Neurology Is Not My Best Topic

It took me five years to get a BA in Clinical Psychology- I changed majors, schools and had my boys. I didn’t take a neuropsychology class.

I had a mini-stroke in 2013- a migraine went really bad. Afterward, I started having migraines, which are absolutely zero fun. They make me sleepy, cranky, nauseated and for some reason, crave sour candy.

I’ve worked with kids with developmental disabilities and have an autistic kid.

And yet, I know nothing about neurology.

Until a couple of days ago, I also didn’t know what could be going on with Lily.

If you need a refresher, please read these posts:

Special Needs Round Two

Back to the Beginning

She’s currently in Occupational Therapy (OT) and seeing a dietician. Both have been extremely helpful. I was looking into getting her a full neuropsychological evaluation, like Julian had in 2011, but most places are full or aren’t taking new patients right now, because you know, there’s a global pandemic going around.

Plus, her insurance doesn’t cover a penny of what will be a very expensive evaluation.

She’s worth it, but honestly, I decided to sit on this idea until things get back to some sort of normal.

A Crash Course in Reflexes

A couple of days ago, Lily’s OT, Amy, tested her reflexes.

She tested positive for retained STNR reflex, and all I could say was “What is that?”

I’m not afraid to say that I don’t know something, because how else am I going to learn? In this case, I felt (and still feel) that I was way out of my knowledge base. We thought maybe severe anxiety and avoidance behaviors, she was even tested for ADD, which she does have.

Amy explained it to me in a simple way- there’s a reflex that babies develop between 6 and 9 months old. It should resolve before the first birthday. This reflex makes the top and bottom parts of our bodies work in sync to move efficiently. If the reflex isn’t resolved, this can lead to some developmental delays. For example, when you learn to swim, your arms and legs have to work together to do so.

Those who have a retained STNR reflex can’t swim well because they can’t get their body to work together at the same time. It’s a neurological issue that can’t be medicated. Lily will need OT for a while, and at some point, we hope that she can learn to ride a bike and other independent activities.

There’s a connection to ADD/ADHD for this, so it makes a lot of sense to me. It explains a lot of Lily’s issues and now I can somewhat meet her where she is.

On the outside, she’s a regular 12-year-old. She loves clothes, jewelry, blankets and boy bands (ugh). However, the way her brain works is different from a lot of other kids her age- she’s socially and emotionally immature, has core and muscle weaknesses, and of course, issues with coordination.

I am not sure what this means for 7th grade for her- she may or may not qualify for an IEP. She may need an evaluation through the school to do so. I’m also not sure if she will be able to live on her own without assistance. I have no idea.

She’s 12, but I have to think about her future. I may need to become her guardian when she turns 18. It’s a lot to think about and writing this post is helping me process it.

I wish there was more that I could do besides taking her to OT. As far as I’ve seen, there isn’t much anyone can do besides help her resolve this reflex and since I’m not an occupational therapist, I can only follow Amy’s recommendations.

I read up a bit on this and some of it went way over my head! I think I understand the important parts. We have answers, or the beginning of them, and that’s what matters.

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 behavior health technician, 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

Looking At the Bright Side

A Dark Day Brings Light

November 23, 2011, was a dark day at my house, but yet it brought a lot of light to my mind. That is the day Julian was diagnosed with ADHD (combined) and traits of Asperger’s Syndrome. (This was later amended to a full diagnosis and he is now considered to be on the autism spectrum because Asperger’s was removed from the DSM-V.)

Autism meme

It brought tears and peace at the same time. I finally had answers to so many questions. I wasn’t a bad mom, there was actually a reason he was doing all these things.

I finally had tools to help him. I could help him calm himself so he wouldn’t throw toys, hit his siblings or myself. I might even get dinner done on time some nights instead of stopping to deal with Julian’s meltdowns.

Losing Perspective

Somewhere in the middle of trying behavior charts, evaluations and basically bribing Julian to act appropriately, I’d forgotten the good things about him. He did have those, like every other kid.

Don't say sorry

For example, Julian is so intelligent. For the most part, he’s always done well in math and science. He hates reading.

There is a bright side to having a kid with special needs. It changes you in ways you never thought possible. You may have learn a lot about the diagnosis (or more than one), but you’ll be able to spread awareness about it. I’ve become very vocal about ADHD and autism.

You can read my thoughts on the vaccination/autism debate in this post:

The Autism/Vaccine Debate

I’ve walked for a local organization for families of children with autism. I worked with kids with autism for almost five years, and I loved it. It makes it easier for me to deal with the struggles.

I know I’m far from alone because there are many families that have the same day to day issues that I do. This includes some of my friends.
I’ve learned that you have to be a different parent for each kid.

