The Work at Home, Special Needs Mom's Survival Guide to School Days

Me, about thirty minutes into "Why aren't you dressed yet!?"

First of all, my kids are morning people.

I know. I'm sorry for me, too.

Every morning, no matter what time they finally fell asleep, my kids are bright-eyed and bushy-tailed by 7 a.m. 

Taryn is usually up by 5:30 and ready to go for the day. 

I am not a functional human being until at least 8:30. 

Normally, that combination alone would be enough to drive a mom mad. But then you add in one child with severe ADHD/ODD and a splash of ASD, a two year old with tyrannical tendencies, and don't forget the unpredictable temperament of the five year old, and you get chaos. Pure chaos. 

Your average morning in the LWK household goes like this:

• 5:30 a.m: Taryn wakes up, and comes up the stairs from his room to the living room, turning on the TV. 
• 6:00 a.m: The King wakes up and screams his head off until either a) he's managed to get out of his room and down the stairs or b) someone comes to get him, because his doorknob sticks from time to time. 
• 6:30 a.m: Despite multiple "Please quiet down, it's still dark outside, guys, c'mon!" from me, I now have all three children awake and already fighting. 
• 7:00 a.m: Mom has finally made a cup of coffee. Don't get too excited - I probably won't get to drink it yet. 
• 7:30 a.m: The children are given breakfast. (This may seem odd given how long they've been up, but just wait until you see what time they start school. It'll all make sense then.) I spend several minutes getting the hungry yet resistant King to sit in his chair and eat.
• 7:45 a.m: I remind the children they need to start getting dressed and ready for school while wrestling the King back into his chair after he's thrown all his food and climbed out. (His chair is a booster seat on the floor. He knows how to unbuckle himself, so safety first.)
• 7:50 a.m: I remind the children again that they need to finish eating while cleaning up the second attempt to feed the King his breakfast.
• 7:52 a.m: Taryn is done eating. He goes to get dressed. The King is finally eating.
• 7:57 a.m: Kyle is done and now he and Taryn are screaming at each other in the bathroom. I wrestle the King back into his chair, because he thought he had to check out his brothers fight.
• 8:00 a.m: I've finally gotten the King to sit still long enough to finish his breakfast. Taryn has come down the stairs crying because "Kyle won't let me brush my teeth!"
• 8:01 a.m: Kyle comes into the kitchen to defend himself. "I'm trying to brush my teeth!"
• 8:02 a.m: Kyle is now slamming his way down the stairs to his room to get dressed, screaming that I'm mean when I told him to let Taryn, who was in the bathroom getting dressed and ready before him, finish what he was doing before he starts.
• 8:05 a.m: Taryn is ready for school and now sitting on the couch watching Disney Jr. Kyle is throwing things in his room.
• 8:07 a.m: Kyle comes up in mismatched clothes that I'm pretty sure he dug out of the dirty laundry.
• 8:08 a.m: Kyle cries that he has no clean clothes.
• 8:09 a.m: I give Kyle the clean and folded clothing from his dresser that he refused to open.
• 8:10 a.m.: Kyle can't remember how to put on his shirt.
• 8:12 a.m: Kyle has his pants on backwards and cries that he can't remember how to fix them when I send him back to do so.
• 8:15 a.m: Kyle finally has his pants on right, but now claims he can't remember how to use his belt.
• 8:16 a.m: Kyle is now trying to put his socks on over his shoes.
• 8:20 a.m: Kyle has now put his shoes and socks on correctly. Taryn begins the same process. He puts his shoes on the wrong feet. Twice.
• 8:22 a.m: Kyle can't find his lunchbox. Mom finds it in his backpack.
• 8:23 a.m: Kyle just remembered he didn't finish the homework he told me he didn't have. Mom tells him too bad and emails his teacher. Now Kyle is screaming again.
• 8:29 a.m: Taryn can't find his jacket. Kyle puts his on over his backpack then cries because he can't zip it.
• 8:32 a.m: Jackets are on correctly. Children walk out the door for school.
• 8:34 a.m: Taryn comes back in because he forgot his backpack. 
• 8:36 a.m: Taryn proceeds out the door again.
• 8:47 a.m: I get an email from Kyle's teacher that he was late for class. We live in front of the school. It takes Kyle approximately five to seven minutes to get to class from our house. I have no idea why he's late. School started at 8:45.

