Thirteen Years of Adventure

Three kids provide a lot of memories.

My middle child and youngest son, Julian, is thirteen today. That makes two teen boys..yikes.

He’s taller than me, his voice has changed and eighth grade is coming fast. But yet, he’s still funny, curious and so smart.

As a baby, Julian was so chill that we called him “the Buddha baby”. He grew and so did his heart. His hugs practically choked you if he hugged you around the neck and he gave the best kisses.

Little Guy, Big Changes

Thanks to the onset of autism and ADHD, I don’t remember the last time he hugged me. I won’t lie, I miss his hugs. He wouldn’t hug me or anyone else if you paid him…well, maybe. Depends on the amount. He knows that if he needs a hug, I will always have one for him.

Four wheel pic

Raising Julian has taught me so much about myself, as a special needs child will do. I’ve read books, sat through evaluations and agonized over medications. I’ve cried so hard my eyes swelled from fighting with Matthew over what to do.

We have had great victories, like Julian finally trying new foods, graduating fifth grade, and him making friends. That was a huge one. I literally felt relief all over my body the first time I dropped him off at a friend’s house. He’s tried things that he was scared of, which is big.

Julian is a third of my heart, one of the best things that will ever happen to me. The years have a way of flying by and I have no idea where they went.

Baseball pic

He’s into video games, his bike and watching YouTube. Prank videos are his jam. It fits his personality, because he loves to joke and pull pranks on people. His day is made if he scares someone. Halloween is one if his favorite days of the year, but he doesn’t care about a costume.

Here we go into thirteen…I hope we both come out in one piece!

How did you adjust to teens?

More posts about Julian:

Livng With an Energizer Bunny

My Fearless Leader

A Morning Walk for Autism

Living with an Energizer Bunny

Autism.

If you have a child with autism and/or ADHD, you may understand why I gave this post the title it has.

Whew!!

I’ve often joked about bottling Julian’s energy and selling it, but if I really did, I’d be a wealthy woman. It’s more than what you can find in a can of Monster. (He’s not allowed to have those or any other caffeine, because, honestly, he doesn’t need the boost.)

Like most kids with his diagnoses, Julian wakes up early, school or not, and is ready for the day. The rest of us are a bit slower to get up. He’s learned not to bother anyone, so he usually watches TV or grabs breakfast.

“Just because you’re up doesn’t mean the rest of us have to be.”- me to Julian one morning after he woke me up far too early and I was NOT happy. This has become a rule.

Thanks to his medication, he’s not running all over the place or getting into a ton of trouble. He’s almost 13, so that helps. Julian’s definitely full of energy and is up for a lot of things- you just have to ask him.

I do wonder, however, how he just.keeps.going.

I could NEVER.

I’m done for the day by 8, earlier if it’s been a busy day..RA fatigue for the win. Even with thyroid meds that are very well managed and RA meds that work wonderfully, I still don’t have half the energy this kid has.

I do admire his curiosity and ability to get into interesting situations. I just need him to slow down a bit.

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“>bloggy moms July 2019 blog hop

A Morning Walk for Autism

Every June, a local autism based organization, FEAT (Families for Effective Autism Treatment) holds a 5k run/1-mile walk.

The registration fee raises money for classes and other things to help kids with autism around the city. There are booths at the walk from nearby businesses and first responders show up. They talk to kids and parents about safety tips.

You can guess which option I choose, right? I don’t run. I’ve never been a runner but I have friends who are very passionate about it and I am thrilled for them.

I’m a big girl on top (sports bras are not fun to buy) and not with these joints. I wouldn’t make it to the bottom of my driveway, much less just over three miles.

80’s Music and Water

I require lots of water and music to walk and this one had both. I love 80’s music and I even turned off the very interesting podcast I was listening to so I could hear it.

I got there a bit early because the parking gets packed about an hour before the walk starts. I didn’t want to get stuck way in the back like I did last year. Julian and I got stuck walking for almost twenty minutes trying to find my car and neither of us was happy. This year I got lucky and found a great spot.

