The Importance of Using a Planner in Crisis Mode

I almost have no words for how hard last week was for me and my family.

The Truth About Mothering a Child with Exceptional Needs

I've drafted the first line of this post over ten times. It started as a celebration of mothers who raise kids with exceptional needs.

But that wasn't enough.

It morphed into a cutesy illustration of what moms of "normal" children can expect - footprint art, tissue paper flowers, or breakfast made from cereal and spilled milk - versus what moms of kiddos with special needs can expect.

But if a child can't remove his corrective foot braces, has inadequate fine motor skills, or had seizures pretty much every day this week, moms already know they won't be getting that traditional stuff. They don't need me to tell them (or you) that.

I owe it to the mom who stood by me in the special park (the one with a wheelchair swing and an adult-sized harness swing) - watching our two "probably have autism but doctors are nervous to label them" kids to make sure they were at least not physically mean to each other - to tell the truth.

Chronic Diseases and How They Destroy Your Time

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I spent an hour this morning sorting my prescription meds, calling the pharmacy to order refills, and making sure my epilepsy kids had his meds in order.

An hour of my life, gone every single week.

Just gone.

Surprising Day Planner Secrets

I use a planner. 

I am generally on time for meetings, mostly get stuff done by the deadline, and can sometimes stop worrying about missing stuff.

But I am far from perfect.

How Old Is Too Old to Potty in the Ladies' Room

A friend of mine recently visited the Mall of the Americas AMC Theater with her 9 year old son.

She was told by an employee that he was too old to go into the ladies' restroom with her. 

Don't Use a Planner as a Journal (Unless You Want to Be Unhappy)

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Most of you know that I am struggling a little bit right now. 

A Parenting Trick That Actually Works

A concerned friend recently asked me, "how is your second grader doing?"

I felt that distinctive wetness settling into my eyes. My throat struggled to create sound around the choking sensation. I was at a work event and determined not to cry.

My friend truly cared, so I wanted to give her an honest answer.

But what was the truth? And could I say it out loud without tears?

When Kids Are Exceptional, But Adults Can't Tell

I studied child development as an undergrad. I've been a preschool teacher, high school teacher, and middle school teacher. In addition, I spent most of my legal practice as an attorney focusing on juveniles, most of whom had special challenges of one sort or another.

So when I say that I have failed children over and over, it is quite a confession.

But I have failed children - and their parents - by often not recognizing special needs when they were not visually obvious.

As the mother of a kid with some exceptional needs, I figured I'd come clean and help the rest of you avoid making judgmental, self-centered idiots of yourself.

Learn from my mistakes!

Don't assume that a kid is "okay" based on appearances.

When The Loki is tired after a night of seizures, outgrowing his epilepsy meds, or trying a new attention medicine, he can appear to be a seven year old of normal intelligence and physical ability. And, in fact, he is. He doesn't need a wheelchair or a sign language translator.

Except, and this is the tricky part, he might get lost. Or he might have trouble remembering or following simple instructions.

He isn't okay without some extra help. He isn't safe or able to perform to full ability without some adjustments.

So, side eye to the lady who was glaring at me when I made my seven year old hold hands on our walk across campus. Yes, he knows not to cross streets without looking. But without a buddy, he'll sometimes wander across the street anyway.

Do assume parents are the EXPERTS on their kids.

I know a lot about child development in general. But there are only two kids that I can tell you everything about - their medical and educational histories, their motivations, their emotions. My kids. That's it.

So, if I am put in charge of your kid or I am bringing him somewhere, I no longer hesitate to ask, "is there anything I should know?"

Tell me that he gets scared in the dark, won't go to the bathroom without a crack in the doorway, or is allergic to sesame seeds. Let me know that she needs structure or more time or someone to hold her hand.

Parents, don't be scared to share those things with others. If they don't know, they can't help.

Adults, don't be afraid to ask. If you truly mean well, you might just make someone's day!

Remember that we ALL have strengths and weaknesses.

Grace means that we accept that about others and ourselves.

I am great in social situations. So I look around, find others who struggle, and give them a way "in" to the group. But I am aware that they might not want that, so I leave the decision up to them.

On the other hand, I cannot navigate or drive well. I let others drive whenever possible. So if I bum a ride, be kind! I'll cook you dinner or watch your kids.

