Living the Special Needs Life

If you are a special needs parent, you are probably chuckling at the title of this piece.  Because you KNOW.  You know what it takes to go on a vacation that will probably be more exhausting than just staying home.  But, if you are a new special needs parent, or you are a supporter and haven’t experienced what it takes to go on vacation with a special needs child, here is just one example of what it takes.  To be clear, everyone’s packing and experience is different because every special needs child (and adult!) has different needs, even with the same diagnosis. 

My son, Kai, is now twelve years old but developmentally he ranges in ability levels between 1 ½ and 2 years old.  Traveling with Kai has shifted somewhat over time, but a lot of things also remain the same.  What is not the same are his parents.  We are getting older and it is getting harder.  Our physical abilities have changed over time; we both have to accommodate ourselves and each other for our various challenges and there is only so much a very willing, supportive fourteen-year-old big sister should be asked to do. 

There is a memory that comes up for me every time we try to go anywhere for more than a couple of hours.  When I was a kid, my mother would be packing for a trip for our family of four and at some point, without fail, I would hear her yell across the house in frustration, “I hate packing!!!”  It makes me chuckle every time I think of it.  Not to lessen her burden at the time, but if she only knew what it takes for us. 

We are getting ready to go on a staycation for a few days and we are leaving tomorrow.  We were supposed to go to Galveston a couple of weeks ago, but a huge storm hit so we had to postpone.  The storms keep hitting down there, so we decided to drive just an hour and a half away to Grapevine, which has a shopping mall that is extremely large. This is right up my daughter’s alley.  As a younger girl she HATED shopping with a passion.  Now, its, “Mom, can we go to the mall?”  We live almost an hour away from a mall in rural East Texas and I am sure that this adds to the mystique that is the shopping mall.  So, she is super excited to go.  And they have an indoor pool for Kai, which is his only preferred way to go swimming these days.  And this way, our indoor vacation will not be controlled by the weather.  We will divide and conquer, based on Kai’s ability to tolerate his surroundings.  So, Daddy and Daughter will go to dinner and Mama and Kai might chill at the hotel or go to the pool. Mama and Daughter will go to the mall, and Daddy and Kai will play and make mischief, doing something else. We may all meet up for ice cream.  But we will all go to the aquarium nearby.  On this, we can agree.

I recently lost my part time job working with special needs adults for refusing to remove my Pride bracelet during Pride month.  And, although I am confident that standing up for what is right was my correct path, money is now tighter.  But a year or two ago, my husband opened a couple of different credit cards that offer rewards.  Without fail, we pay off the total every month and this has given us three nights of free hotel stay.  Add the fact that we have been saving for back to school clothes, etc., this trip is almost free, minus the food.  So, we are ready to go! 

NOT SO FAST.  First, we have to pack.  Think about what you do to get ready for a trip.  What do you pack?  What do you pack for your teens/tweens?  What did you pack for them as babies?  We have both.  A teen and a tween that is a baby.  Here, in no particular order, is the current running list of what we need to take, just for Kai.

We need three different types of diapers – inside, outside (yes, we layer) and swim.  Wrestling singlets, one under each outfit so that Kai doesn’t get into his diaper.  We also use them as swimsuits.  Baby wipes.  Grocery bags.  Large trash bags.  CBD oil (used to be for seizures and now to control damaging stimming behaviors with mixed results).  Sippy cups with extra inserts.  Shoes, socks, tops, bottoms.  Two tablets.  AT LEAST five pairs of headphones (because he just loves to break them).  A hot spot.  A back up hotspot.  Homemade food.  In a cooler. With ice. A gallon of milk. Serving spoons.  Dishes.  Teaspoons.  Vanilla wafers.  A knit or crochet blanket.  Two different quilts.  A cleaning kit for if he manages to get through all of our safeguards and smears poop on something in the hotel room (remember, this is a twelve year-old’s body with matching sized poop).  A wheelchair, as a safe place because a stroller that he fits into starts at over a thousand dollars.  His toy laptop, which he must have at bedtime.  Chargers for all of the electronics.  Bananas in case they don’t have any at breakfast, which he may or may not eat.  Multiple pairs of back-zipped pajamas (which cost at least $50 a pair, because OF COURSE THEY DO).  And I am sure there are things that I am forgetting.

