A Back to School Check-In

I am more than happy to report that my kids are back in school. August 14 was a magical day in the Sanders house.. at least for me.

After a little more than two months of summer break, I was more than ready to send them back to school.

First day of school

Wake-Up is Mom’s Payback

Wake-up time now starts at 5:30 am for Cameron, 5:45 am for Lily because she’s a bit of a sloth in the mornings and Julian wakes up at 6.

I could swear a small part of my heart broke when Cameron got on the bus on the first morning to go to high school. My big kid is now a freshman. This fact hurts my heart. I am not sure where the last 14 years have gone, but here we are. I gave him a pep talk in the car while we were waiting for the bus and he was like, “I’ll be fine, Mom.”

He jumped out and that was it. I was sad before sunrise.

Cameron hasn’t had homework yet, has only gotten two textbooks, but I don’t think he’s prepared for what’s coming. I’ve warned him about high school workload, but he thinks I’m kidding.

I’ll be able to help him with some things, but I can forget helping him with physics and engineering. Those aren’t even in my scope, but since his grandfather is a machinist, I’ll leave that to him.

He wanted to join the cross-country team, but I was not about to let him run in the extreme late summer heat.

For example, today’s temperature was 97 degrees (practice was canceled) and while he wasn’t happy, he understood that I wasn’t willing to risk his heart for this. Heat is one of his biggest triggers for an SVT episode, even if he stays well hydrated.

The Middle School Edition

I wasn’t sad about sending Julian off to the eighth grade, but sending my baby to middle school?

Ugh. I won’t lie. There was almost a tear.

Julian is not amused by this school year, it seems to be more of the same so far. Julian thrives on routine so I think he is doing well. He gets up, dressed, and so on. I encourage him to eat breakfast- sometimes he will, but usually not.

Lily takes forever to get moving and I almost drug her out of bed this morning.

I’m not kidding.

She has to pick out a headband, earrings, and socks to match her uniform. This might take a while, even though I have told her it may be easier if she does this the night before.

But what do I know? I’m just Mom.

I know nothing. Or so they think. I actually know plenty, but they don’t realize this yet.

Homework has finally entered the house- Julian got science homework today (this post was written after everyone came home from school).

So far, Lily seems to be doing okay with middle school. She has some friends with her from elementary school and joined a class that does service-based projects around the school.

I think this will be good for her. She likes helping others and the class does creative things that will allow her to have fun with her creativity. She’s also talked about joining the visual arts society.

I have tried to get Julian to join something at school with no success. Maybe in high school?

Mom’s Spare Time

Mom’s WHAT?

Mom has no spare time.

Mom got a job.

I have a part-time job as an instructional assistant at a preschool for visually impaired children. I work while the kids are in school and I’m home before they are. It’s literally the perfect schedule. I work with three-year-olds, hence the picture of the small yellow chair.

The students start on the 28th, so the adventure begins with them soon. My class has 9 kids in it. There’s a lead teacher and another assistant with me. I have basically zero experience with visually impaired kids, but I have a lot of experience with kids that have other disabilities and those that are non-verbal.

Watch my Facebook and Instagram for updates!

How is the new school year going for you? Were you happy or sad to send your kids?

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

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.