Kids are the same way. Some are so sweet. Others are funny. Each has their own set of strengths and weaknesses, regardless of disabilities and abilities.

Sometimes, challenging kids make it hard to remember that. Sometimes, we don't see the exceptionalities.

We are too busy not looking or judging.

It's time to change that and start making the world a better, more accepting place, especially for children facing special struggles.

Etcetera.

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Why Catholic Schools Are Called to Serve Kids with Special Educational Needs

My kids attend Catholic school.

In so many ways, it is an incredible experience.

They learn about being kind and loving. Academically, they are challenged. They met others who have so much in common with us and make lifelong connections.

But, for years, they missed out on meeting any kids with significant special needs.

This year, that changed. Our school (and some other Catholic schools in Baton Rouge, Louisiana) are accepting students with special challenges, like autism or dyslexia.

As a mom of an epilepsy kid, I could barely be more excited. Every kid deserves the caliber of education that my kids receive.

(Yes, public school kids do, too, which is why I always vote yes for education funding.)

The Loki won't be alone in having special challenges (though, as a medical challenge, his needs are a little different than academically-challenged or socially-challenged kids.)

But as a mom of a slightly above average, completely "normal" kid (down to his hair, which he prefers to have cut "as boring as possible, please"), I am jumping up and down and singing praises for the school and its students!

My "normal" kid (Ander) was missing out - on helping others, on understanding human struggles and successes, on being empathetic - and now he gets a chance to see kids who aren't just like him. He has the opportunity to become compassionate!

Compassion for others is part of the reason we selected a religious school and it was a part that was missing for a long time. So bravo to the Baton Rouge Diocese for educating all children.

I hope that the Church will decide to go even further and stop charging a surcharge for kids with special needs.

I am willing to put my money where my mouth is and pay a bit more for my own tuition and do more fundraising to get the program costs covered, but I think the value - both to the kids in the program and to my own kid - make it worth bringing costs of the program down for the parents of these special kids.

Do your local private schools accept children with challenges? Do they charge extra?

Etcetera.

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Planner Tip: The Fold and File

A few things that Loyal Readers know about me:

1. The Loki has epilepsy.

2. I use a Projects section in my planner.

3. I double-side punch my blank planner paper.

Today, at the epilepsy doctor's office, I realized that the doctor only needed to see my notes from the last visit until today's visit. But until the school year ends and grades are complete, I really can't file away the rest of The Loki's Medical Log project.

I folded up the double-punched papers with both holes in the rings. That created a lovely page marker and a natural barrier from accidentally double counting a seizure.

The Fold and File technique could also be used for any old log that you want to mark as inactive, but not pull from your planner quite yet.

Calorie logs, exercise logs, old menus, old birthday plans, old first day of school checklists...anything!

Caution: It does make your planner thicker, so reserve this technique for items that need to be there (as opposed to filed or archived elsewhere) but that you need to protect yourself from accidentally treating as active pages.

Etcetera.

How I Discovered That I'm Not a Free Range Parent

Last year, Santa brought The Loki (age 6) and The Ander (age 9) bicycles for Christmas. My husband and I tried to teach them to ride. There were tears. There were screams. There were injuries. There was drama.

The kids also expressed their displeasure with the whole process.

So, last week, I brought them to physical therapists, paid over $500, and let the experts teach my uncoordinated kids - with their complete lack of fine and large motor skills - to ride two-wheeled bikes. (Don't judge! Okay, fine, judge. But just know it was worth EVERY SINGLE PENNY.)

It worked. We have (insanely expensive) bike riders!

After assessing their progress, the younger child got limits. He has epilepsy, so he cannot ride without a buddy along. He must ask first. No in the road yet without an adult, since he ignores cars. (Thankfully, we live at the end of a dead end road with almost no traffic.) He can only ride to and from the dead end and back to our house.

The epilepsy diagnosis made these rules reasonable.

But the older kid is riding so well and watching for cars, so he got different limits. He can go halfway up and down the street (still only about 0.2 miles), visit with neighbor kids in the front yard only, and go out by himself as long as he tells me he is going outside.

I watched him test the rules. He followed them closely. He is a very responsible, obedient kid.

Watching him, always in view of my house, freaked me out.