We also need to have safeguards in place at the hotel.  Their Wi-fi has to work (although our hotspot and charger might get us through) and it has to be consistent.  We have given up on whether the fridge in the room will be big enough to hold a gallon of milk.  Now, if not, we just keep adding ice to the cooler.  We inform the hotel when we make reservations and then we call again the day before to remind them that we have a son with special needs.  And although he is “non-verbal,” he can be very LOUD.  And that we need to have a room that is convenient enough for us, but also is less likely to disturb others.  They must have an INDOOR pool.  For some reason Kai has decided that this is the only water play he is interested in after a decade of loving outdoor pools and splash pads.  And the trek from our van to our room needs to be as minimal as possible, because can you imagine what this looks like, moving all of this stuff from the van into the hotel, as if we are permanently moving in?  Oh, yeah, and a laundry room.  Which reminds me, I need to pack detergent and fabric softener.  You didn’t think the laundry stopped because we were on vacation, did you?  Diapers=leaks=dirty clothes=wash because there is never enough no matter how much we pack. 

Remember, the above list is just KAI’S stuff and KAI’S needs.  We haven’t packed for the rest of us yet. 

While we are packing, Kai is still Kai, doing his thing.  As I race around the house, trying to gather things together, Kai stops me in the hallway, wraps his arms around me and leads me in a romantic dance.  Yes, I love this.  No, stuff is not getting packed.  Yes, I am smiling. 

I vacuum up the cookies on the bedroom floor.  I go get a few things, pack them and then discover that Kai has just eaten more cookies and the bedroom floor is covered with crumbs again.  Kai poops.  I stop what I am doing, change him and throw the soiled pajamas (you know, the ones that are $50 EACH) in the washing machine.  My husband has finished washing everything, so we won’t worry about the one pair.  Then he does it again.  OK, two pairs.  And again.  Now we are starting a new load. 

I go to assist my daughter with laying out the clothes she is going to bring and return to find a bag I have packed half unpacked.  And Kai is using the cooler as a chair and singing at the top of his lungs using garbled words that I know are to Mickey Mouse’s Choo-Choo Express. 

I put Kai’s favorite blanket in the wash earlier and can’t believe my luck that he has not tried to steal it from the machine and drag it, sopping wet, across the house and back to his bed.  THAT is progress. 

By the way, if you haven’t met him, my Kai has the sweetest smile and is a very affectionate kid.  He also knows when to bring out that SMILE, the one that makes you swoon, when he has been doing something he knows that he shouldn’t. And don’t be fooled, he KNOWS.  Sometimes he will try to fake us out by using an expression on his face that conveys, “I don’t understand, I have a special brain.”  This is complete nonsense.  His daddy has the same smile.  So does Kai’s big brother (we have three adult kids who are on their own).  You gotta watch out for the men in our family.  You’ve been warned. 

We are leaving tomorrow.  The packing is about ¾ finished.  And I am exhausted just thinking of what is to come. 

This gig is not for the faint of heart.  Sometimes I let go of things in other parts of my life because I have to keep my eye on the prize, my son.  There is only so much time, energy and resources.

Don’t let this frighten you.  It is a tough gig but it is the best job in the world.  Remember that romantic hallway dance?  I know you have your own version of this.  And you are NOT ALONE.  If you feel like you are the only one(s) in the world doing this, it’s because we are all at home, doing it too.  I promise, we are out here. 

Are there days where I feel like I can’t go one step further?  Sure. 

Tomorrow’s not going to be one of them.  Because we are going on vacation, damn it.   

Oh, crap, I forgot the toothpaste.  And toothbrushes.  And…

Want more? Check out my book, Moving From Strength, on Amazon!

I have been exhausted for months. My son who has special needs sometimes sleeps through the night and sometimes doesn’t. But I have not been able to recover from a less than restful night like I used to. I chalked it up to home schooling the kids for fifteen months during the pandemic since my husband is fragile. I blamed getting older for not springing back. I thought I just needed a break. But when I would get a full night’s rest I would wake up, do stuff for 2-4 hours and then crash out on the couch. Hard.

