The Things I Forget

Parenting is challenging.

Every. Single. Day.

If you have one kid with any kind of medical issue and/or special needs, the challenge gets more intense.

Fair pic

Inside This Mom’s Mind

I didn’t realize that sometimes, after some years, that we can adjust to our kids’ issues so much that we can almost forget about them.

Sometimes. It depends on the kid.

It’s not that I forgot about Lily’s delays, but maybe I did forget that delays aren’t just during baby/toddlerhood.

Once she aged out of First Steps (early intervention) at three and went to preschool, I thought “okay, we’re good”

The person that completed her exit eval reminded me: “She may be behind in some areas as she gets older, but we don’t know which.”

She had a difficult time learning how to read. Even after she got good at it, she still asked to read to me, Matthew or my mom. These days, she’s reading “Dork Diaries” books, so I’d say she’s on track.

As you’ve read in other posts, she’s had further issues that pulled me to put her in therapy.

You can read those posts Special Needs Round Two

Thoughts on a Second Diagnosis

A Big Breakthrough

As of now, Lily is 4’9″ and weighs about 160 lbs.

Her pediatrician is concerned and as a result, she’s had labs drawn to see what’s up.

Of course, her thyroid is basically nonfunctional. I wonder where that came from? Mine was bad before losing half of it, but Lily’s levels are basically bottoming out.

Don’t worry, she is seeing a pediatric endocrinologist in early November. Her pediatrician is certain she will end up on the same meds that I am on.

We’ve changed her diet (still in progress) and she got referred to a dietician. The very nice dietitian asked if she could discuss Lily with the Occupational Therapy department and…

Here I am, filling out paperwork for an OT eval.

I know she doesn’t need speech therapy. She’s loud and there is no misunderstanding her. In that area, you can definitely tell she’s almost 12. The attitude is real.

In the years since First Steps, I guess we have adjusted the best we can.

Lily hates exercise, new foods, and most things yucky, except slime. She LOVED slime. At 11, she still can’t ride a bike. This doesn’t mean we haven’t tried. Julian even tried to help her ride a bike- he’s been on one since he was four.

While filling out the OT paperwork, I’m reminded that even though she isn’t a baby, she still has issues that are impacting her health. Her daily life.

*sighs*

How do I feel?

Tired. Overwhelmed. You know, the usual. I have many thoughts, some found in The Deeper Thoughts of a Special Needs Mom

Dunk tank

Birthday water fun

Trying My Best

Lily has ADD, minus the hyperactivity part. (Julian took that part and RAN with it.) I try my hardest to remember this when asking her to do things and when she’s in trouble. I forget that she is a bit behind her peers emotionally and socially. Being her isn’t always easy.

But yet, I entirely screw up. I lose patience. I get upset with her. I apologize and try to move forward. Some days are better than others.

Parents aren’t perfect, no matter how hard we try. We have to give ourselves some room.

The things I forget come back at the weirdest times!

Dealing With the Unexpected: Mental Health Hospitalization and Your Child

**Note: I am discussing children under the age of 18 in this post, not referring to adult children.**

Parenting is full of the unexpected: broken bones, bad grades, moving, breakups and more.

The life of a parent with a child with a mental illness is a bit more complicated. Watching for signs of self-injury, a meltdown that may require help from professionals, not knowing if your child will be “okay” the next day… it can be exhausting.

There is a point in which some of these parents have to make a decision to place their child in a mental health facility, for emergency short-term treatment or possibly long-term treatment. It’s heartbreaking and most don’t really want to. (Some do but that’s a whole different topic that I am not covering because it angers me so much. It would be more of a rant post.)

Thoughts From The Other Side

I’ve watched parents sign the paperwork in admitting while sobbing because they felt like they failed as a parent. Sometimes it’s the last option before something tragic happens to either the child, them and/or someone else, so no, it’s not exactly a failure as a parent. There is a point in which it is a parent issue that they just don’t want to face, but I digress. Those are the parents I’ve seen sign papers and walk out of the building without a second thought.