Chaos. Utter and complete chaos.

Or it was. 

Until Mom decided she'd had enough of the antics. 

So how, exactly, do you even make a dent into fixing this insanity? 

Some of you will probably sit there and wonder how in the world it got this chaotic in the first place. Others will nod along, having their own version of chaotic school mornings. 

I have no idea why my children act this way in the morning. They've had the same routines and expectations since they started school when they were each 4 years old. At nearly eight and nearly six, I don't know why they persist in this insanity. 

I do know, though, that about three weeks ago, I implemented some changes. And wouldn't you know it, the chaos, though not gone, has alleviated somewhat. 

How did I do it? With a few organizational techniques, and lots of continued discussion:

1. I bought a plastic tower of drawers. Currently, we have one with three drawers. In the bottom drawer, the boys put their school shoes. In the middle drawer, Taryn lays out his clothes for the next day, which have been preapproved by me. Kyle does the same in the top drawer. This alleviates Kyle's penchant for trying to wear dirty or non-school clothes to school, and makes sure that I, a night owl and non-morning person, am still awake enough to approve their clothing so they don't pull one over on me. 
2. Every evening when they get home, they empty out their backpacks, placing their lunchboxes on the counter and any papers they have in the drawers their clothes will go in later. While I go through their papers, they do their homework at the coffee table (we don't have a kitchen table). 
3. On Sundays, I pack up gallon sized Ziploc bags full of snacks for school, complete with juice box or water bottle. (I go every other day with those.) This way, all I have to do at night (or in the morning - let's face it, I work from home, I get busy and procrastinate sometimes) is shove a sandwich or leftovers into their lunchboxes and they're set.
4. In the morning, the first one done eating gets dressed, brushes their hair and teeth, and puts their lunch and homework into their backpack. The second child follows once the first child is completely done. There is now a fifteen minute timer set. Each child has 15 minutes in the bathroom. Until that timer goes off, no other child should be in there. (Full disclosure: We do have two bathrooms. The children have rendered their bathroom downstairs not functional until Mom can get a plumber in here, so we're stuck sharing the upstairs bathroom.)
5. Given his apparent aversion to doing anything but following his brothers and watching TV, I have taken to placing a bowl of cereal on the coffee table for the King. Dry cereal, no milk, so it doesn't get all soggy or nasty. If he's hungry, he'll nab a bite or two. Once the older two boys are off to school, I'll wrestle with actually getting him fed and ready for the day.
6. At dinner time, I have set timers so the boys will hurry up and eat or at least know when they have taken too long and should be done or else they'll sit there all night. I've taken to setting alarms on my phone for breakfast. One goes off at 7:30 to announce it's breakfast time. Another goes off at 7:45 to let the kids know they have 5 minutes. At 7:50, they need to be done so they can get ready for school if they're not already. 
7. Once lunches and homework are in the backpacks, they are set next to the door so the boys see and grab them on the way out.

All of our issues aren't completely alleviated, but this has cut down on the chaos quite a bit. Kyle still throws his morning fits; Taryn is still up at the crack of dawn and unpredictable emotionally; Kyle still runs late for school occasionally due, in large part, to his meltdowns. 

No solution is 100% fool proof. Kids have bad days, too, but we're doing our best to find something that works for us. So far, so good. We'll find more things to add on or try, and find things that just don't work. We might find things that work better. Who knows. 

What do you do to cut down on the chaos on school mornings? Any tricks that work better for your kids, special needs or otherwise? Share your tricks with us, and let us know if you try any of ours and how they worked for you! 

The Factor Factory: The Kindle Edition!

An illustration from our book! 

More things I meant to put up here over the last few months and just haven't done! Time and life, you know. They get away from me a bit.

