We Have to Stick Together

Parenting

I’ve read a lot about parenting.

I’ve been a mom for fourteen years- Cameron was born in January 2005. (Yikes.)

There’s a lot of moms out there that try their hardest to demonstrate that parenting is easy.

I don’t know what planet they live on, but this is not easy.

Unless you are lucky enough to have nannies or other in-home help, you’re not sleeping much for a while after you have a baby. They aren’t the greatest sleepers. Some babies gracefully sleep all night at an early age and at that point, you may want to build a shrine to the parenting gods.

I almost did when Lily slept through the night before I went to work after her birth. Her brothers wouldn’t have thought about this.

The toddler and preschool years?

You love your kid, but are also ready to list them for sale on Etsy about three minutes after they terrify the cat.

This is the time where they learn so much and repeat things they probably shouldn’t. Break out the phones for those moments.

When kindergarten hits, be ready for tears.

Elementary school is full of fun and adventure… Just wait for the middle school. I’m currently there and, wow, is it full of things I never saw.

Pets, Stinky Feet and Sancti-Mommies

We’ve had a few pets along the way. Tiger was with us for a few months and sadly, we had to say goodbye after a tumor ruptured on his leg.

It was bad enough to make that decision, but it was worse to have to tell the kids. I couldn’t fix Tiger’s leg and keep him with us.

Tails and Miss Purr, along with the turtles, Biggie Smalls and Lightning, complete our house. We love them- they are family members.

Tails

Stinky feet are everywhere at my house. These kids are gross. They shower all the time.

The preteen and teenage stage…

Double yikes.

There’s so many things to explain- drugs, alcohol, mean girls and boys, sex, and the list goes on. As Ferris Bueller once said, “Life moves pretty fast.

He wasn’t kidding.

Then, there’s the moms that think their way is the best and that they are better than everyone else.

Whew….

They have tons to learn.

First of all, should they have a child with any kind of special needs, they are entirely screwed. Your mindset changes and throwing shade at other moms isn’t going to give you the support you are going to need.

Once these moms become known for their less-than-polite ways, who really wants to be within a mile of that?

I don’t.

As Ariana Grande says, thank you, next.

I’m all for research and opinions, but there are ways to express these respectfully. It’s possible to be nice and say what you think.

Parenting is the roughest job that many of us will ever have, unless you’re a first responder, logger, or something equally tough.

We need to stick together and remember all of us are doing the best we can. This goes for moms of newborns, elementary school-aged kids, even adults. It’s tough out there.

If you know a mom (or dad) who is struggling, try to help them out. It might be the best thing anyone does for them in a while.

Until next week, hang in there and try to laugh off your kid’s latest adventure.

Pics courtesy of pixels and pinterest

Teens and Privacy: Where Do You Draw The Line?

The Challenges of Social Media

Teens are a challenge and a half. I’m just wandering into the pool of those challenges- most of them weren’t even on my radar until recently.

Everyone needs privacy. We need our space from others, physically and emotionally. We need our own space to grow and express thoughts. Teens need this for many reasons, one of the biggest reasons being that they are trying to figure themselves out. Remember how hard that was? Yikes.

Resist the urge to hover- this may lead to your child hiding things from you and/or lying. This can lead to worse things that you anticipated.

What Our Parents Didn’t Worry About

In the age of technology, privacy can get a bit worrisome. Parents have a lot more to worry about now than our parents did. We have to worry about Instagram and other social site pictures being too revealing and suggestive.

We have to worry about our kids being bullied because that ends tragically far too often. We worry about our kids being targeted while they play video games. These are just a few things that our parents never had to think about.

Black and white computer pic

Talking to Your Children

Opening up a conversation about privacy can be a bit awkward. It’s hard to start the conversation without being weird- you may have to look for an opening.

Do you already have an open relationship with your child? If you do, this may be a bit easier. If not, you may have to do a little more work to ease into it.

Go to my Freebie Page and find some helpful tips for talking to your kids. They require careful steps but in the end, everyone will be glad for the talk. The teenage years can get pretty awkward and a bit scary. Kids need to know they can talk to their parents about anything, including things that go on in the electronic world.

What if my child won’t talk or let me see what I ask for?

This is a rough one. Some kids aren’t talkers. I’ve got a couple. I’m not saying just let the quieter kids be- because they still need to know the importance of opening up and respecting this request. Losing their privilege can be a huge incentive to give you the information you want.

