not in my home. 

Have you taken her to the psychiatric ER (known as CPEP here in my town)? I've taken individuals there before, and I assure you, it's really no place for a child or adult who cannot comprehend the full scope of what's happening. It's a scary place. And it's pointless for people like Lulu. 

We've been told to go to the walk in, or to the hospital, or to CPEP whenever anyone is hurt, just to enhance the paper trail. But how can I take into account for Covid when I have two pretty severe autoimmune disorders, and several less severe ones? How do you have someone willingly go to the hospital because they are bruised, but not much more than that... all to have a paper trail?

I've been my little girl's champion from the start, and the system has done well by my girl thus far. And I am so incredibly grateful for that. But when we really need it the most, the doors are slammed shut and barricaded tight. 

I'm told that they don't place children. I beg to differ. I've put 4 minor children living in residential placements onto school busses. Then I'm told to consider the very program that the girl in the article was likely sent to. That girl came back after a year, and the cycle started back up. And I hold no hope that it would be a different outcome with my child. 

Why can't letters from my doctor, my correspondence, and the pages and pages of documentation from my daughter's Care Manager suffice? Why do I have look out of state for placement? Why are the residential placements in NYS so paltry? Why do they not care about the safety and wellbeing of my child?

WHY IS THIS SYSTEM SO FLAWED? 

The decision to have your child move to residential placement is not anything that one comes to lightly. It's the last resort. It's the thing that makes you feel like the most inadequate parent...like you've failed. Intellectually I know this is not true. But man, it sure messes with your heart and your mind.

https://dnyuz.com/2022/06/01/sabrinas-parents-love-her-but-the-meltdowns-are-too-much/

Celiac... Because Autism Isn't As Much Fun Without That!!

Thoughts During Autism Awareness Month.

There is growing research that indicates a link between autism and gastrointestinal issues. In fact, the current research estimates that children with autism are four times more likely to suffer with GI problems. There are additional studies in the works that are investigating the brain-gut connection in children with autism, and I'm excited to read about them.

When children are diagnosed, some people automatically pursue a gluten-free/casein-free diet (casein is a protein found in milk and cheese) in the hopes that it will cure the autism. I never bought into that train of thought. In fact, I wanted nothing to do with it, and fought it with every fiber of my being.

But life is certainly not fair, and we ended up discovering that Lulu has celiac disease. So she went on a gluten-free diet. In my opinion, it did relatively little to help her autism symptoms improve. She had a burst of language shortly after we began the diet, but then that leveled out.  

She has now been gluten-free for nearly 13 years. Lulu has made significant progress in that time, but I do not believe for one minute that it has anything to do with the diet.

I am not knocking anyone's belief in the diets. You do what you have to do to make your life a little easier. And who am I to say that they are bogus across the board? Autism is a spectrum disorder....what one thing doesn't work for one person, may actually work for another. And I hope it does!

What? Me Finicky?

Thoughts During Autism Acceptance Month.

I often think about how many people on the autism spectrum are exceptionally finicky eaters. The Lu is no exception. 

Over the years, her teachers, aides, and her behavioral therapist have worked with Lulu to get her to try different things. Even Annie would model and encourage the eating of new foods to show Lulu that something was yummy or wasn't too hot. That would only work occasionally, and usually only in those situations (just at school or just during therapy). 

Lately, though, she has been branching out and trying new (and sometimes forgotten) foods and textures. Lulu will now eat pizza, chicken, ham, sweet potatoes, and scrambled eggs, and even brussels sprouts, among other things. Even better yet, she eats them at school, at home or out at restaurants.   

These may seem like trivial things, but they're huge to me. Crossover of skills from situation to situation is difficult for many on the spectrum, and I consider every new food tried to be a major breakthrough! Go Lulu!

Lu-ese

Thoughts During Autism Awareness Month. 

“Lu-ese.” It’s the language of Lulu. She has her own way of saying words, and many times it’s quite difficult to understand what she’s saying. It becomes frustrating for both her and for anyone who is trying to translate what she’s saying.

Many years ago, Lulu came to me saying “obacor.” She asked me for it over and over. She smiled so sweetly and said it again, as if she were really trying to be patient with my ignorance. When that didn’t work, she asked my mom for it. Then she asked Annie for it. No one could figure out what she wanted. After a period of time that seemed like an eternity, Lulu ran to the other room, grabbed the huge bowl that said “popcorn” on it, brought it back to me, and said “obacor.” Talk about an “a-ha” moment! Way to use adaptive communication skills!