It has been difficult for my family. It is difficult for my son, who needs attention periodically throughout the day. My husband hasn’t been able to get anything done. My daughter has been wondering if her mom is sick.

Truthfully, I have been wondering the same thing. Am I sick? But, too tired to pursue answers, I did nothing, hoping that THIS TIME, this nap would give me some relief.

I know that neglecting self care is the exact opposite of what I and my family need. But sometimes it all just seems to be too much.

My husband finally convinced me/forced me/pushed me to make a doctor’s appointment.

I knew the doctor would want to do blood work and I know that you have to fast for 12 hours to do it. But I am so wiped out, I also knew that without coffee, I wouldn’t be able to explain all of the issues I was having and get them across in a clear manner. So I DRANK THE COFFEE, and decided to do the blood work the next day when all I would have to do is show up and not have to clearly explain anything. I also MADE A LIST because so much was going on, I knew that I would never be able to remember it without something to refer to.

I got some test results back today. I am extremely low in Vitamin D and B12, both of which can cause fatigue, brain fog and more. Shots, supplements, getting more sunlight and a few diet changes are in my immediate future. So glad this is all it is. It could have been much worse.

But I also know that I didn’t have to suffer this long, that being proactive with my health would have resolved this sooner. I could have been better (or at least improved) long ago. I dropped the ball when it came to my self care.

It’s OK. I picked it back up again.

I know that it is counterintuitive to put yourself first when you are a special needs caregiver. It seems that the obvious answer should be that they come first and you come last. But it isn’t true. YOU NEED TO COME FIRST. So that you can be strong, healthy and awake for as long as possible. For them.

I know this. But I didn’t do it. So it has been more painful than it had to be.

Do yourself a favor. Address things as they come and DON’T PUT IT OFF.

Wishing you so much joy.

I plan to be awake soon.

Want more? I have written a book, just for you, the special needs caregiver. It will support you, uplift you and guide you through it all. Click the link to check it out!

Although we have been mostly grounded during the pandemic, in the not too distant future, travel is going to become a way of life again. You may be thinking about seeing distant family or friends or just taking a fun trip somewhere when it is safe. Worried about travel with your special needs child? Don’t be. I endured a worst case scenario and came out on the other side. You will be ok!

I have done a lot of traveling in America in my lifetime. I have taken tons of flights, trains, public buses, a few Greyhound bus trips, subways, freeways, you name it. And there are a few trips that stand out in my memory.

One such trip was the time that I was on a flight from New York to L.A. and an extremely obese woman (multiple hundreds of pounds) stood in the aisle for the entire five hours. This, in itself, would have been fine except she smelled like she hadn’t bathed in a decade. In fact, the entire cabin reeked. All of the passengers were complaining to each other, things were being sprayed, all to no avail. We just had to endure it. It was awful.

Another trip I recall is being on a Greyhound bus next to a very pregnant woman who was holding a toddler in her lap. The toddler must have been all of maybe one and a half years old. She was happy and jumping up and down in her mother’s lap, bumping her belly all the while. I held her for the mom. For about 10 hours.

I have invited people with newborn babies to sit next to me during flights and told them that whatever happened, it would be totally fine. No worries! I was an ally.

I am really, really glad that I had these events in the karma cue, because it was my turn to travel with my son with special needs. And, man, it was a doozy.

This was about 3 or 4 years ago. My husband and I, along with our daughter, Amaya, who was about 8 and our son, Kai, who was about 5, were sitting in LaGuardia airport in N.Y. getting ready to fly home to Texas. Our flight out had gone really well. My husband and daughter sat in front of my son and me so that if my son kicked, he would be kicking a family member and not a stranger. He had been a bit loud and had dropped maybe 25 vanilla wafer cookies on the floor but honestly? It was a dream. So I was ready for a repeat.

In case you don’t know, Kai has about 9 different special needs diagnoses, but he presents as low-functioning autistic. He stims a lot, rocking, tapping and making noises with the occasional head slap or throat punch for good measure (only his own throat). He loves to use his tablet but refuses to use headphones. So, our section was busy, but Kai was happy and no meltdowns occurred.