I thought I'd be the cool parent. "Ride to the park," I'd say. "Be inside before the streetlights," I'd urged. And then I would disappear, to take a nap or watch Netflix without a care.

Instead, I'm ruining my blinds trying to peek out the window. I'm thinking of setting the alarm on his watch for him to check back every 15 10 2 minutes.

Instead of allowing him to roam the neighborhood and explore, like I did as a kid, I want to tie him to the house.

Instead of free range parenting, which sounds deliciously compelling in theory, I want to helicopter parent. My nature screams for it.

It will get better with time, right? In the meantime, how upset would my husband be if I cut a peephole into the window shades?

Etcetera.

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A Feeding Schedule for School-Aged Kids

When grown-ups go on a diet, they often schedule their meals. Breakfast, Lunch, Snack, Dinner, Snack. (I know. I eat too late in the day. That's probably why I have so many curves. But, bonus for you, it keeps the grumpus away!)

Newborns and toddlers eat on pretty regular schedules, too. Every three hours, then every four, then six snacks a day...people told me breastfed babies set their own schedule, but my body said "no way" and set a schedule whether my baby and I liked it or not.

When my kids hit school age, it got so much easier. Breakfast, lunch and snack at school, something quick after school, and dinner.

Enter The Loki. That kid never follows the easy rules!

This time, it's his epilepsy meds. They make him "STARVING, MOM, STAAAAAARRRRRVVVVIIIINNNNGGG!" Drama much?

I've upped the protein and nuts in his diet. I've gotten lots of healthy snacks. But, really, he is begging for food anytime that he is awake.

I think I'm going to post a schedule.

Breakfast 7 a.m. - 9:30 a.m.

Lunch 11 a.m. - 12:30 p.m.

Snack 3 p.m. - 4 p.m.

Dinner 5 p.m. - 7 p.m.

Treat (my kids get two or three little Halloween or Easter candies a night) 8 p.m.

Seriously, it's a problem. I tell him he needs to wait for lunch, but he really is hungry. This morning, he had a honey bun (unusual, as we have some left from Easter, but I'm telling you anyway...keeping it real for other struggling parents), yogurt, milk to drink, and Rice Krispies and milk.

Still hungry. And in the morning, he throws up if I feed him protein (another side effect of the meds).

Maybe this way, I can just point to the schedule.

Etcetera.

Sometimes, Last Place Is a Win

I am competitive by nature. I am also the parent of a child with epilepsy.

This weekend, those things collided.

Absence seizures make a child inattentive. Having generalized seizures all night means a six year old who is cranky and aggressive, and, well, the kind of kid who goes from loving and "yes ma'am"ing to screaming and out of control.

That was part of the reason that we were sitting in the doctor's office on a recent random weekday afternoon, with a kid who had, within the hour, stood up in his class, stared into space, and wet his pants, despite being potty trained for years.

Fast forward six weeks, and meds are still not working. Epilepsy medication requires a lot of trial and error, repeated each time a child grows in any significant way.

But the Epilepsy Foundation 5K was this weekend. The Epilepsy Foundation, particularly the Epilepsy Foundation of Louisiana, has educated me and offered to educate our school and my six year old's teachers and classmates, free of charge. The Epilepsy Foundation deserves our support. They do good work.

So we made t-shirts ("Team Loki") and made our donations, and we ran.

Actually, we walked.

We walked slowly.

We stopped before the starting gun went off.

At the starting line, my kid had his first obvious seizure of the day. We started the race about three minutes after everyone else. We dragged him along.

He had another seizure.

Even among an epilepsy-savvy crowd, lots of people couldn't tell. His seizures have occasionally involved tremors or other obvious symptoms, but not that day. He just wasn't there, again and again.

We pulled him in a wagon for a while, but the little kids with us eventually needed the wheels back. We held his hands. We dragged him along. We waited impatiently while he picked flowers, balanced on the parking lot's cement bumpers, and wandered away.

The police patrol that follows the race rolled forward slowly, right behind us. Every now and then, we waved at the officer.

Halfway through the walk, my sister, who also has epilepsy, had a seizure. It was a good morning for her. Her seizures weren't piling up, one after another, as usual. She just had the one before she continued walking. But it delayed us a bit.

Then, the exhaustion came over him. He was done, but the wagon was gone.