At least once a week Lulu comes up with a new word or phrase that must be deciphered. Sometimes I can figure it out, other times it remains a mystery. If it’s completely unintelligible, even with a lot of detective work, meltdowns happen. Once I figure it out, though, we work on her articulation with her so that the next person won't have to go through that! Lulu has figured out that if she can ask for things, she will likely get them, so she does actually try to sound out words.   

Lulu works on mastering the English language by watching certain videos on YouTube or on the DVD player, typically watching short segments over and over (again, testing the patience of saints for those who have to listen to it) until she has it down. Sometimes she’s working on a song. Her current go-to video? Anything Disney Princess. I have to say, she’s actually very good!!

The number one frustration that I have with autism is communication. While Lulu is able to let me know what it is that she wants, she is unable to tell me how she is feeling and why she is feeling it. Sometimes she bursts into tears for no apparent reason. I don’t know if she is sad. I don't know if she is not feeling well. I don’t know if she’s lonely. I don’t know if she’s confused. She is effectively nonverbal. It can heartbreaking. And I know that many other parents of children on the spectrum feel the same way. And that is why it is so important to have patience.

Sensory Processing Order

Thoughts During Autism Awareness Month.

Sensory Processing Disorder (SPD) is a neurological disorder that causes difficulties with processing information from the five senses: vision, auditory, touch, olfaction, and taste, as well as from the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SPD, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SPD; the difference is that information is processed by the brain in an unusual way that causes distress, discomfort, and confusion. (Source: Psychology Today). 

Anyone can have sensory issues. I do. I hate, hate, hate when my socks get wet. If one drop of water gets on them, I peel them off as fast as I can. I would rather go barefoot than to deal with that torture.  And don't get me started on certain food textures...

People with autism often have sensory processing disorder. Lulu has some sensory issues. She likes to crash into things (pillows, couches, etc.), doesn't like certain noises (like my singing - everyone's a critic!), has a limited repertoire of foods that she will eat (though I will say that it is improving!!), will only wear stretchy pants (she hates denim)...the list goes on. She has benefitted from a weighted vest at school, and sometimes uses a weighted blanket at home.

After her autism diagnosis, it was decided that the formal living room would become a sensory room, with the help of my parents and brother. We had a ball pit, trampoline, sensory table, crash pad, and hung a 360 degree hook from the ceiling that we could hang a swing (we had four different swings that we can switch around...a platform swing, a teardrop swing from Ikea, a horse swing and an adult version of an infant-style swing). There were also many sensory toys and educational games. Both girls loved it, and played in there often. When Lulu would be in her "climb everything" mode, it sometimes helped to redirect her to the trampoline or the swing. It was a great room to have on rainy and cold days!

Annie liked it in there too...she had a reading nook and an art corner, so some days I would only see her when she surfaced for food. But she also went in there to hang with Lulu. They seemed to have a great time in there.

As they got bigger, and Lulu's needs changed, we would give away things that were no longer appropriate for Lulu. Now she’ll hang out on the sofa with her tablet and headband headphones (when they aren't broken).

Obviously one does not need to create a sensory room for their autistic child. But having some sensory toys or other items available, as well as access to a swing or weighted blanket, could go a long way to helping an autistic child (or anyone with SPD) calm down and regroup.

The Club

Thoughts During Autism Acceptance Month. 

This speaks to me today, though I'd change "son" to "child."

It doesn't matter who you are, every parent who has with a child with disabilities maneuvers the intricacies of this world with the help of someone who has also gone through it. The camaraderie is amazing... it's this like this exclusive club that you never wanted to be a member of, but now that you're here, you don't want to live without it. 

Team Lulu

Thoughts During Autism Acceptance Month.

Today I am thinking about the amazing team of people who have worked, or currently work, with Lulu. It is incredible to me that so many people have such an impact on Lulu, and that without that team, she would not be where she is today. 

When Lulu was first diagnosed, I was completely overwhelmed at the mere thought of having so many people work with her, and having to rely on them so heavily to help me navigate through the special needs world. But I'm glad that I insisted that she get evaluated when I did, because she was able to have Early Intervention therapies. And I'm glad that early on I asked the hard questions, like "Is Lulu showing red flags for autism?" because that allowed her to have an even earlier diagnosis, which led to more extensive therapies. 