The walk offers shuttles from the parking lot to the starting point because it is a bit of a walk. I guess it’s so you don’t tire yourself out before the walk starts? I took one there and back.

Mom’s Solitary Walk

Julian decided he didn’t want to walk this year. He was sleeping when I left but was awake when I got home.

I lined up with hundreds of other people and completed the walk in less than 20 minutes. While I walked, I listened to Lizzo and other artists. I didn’t mind the time to myself.

Mom needs time to herself, especially with the school about to be over.

I stopped to look at a couple of booths before leaving the walk.

Finish line pic

I made it to the finish line!

Teal ribbon

My pretty ribbon

Every walker got a ribbon, and they give the kids toys along the way. I went home, took Lily to a birthday party and lay down for a while. I had to recharge.

A Small Reflection

I’ve done this walk off and on since 2013. I have walked as part of a team for the hospital I used to work for, then with a friend who also has a son with autism (his brother had baseball championships so they missed it this year) and with my family.

Matthew and the kids decided not to walk any more after the year Lily gave out at mile two and we had to carry her to the end. Last year, it was just Julian and I. He had more fun than he wanted to confess to.

I have a deep passion for those with autism, especially kids. They’re great to work with- just be ready for an adventure.

Do you participate in any walks or other awareness activities?

Recommended Reading:

To see pics from last year’s FEAT walk: My Fearless Leader

Book Review: The Spark

Real Stories of a (Former) Mental Health Worker

Note: There is this gorgeous law (HIPAA) that prevents me from using real names in this post, and so I will use an asterisk when needed to indicate that names were changed. I will also not use the actual names of the facilities I worked at for similar reasons, because I’m not trying to get sued. I’m a blogger and stay at home mom, not a millionaire.

This month is Mental Health Awareness Month. This post is dedicated to my former co-workers (especially my Resource Team friends) and mental health professionals everywhere.

It’s a rough profession and deserves a lot more respect than it gets. It’s also very rewarding, which is one of the many reasons why I am glad that I chose psychology as my field of work.

A Few Definitions

I know not everyone understands these terms, so here are some definitions to help you out a bit:

Mental Health Technician/Mental Health Worker/Mental Health Associate: these are all pretty much the same, depending on where you work. I’ve been called all three.

1:1: a patient that requiring someone is with them at all times, whether they are asleep or not, sometimes both. This can get very tedious, and sometimes you have to stay within arms’ reach of the patient for safety reasons.

Code: this is not the code you see on TV. This code is for physical backup when things get out of hand, mainly when a patient is being aggressive, destructive or a combo. These are called for a variety of reasons, but these are the two most common ones.

Resource Team- an amazing team of people trained to work on every inpatient unit in a mental health facility. They are responsible for knowing everything about all the units, and they catch hell for messing up. It’s a great team to be a part of because they stick together and you never know what will happen next or where you will be. It’s also very stressful.

Checks/Rounds: ensuring patient safety by visualizing patients every 15 minutes.

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(I’ve seen C.Diff, and it’s ugly, especially in non-verbal kids. YIKES)

Let me set up the story for you…

In June 2007, Spalding University granted me a Bachelor of Arts in Clinical Psychology. Many don’t know this unless you ask, see it in my author bio or on my resume.

It took me five years, a change in major (my first major was in apparel design and merchandising- fancy wording for fashion design), school and two kids, but I finally graduated. I also completed a mandatory 100-hour practicum.

I was not prepared for my first job out of college. I had gotten a job as a Mental Health Technician at *Clear Lake Hospital and I was a bit nervous but ready to start my career.

I started the week after I finished classes. (I walked June 2, but still to finish my last class, which was sheer torture.) I did fine in orientation but was not happy when I found out that I was placed on the geriatric unit.