An accurate representation of my face right now haha

Kyle and I collaborated on an illustrated children's book explaining Von Willebrand's Disease! (Or at least, explaining it the best we can. Disclaimer: We are not medical professionals. We are a 7 year old and his mom. Please ask your doctor for more specific information if you or someone you love has or may have VWD.)

This book is meant to help elementary aged children understand what VWD is and why their classmate(s) who have it may have to be a bit more careful than they are.

The Factor Factory: A Von Willebrand's Story is available on Amazon at this time. Currently, it's only available for Kindle, but we are trying to get it ready for a hardcopy publishing. We will (try) to let you know when that happens, for those who want it but don't have Kindle!

Side note: We recognize that many of our readers are not US based. Please note the above link is for the US Amazon site. I do not know if this will make a difference for your country. We appreciate all our foreign readers and can't thank you enough for your interest in the adventures of complete strangers on the other side of the world. Please feel free to write comments, introduce yourselves, and let us know your thoughts on anything we publish here! We like making new friends. Also head over to our Facebook page and follow along for the videos, pictures, and short updates that we post with more frequency there!

On the Road Again, I Can't Wait To Be On the Road Again...

Kyle on one of the local hiking trails near our new home!

It seems every time I turn around, we move. I feel like I'm constantly tripping over boxes, re-establishing routines, and calming meltdowns from all corners. 

So how do we move from Minnesota to Florida, and then from Florida to Colorado without Mom losing what little remains of her sanity?

I have no idea. When you find out, please share your wisdom with me.

I'm kidding.

Sort of. 

Okay, not really, but we didn't do half bad. So although I'm posting this later than I actually wrote it (seriously, I saved the draft in November. Bad Mom!), here are my little nuggets of...let's call it wisdom...in how to make a cross country move with special needs children.

Get Them Involved in Planning

This is important for all kids, I think. We made a few moves when I was a kid, and my mother always involved us as much as she could. I believe that made it easier.

Now, of course, I don't mean talk to your kids about the mortgage process or the rental application, or anything like that. Adults have to move wherever is best for them; that's part of the frustration of moving as a kid! However, that doesn't mean that the kids should feel completely left out of the decisions and process. Ideas may vary based on your child's age and mentality, but what we did was

• Show the kids the house we would be moving into via pictures kindly sent to me by the lady I bought it from
• Have them pick out a "theme" for their new room, even if it just ends up being new bedding with their favorite character (which will likely apply if you are moving into a rental or aren't artistically inclined)
• If you're moving long-distance, have them help you map out your route, even if you'll be using GPS

The boys had a blast looking through pictures of our new house, picking out their rooms, and imagining what they would do with their space. Kyle, who loves maps and the idea of traveling, had a great time mapping out the route with me in the atlas he was given by a friend of my mom's. 

Talk About What to Expect

Kids, especially autistic kids, like to know what's going on and what they can expect to have happen when big changes occur. If you're just moving across town, talk to them about the neighborhood you'll be moving to. Tell them 

• If they should expect to be changing schools
• How far away they'll be from the houses of the friends they like to hang out with (if this applies - it didn't really for us, as my children are not at that stage)
• What kind of housing they can expect - are you moving from an apartment to a house? Will you be living in town or on the outskirts? Are you going country? 
• Create a social story based on your unique move for your child to read. If you're not sure how to do so, or just not really the creative type, or even if you just don't have the time to spare to do so (no judgement here - it happens!), check out the great social stories you can download and print out at your convenience. (Please know that I am not personally or professionally affiliated with any links on this page as of this writing, nor do I receive payment at this time for any advertised products. I just want to share what's worked for us! If a link is broken, no longer working, or to a wrong site, please let me know so I may fix it!)