What works for Lily may not work for Julian. Cameron responds a lot differently to things than his siblings. We have had to adjust to Julian’s quirks and needs and become a lot more creative and open-minded. I’ve had to think on my feet a lot and outside the box a lot more.

Learning to Adjust

I never really went through the stage that some parents do in which they grieve what they imagined what their child would be able to do. Julian will still have a full life- he will just have a few bumps along the way.

Swing
We are able to see the world through a different lens with Julian- slightly narrowed thinking, a dry sense of humor, ability to help with or without asking- he loves to help his dad and grandfather do “big guy stuff”. He does show emotions, but we are still working on empathy.

I have become tougher. I don’t see this as a terrible thing. I’ve learned to fight for what Julian needs and I will do that until he can do it on his own. I won’t let him be in the world on his own without knowing how to get help if he needs it and without the skills, he needs to navigate his issues.

We do have bad days as parents, with or without special needs kids. Looking at the bright side can help bring our focus back to the positivity around us- our kids.

Teens and Sleep: How Much Do They Need?

As adults, many of us love to sleep. I’m one of those adults. I need my sleep. I must get as much sleep as possible so that I don’t run into issues with migraines, an RA flare or both. One of my migraine triggers is lack of sleep- if I don’t sleep well for 2-3 days, I’ll likely have a migraine the next day.

I’ll pass.

Sleep is also important if I’m in a flare. It’s usually all I want to do and even if I am awake, it’s not like I feel as if I have fully awakened. While we are asleep, certain brain activity and bodily functions occur.

Teens are in a constant state of growth. They eat and sleep a lot. I refer to Cameron as a sloth quite often- he spent most of summer break sleeping and likes to take a nap every day after school.

Sloth

How Much Sleep Do They Need?

Teens aren’t babies anymore, so they need a bit less than 16 or so hours, but yet need more than the 7-9 hours that adults require. They don’t like early bedtimes, so that’s always a debate. According to The Sleep Foundation, sleep patterns change during these years. It’s entirely possible for teens to not naturally be ready to go to sleep until 11 PM, sometimes later, depending on the teen.

Most teens need somewhere between 8-10 hours of sleep a night but aren’t getting it. Some are only getting about 8.5 hours of sleep a night. That’s 1.5 hours of lost sleep. Many teens sleep in on weekends, which can affect their internal clocks during the week. Others may suffer from unknown sleep disorders like restless leg syndrome, sleep apnea, insomnia, and even narcolepsy.

A note for parents of teens with special needs: It can be difficult for your child to sleep even 8 hours a night, as autism, ADHD and other diagnoses can cause sleep issues. It may help to discuss any sleeping issues with your child’s pediatrician and/or other specialists to find what may be helpful. What works for one teen may not work for another.

Medication may be needed to help your child sleep and this is an option that many parents use, myself included. Please follow all directions of the medications and the prescribing doctor.

Sleeping

What Happens if Your Teen Doesn’t Get Enough Sleep?

Much like younger children, teens can be a bit crabby if they don’t get enough sleep. They can have issues with concentrating in class, at work, or other activities. This can get really dangerous if they can drive. Driving while tired can lead to crashes and/or other behaviors.

Some teens can become more aggressive, and in teens with behavioral/emotional issues, this can be one of the first things looked at when behaviors become more intense. Has the teen been sleeping well? Less aggressive behaviors include impatience with and yelling at others. I’ve seen kids that didn’t sleep well act out because they didn’t have the energy to better regulate their issues.

Skin and eating issues are common in teens that don’t get enough sleep. Breakouts are more frequent and much like adults, teens may be more likely to eat more sweet and fried foods and drink more caffeinated drinks.

Solutions for Sleep

Sleep is important- if your teen needs a new routine to make sure they get enough sleep, you may be able to start with these tips.

  • Naps. Naps can be beneficial, but naps that are too close to bedtime or too long can create a negative effect. 15-30 minutes can be helpful.
  • Create a sleepy environment. Some people love eyeshades or dark curtains. Cool temperatures can help your teen sleep better.
  • Work towards a consistent bedtime. A consistent sleep schedule will help your teen feel less tired because their body will get in sync with natural patterns. On the weekends, try to stick to the times as close as possible.
  • Turn off electronics at least an hour before bedtime. Most teens will not like this idea, but it will help their brains shut down.

Teens are going through a lot as it is- acne, dating, parents, school and so much more. Sleep is one thing we can definitely help them with.

Another note for special needs parents: Your teen may need a specific routine to help soothe them into sleep- calming music, lights, sensory items, etc. Knowing what your child needs is important in this aspect. Please consult your child’s pediatrician if you need more guidance.

Pictures courtesy of Unsplash

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”.

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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.

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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.

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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.