I’m a day late but Christmas and the new job announcement got in my way..
Many parents, myself included, envision parenting as this wonderful adventure in which kids develop at the pace they should, play instruments and/or sports, learn to drive, go to prom and all that great stuff.
But what happens when those things are altered because of a special needs diagnosis?
Some parents find out about their child’s diagnosis before or right after birth, in cases of Spinal Bifida, Cerebral Palsy and Down’s Syndrome. I know parents of kids with these diagnoses, and it has been life changing for these families. All of them have other kids without any special needs.
The adjustment is hard. I cried my way through Lily’s evaluation for First Steps the day before her first birthday, even though I knew something was not going right. I knew she needed more help than what I could give her. That story can be found in Special Needs Round Two . When her diagnosis of global delays was given, I was even more devastated. The blame game began. It took a lot of talking with Lily’s speech therapist, Denise, to realize that it wasn’t my fault that she was developmentally delayed. We are in the process of getting Lily re-evaluated. At ten, she is still showing signs of issues that we thought she had grown out of. Cross your fingers for us- we may need it.
In Julian’s case, it’s been a tougher road. His psychiatric nurse practitioner, Ann, once said that we have adjusted wonderfully as a family to Julian’s needs. I almost hugged her. I explained to her that it has not been easy and it remains a somewhat rugged path. My question is: Why not adjust? Julian is wired differently and that’s okay. If we didn’t adjust, he would feel badly about himself and I couldn’t bear the thought of this. It would also cause so much chaos for him that he doesn’t need or deserve. It would do the same for the rest of us. Why do that?
He needs the ability to feel okay about who he is, quirks and all. We’ve enjoyed watching him grow and finally develop a sense of humor. Every kid needs that, with or without a diagnosis. In a home with medical issues, this is a necessity.
I have made many mistakes in raising Julian (and his siblings). Even after reading up, trying many different things, therapy for both of us, getting Matthew on board and lots of burnt dinners in the process, things remain interesting. Julian is now 12 and puberty is kicking in.
Learning that your child has a medical and/or physical special needs diagnosis is complex. Some parents grieve the life they feel their child “should have had”. This is a rough one for me, as I’ve never done this. I can see this happening with kids with severe medical problems. A high school friend of mine has a child with spinal bifida and she lives a full life. Instead of being devastated and staying in a hole as some might, Shelly and her kids go out and do all kinds of neat things. Ryan is eight, and she is one of the coolest kids ever. She’s a tiny fighter. Some parents, like myself, are devastated and are not sure where to go next. Some fall into the “research pattern” and find all kinds of information to know exactly what to do.
This can be a great thing- I have read up a lot on Julian’s diagnoses and it didn’t hurt to work with kids with similar issues. (It did physically hurt some days, but that’s another story. I learned a lot from that job.) Some parents, sadly, go into denial. This can be damaging to everyone involved, and I highly recommend seeing a therapist, church member, or another trusted person. If it’s your partner, this can get really bad quickly, and I definitely know the pain of where it can go. Please do what you can to change that path. Talking can help. Easing your partner into information, appointments, and other things can help. Just don’t force them, because that can make things worse.
I recommend reading up, asking questions, and getting all the help from the medical community you can. The more information you have, the more empowered you feel to help your child. Julian’s been very lucky- he has had a great team from day one, because I wouldn’t let him have anything less. I’m a proud mama shark.
It’s okay to feel different things- don’t let anyone make you feel different. Julian was diagnosed almost seven years ago, and some days I still feel overwhelmed. As of writing this post, I’m about to battle it out with his school over his IEP because it’s currently not being followed. Some days are better than others. Some days are absolutely great, some are so bad that you want to devour a liter of Cherry Coke, a bag of salt and vinegar chips and call it a day. (Okay, maybe that’s just me. I didn’t do all of that, but I considered it.) If you’re overwhelmed, write it out. Get someone to help you sort out your feelings.
Daily life also changes. Depending on the diagnosis, your child may need assistance with everything, or nothing at all. This can become time-consuming and require an overhaul of your routine as you knew it. Food may need to be altered due to sensory issues- I live in a house with two kids with sensory issues, and I gave up on those battles years ago. Julian won’t eat french fries if he can see the potato skins or if they aren’t super warm. Lily won’t eat anything that resembles soup, any pasta that isn’t spaghetti, mainly because it looks different. Julian actually had a meltdown once over the shape of pasta my father in law used for dinner. These changes can be irritating to make, but they are necessary for the world our kids live in. I’ve learned to look inside Julian’s mind a bit, probably because of my work, and try to see the world as he does. It can get hard, but it’s worth it. Explaining this to others can get even harder, even your partner.
It takes time to adjust- it won’t happen overnight. It takes time to learn how your child’s machines work, or how to get the wheelchair to fit in your van. Give yourself space to make those mistakes. I completely screwed up Julian’s 12th birthday party by inviting too many people, which cause him to shut down at the end, but I’m pretty sure he still likes me. He used to get mad at me when I would hold onto him with a death grip in parking lots and large stores, but he had a bad record of eloping. It was terrifying to have to run after a very fast 5 year old, especially in a parking lot. He was seven before I let him walk more than a foot or two away from me. (I never used a leash because I hate those things.)
If you’ve got a kid who takes things literally, you have to change how you talk to them. For example, I once told Julian to drop the jar of jelly he was holding after he was told not to eat anything. I was making dinner and he didn’t need to eat so soon before.
He dropped the jar.
Major mom fail.