If, like us, you're moving to an entirely different location, you may need to be a bit more in-depth with what you discuss:

• If moving to a new town altogether, take a drive through to the area you'll be living in, if it's in a reasonable distance from your current dwelling. Explore routes to school, exciting new places to try out like restaurants or even the local library, and, if unoccupied or current occupants are okay with it, allow your child to see where they will be living and explore it if possible.
• If moving to a new state or to a location that is not necessarily in "Let's take the day to explore this" distance, pull up Google Earth on the computer, or download the app. Type in the address of where you will be moving to and go on a virtual exploration of the area with your child. 
• Since your child will DEFINITELY be moving schools at this distance, pull up the website for the school your child will attend. Most sites these days have staff photos and a little bit of information about what your child will be learning in their grade, if not their new classroom. Call the school and see if you can schedule a time for your child to check out the school prior to their first day; if that's not possible, ask if you can bring them in a little earlier on their first day. 

Of course, there are many other things that you might want to do based on your child and situation.

Allow Your Kid(s) to Help Downsize

If your children are of an age to do so, and of the ability to do so (I recognize not all special needs children are able to help in such an excursion), involve them in any downsizing you may do before you move. Have them gather up clothes that they don't wear, toys they don't play with, and books they don't read. Let them help go through games and movies, too, if they are able. Remind them that they can't take everything to the new house, even if the house is the same size or larger than the one you currently live in. Moving is a perfect opportunity to do some "spring cleaning" with those items that just seem to clutter up no matter what you do. If your child needs to see what actually happens to the items they get rid of, try

• Holding a yard sale. If you do this, I recommend allowing your child to keep part or all of the money from the sale of their things. I haven't done this with my own kids, as we simply have never been in a place where this would have worked, but it was done when I was young, and holding onto the money from the sale helped me to understand that things I had gotten rid of would be replaced with new things I wanted. It also gave me a sense of responsibility and independence. 
• Take them to a local consignment shop. I did this with Taryn, and it went great. He boxed up all the Thomas the Train toys, books, and movies he no longer wanted (he had a LOT of Thomas things - about three boxes worth if I recall), and we took them to a children's consignment shop up the road from our old apartment. There, I let him speak to the owner of the store about what he had and helped him reach an agreement on payment for the items. I can no longer remember how much he got exactly, but I allowed him to hold onto $20 or so of it, and held onto the rest for a later time. He was ecstatic. 
• Head over to a local homeless or women's shelter. There are, sadly, many children in those areas, especially if you live in a major city. So long as the items are in decent shape, most shelters will accept them as donations. Maybe ask if your child can hand out a few items to children in the shelter (although this may not be granted, if only for the sake of not violating the privacy of the shelter's child occupants). 

If your child is able to help with this, seeing where their discarded, gently used items end up can help them let go of those items more easily. 

Packing Up Blues

As parents, particularly parents to children who require a little (or a lot!) more care than others, we expect to have to do all the packing and cleaning when moving from one house to the next. In my experience, though, children who are physically and mentally capable of doing so often transition to their move much more easily the more they are involved in all the steps of the process. This includes packing and cleaning! You know your own child's limits and abilities, so no judgements from me if this should be a no-go for you. If you'd like to try it out though, make it as easy on everyone as you can:

• Assign your child a certain room to pack up. If a room is too much for them to focus on all at once, break it down. I had my kids responsible for packing up their bedrooms. Since Kyle tends to freeze up when left with such broad instructions as "Pack up your room," I broke it down. They were instructed to pack up certain items first, then tell me when they were done and I would give them more boxes and instructions.
• Speaking of boxes, label the crap out of those things! It helps the kids remember what goes in which boxes, AND makes unpacking a breeze.
• When the packing is done, let the kids help carry the lighter ones to the UHaul or whatever moving service you're utilizing. It helps them to see their things really are coming with.

Road Trip Activities

If you're moving a good distance and will be cooped up in a vehicle for a while, it's a good idea to plan ahead of time for activities, rest stops, and the like. Many newer vehicles come stocked with a built-in DVD player, so make sure you have plenty of DVD's for those kiddos to watch! 

• Coloring books and crayons, markers, or colored pencils are a time-honored road trip activity. You can stock up on all kinds at your local dollar store.
• Make sure you have your atlas if you're moving long distance so your child can keep track of where they are!
• Don't have a built-in DVD player in your car? Many decent ones are fairly cheap these days brand new, or you can hit up your local pawn shops. There's a good chance one of them will have a selection of gently used ones to fit your budget.
• Find your rest stops on your route via atlas or GPS, and look to see if there are any fun activities you can take your kids to in the area. On our route out to Colorado, we found a few that we could stop and play at with no cost to us, which allowed the kids to stretch their legs and get out of the cramped car for a bit.