What? This facility didn’t let you pick what unit you went to, but I had hoped I wasn’t going to get put on a unit I didn’t like. I was not thrilled about being placed on this unit, known as the *Willow Tree Unit. I wanted to transfer immediately, but there was a policy preventing me from doing so for 6 months. I decided to wait it out.

Two months into that wait, I discovered that I was pregnant with Lily. My OB/GYN told me that I would be better off where I was because the pregnancy was not an easy one from the beginning.

A different unit would be a faster pace and could result in more issues with my pregnancy. I decided to stay put so that Lily would have a better chance of being okay. I ended up liking the *Willow Tree Unit.

The staff was nice- I was the youngest tech on first shift. Once word got around that I was pregnant, the nurses and other techs took care of me.

One afternoon, my shoes became untied and I couldn’t reach them because my belly was huge. I burst into tears and one of my fellow techs tied them for me. She understood the struggle- she’d been in my spot two years before.

I didn’t get to finish out the pregnancy on that unit- I went into preterm labor at 31 weeks (on Cameron’s 3rd birthday, of all days) and my OB/GYN told me that I would have to stop working or go on light duty, basically a desk job.

I chose the desk job because we needed the money. I went to medical records for all of five weeks or so. The ladies there were nice and began a betting pool on when Lily would show up. Lily shares a birthday with one of the ladies in the office, which everyone found hilarious.

Thanks to Kentucky state budget cuts, the *Willow Tree Unit was closed down while I was on light duty, and when I came back from maternity leave, I was sent to an acute care unit. I was better suited for that unit and stayed there until I left in June 2008 for a counseling position in Indiana.

The Real Fun Begins

In late 2010, I was ready for a new and closer to home position. I found another Mental Health Worker position at *MidRiver Regional Hospital. This time, I was able to pick where I wanted to go, because it was in the application. I would be on the Resource Team. It sounded very interesting and kind of fun.

I was absolutely right. Orientation was a bit boring- but that’s where I met Josh (Jake’s older brother) so I call that a win. I had to shadow for a couple of weeks on each unit- a couple of days with another worker, and then I was unleashed.

The very first day was a day that is forever etched in my mind- I was on *2West, a unit that was then used for kids from 12-18 with autism and other developmental disabilities. It was super loud, wild and some of the kids were way bigger than me.

What did I sign up for?

I took a huge deep breath, looked at my assignment sheet and kept going.

I spent two years on the Resource Team. It was a lot of fun- full of laughs, friends, and a few mishaps. I’ve run after people that eloped, including one that I chased across a busy street along with another worker. The kid ran off at a hospital and we did catch her. I’ve been punched in the head. I even caught a stereo cord to the face.

I was with a 1:1 and the patient was very upset about her Justin Beiber CD was repeatedly skipping. I told her that maybe it was time to try a different activity, and tried to unplug the stereo. She picked it up, then dropped it, and when I went to pick it up, she hit me in the face with the cord.

A code was immediately called and I was taken off the floor. I was taken to the main nursing office to get my face looked at.

I called Matthew to get me from work, and he took me to a nearby hospital- I ended up with three liquid stitches. You can barely see the scar today. I took the next day off because my eye was so swollen that I had a hard time seeing out of it, and let me tell you, tetanus shots are not fun.

As for the patient, she was so upset when she found out what happened to me, she became hysterical. I was one of her favorite staff members. She had to be medicated to calm down. She apologized the next time she saw me.

While I was working at this facility, things were not that great at home. Julian wasn’t diagnosed until late 2011. I was struggling a lot internally with both anxiety and depression. You can read about those events in A Letter to my Anxiety and Depression and Looking At the Bright Side

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I was able to lose myself in my work. I loved being able to help others and work with great people. We had a lot of fun on the good days and on the not so good days, pull together and make things work. That, to me, is the definition of teamwork.

In March 2013, I had a mini-stroke. My neurologist suggested afterward that I needed to start looking for ways to lessen or eliminate stress in my life. By this point, I was ready to leave the Resource Team- it was getting too stressful for me. Some people leave after months, some people stay the entire time they are at the facility.