Thankfully, the jar was plastic. That would have been an awful mess otherwise. Matthew and I have had to re-think things before we say them, because Julian thinks differently, and so does Lily, to an extent. We are still trying to figure out her thought patterns. She doesn’t quite think on a 10-year-old level, so we have to tread carefully.
If you have to buy things to keep your house, kid and car safe, do it. You’ll thank yourself later.
It really does take a village. I have friends that have kids with all kinds of physical/ developmental disabilities. A few have kids with autism, and they have been so helpful when I’ve needed them.
Being a parent of a special needs kid will make you a different person. I’ve fought for Julian since day one. Lily’s issues haven’t required so much of a fight, but I would do the same for her. It makes you tougher and less likely to take people’s crap.
Breathe and find something that makes you laugh. Comedy will get you through anything.
Get a binder and organize all of your kid’s paperwork. Julian and Lily have their own binders.
You are not alone, and get help if you need it. Take time for you, because your kids need Mom at her best. If you’re tired, sad and cranky, that’s not your best.
If you have other kids, let them be involved in adjustments. It’s not easy to be the sibling of a special needs kid. My kids have been pretty good about Julian, but it can get hard for us as parents. Cameron and Lily have a post about this in The Siblings’ Turn
Allow your child to live their best life. If they can do it- let them. My friend Laura Leigh’s son, Levi, is seven. He is in a wheelchair due to Cerebral Palsy, and he is an awesome kid. He smiles for days, gives his younger sister Presley wheelchair rides and loves school. I let Julian run cross country in the fifth grade and he loved it. We have a rule that his diagnoses aren’t excuses for not behaving. He does have bad days, but he doesn’t get to say, “I’ve got autism, so I get to act like that”, “I forgot my ADHD meds, that’s why I’m like this today”.
Most of all, love and accept your child the way they are. It might sound weird that I wrote that, but it is saddening that many parents don’t. Acceptance and love matters- it’s everything.
Quotes courtesy of Pinterest
Recommended Reading: The Spark: A Mother’s Story of Nurturing Genius
Being kind to yourself is a bit more complicated than it sounds. You don’t always have to buy nice things for yourself or take trips in order to reach this goal, but those things are great. There is a bit more to it.
Take a look inward. Are you often critical of yourself? I struggle with this a lot. I have to remind myself that people aren’t always out to hurt me or bring me down. There’s lots of self-talk involved daily. Thanks to therapy, that has improved. It didn’t happen overnight- it took months. It takes time to reset the thoughts that have spent years going through your mind. Change isn’t easy. Nobody’s perfect. Those changes have to start as small ones, otherwise, you’re setting yourself up for disappointment. Reading Conversations with Ourselves may help a bit in this area.
Another step is to take care of yourself in times of stress or emotional difficulties. You’re worth that care. It is a great feeling to feel this worth- everyone should experience it. This may consist of finding self-care that works for you. Some prefer baths, face masks, teas, cuddling with a pet, or listening to soft music. Anything that is peaceful and soothing can be beneficial. Self-care can go a very long way in showing yourself kindness- you don’t have to be “on” all the time.
Accept yourself exactly as you are. This may be one of the biggest steps in self-kindness. Everyone has something they don’t like about themselves. I admit that I wish I was a more patient person. I’ve tried working on this but I have come to accept that…it’s just a part of who I am. It has taken a long time but I accept myself as I am. (Again, lots of therapy was involved.) If you can accept yourself as you are, that is a very big message of love. It’s okay to be different from others around you.
Listen to you. What do you need? Everyone has different needs. Some prefer to be alone a lot, or maybe just sometimes. Some need to be around others constantly. Listen to your mind and body. If you get exhausted just being around two or three people, take a break after an hour. Socializing can be hard.
Finally, provide for yourself physically. Self-awareness is key to self-kindness. If you need medication, take them. If you need to see a specialist, go. I require thyroid medication daily for the rest of my life and I don’t play with that. I can get very sick if do. Need to lose or gain weight? Work on a plan. We only get one body. Don’t destroy it.
I wasn’t aware of the true importance of self-care, self-awareness, and self-kindness until I got into therapy. Life happened. These three things are super important to our mental wellbeing.
Info courtesy of Psychology Today
Pics courtesy of Unsplash
*Trigger Warning: suicide is mentioned in this post*
In light of two high profile suicides in one week along with the CDC report releasing new information on suicides, I couldn’t stay silent.
The CDC report can be found here. It’s eye-opening for sure. It outlines what can be done in our communities, in our states and how to help those who have lost someone to suicide.
There is a list of warning signs and infographics to illustrate the prevalence of this issue. There are even steps to take if you are around someone who is speaking of taking their life. Suicide has been and remains a top ten cause of death for years. Almost 45,000 deaths in 2016 were by suicide. That’s too many.
There are so many factors that go into the agonizing decision to complete suicide. Mental illness is one factor, but many don’t have any prior issues. I just know that decision is one that changes those left behind. Other factors include substance abuse, financial issues, lack of support, and many other life crises.
This video is by my dear friend Josh. I have no idea where I’d be without him. He discusses how to talk to someone who is suicidal. He also shares his personal and professional experiences with this topic. I met him not long after his attempt and I HAD NO IDEA he had just left outpatient treatment.
If you are reading this and you are struggling, please know that it’s okay. Life is hard. You’re not alone.
Otherwise, be kind. Check on those around you. Love each other. There is a way out of the darkness.
Text “home” to 741741
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.
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.
(I’ve seen C.Diff, and it’s ugly, especially in non-verbal kids. YIKES)
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.
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
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.
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