There are, of course, numerous options for road trip activities. These were great for my kids, but your kids may not have the same interest in the move as mine and might need different activities to keep their little minds occupied.

Welcome Home!

Hopefully you reach your destination with most of your sanity, only a few grey hairs, and all of your children. I know once you get there, all you want to do is relax. But there's a whole house to put together! And children underfoot. What to do, what to do?

• This probably sounds like a no-brainer, but just like your kids might be capable of packing up, they may be capable of unpacking, too. If your kids are like Kyle, though, you might need to set up their furniture and then walk them step-by-step through what they should unpack. ("Okay, we've got your dresser set up. Put your clothes away." "Your bookcase is put together - go ahead and put your books there." etc.)
• When they're done unpacking their room, or if they're not quite able to unpack completely on their own but could with some help, let them help unpack little things like bathroom accessories or your movie collection.
• Not quite capable of unpacking? No worries - they can still "help" by finding spots for things you're looking for, exploring the house, or even telling you what happens in the movie they're watching that you "don't want to miss but can't watch right now!" 

We here at Life With Kyle recognize that some readers may have children who are not physically or mentally capable of many of the things on this list. Because my experience is with higher functioning, semi-able bodied children, that is what I know and feel more comfortable writing about. If your child is not quite where mine are, I would feel horrible trying to speak for your experiences, but I'd love to hear them! Have you moved with a special needs child on any end of the spectrum? How did it go? What did you do to make the move easier? Is there anything you wish you had done looking back, or maybe wish you hadn't done? Share your experiences with us in the comments, and help your friends and family out by sharing this post with them. 

Expectations Versus Reality: Inner Reflections of a Special Needs Mom

We have a weekly meeting with a Parenting Expert, whom we shall call J. This meeting usually nets her more knowledge than it does me.

Today, however, she asked me a question and even I was surprised at the answer that popped out.

We were talking about Kyle and his antisocial tendencies. Kyle is the friendliest child with severe social deficits that are usually overlooked by the vast majority of people. J asked me how he does with friends. Kyle...has people he knows who are his own age, but his friends are mostly people my age or older. He doesn't invite friends over. He doesn't ask to go over to friends' houses, and he usually won't make any effort to play with others at the park or anything. J asked me how I feel about that. I was...surprised by my response, although it is a true one. It's simply not one I've given much conscious thought to.

I read a post, a while back, in a Facebook support group for parents of children like Kyle. In its essence, the post talked about how we have to learn to accept, as special needs parents, that our children may not be their happiest doing the things we recall doing. What makes them happy may not at all resemble what we had planned for their lives when they were born.

When Kyle was born, I thought his childhood would resemble mine. I had a best friend who practically lived at our house and vice versa. We're still friends to this day. I was prepared for a gaggle of adolescent boys to come running through my house as he got older. I was prepared for overnight guests and for him to be an overnight guest. I was prepared for pizza parties, Cub Scouts, and gaggles of little boys shrieking through my house.

When Kyle was diagnosed as being on the autism spectrum, I had to accept that a lot of things that I had assumed as a given when I was pregnant with him would not happen the way I thought. As the years have stretched on, I have run into things that I had thought he would do that he cannot or does not do, and I have had to accept, once again, that my vision of his life was not to be.

My house shrieks with the laughter and arguments of little boys, but they are all my little boys. Kyle is in Cub Scouts, because I put him in it, but he is happiest with independent projects.

Kyle has never brought a friend home. The only overnights he's had have been to family members houses or the babysitter's. His closest friends at school are his teachers and the administration staff, who all know him by name and greet him with smiles and high fives.