Assure your child that they can come to you if they are scared. That may be all they need.

There are some great apps for keeping an eye on what your kids do online- I use Net Nanny and it is super simple. It’s free and sends me a weekly summary of anything blocked or warned due to something the kids shouldn’t have looked up or sites they don’t need to be on. They also know about this and that they will lose all privileges if I get anything from this page.

As of this post, nothing has ever popped up in the whole time I have had this installed. We share a YouTube account and I can see everything they look up on Google. Some parents I know require their kids to charge devices together in one room after a certain time, access to devices (including phones) at any time they request it, or a little bit of both.

As of now, one of my kids has a phone, and it’s highly monitored. The tablets haven’t been much of a challenge so far.

I’m not a fan of breaking and entering into your child’s room. I don’t recommend this at all, except in one condition. That condition is if you are certain your child is in imminent danger and/or there is illegal activity involved. By all means, break down the door and go for it. This also applies for self-harm and other mental health reasons.

I’m hoping that I never have to sneak in my kids’ room and go through their things. I hope we are able to talk through things and come to a solution first.

What are your thoughts?


The Deeper Thoughts of A Special Needs Mom

I’ve talked about Julian, and to a smaller extent, Lily, a lot. If you’ve missed Lily’s story, you can catch up in these stories:

Special Needs Round Two

Thoughts on a Second Diagnosis

It’s a lot to deal with. I didn’t wake up one day and wish for not one, but two kids with special needs plus a third with a heart condition. I promise you, I didn’t.

Cameron’s SVT is pretty much manageable, but it’s still super scary when your kid texts you at school because his heart feels funny and you’re a half-hour away trying to watch “The Act” with a friend. (I recommend that show if you’re ready to throw things at your TV.)

I’ve heard pretty much everything since I even had a thought that things weren’t 100% okay with Julian when he was somewhere around four years old. Lily was about a year when I noticed things were less than perfect with her development.

One of Matthew’s aunts hinted that having her three weeks early plus my heavy activity while I was pregnant with her might have led to her not doing what she should.

I almost punched her. Matthew grabbed our coats and we went for the door. Mama Bear was ready to roar.

Not long afterward, Lily was evaluated and of course, I didn’t do a single thing to cause her delays. She was born three weeks early, but that’s not early enough to cause the severe global delays she had. His aunt can go have several seats because Lily has since kicked her brothers’ butts in grades and speaks wonderfully. Two years of speech therapy will do that for you.

When you have a kid that consistently has meltdowns, tears your house apart, runs off in public and does other things that make people go “hmmm”, you’re going to hear a lot of different opinions. I heard almost everything before and after Julian’s diagnosis, even after I put him on meds, even from Matthew, which contributed to our marriage falling apart.

Sad

The Battle In My Mind

I heard a lot internally, also. This is the stuff that will rip you into shreds. It ripped me in half. I read books. I cried. I yelled. (I’m still working on this one, because, well, I’m not perfect.)

I talked to my mom, who understands Julian on a level that I am not sure I ever will. She says she was like him as a kid but didn’t have a mom that tried to understand her like I do Julian. Even though I worked with kids that were like him but bigger, I still didn’t get it. I was lost. So was he. I kept hearing these thoughts:

“You’re a terrible mom.”

You can’t handle Julian and Lily.”

The house is a mess and so are these kids.”

“You’re not good enough”

No wonder I was depressed, and Matthew wasn’t helping. I was trying to help Julian on my own. Lily had therapists left and right, and she did great in First Steps, but I was entirely on my own with Julian. I had some moral support on the bad days from friends and my mom, but I stopped going to Matthew because I knew I wouldn’t get it.

Julian finally got diagnosed in late 2011 and his evaluation was one of the best parenting decisions I’ve ever made. The story of that can be found in Looking at the Bright Side

Getting him on medication is a decision that I do not regret and to this day, I’m glad that I did. Some kids with severe ADHD can function well without meds and that’s great, but as of now, it just isn’t a possibility.

Maybe when Julian gets older, we can revisit meds, but for right now, I’m not willing to take him off. Clonidine is a great medication for impulse control and sleep- he has not been a great sleeper since he was a toddler, and whew, he needed something for impulse control.