Today I thank the amazing teachers, aides, therapists & community workers that have worked with Lulu over the years. From the time she was diagnosed at the age of two, she has had a LOT of therapies and people in her life, and I don't think that she could have made all of the tremendous progress without a single one of those people. Each person has worked so hard to help Laurie come along, to include Annie where appropriate so that she can be a great role model for Lulu, has helped me to understand the various ways to help Lulu progress, and has cheered her on (sometimes even sending me photos during the school day)!! 

So...THANK YOU to all of TEAM LULU!! Her team grows constantly, and we are all so lucky to know you. ❤️

A little medication cocktail, anyone?

Thoughts During Autism Acceptance Month.  

Today I'm thinking about how so many people on the autism spectrum are medicated for various reasons.  We debated long and hard about medicating Lulu...we knew it wasn't going to "cure" her autism, but maybe it could help the symptoms?  It was a very difficult decision, but in the end, the reason we decided to do so was because we thought that she was "getting in the way of herself."  What I mean by that is I thought her obsessions, behaviors and perseverations were blocking the progress that we thought she could be making if given the chance.  

We tried a couple of different medications before we settled on Risperdal.  This is a medication that is commonly given to people with autism to help reduce behavioral symptoms.  It did actually help Lulu.  She began making a lot of progress.  She learned how to swim.  She began following directions.  She was able to write her name and numbers.  Her aggression toned down a bit.  It was pretty great!  

However, there was a BIG downside to that med.  Lulu put on a tremendous amount of weight, and though we've tried to limit what she eats, her metabolism has changed, and she keeps packing it on.  She was put on another medication that is supposed to help as an appetite suppressant, but it didn't do much, other than make her cry... and she's not a cryer.  So we struggled with the pros and cons of that medication, and the pros outweighed the cons (no pun intended!).  

After awhile, the Risperdal stopped working, and she went without anything for a small stretch. But puberty hit, and we were off and running again. Along with the aggression, her sleep cycles were way out of whack. And when she is awake, you know what that means...I am also very much awake. There were weeks when I got 12-15 hours of sleep in a 7-day stretch. 

So new medications were explored.  Her psychiatrist tried her on a few other meds before landing on guanficine (Intuniv). He also gave her some meds to help with sleeping: Trazodone and Geodon, as well as melatonin. And all of that worked pretty well, until...

Next up! Obsessive-Compulsive Disorder! Lulu has recently had some really bad bouts with OCD. She gets something in her head and she asks for it incessantly. If you will, try to imagine what is happening in my house right now since this week's "freak-of-nature" snowstorm... our power is back as of yesterday, but the internet is not. 🥴  She is not dealing with that very well.  (Luckily for her dad, he can use his Hotspot to give her internet access, but I do not have that capability. I'm just gonna hope that Spectrum does right by me tomorrow 🤣). Her psychiatrist suggested using CBD gummies, and they do work to tamp down the incessant requests for unavailable items. And sometimes when it's really bad, and she's literally being aggressive with us, or is flipping furniture and tossing the whole house (sometimes breaking things like doors) looking for something, she will have an Ativan. I can't imagine being so out of sorts that I would need to be medicated like that. What must she feel like in her skin? 

Another extremely frustrating OCD manifestation is how she gets "stuck" and won't move.  Getting her on or off the bus daily is always an adventure. One day when her dad brought her home, she would NOT get out of the car for more than 90 minutes.  The door was open, it was really cold, and still... nothing.  90 minutes in the cold... that's a big NOPE from me!

So we talked about it with her psychiatrist, and we got her moved from guanficine to Prozac, because apparently SSRIs are a treatment for OCD. This has helped a little bit, but it's still a long road to travel. And it's not really helping the aggression. 

I'm hoping that they'll come out with something to combat the severe side effects of medications.  And even more so, I'm hoping that one day she'll be able to control her behaviors without the use of medication.  But until then, we'll continue to support her as she needs it.

Little Milestones

Thoughts During Autism Acceptance Month.

Today I am thinking about how Lulu is showing her "typical" side to us, little by little. 