Part of me, the part that treasures the memories I made with my friends at slumber parties and afternoons spent in each other's homes, mourns for what I can see my son doesn't have. I ache for him to have those memories. I see my friends post photos and stories of their children and their children's friends. I see photos that proudly proclaim "Daughter's First Slumber Party!" and the like, and my heart aches for the experience he doesn't have, and yes, this part of motherhood I have not yet experienced, though I know I likely will with one of my other boys.

The other part of me, the part that knows my son so well, knows that he does not need to have those experiences to have a whole and happy childhood. My expectations do not meet with what my son needs. Kyle needs quiet. He loves building with his Legos on his own. He loves solitary science experiments, and nature walks, and explorations that maybe require Mom's company.

What I wanted and what I thought he would have are nearly the total opposite of what he wants.

In the end, it doesn't matter what I want for his life, or what I expected when I had him. What matters is that he is happy.

And he is.

To The Lady Who Called My Crying Toddler Names

Dear Fellow Patient in the Optometrist's Office,

Today, you had an appointment with the eye doctor. I'm sure you weren't looking forward to this - few people enjoy having their eyes dilated and such. I'm sure you weren't expecting the long wait, and you may not have realized this particular Optometrist serves both adults and children, so you might not have expected young children.

I also had to go to the optometrist's office today, though it was for my five year old son. He did great, in case you're wondering. You know who ELSE had to come with us?

This bundle of adorableness! Do you remember us now? No? Let me refresh your memory.

We got to the office at about 10:45. Great! My other child's appointment was at 11:00 - I was early for once! Woo hoo!

You were already there when we got there. I don't know if you were a walk in or if you had a scheduled time and were also made to wait. What I do know is that you were there when we got there.

The King (my sweet baby in the above picture, taken shortly after we arrived at the office today) had been up since 5:30 this morning. He was exhausted, but was being pretty good for the first 20 minutes or so that we were there. The longer we had to wait, though, the more my poor 21 month old boy fell apart.

And he screamed. Because he's a toddler, and just learning to speak understandably, and this is what barely verbal not-quite-two-year olds do: they scream, they cry, and they throw fits.

I tried everything I could in a crowded waiting room to calm him down. I sat with him. I rocked him. I held him. I walked with him. I bounced him. I did everything short of leaving an appointment I couldn't reschedule to get my poor boy to calm down.

And finally, FINALLY, it worked. He'd been sobbing and screaming in spurts for almost an hour and I TOTALLY understand people being irritated by the screaming, fit-throwing 21 month old boy in the crowded waiting room. I even understand people making remarks about it, and I could even understand rude comments coming my way if I hadn't actively been trying to comfort him.

What I, and most of the other patients and staff in the room who heard you, fail to understand is why you, a much older stranger, felt the need to come up to me, once my son had calmed down, look directly at his sweet, exhausted face and say "I see you finally got the bratty little worm to shut up."

Bratty. Little. Worm.

Ma'am, with all due respect and what little compassion I can muster through my own exhausted haze, what in the actual fuck is wrong with you?

I wasn't ignoring my son's cries. I wasn't foisting him off on the staff. I wasn't neglecting my screaming toddler in favor of my smart phone (though admittedly, it did cross my mind at one point). I was literally doing everything I could do at the time to calm him AND HAD SUCCEEDED before you made your comment.

I can understand coming up to me and congratulating an exhausted and stressed out mom on getting her child to calm down. I can understand commenting on how long it took.

I do NOT understand why you would feel the need to call a total stranger's child a bratty little worm.

I don't know if you are so far removed from having young children yourself that you no longer remember how hard it can be. I don't know if you never had children. I don't know if you were just in a bad mood due to the long wait in a crowded waiting room with a screaming child. You could be an angel every other day of the week. You might be one miracle attributed to you away from the Pope declaring you a living saint. I don't know. What I do know is that I will always remember you as the rude older lady who referred to my obviously exhausted toddler as a bratty little worm.

If you're interested, this was what he did almost the moment he got into the car, two hours after our original appointment time:

And you think my adorable boy is a bratty little worm...

Bless your heart.