Hearing From the Outside World

In the almost eight years since his diagnoses, I’ve heard so much, positive and negative about them. At this point, I’ve probably heard everything, so I no longer care. These are just a few that stick out:

“I’m sorry”- well, I’m not. I am not sorry that my son has an awesome brain that not a lot of us can understand. I would not change him, but I would change his struggles.

I couldn’t do it“- it’s not as hard as you think. Some people really are not meant to parent kids with special needs. If you watch the news, you can see this. Being the mom to two kids with special needs is hard.

It’s really hard when both have a rough day and all I want to do is cry. Instead, I just do my best and everyone goes to bed early. I have a support system that now includes Matthew, my mom, and great friends.

“He doesn’t look autistic”- this makes me want to punch people. First of all, there isn’t a “look” that people with autism have. They look like everyone else. Second, I’ve put years of hard work, money and my marriage on the line (right down to divorce papers) to make sure he is happy, medicated and has skills to live the best life he possibly can. Why wouldn’t I?

“Does he really need the meds?” This one was from my mother in law. She wouldn’t give him his meds on sleepovers but yet complained that Julian wouldn’t sleep. Matthew and I told her either stop complaining or give him his meds- guess who sleeps great now?

I don’t explain anymore to people why I decided on meds, I simply ask them if they want to come to my house on a day in which he hasn’t had meds in two days. (This is not a thing, by the way.)

“How do you do it?” This is annoying. I parent just like everyone else- I get out of bed and hope for the best. Honestly. Pepsi helps. Staying sober is a huge thing. When I was working with kids with developmental disabilities, I will admit, that was rough.

I would come home from a full day, sometimes 12 hours, then have to deal with Julian. (Lily was much easier.) I was mentally and physically drained a lot, and I almost asked to not go to those units, but I loved the work. I eventually transferred to one of those units about a year after Julian’s diagnoses.

At this point, I keep a consistent routine, both kids in their therapies, Julian’s medications consistent and just keep moving. Three kids is a bit of a circus without special needs, but having two with ADD, ADHD and autism is a whole different game.

It requires patience and empathy that I didn’t think I possessed, but here I am. Some days entirely suck, but then, I am dealing with two teens and a preteen.

“ADHD is not really a thing.” Okay then, please come clean Lily’s room, because she cannot without a list explicitly telling her what to do. I also have to take her tablet. She gets distracted so easily that I have to constantly check on her, which annoys her but the job gets done, right? Plus, come wake her up for school. No other explanation needed.

I’m already trying to figure out her morning routine for middle school because it will have be a lot different from the elementary school one.

If you want to experience it from Julian’s perspective, try being super smart, but bored as hell after you finish your work at school, even when the teacher offers you more stuff. Try being hyperfocused on things but not being able to finish them because you, like your sister, get distracted easily.

As a five-year-old, try running off in a parking lot after a bird and not realizing there are cars that can back out at any minute and hit you because all you want is that bird. Oh, and throw in autism. It’s a lot. I don’t know how Julian does it. He prefers to stay at home but will go out if there’s not a lot of people involved.

This stuff happens, everyone. I had to chase Julian through parking lots more than once because he darted off. He’s always been a fast runner. Luckily, he’s stopped this. Whew.

Even with meds, he struggles. They don’t cure ADHD, but they definitely help. I wasn’t looking for a cure- just something to help him not be so aggressive, impulsive, calm enough to sit and learn, and most importantly, sleep. As the years have passed, Julian has calmed down quite a bit, which is a bit of a relief.

Flower

A Few Kind Words

If you’re reading this and you’re not the parent of a special needs kid, please take this as what not to say to someone who is. There are other things you can say that are so much nicer, like:

  • “How is your child doing?”
  • “Is there anything I need to know or learn about your child’s diagnosis?”
  • “Let me know if you need to vent/get out/anything else” (this is so freaking important and believe me, we need this)
  • “You can do this.”
  • “How can we include your child?”
  • “Neat accessories”.. if they have them

These are just a few suggestions. I’ve had parents ask how they can accommodate Julian over the years on playdates and parties and I have appreciated this so much. My father in law has indulged his love for destroying things by bringing him things from his old workplace to take apart.

I’m just a mom, trying to get through parenting. It’s a weird world out there.

What annoying things have you heard while parenting? It doesn’t have to be special needs related, because every parent has heard something annoying. Feel free to share.

5 Facts About SVT

Parenting is challenging. Sometimes we are given those challenges out of nowhere. Cameron has been my “easiest” kid so far but yet gave us the biggest scare.