We work very hard at teaching her various interpersonal skills, and her most recently acquired one is nodding her head to say "yes." That happened today, and her dad and I jumped all over that skill. 

I still try to stress that she say things like,  "stop it, Annie!" and "get off of me," and other things like that.  Sometimes she needs prompting, but there have been a few times lately where she's spontaneously told Annie to get off of her. 

These are skills that have been worked on for years.  Sometimes when you work on something that seems so minor with seemingly little headway, you can become discouraged.  But the moral to this story, for me anyway, is that you have to keep trying.  You never know what is going to "stick" and/or when it will happen.  Every little milestone means so much, and they are not to be taken for granted.

Myth-Busters

Thoughts During Autism Acceptance Month

Autism is a very complex and often mysterious disorder. There are many myths and assumptions about it, and you can find them all over the internet, in the news, and in daily life. Here are some of the main autism myths debunked...with my own peanut gallery commentary at the end of each! (Source: Autism Speaks... and me!)

Myth #1: People with autism don't want friends. 

If someone in your class has autism, she probably struggles with social skills, which may make it difficult to interact with peers. She might seem shy or unfriendly, but that's just because she is unable communicate her desire for relationships the same way you do. (I believe that Lulu does want to have friends. If she sits down next to you and snuggles in, it means that she's found comfort in being with you. This has been happening more often, and with more people.)

Myth #2: People with autism can't feel or express any emotion—happy or sad. 

Autism doesn't make an individual unable to feel the emotions you feel, it just makes the person communicate emotions (and perceive your expressions) in different ways. (Lulu laughs and cries at some of the same things that "neurotypical" kids do....sometimes it's completely inappropriate too...it's just her finding her way).

Myth #3: People with autism can't understand the emotions of others.

Autism often affects an individual's ability to understand unspoken interpersonal communication, so someone with autism might not detect sadness based solely on one's body language or sarcasm in one's tone of voice. But, when emotions are communicated more directly, people with autism are much more likely to feel empathy and compassion for others. (I know that when I am feeling sad, Lulu will come and sit by me for awhile....as if she knows I'm sad).

Myth #4: People with autism are intellectually disabled. 

Often times, autism brings with it just as many exceptional abilities as limitations. Many people with autism have normal to high IQs and some may excel at math, music or another pursuit. (There's no question that Lulu is bright...she just has difficulty in showing what she knows when it comes to testing).

Myth #5: People with autism are just like Dustin Hoffman's character in Rain Man. 

Autism is a spectrum disorder, meaning its characteristics vary significantly from person to person. Knowing one person with autism means just that—knowing one person with autism. His or her capabilities and limitations are no indication of the capabilities and limitations of another person with autism. (It's amazing how many times people have asked me if Lulu is just like Rain Man! No, sorry, she's not an excellent driver!! 🤣).

Myth #6:  

People who display qualities that may be typical of a person with autism are just odd and will grow out of it. 

Autism stems from biological conditions that affect brain development and, for many individuals, is a life long condition. With Lulu, her autism symptoms were seemingly mild at first, and then they seemed to grow stronger as she got older.

Myth #7: People with autism will have autism forever. 

Recent research has shown that children with autism can make enough improvement after intensive early intervention to "test out" of the autism diagnosis. This is more evidence for the importance of addressing autism when the first signs appear. (Keep in mind that just because someone can "test out" of the autism diagnosis, it does not mean that you should assume that will happen. But you should never, ever give up hope!)

 

Myth #8: Autism is just a brain disorder. 

Research has shown that many people with autism also have gastro-intestinal disorders, food sensitivities, and many allergies. I don't know if I believe that there is a link between GI disorders or if it's just coincidence. I do know that coincidentally Lulu has Celiac Disease, and that has made our lives far more complicated than just her having autism!

Myth #9. Autism is caused by bad parenting. 

In the 1950s, a theory called the "refrigerator mother hypothesis" arose suggesting that autism was caused by mothers who lacked emotional warmth. This has long since been disproven. This theory made me cringe from the first time I researched autism symptoms. What a horrible burden to place on the mothers of autistic children! I know I constantly feel guilty for the wouldas, couldas, shouldas when it comes to both of my kids...I can't imagine if that was heaped onto my plate as well!

And finally, my favorite...

Myth #10. Vaccines cause autism.