Some kids come in quietly, some fight the whole process from admitting to the unit. That is not pretty or fun for those involved in the physical managements. Kids don’t always understand why they are in these facilities. Parents are usually able to bring their children in, but some are brought in by ambulance due to the situation they are coming from. They might be coming from another facility, juvenile detention center or hospital.

Many of the kids I worked with stayed long term because of their complex issues- varying from mild to severe autism and other developmental disabilities. Before I went to that unit, I worked with kids with emotional and behavioral issues, so some of them had already been to foster care, juvenile detention, and other placements. The decision to come to this facility had been made for them, of course, based on several factors.

I met these kids after suicide attempts, crimes, fights and all sorts of things that you probably don’t want to think of, but yet, they still kept going, even on days that they just wanted to give up and shut down. We wouldn’t let that happen- thanks to a team of psychiatrists, nurses and of course, the mental health associates that the facility couldn’t function without.

If you’re super curious about what that job is like (it was literally the best job I’ve ever had and I still haven’t found another one I have liked nearly as much), please read Real Stories of a (Former) Mental Health Worker

There are some tips I will share if you ever have to take this step with your child:

  • Please label your child’s clothing and other belongings with their initials with a permanent marker. The staff will wash clothes at least every other day and this helps a ton. Laundry is usually done at night (kids are sleeping and there is more time) and it’s easier to sort if you know what clothes belong to who.
  • Psych nurses are angels.
  • Mental health associates, for the most part, have bachelor’s degrees, or some college hours, so please remember that when interacting with them. I have one and so did all of my co-workers, we were required. Many family members didn’t treat us as such, but please respect us for our work. It’s hard.
  • Please remember that the admissions office can only move so fast and that getting mad at the staff doesn’t help things, it just slows them down. There’s a lot that goes on in the background that you can’t see before your child goes to a unit/floor. It’s similar to a hospital.
  • We don’t control the food that is made in the cafeteria.
  • If you can, PLEASE make a list of likes/dislikes because this saves time and trials for everyone involved with your child. It helps even more if your child is non-verbal.
  • You are not a terrible parent for admitting your child and do not be ashamed. There are groups you can reach out to. Please ask for support for yourself when your child is admitted or ask their social worker/case manager. That’s what they are there for.
  • If your child has to be physically managed, please realize we don’t enjoy it. I absolutely hated having to be in managements. I can’t think of anyone who liked them. It is only allowed by a doctor’s order and has a ton of regulations and requirements behind them.

If you have questions or thoughts you want to get into, please email me! I’d love to discuss.

How Did We Get to This Point?

Everyone’s situation is different- I’ll just point this out before I get deep into the topic.

I’ve never had to think of hospitalizing Julian, thankfully. I can’t imagine a point in which he would need it. His meds are stable and his aggression levels went down a long time ago. I can’t remember the last time he got mad and turned a chair over.

Obviously, I’m going to recommend calling 911 immediately if things are life-threatening (someone has a weapon, actively hurting themselves, etc). There are some things that you can’t just wait in the ER for.

Otherwise, it may be a good idea to call your child’s mental health provider and/or go to an ER if:

  • Hallucinations/delusions
  • Extreme aggression/destruction
  • Extreme alcohol and/or drug use
  • Not eating/sleeping for a certain amount of time
  • Severe psychiatric symptoms that have not responded to outpatient treatment
  • Other issues that may be seen in your child that are more extreme than usual- self-injury, anxiety, etc.

Some of these may be bad reactions to medication, but it is still better to be checked out. I worked with a child that had hallucinations for two days before his mother took him to the ER. Turns out it was a bad reaction to his new anti-psychotic. He was taken off it immediately, then stayed a few days inpatient to stabilize on new medications.

The Hospitalization Process

Depending on the facility and many other factors, you and your child may have to wait a long time in the waiting room (also called admitting, if you’re at a private facility). You will have to stay with your child the whole time- filling out paperwork, dealing with insurance, and arranging the actual admission.