A Bit Of Background

Cameron was diagnosed with SVT in June 2015. This was discussed a bit in The Hardest Parts of Parenting

His diagnosis came after a game of basketball that led to an ER trip and scaring everyone in his elementary school in the process. Heart issues are very common in both Matthew and my families.

Cameron has been back to the hospital a few times since, due to more (smaller) episodes and for a small procedure to stop the episodes in 2017.

Due to some small episodes, he has had to be on a heart monitor for a month twice. I yelled at different customer service people over shipping complications with the stickers both times.

Mama Bear does make appearances from time to time, everyone. I try to be a nice person but when you mess with my son’s health…

Luckily, we live near a hospital that is amazing and Cameron has a cardiologist that spent his many years in school learning how to take care of kid-sized hearts.

The monitor came off both times without any issues being noted. He only goes back if anything comes up and as of yet, nothing. I will karate chop anyone, however, that even thinks of giving him anything caffeinated.

This includes energy drinks- no Monster drinks at this house. He currently takes two medications for migraines. One helps with his heart, so we consider it a two-for-one. The other is just for migraines.

Hospital pic

What IS SVT? Five facts

The last time I talked about this, I either said to Google it (because Google knows all) or I left a link, but this time, I’ll educate.

I decided on this because one of my greatest nightmares with Cameron is him collapsing during a basketball game and dying like I’ve seen numerous times on the news.

Most kids that die in that way during a sports game had a previously undiagnosed heart condition- either Long QT syndrome or sometimes SVT. Please bear with me, everyone, I’m not a cardiologist.

  1. SVT is an abbreviation for supraventricular tachycardia

This means that the electrical system in your heart works incorrectly, which can lead to an irregular heartbeat, chest pain, and in some cases, loss of consciousness. In Cameron’s case, he passed out in his first episode because his blood pressure dropped. His school immediately called me and an ambulance.

I couldn’t make it to the school in time, so the principal rode to the hospital with him, where I met them. In his second and more severe episode, he didn’t pass out, but he couldn’t walk and I had to get a wheelchair because I couldn’t carry his 12-year-old self in. I did make him stay awake in the car. He was in the hospital for four days that time.

The last few episodes weren’t as serious- but still not fun.

2. SVT can happen at any time, but episodes can happen years apart or never again.

I didn’t like hearing this part at all. It scared the hell out of me. I was afraid to let Cameron do anything for a while after his diagnosis because I was scared it might trigger an episode but he’s got to live his life, right?

He went from June 2015 to March 2017 between episodes before his procedure. That’s not bad. He’s had a few small ones since the procedure but nothing that required hospitalization.

3. There are some known triggers, but then it can also happen while you’re doing nothing or can wake you up from sleep.

Cameron has had smaller episodes during migraines, which is why he is now on medication for both.

He is also not allowed to drink caffeine except for small amounts if he needs it during a migraine, and he stays well hydrated during the summer. That seemed to trigger both episodes. The last episode was triggered by Ultimate Frisbee in gym class and I think he may have been overheated.

4. SVT can stop on its own sometimes requires action to slow the heart rate.

During one of Cameron’s episodes, his heart rate was well over 200 and I was petrified. I had to stand in the hallway, peeking through the curtain as the nurses and doctors worked on him.

There are small maneuvers that you can do on your own, like blowing through a straw or blowing on your thumb, but sometimes those aren’t effective. In the ER, most patients are given medications through IV.

Cameron had to be given medication three times before being transferred to a downtown hospital, where he was in the ICU for three days before spending a fourth in a regular room.

5. There is a procedure that can stop SVT.

Cameron was eligible for an ablation. His two episodes were severe enough that his cardiologist suggested it as soon as he went into the ICU. Cameron was awake but sedated, and his cardiologist went into his heart, found the tissue that was causing the bad heartbeat and burnt it.

Cameron stayed overnight and was home the next day. He missed a couple of weeks of gym class, but I don’t think he minded that very much. It has a high success rate, but Matthew and I were both very scared something would go bad.

I mean, it is small heart surgery. It went well, and Cameron is an active kid. He can play all the basketball he wants.

SVT can be a scary condition. I still worry when Cameron is outside playing with his friends or at school- his school is well informed. He knows what to do if his chest starts hurting and so does everyone that he spends time with. If you want more information on this condition please go here.