The terminal at LaGuardia was HOT. Something was wrong with the air conditioner. This did not bode well for happy kids. Since we had time to kill, we decided to get a snack. The kiosk nearby had Greek yogurt, one of Kai’s favorites at the time (he has since completely rejected it, although not after this incident, but some time later). My husband bought the yogurt and whatever everyone else wanted and we settled down to eat. The yogurt container felt cold and the yogurt smelled fine. But the shelving unit I took it from had no doors and since the terminal was hot I can only think that it wasn’t as cold as it should have been. I have no other explanation for what happened next.

Kai was getting too big for a standard changing table. At that time, I still used it in the terminal restroom and I braced one of my knees under the table to give it extra support. He did just fine. I had no idea what was coming.

I fed him the yogurt. He was happy. And, in about another 30 minutes, pre-boarding started.

Our plan was to have my husband and Amaya sit in the very first row and have Kai and I sit behind them in the second row. As we walked to the front, with our endless gear, stroller, tablets, blankets, diaper bag, electronic toys and everything that it takes to go anywhere with a child with special needs (it is like moving to go ANYWHERE), I suddenly smelled a poopy diaper. I was torn. If I went to the restroom now and changed him, we wouldn’t be the first to board and our plan for seating would be blown. But if I waited until I got on the plane, I could probably change him really quickly in the bathroom standing up before it got too crowded. Or across the seats in our aisle. I went with plan B. If I had only known.

I was carrying Kai, a big five year old, and I had the diaper bag backpack on my back and my crossbody purse on under that. My husband had our daughter and ALL of the other stuff (remember, it’s like moving). We walked down the tunnel to board the plane, stepped on and all of a sudden, the smell intensified. I realized that this was not a normal event right at that moment. As everyone was about to board the plane.

I ASKED FOR HELP. The nicest flight attendant in the world told me that they do, in fact, have changing tables in the bathrooms on airplanes. They do? I had never seen it before. She brought me into the bathroom (remember, holding five year old on the front, huge backpack on the back, purse underneath) and showed me that, indeed, a changing table could be pulled out from the side and extended over the toilet seat. Who knew?

Of course, Kai didn’t fit. He was five. Most five year-olds are long out of diapers. But, given the very tight space to work in, I somehow twisted him into a pretzel and got him on it. Kai is generally a happy guy, so he just smiled away. The best flight attendant in the world smiled and tried to close the door to give us privacy. It wouldn’t close. Not with all of our gear.

So, we were at the very front of the plane, right where boarding was commencing. People are walking right by our open bathroom door. And I am singing to my son, trying to keep him calm. And changing him.

The yogurt was bad. Kai had diarrhea the likes of which I had never seen before. It was all over his front, all over his back. His clothes were absolutely gross. Did I have a change of clothes? Are you kidding me? Several.

I asked the best flight attendant in the world for a trash bag. The smell was filling the cabin. People were walking past us, wrinkling their noses and commenting on it. After the best flight attendant in the world brought me a huge trash bag, she did something that I have never seen a flight attendant do, before or since. She OPENED THE OPPOSITE DOOR to where people were boarding. To create a cross breeze. For the smell.

I threw out Kai’s entire outfit (there was no way to save it in the condition it was in), did magic tricks and contortionist moves to clean him up, went through almost an entire package of wipes (of course I had more!) and, finally, got him changed.

Somehow, during all of this, my husband and daughter had gotten the first row seats but had failed to save the ones behind them (possibly due to all of the other stuff my husband was managing). Kai and I ended up about ten rows back. I got him into the window seat, sat in the middle seat next to him and got organized. It still smelled and people were still talking. Kai was still happy, babbling and rocking and playing with his tablet. I was EXHAUSTED.

It was then that I realized that his blanket, his favorite thing in the world, that he absolutely had to have, was ten rows ahead of us with his daddy. I couldn’t leave to get it and I couldn’t call my husband because phones were turned off. So I pressed the call button and a flight attendant came (we’ll call her the OTHER best flight attendant in the world). I explained the situation, and asked if she could possibly walk up ten rows and ask Kai’s daddy for his green and white blanket. She gave me a big smile and took off. Later, my husband said when she approached, she announced, “I’m looking for Kai’s Daddy. Kai needs his blanket.”