If you are in a hospital ER and your child is transferred, they will be taken by ambulance and you can follow or ride with them. Once your child is admitted, you will be given all the information you need on contacting your child. You will also be given a list on what your child can and cannot have, and believe me- if you try to give something to your child that is on the “Cannot have” list, it’s not getting to them. This is for your child’s safety, especially if your child has been hospitalized for suicide/self-harm reasons.

Shortly after admission (or in the morning, depending on the time), your child will be assigned a case manager/social worker. These people are fantastic and will do their best to help your child- contacting providers, making a discharge plan, among other tasks. This is the main contact person for you to contact about your child’s care. You can also talk to your child’s nurse.

Your child may or may not attend school while they are hospitalized- this depends on the length of their stay. Many private facilities have a school on the property. The facility I worked for had a K-12 school in the building and every child went throughout the school year, and a bit over the summer. If your child is there for a short stay, they may not attend. You may be asked to sign paperwork to allow for school records to be sent to the facility so your child can attend- they can’t go without it.

A treatment team consists of nurses, a psychiatrist, other staff and the social worker. They meet daily to talk about the progress of the patients on a unit, including your child. If your child needs something like medication changes, diet changes, etc., it’s discussed in this meeting.

Most parents feel guilty, relief, anxiety, sadness and maybe a mix of all these emotions while their child is hospitalized. This is okay. A mental health facility can be a bit intimidating, no matter how welcoming the staff is. Just remember that you can call at any time to check on your child, that you can visit and to take care of yourself. This is important. If you need help with other children and/or other tasks, ask for it. This is a rough time for the whole family.

The Path to Home

It may sound a little weird, but hospitals are required to start working on a discharge plan almost as soon as a patient is admitted. (I don’t run these places, I just worked in them.)

The planning includes information on medication, mental health treatment, placement (if needed), education, housing (if needed). You have to be a part of this process. If you think your child isn’t ready to be discharged, you can talk to the hospital’s complaint department.

When picking your child up, keep in mind that they have just been through a huge transition, whether this is their first or fifth time in treatment. Keep the first couple of days low-key so they can adjust to being home, in a quieter environment. Make appointments if needed and slowly adjust them back to the daily routine.

If you have questions, you can call the social worker that worked with your child and go from there. Don’t think you have to go at things alone.

Parenting can be a tough path- seek out help when you need it, support is always out there. Resources

Information courtesy of MD Coalition

Pics courtesy of Unsplash

A Parent’s Guide to Screen-Free Activities

It seems as if our kids were born with the ability to work a tablet, computer and/or phone.

Or is it just my kids?

It’s a well-known fact that most kids are very attached to anything with a screen and a keyboard, so I’ll spare all of us the research. The question is, how do we get our kids AWAY from the screen?

*pause*

*crickets*

Sigh

There’s Fun Beyond The Screen

I promise there is.

Our kids might not see this, especially if they’re teens and love Netflix, but there’s really a whole world out there. I have a kid on the autism spectrum, so this is double the fun.

Tips for getting your child off the screen:

  • Have another, more fun, activity lined up. This one is pretty obvious. It’s a clear winner at my house. Know your kid- what do they like? What is something you know will interest them for a couple hours (or however long) to keep them off the screen and engaged? Try something new, you never know what might get their minds going. At my house, this includes nerf guns, parks, walks and simply telling Julian to ride his bike.
  • Find apps with built-in timers. Some apps have these and automatically shut off after a certain amount of time and then the fun part- making sure your kid doesn’t go straight into another app.
  • Find a stopping point. This works wonderfully with kids who do not do well with interruptions or transitions. If you can have them stop at a certain episode, level or other points, it may be easier for them to stop. It can be super frustrating to have to stop in the middle of something.
  • Discuss consequences and follow through. Every parent knows that kids need consequences. If your child doesn’t follow through with your rules on not stopping, limits, etc., then it is time for a consequence.
  • Try limiting your own screen time. Look at how much time you spend on your phone/tablet.
  • Ban electronics at mealtimes. Some families allow electronics at the dinner table, which limits conversation at the main time of the day that everyone is together.

A note for parents of kids with autism: This can be a special kind of challenge because some kids use iPads to communicate, some behaviors can be stopped (short-term) by handing the child a device, and it can also be used as a reinforcer for good behavior.