I started thinking about which unit would be a good fit. I was pretty much done with adults- that was where the bulk of my work had been, and I needed something different. I had realized that I really enjoyed the kids on *2West and the staff was great.

I’d volunteer to go there when other people didn’t want to go- it was a rough unit. I didn’t really enjoy cleaning poop off walls (who does? I can’t make this up, it really happens) but it had become my favorite unit.

It took a few months of waiting, but a position opened up. By then, I had met Jake, and that was his home unit. I applied, interviewed and got the full-time Mental Health Associate position. My Resource Team friends were sad to see me go (my friend Scott begged me not to go), but they were not surprised to hear where I was going.

It turns out that going to *2West was the best career move I’ve ever made. I loved it. Those kids were not always the easiest to work with- I’ve been kicked in the eye, had my hair pulled out in clumps, broken my big left toe twice and in the same way. It still doesn’t bend correctly. I’ve seen all kinds of naked kids. I’ve left work scratched and bruised from multiple holds. I’ve gotten sick from these kids- strep throat can go through 20 kids fast.

I also learned a lot- how to sign (some), how to learn about a kid even when they are non-verbal. I learned that some families are worse than you can imagine and even the ones that look great are horrible.

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Autism is not seen as often in girls, but when it is, it tends to be severe. One of my favorite kids was a tall, thin girl named *Michelle. She was a runner and I got lots of exercise running after her in the halls. She was also non-verbal but showed her feelings by squeezing your hands.

She squeezed my hands every day to say “hello” and “goodbye” but if she was angry, she would pull on your arms while squeezing your hands. She was so much fun to work with. When she left, she bent down to hug me goodbye, and both *Claire (her behavior analyst) and I cried. That’s a very unusual thing.

Taylor Swift sing-a-longs were a regular thing and so were movie days on the weekends. We tried to make things as fun as we could for the kids. We took them outside and let them play as much as they were able to on the playground. We got the kids out of bed, fed them, got them through their days and back into bed- for some of them, we were more of a family to them than their own.

*Mason was a kid who saw us exactly like that. I met him while doing checks and he was in the shower singing “Baby Got Back”. He was hilarious, and once beatboxed to me about needing toothpaste.

However, he came from a family that didn’t treat him well, which contributed to some of the reasons he came to the facility. Once, I was planning an outing with another associate, and he asked us to take him and the other patients to a strip club. That did not happen, but we laughed hysterically after he left the room.

These kids were so funny, smart in their own way. I couldn’t have asked for better co-workers. Some days entirely sucked, but it was still a fun adventure. My last day there was September 2, 2015. I left after being told about Jake’s death, and I came back two days later to get my things and leave my nurse manager a note telling her I wouldn’t be back.

I couldn’t write this post without mentioning Jake, Austin, Scott (not the one mentioned earlier), Cisco or Colleen. I lost these co-workers while working with them or after and each loss was a bad one. They left behind families that loved them and patients that they touched. They worked hard (Cisco got electrocuted trying to keep a patient safe) and had a lot of love for their patients.

I’m retired from this line of work- thanks to my RA diagnosis. My rheumatologist would go ballistic. I am left with so many memories and friends. That’s what work and life are all about.

All pics are my personal pics except for one pin on my Pinterest board. Pinterest

My Fearless Leader

There’s a common saying in the autism parenting community that I love: “Autism is a journey I never planned but I sure do love my tour guide.”

In honor of Autism Awareness Month, this post is for Julian. He is now 12, almost as tall as me, and is still my lookalike. Most of all, he is what his psychiatric nurse practitioner calls “well-loved”.

Firetruck pic

In a firetruck at the 2018 FEAT Autism Walk

Back to the Beginning

When he was five, I had no idea what we were in for. I just knew that he needed me and more help than I could give him. I doubted myself so much because even with all of my knowledge and work, I still couldn’t manage him.