Well, we made it. I introduced Kai and myself to the people in front of us and behind us and explained what could possibly happen if Kai stimmed or kicked and asked them to please let me know if he disturbed them. I would try to do everything possible to fix it. They were lovely and said nothing but nice things during and after the flight. And Kai was of course happy, but he sure wasn’t quiet or still. Kind folks.

Did this experience suck? Yes, it did. But it doesn’t keep me from traveling with my son. And it shouldn’t keep you and your child with special needs from traveling either. Here’s why.

It is simply your turn. You know all of the times where it was someone else’s turn? When the baby screamed and cried on your flight and you were patient? When someone was ill on your bus and you kindly endured? Why do they get a chance to travel and possibly disturb others but not you?

They took their turns. And you get to take yours.

Most likely scenario? You won’t have to deal with what I went through. But if you are not up for the adventure (because it WILL be an adventure), just say no. Maybe not forever but for now. You know your limits and your child’s limits. Just remember, your child might surprise you and do well! If you are going to go for it, here’s how to prepare for the trip:

1. Envision every possible scenario that you are worried about. Really dig deep down and imagine your fears. Write them down. And then prepare for them the best you can. Pack accordingly.
2. Pack EXTRA of everything!
3. Speaking of packing, make a packing list for each individual traveling. Ask someone familiar with your child to review the list and see if they can think of anything that you forgot.
4. I have never done this but I read about it and it is brilliant. Someone who traveled with their special needs child printed up notes explaining the situation and put them inside little bags of chocolates. She then passed them out to everyone around them on a flight. I LOVE this idea! It starts the whole trip with some good will. I have no idea who to give credit to for this, but it is an awesome idea!
5. If you are able, bring another adult to help!
6. Identify yourself to the staff. Even if your child obviously has special needs, make friends right at the beginning. Their help can be invaluable.
7. Schedule down time both before and after the flight, bus trip, whatever. You are going to need it and it is better to under-schedule and be spontaneous than to overschedule and feel pressed for time.
8. Expect the unexpected. Yup, after successful traveling in the past, it happened to me! But remember EVERYONE gets their turn. It is just your turn and your child’s turn when it comes to the unexpected during travel. I know it is easier to stay home. But don’t move from fear. Prepare and go for it!

Have I traveled since this incident with my son? You bet I have! Kai has continued to do well during travel, showing this to be an isolated incident.

And, no, I will never buy Greek yogurt at the airport again.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

Have you seen the awesome Shriner’s hospital commercial starring Kaleb? It melts my heart every single time. If you haven’t seen it or just want to enjoy it once again, here is the link:

What did you see when you watched it? Kaleb, of course, is the shining star. But when I watch it, I always seem to look past him. I see a mother who is a caregiver for a special needs child. She is perfectly groomed, hair and makeup done, beautifully dressed before she even wakes him for the day. I see a beautiful home, clean and well organized. I see his Mom lift and transfer Kaleb to his wheelchair, and again to his seat in the car (which looks expensive and freshly washed). She does so with ease and strength. And she is INCREDIBLE. She is cheerful. She is calm. She is EVERYTHING THAT I WANT TO BE (Yes, I know it is a commercial. But still.).

And then I look around my own home. On any given day there are loads of laundry in some part of the cleaning process. It is “clean enough,” if I can manage it. My children are bathed, fed and dressed in clean clothes but I wouldn’t say they had Kaleb’s neat haircut or spiffy sense of clothing style. My son’s wheelchair is sitting right smack in the middle of the living room because I needed space and haven’t put it back in the van yet. I don’t remember the last time I washed the van. There are shoes, toys, books, technology, blankets and more scattered around. It certainly isn’t what you would call neat.

But you know what is exactly the same? Kaleb’s smile and my son’s. Both beautiful, joyful, breathtaking.

I have to ask, who is this incredible woman? This model of everything I want to be in the background of the commercial? How do I get to be her? How did SHE get to be her?