The Good, The Bad, The "I REALLY Shouldn't Laugh at That:" Adventures in Relapses

This site is dedicated to the good, the bad, and the "I really shouldn't laugh at that."

Today we're going to discuss all three, because why not?

So, in December 2015, Kyle had a bilateral derotational osteotomy. This is fancy talk for "the surgeon broke both his legs, turned the bones around, pinned them together, slapped some casts on him, and went on his merry way."

It turns out there's a very small chance that kids with cerebral palsy (Kyle has ataxic CP) will relapse following this surgery.

I took this picture just a couple nights ago. I had noticed, when Kyle was digging for a toy, that his right leg looked a little...funny. But not the good kind of funny. The bad kind of funny that makes you go "Oh dear God, here we go again. Second verse, same as the first." So I had him stand up straight, feet together, legs together, and took a photo.

I sent that photo to my mom, who showed it to my grandparents, and all 3 confirmed they saw the same thing I did: Kyle's leg did indeed, look bowed. Again.

The next morning, I emailed the picture to his orthopedist and called to see if I could get him in. We're working on getting him in ASAP, but right now he's not able to be seen until August.

The doctor agrees, it appears Kyle has relapsed.

Now, a relapse isn't necessarily the end of the world. It feels like it is, but it isn't. We have a visual confirmation that he's likely relapsed, but we need x-rays to see how bad it is and what we need to do about it. In the extreme, Kyle will need ANOTHER surgery.

Because Kyle has, like his mother, terrible anxiety, we discuss the worst case scenarios together so we're prepared. So I sat Kyle down and explained to him what was going on and what might happen.

He cried. He was angry. Because of course he was. Wouldn't you be? I am, and it's not even my leg.

ANYWAYS. Finally, Kyle, being the amazing kid he is, told me that no matter how much he DOES NOT WANT another surgery, if the doctor says he has to do it, he will.

But he has conditions.

One of these conditions is that I am not allowed, now or ever, to recommend that he dress up as Frankenstein for Halloween.

I mean really, how unfair.

The Reality of Childhood Bipolar Disorder

Several months ago, I wrote this post about the reality of ADHD/ODD in kids like Kyle.

Today, for my edification and yours, I want to talk to about the reality of childhood bipolar disorder...in children like my four year old son, Taryn.

Yes, I said four year old.

The reality is, bipolar and other mood disorders do exist in young children. As with ADHD and ODD, it's the severity and occurrence of the behavioral issues that win these kids their diagnosis and set them apart from more typical children of similar ages. And, just like ADHD and ODD, the diagnosis is difficult to get.

No one wants to label the adorable curly-haired tot in front of them as mentally/emotionally disturbed or unbalanced. No one wants to look at his exhausted, teary-eyed mother and tell her "I am so sorry - this will never end. Your toddler displays all the signs and symptoms of a life-long mental illness called bipolar disorder. He will not outgrow it."

But, to any pediatricians and pediatric psychologists out there, please, don't take his adorable face and my tears to mean I can't handle what you feel is wrong with him. Please, don't fear placing a label on him. You're not labeling him. You're opening a door for me to help him. I came to you for answers, because nothing I did was helping him. I'm his mother; I'm supposed to be able to help him. That's my job. Your job is to tell me what's going on with him. I can't do my job if you're reluctant to do yours.


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Now that we have that out of the way, let's get back to talking the reality of this disorder. Let's talk about the dark parts of it, not because we want to drown in the despair, but because acknowledging the truth of the matter is the only way to begin helping these kids and families. To help my kid, and my family.

As I did in the ADHD/ODD post, I'm going to answer the most common questions we hear about Early Childhood Onset Bipolar Disorder. There will be links, of course, to reputable sources for you to learn more, should you choose to. And I so hope you choose to.

What is Early Childhood Onset Bipolar Disorder?

In a nutshell, ECOBD (acronyms are your friend!) is bipolar disorder that presents in very young children. From what I understand, these children are usually early elementary aged or younger when they begin exhibiting signs and are hopefully diagnosed. In the DSM 5, this disorder is now called disruptive mood dysregulation disorder, but it is one and the same. Many pediatric psychologists may even call it bipolar disorder to help parents put a more familiar name to it, as Taryn's did.