I dreaded going out in public because it was a risk- he was a runner. What if he ran off? What if he had a meltdown? His meltdowns were loud and lasted at least a half hour. I made my trips as short as possible. I went out alone when I could so I didn’t have to worry about chasing a very fast kid.

School was a tougher topic. He struggled to sit through kindergarten and didn’t like his teacher but loved her assistant. Even after his ADHD and autism diagnosis and medication, he continued to stay away from his peers. He remained quiet, barely speaking to anyone. Julian was in his own world, both at home and at school.

It turns out that’s a personality trait- he is my quietest child. He won’t talk to people he doesn’t know and needs prompting sometimes to speak to those he does. Eye contact is non-existent and I don’t force it. As long as I see that he’s looking at my face, I know he is listening.

The Road to Now

Julian has spent a lot of his childhood in therapy. He started with a social worker in 2013, a psychiatrist, who recommended group therapy while he was in third grade, and now he sees Ann, his nurse practitioner, once a month.

Group therapy helped more than anything else. I had to pay out of pocket for it because insurance wouldn’t cover it.

I didn’t care.

It was worth every penny. He learned skills that he can use for the rest of his life- sharing, talking about himself in a group, handling challenging emotions, and other topics.

Julian struggles with empathy, even after that was a theme in the group. We work on this a lot. He may say something that hurts another person’s feelings but doesn’t get why.

I explain to him why what he said was not so nice and that he needs to think things out a bit more before speaking (hilarious for me to say that because I am the wrong parent for this) and apologize. Sometimes this works, sometimes I lose him.

Julian also developed a sense of humor. For a while, we weren’t sure if he had one. He didn’t get sarcasm and was so serious. I had to explain jokes to him.

He has been fearless pretty much since he could walk. There have been incidents that resulted in broken bones, staples, stitches and other assorted injuries. None of these things stopped him. As he’s gotten a little older, he has learned to hesitate a little, but he’s still the first to get into something.

Birthday pic

Eating his 4th birthday cake with a cast

Humor finally hit him and I was thrilled. His humor is dry but we appreciate it. Sarcasm is still not a thing for him but it’s not for everyone.

Julian thinks in incredibly concrete ways. He eats certain foods (pretzels are life) in a certain way. He thinks things should happen in a particular order and doesn’t always get why it doesn’t happen like he thinks it should.

However, he’s very smart. Seventh grade has gone well- his IEP focuses on his handwriting (it needs improvement) along with other goals. His grades are good and his best subjects are math and science. He’s always been talented in those subjects.

In many ways, Julian is like most 12-year-olds- he loves playing on his Xbox 360 and riding his bike. He thinks the prank videos on YouTube are the funniest things he’s ever seen. There are just a few quirks involved.

I’m Not an Expert

I read a lot about autism. I worked with kids all over the spectrum for almost five years. I’ve been injured in the process but loved the work. It truly changes you and how you see the world.

Still, I am not an expert. I do not know what it is like to be Julian. I do not know what it is like to be in the lunchroom full of noisy kids and have to block it out so you can eat and try to talk to your friends. I do not know what it feels like to be super bored for a minute or two in class but yet, it feels like forever.

I do, however, know the feeling of wanting to hug a wonderful child who won’t let me because he hates the feeling. I know exactly how it feels to watch your child yell loudly over the shape of pasta because it’s not the right one. This has happened, but not in years.

I’ve often wanted to take a trip inside Julian’s mind, but I know this is impossible. Since I can’t, I try hard to remember where he is and help him through his needs. We don’t let him have everything he wants, because that simply isn’t how the world works. We do, however, make accommodations when we can.

Julian has been an adventure to raise. The road has been a bit bumpy but I will stay with him forever.

Therapy pic

Yay! He finished therapy (2015)

If you are the parent/caregiver of a special needs child, how has the path been for you? Please share in the comments.