From the Kennedy Krueger Institute's website (links to studies and resources are found at this website as well): https://www.kennedykrieger.org/stories/myths-facts-about-autism-spectrum-disorder.  

"While there is no known single cause of ASD, there is no evidence to support a link between vaccines and ASD (American Academy of Pediatrics, 2017). Thimerosal, which used to be a common vaccine ingredient, was once thought to have caused ASD. Since thimerosal has been removed from vaccines, however, the prevalence of ASD has increased rather than decreased (Center for Disease Control and Prevention, 2015). The American Academy of Pediatrics has compiled a list of the research studies that demonstrate there is no link between vaccines and ASD. Although there is no evidence that vaccines cause ASD, there are certain environmental and genetic factors that are associated with a higher risk of ASD due to their effect on brain development. There are currently 61 genetic variations that are associated with ASD risk, and repeated or deleted sections of DNA and chromosomal abnormalities have also been implicated (Autism Speaks, 2017). Environmental risk factors associated with ASD include advanced paternal age (over 34), poor maternal physical and mental health, maternal prenatal medication use, maternal exposure to chemicals, preterm birth, complications during birth, low birth weight, jaundice, and post birth infections (Karimi, Kamali, Mousavi, & Karahmadi, 2016). Mumps, measles, and rubella are among the infections associated with an increased risk of ASD, so the preventative MMR vaccine helps mitigate the risk of developing ASD from these infections."

Rituals

Thoughts During Autism Acceptance Month.  

I have been thinking about the rituals that people with autism often have.  Some people line up toys or other items.  Others must have a specific routine throughout the day.  In the past when she was little, Lulu could not get dressed in the den unless the lights were on. It doesn't matter if there is a lot of sunlight...those lights must be on.  She also has to shut off all electronic devices when she is leaving for school or going to bed... this continues to this day.  And if she was in distress, she would sing Jingle Bells or another song.... now she just says, "BANANA!!!" when she's in distress... usually from my singing (everyone is a critic!).

Rituals such as these bring comfort to Lulu.  Often they will fade out after awhile, and new ones replace them. Currently she wants us to sing her nursery rhymes from a certain book... the one I wrote about earlier this month. I guess we are replacing the toy?  🤷🏼‍♀️ Unless they are severely impacting her learning, socializing, or are dangerous, we have learned to be patient with her, which is no small feat when the school bus is waiting outside!

Nothing Stays the Same

Thoughts During Autism Acceptance Month. 

(** I wrote the original version of this 9 years ago, but have updated it a bit. **)

So, your kid has autism!  Oh, boy!!  Your friends just don't know what to do...what to say...how to act.  It's not like you do either. You kind of muddle through the first few months, and maybe even the first year, and your friends are appropriately supportive, sometimes in a "trying too hard" kind of way.  Then things slowly start to change.  You don't talk like you used to.   Hanging out gets trickier.  You can chalk it up to your kids are growing up, they have different interests. But basically you have completely different paths. Conversations become fleeting, and finally you just don't have any interactions.  And that's okay.

And it really IS okay.  Thankfully you had some warning about this from a friend whose child had been diagnosed with autism a couple of years before your own.  You knew, in the back of your mind, that some of your friends would kind of fade into the background because you simply wouldn't have time for them (remember the zillions of therapies that start to fill in every second of free time?).  You really try not to let anyone fade...you put forth that more than good faith effort to keep up the lines of communication.  But in the end, you just aren't mentally prepared for certain friends who end up fading.  

So you start to make friends with people who have only known you since "the diagnosis."  You reconnect with people from your past through social media.  They are really genuinely supportive, and in some cases, have turned into your own personal cheerleaders.  Some have wonderful kids with special needs...others have delightfully typical kids.... and some have no kids at all. And that is pretty cool. 

And then there are the times you run into someone that faded. Because you are now fully capable of putting yourself out there to advocate for your child, you find yourself screwing up every ounce of courage you can muster (because you know it will be awkward as hell), smiling and saying hi... only to have the other person look straight through you, as if you weren't even there. You sit in your car and wonder, "did that really just happen?" And then other interactions come with conversations that are brief and pretty awkward, albeit friendly. The hugs you receive are genuine and heartfelt, and you're left with pangs of bittersweetness.

But occasionally you just have to wonder...what the heck happened to those other people?? This happens throughout life, I suppose.  But you will always be grateful for those who stuck by you through to the other side of normal...