Also, some kids with autism are great with computers. You may have to get outside assistance to modify the behaviors your child has, depending on the severity. This information is from Psych Central

Alternatives to The Screen

This is where the fun comes in- what can kids do besides play or watch things on a screen?

Plenty. Here are some ideas.

  • Read a book
  • Draw/color (there are SO MANY awesome coloring books out there)
  • Painting rocks (check out Pinterest)
  • Go through old clothes/toys to donate
  • Take a walk, go for a run, ride a bike
  • Picking apples, other fruits
  • Plant a garden
  • Birdwatching
  • Learn a new skill/hobby
  • Watch the clouds

It can be hard to put down the screen at first, but the memories you make as a family are definitely worth it.

Do you have any activities to add? List them in the comments!

Pics courtesy of unsplash

Book Review: “Fall to Pieces”

I love to read memoirs. For some reason, I really enjoy reading memoirs of those with addiction, and this was before my drinking became a problem. I’ve read “Life” by Keith Richards, which was fantastic but took three weeks because it’s over 500 pages.

I’ve also read Nikki Sixx’s book, “The Heroin Diaries”. It was a bit wild, but still very interesting. I’m just waiting for a member of Fleetwood Mac to come out with their memoirs. If anyone knows of one, please let me know.

I”ve read “Fall to Pieces” before, but it was a bit different re-reading it this time. This book was written by Mary Forsberg Weiland, the first wife of Scott Weiland.

He was the lead singer for Stone Temple Pilots, one of the best rock bands of the 90s. If you’re too young to know who this band is, you might want to go on YouTube. They were a great band. Scott died in December 2015, unfortunately from an overdose.

Book cover

The book opens with a very descriptive explanation of her childhood in California, a bit in New Jersey after her mom’s remarriage and, of course, when she met Scott.

Mary also became a model while moving around and became quite successful while still a teen. She also met her best friends during this time. She became friends with Anthony Kiedis, lead singer of Red Hot Chili Peppers. They have remained friends for many years.

It wasn’t until I read Scar Tissue, his autobiography, that I understood all the while Anthony was being my true friend, his own soul was being badly shaken.”

This stood out. We don’t always know what our friends are going through, much less anyone else. People hide things but still make things look at least bearable. I’ve been there for my friends through their own issues but yet struggling through my own.

The story of her relationship and later, marriage, with Scott, is so well detailed. She tells of the good, bad and in between. They were together off and on nearly a decade before marrying, and they had two kids together- a daughter and a son.

During this time, Mary drank and used a lot of substances. She knew it wasn’t the best way to live, but it took multiple attempts to finally stop using.

Mary also has had a long battle with bipolar disorder, possibly beginning when she was a teen. It’s hard for her or anyone else to know. She wasn’t diagnosed until well into adulthood, and this is well documented in the book. She struggled to accept this diagnosis along with being an addict.

Many people with either issue do. I will say she is being treated and is sober, but I won’t spoil the ending for you on how she got there.

Mary shared a quote from a community college class:

“In recovery, we look for progress, not perfection.”

Collage 2018-04-15 14_57_12.jpg

This is very accurate. Nobody is perfect, and anyone recovering from any kind of addiction certainly isn’t. Progress is what counts the most. It is not close to easy, and anyone who tells you it is- they are not entirely correct.

One of my best friends, Tyson, once asked me if I was okay while sitting at dinner and the talk to turned to beer for a while. I wasn’t a fan of beer to begin with, and he knows this, but he was making sure I wasn’t thinking about having a drink.

I wasn’t, but I am very grateful that he asked. It took a year before I could even go into a sports bar. “One day at a time” is the best quote I have ever heard that applies to recovery.

As many of us know, Scott and Mary did not work out (the section about the end of their marriage is a sad one) but they were able to co-parent, at least as of the writing of this book. I’m one of the millions of fans that were saddened to hear of Scott’s death. He was incredibly talented, like many others, but yet, he had an addiction that he was never quite able to end.

Pic courtesy of Google