We coaxed. We pleaded. We no longer had police escort.

Finally, when we could see no one behind us, we crossed the finish line. There were eight or nine people, cheering us on as if we were the first to cross the line.

We were probably the last to cross.

One of my military vet friends told me it is a win to finish at all. I thought to myself that military boot camp should probably include dragging a resistant, epileptic six year old for three miles through city streets.

But she was right, you know. It was a win.

Etcetera.

P.S. My nine year old wants everyone to know that lots of people did the one mile fun run and he still managed to come in around 25th among all ages.

How to Control a Out of Control Medical Crisis: Our Adventures in Epilepsy

We've been struggling with my 6 year old for about a month and a half now. He seemed really sick. Tired and lethargic, forgetting things, and suddenly not doing any school work at all. I didn't know what was wrong.

I did know that four different people (two teachers, a parent volunteer at school, and the receptionist) contacted me with genuine concern. I knew he was forgetting stuff, being uncooperative about his worksheets even though school is easy for him, and sleeping all the time.

I brought him in to the doctor.

They tested, at my urging, for mono. No mono.

They tested, not at my urging, for cancer. No cancer. I cried a lot after I got that result.

I was relieved. I almost didn't go to the follow-up visit. I almost just stayed home and left him at school. But it was too late to cancel the appointment, so I showed up to avoid the "missed appointment charge."

Epilepsy.

The sleep-deprived EEG confirmed seizures - frequent ones. An MRI is scheduled, but since his are generalized (on both sides of the brain), he is at low risk for a brain malformation or tumor.

I did what I do. I began studying and planning.

I didn't know that 1 in 10 people have had seizures. I didn't know that seizures could be hard to see (but easier, now that I know what I am looking for). I didn't know that some people - about 1 in 1,000 - die from seizures. I had a lot to learn.

I also had a new, long to do list.

An MRI to schedule with the nursing staff. School excuses to turn in. School excuses to acquire. Prescriptions to fill. Support groups to join. Education to pursue. Teachers and school personnel to notify. Meds to give, twice a day, exactly 12 hours apart. Blood work to draw on a regular basis. Follow-up appointments. Etc.
The diagnosis of epilepsy had my life spinning out of control.

I needed a plan. I needed my planner.

Here are the steps that I used to control the out of control medical crisis my baby is facing. I hope it helps some of you, whether you are dealing with epilepsy, cancer, or some other diagnosis.

1. Get a planner.

I prefer paper. It is simply easier to write down notes and look at my entire month at once on paper.

My Surface Pro 3 allows the same ease of writing, but is not always portable or charged for doctor visits. Also, some medical facilities and tests, especially sleep-deprived EEG areas, do not allow electronics.

But for those using technology, just make sure more than just a calendar is available. A place for notes and easy note-taking is essential.

2. Have a space for appointments.

Monthly planning pages are great. I don't just need to know when the appointments and blood draws and such are scheduled. I also need to know about other things, like when the school field trip is so that my kid never has to miss something fun for an appointment that could be scheduled some other time. 

3. Designate a section of the planner for a log of everything dealing with the diagnosis.

I used my Project section and created a project called "Child's Name Medical."

In that section, I put:

*lists of current medications and dosages

*medical history
*running log of seizures, doctor's appointments, phone calls, and tests

*lists of things I would like to do, like sending the school nurse a link for a free epilepsy training or joining the local epilepsy walk in Baton Rouge on March 28th

*questions for support group or for upcoming doctor's appointments

*uplifting statistics

4. Have a task list.

I add all tasks to my regular errands list or task list. In my planner, I use the weekly pages for this purpose.

5. Relax. Schedule time for that, too.

I have been overwhelmed by the outpouring of love, support, and prayers that we have received. We are at the beginning of this journey, but people at the end of it, seizure-free for many years, have taught me that epilepsy can be controlled in most cases.

But I haven't relaxed much. So, yesterday, my husband and I got a trusted sitter and had a hibachi and movie date.

Those who read my blog all the time know that I am very open and honest about my struggles and successes (and, sometimes, complete failures...yikes). But it took a while to write this post. I needed that time to relax, first, and step away from the problem.

If you know someone with epilepsy or another serious health condition, or a family member taking care of them, please share this post. Maybe I can make someone's life at least a little bit easier.

Etcetera.