And Now a Word from the Peanut Gallery...

Thoughts During Autism Acceptance Month.  

So when you have a child with autism, people don't know what to say or do.  They seem to try to compliment you and/or your child, but often it just seems like a backhanded compliment.   Sometimes statements are made based on stereotypes, and we all know how that can go!! You tend to get a LOT of uncomfortable silences and stares... and consequently you wish you were invisible.  

Basically I just want people to treat me as normally as possible, and I believe that Lulu feels the same...

In any event, I thought I would share some of my "favorites" as far as comments go:

"You wouldn't know she's autistic just by looking at her!"  How about just telling me how CUTE or CLEVER my kid is instead? 

"God doesn't give you what you can't handle."  This statement makes me absolutely crazy.... does it mean that if I were a weaker person, I would not be dealing with autism??  So...PLEASE stop saying that. There is so much involved, and just when you think you have a handle on things, another curveball comes your way.  And then you just go with it the best you can.  It's a matter of just dealing with things as they come up, and trying to contingency plan knowing that something else may go awry.  Each day people are given their own curveballs, and oftentimes it has nothing to do with autism at all.  Most people just deal with whatever it is and move on.  That's simply what I do.

"Oh, I know that chelation therapy/gluten-free diets/jumping out of airplanes/spinning in circles will CURE autism."  I know that these things are said with the best of intentions.  With all due respect, please...just BE. QUIET. I'm already constantly bombarded with information, and it's difficult to sort through it all.  Instead, try suggesting that you have some information that you've researched, and that you'll share it with me if I would like.  It's showing that you care!

"What are your thoughts on the causes of autism?"  Unless you have an idea of where a person stands, or you genuinely want to know, please leave that one alone and say nothing.  Really.  It's such a red-hot soapbox issue, and I will not change my opinion.

"Wow, she's really a handful, I'll bet!"  Yes, she is.  But so is any child.  And quite frankly, I know many adults who are handfuls as well!  LOL.  But seriously, telling me how energetic my child is really leaves me with nothing to say except "yes."  

This is not to say that one cannot bring any of these subjects up...just know your audience first, or possibly just ask me how I'm dealing with it all.  And more than anything, please know that I genuinely feel appreciate knowing that you care!!

Small Progressions

Thoughts During Autism Acceptance Month. 

Today I celebrate small progressions. 

This week is spring break.  Lulu has already had approximately 587.5 OCD episodes. It's been simply maddening for all involved. 

When the OCD isn't running high, one thing she has wanted to do is sit with me and have me read/sing aloud from one of her song books:

I'll point to the words, and she sounds them out a bit. I've lost my voice, so it's challenging, and so Annie has been stepping in, which has been fantastic to watch. The coolest thing about this? Lulu initiated this on her own. Maybe we're on our way to reading independently? 

Realistically I know that this won't happen all of the time. But knowing that it did happen a few times? That's priceless.  

One baby step at a time! Go Lulu!!

What's It Like To Have Autism?

Thoughts During Autism Acceptance Month. The other day someone asked me what it was like to have autism. I'm clearly not able to answer that firsthand, but I did post this a few years ago (I'm not sure who the author is). It more or less lines up with how I imagine it to be.

What is Autism?

 

Imagine if…

You had a bee buzzing around your head

And someone asked you to say the alphabet backwards

 

Imagine if…

You were in the middle of a really loud rock concert

And someone wanted you to name all your aunts and uncles

 

Imagine if…

You were wearing three pairs of gloves.

And someone told you to eat a box of raisins one by one

 

That’s what things are like for me, a lot of the time.

I’m autistic.

 

Your brain is like the inside of a computer, full of connections and wires.

With messages to your body whizzing around telling you what to do

My brain looks the same as yours, except some connections work really well, and some work really differently.

And my brain wires can get crossed really easily.

 

So, if I’m doing something a bit funny looking… try not to laugh at me.

It’s just one of my brain connections clearing itself out.

 

And if I tell you something over and over… just ask me to stop repeating.

It’s just one of my wires plugged into the wrong socket.

And, if I freak out at some sound that you think is really normal… maybe help me get away from the sound.

It’s just because my ears have their own unique volume control.

And, if you think I’m ignoring you… I’m not.

I’m probably just focused on something else, like a tiny spider on the ceiling on the other side of the room.