What Are the Symptoms of Early Childhood Onset Bipolar Disorder?

Not every child will have all the same symptoms, but there are a few main ones to look out for, and they do differ from what you'd expect to see in adult bipolar sufferers. Signs that your child may have this disorder include

1. Extreme temper tantrums that often result in violence or aggression towards others/things
2. These outbursts occur three or more times per week and are not consistent with outbursts expected in children of that age
3. Extreme sadness or lack of interest in play
4. Defiance of authority
5. Hyperactivity, agitation, irritability
6. Inappropriate sleep habits
7. Wetting the bed, night terrors
8. Strong, frequent cravings, most likely for carbs and sugar
9. Separation anxiety
10. Impaired judgment, impulsivity, racing thoughts, and pressure to keep talking
11. Dare-devil behavior
12. Inappropriate sexual behavior. Maybe your little guy likes to pull out his private parts and play with them, even though he knows better. Maybe he's a little TOO interested in what makes boys and girls different.

These are just a few of the symptoms, and are actually the symptoms my own child exhibited and continues to exhibit now, post-diagnosis.

Those symptoms sound an awful lot like other childhood disorders, such as ADHD and ODD. How do you know it's not that?

Good question. Many children with bipolar disorder are often misdiagnosed as having ADHD, ODD, or other behavioral disorders. Taryn was originally suspected to have ADHD. He still might - the disorders are often co-morbid. So how do you tell the difference?

The easiest answer to that lies in the mania experienced by bipolar sufferers. The hyperactivity and impulsivity in ADHD sufferers is present at all times. For someone with just bipolar disorder, it's only present during manic episodes. A person with both suffers from increased hyperactivity and impulsiveness during these manic episodes. It can be very hard to tell the difference, so be sure to document and bring it up to your healthcare provider.

What Can I Do If My Child Has Bipolar Disorder?

From one bipolar child's mother to another, the most important thing you can do for them is love them. Love them so much, it hurts. Love them through the hard times, and the good times. Hold them when they're falling apart. Don't hate them for their rages; they don't mean it, and they're probably just as scared as you are, if not more so. 

As far as medically helping them, there aren't a whole lot of options for the younger bipolar sufferers. Part of that is because pediatric bipolar disorders are a relatively new area of interest. Many insurances don't even accept the diagnosis, or if they do, make it difficult to get treatment. You may have to fight for your child, to get him or her the help they need. I am very fortunate in that my children's doctor does not believe in minimizing what the parents see or feel in their children and was willing to refer him out to a neurologist and a psychologist to get us some answers, and that she was willing to fight the insurance company with me to get him the help he needed once he was formally diagnosed.

Speaking of which, treatment for pediatric bipolar disorders is very similar to what an adult would be given. Play therapy is an excellent tool for any child suffering a psychiatric problem. Good communication with schools and possibly developing a 504 for behavior will help your child in the classroom. And yes, medication will at some point become necessary. 

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Living with a child who has a mental illness, which is what bipolar disorder is, can be difficult. It's overwhelming, exhausting, and frustrating. I can't imagine how my son feels on a daily basis. I can't imagine what it's like to be him. I can't imagine it, because I'm not bipolar. What I can do, is love him. Love him even when I'm so tired from trying to help him that I feel numb. Love him so hard, that he'll never feel unworthy. 

What I can do, is teach you about him and other children with bipolar disorder. Because he is not alone, and neither are they. No matter how alone they feel in the midst of their rage, their mania, their depression - they are not alone. 

To my precious boy, who will likely one day stumble across this blog and read this post, if you remember this day - the sound of your mother sobbing at the kitchen table while you rage in your room, the feel of your mother's arms holding you tight as you both cry together when you've worn yourself out, the smell of the hot chocolate she made you when you were finally finished crying - if you remember this day, or any of the others so much like it, while you read this post, know that I will always love you. I will always fight for you. And I will always be so proud of you for fighting your own mind, for continuing to be you, and for just continuing. I love you.