 

Autism is a different way of seeing the world.

And seeing things the way I see them is awesome, but it makes me really tired sometimes.

 

So, I might not always understand what’s going on.

And, I might need time by myself to thing things through.

Or, I might crash or jump or swing for a while to straighten myself out.

Don’t worry if I don’t always do things the way you do.

Try to imagine what it’s like inside my head, then you’ll see…

 

I’m not being rude

I’m not being naughty

I’m not sick

I’m autistic

And I’m just being me.

Tantrums and Obsessions

Thoughts during Autism Acceptance Month.

There is a misconception that a meltdown is the same as an ordinary temper tantrum. A tantrum is generally driven by a "want" of something and is an attention-seeking behavior, whereas a meltdown generally results from a person who is overwhelmed or overstimulated (sensory overload) and will continue even if attention is not given.

I vividly remember her first full-fledged, out in public, tantrum several years ago. It occurred in Target when we were there working with her behavioral therapist (who is amazing, by the way). Lulu did not get to go to the toy section like she wanted to because we were working on waiting. Screaming, crying, and carrying on ensued, and we left the store (through some physical redirection).  

Lulu was not upset because the lights were flickering or the store was too warm or too cold. She wasn't hungry. There wasn't anything medically wrong with her. Lulu was angry because she was not allowed the immediate gratification of going to the toy section.

To ward off meltdowns, a lot of time is spent contingency planning. I try to guess what she would like and have it ready to give to her, especially if she's going a long distance. Redirection is used quite a bit,  and we also try to give a lot of choices, but sometimes for our own sanities, battles must be picked and giving in will win over. But giving in can't happen too often, because she's smart and forgets nothing. She knows that if we give in once, she will just have to keep at it long enough, and then we'll give in again. 

Lately the OCD has ramped up to a MACH 20. Lulu obsesses over things seemingly at the drop of a hat. She is unforgiving if we cannot produce what she wants immediately. If it's something she's had but lost, she'll overturn the entire house, flipping couch cushions, emptying drawers and shelves, throwing stuff wherever. She will incessantly ask for said item over and over until you just want to scream. She's even gotten crafty enough to steal your phone and try to order it online. 

Lulu also obsesses over things she sees on YouTube, thanks to everyone and their brother making videos of people playing with toys (WHY. IS. THIS. A. THING?!?) If you try to order it, it's often no longer made, so you are at the mercy of eBay, or private sellers on Amazon, who jack up the prices.... because autism isn't expensive enough already.  

It is, in a word, exhausting. 

But you keep going, because what else can you do?

One of those little MP3 players, but not that one, is the object of her obsession lately. 

National Siblings Day

Thoughts During Autism Acceptance Month.  

I love that National Siblings Day falls during Autism Acceptance Month. Cheers to Annie and Lulu.  You both have a tough road, but you travel it together, and handle it with grace, humor, and sometimes just a little brute force...

Interactions

Thoughts during Autism Acceptance Month 

Today has me thinking about how we interact with one another.  A lot of how we relate to people is from watching other people interact with each other, repeated exposure, learning from our mistakes, and reading body language.  It is quite a process when you think about it.

People who are on the autism spectrum tend to have a lot of difficulty with interacting and relating to others.  These are skills that must be learned, and it can be quite arduous.  Many autism programs have social skills as the main part of their curriculum.  Some kids on the spectrum are able to be integrated into the regular curriculum classes.  And if you are fortunate enough to live in an area where they have social skills groups/classes outside of the school setting, you can have your child participate.  

Often it is up to the parents of the autistic child to arrange for opportunities to socialize. For example, before COVID, we have had Lulu participate in Girl Scouts, special needs soccer, Special Olympics swimming, and sometimes the after school programs at her elementary school.  We have tried to have play dates with both her schoolmates and with neuro-typical friends. At each event we don't force her involvement the entire time...instead we try to have her do something little, like simply eat snack with the other kids, say hi to someone, or sing along with the group.  Little by little we are making progress...each time she participates a little longer.  It helps that people try to understand what we want to accomplish with her.  

So don't be afraid to try to talk to someone who has autism or who has a child with autism, or to arrange for a play date for your neuro-typical child and the autistic child in his/her class. You are helping out far more than you may realize, and plus, you never know what all of you may learn!

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!