I wanted to learn more about her. So I found this video. They won’t let me put a link here, but you can copy and paste it into your browser. Then go to this page and scroll down and watch Kaleb’s story: lovetotherescue.org/no-small-wonder/

Osteogenesis Imperfecta. Brittle bone disease. Kaleb has broken bones almost 200 times. And, on the second video, I feel like I really see his Mom. His caregiver. And I know, once again, that a slice of life is just that. Tears in her eyes. Beautifully groomed but maybe tired this time. Showing that her love for him is so strong but that the journey can be challenging. NOW I feel like maybe she and I have something in common.

Everyone has their good and bad days. And no one lives in a commercial. I admire her so much. And, I remember that we are all human.

So I remember to cheer on people’s strengths and support people’s struggles. And that what I see is certainly not the whole story.

You are OK. Don’t compare your whole life to someone else’s slice of life. You are more than enough.

WANT MORE? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

Today is my son, Kai’s birthday. He is nine years old and developmentally he is between 1 1/2 and 2. He is amazing and bright and brilliant and beautiful and I may be very, very biased.

Upon reflecting on our long journey through the years of endless hours of therapies, doctor’s visits and hospital visits there are little events that come up in my mind that make me smile. Like the time they wanted to test Kai’s IQ (inconclusive, but we knew it would be). Kai refused to participate in most of the test. He just wasn’t interested and didn’t want to be bothered. And then, he got pissed off at the doctoral candidate administering it, who just wouldn’t leave him be. So he marched up to the table, angrily slapped his finger on the right answer and then stalked away because he was just done. Or the time he was sitting in a swing at speech therapy and the therapist would push him back and forth a certain number of times and then he would have to touch the word “more,” on an IPAD to get her to push again, a precursor to speech. Kai hated speech but loved the swing, so he compromised. Kai knows exactly what he likes and doesn’t like and it shows. And, eventually, he could say the word more. After many, many hours of work. After learning it on the IPAD, in sign language and pointing to a picture of the sign.

So many moments.

We had heard that ABA (Applied Behavioral Analysis) therapy might be good for Kai, so off we went to tour a facility. Let us just say that the director and I did not hit it off. I am only speaking about THIS facility and not about others or ABA in general. But I wouldn’t allow my son to attend sessions there for anything in the world. Aside from the instant dislike I felt at first meeting, the big thing this woman said that really rubbed me the wrong way was that we would begin sessions that would help Kai to change his behavior so that he would blend in with other kids. Kai has 9 different diagnoses but the big three are PVL (periventricular leukomalacia), Duplicate Chromosome 16 and Autism. He is what they call low functioning. Kai is constantly on the move, tapping, bapping, twirling, rocking, throat punching (just himself, no one else), clapping, spinning and more. He makes loud noises and joyful sounds. When you enter a room, you know that Kai is there. He is beginning to talk but is still what is called emergent in this area. So he gets what he wants by a few words but more by gestures, leading you to what he wants, moving your hands.

Can you imagine if my son blended in to a room full of other kids? Can you imagine not being able to see that Kai might need special attention because you couldn’t tell that he was different? Maybe if the director had asked me if this was a goal in our family, I wouldn’t have been so bugged. But she seemed to assume that we would WANT Kai to blend in, as if it wasn’t OK that he was different.

Not only is it OK that he doesn’t blend in, I truly believe that my son was BORN TO STAND OUT. That his mission in life is to spread joy with every sweet smile, every song he sings with great enthusiasm, if not clear words. Kai is an educator, although he is not aware of it. He teaches people how to open their minds and broaden their horizons. To move past feeling uncomfortable and adjust to the concept that not everyone is the same and that this is more than OK.

Kai has made so many strides over the years. He has worked so hard to be able to do the things that he is capable of doing. And we are so proud.

So to my son, on this, your ninth birthday, know that we could not be more proud of who you are. You keep being you. Everyone else will figure it out.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

We are approaching nine months of self quarantine. My husband is the one who is medically fragile in our home so we pull together as a family and we all stay home. From school. From the store. From the world. Not from work, we are both stay at home special needs and typical parents. Suffice to say that we live at work, 24/7.

It is tough. But we can do hard things. And so, we do.

My son, Kai, is eight years old and has nine different diagnoses both medical and educational. He also has a smile that lights up a room, is an up-and-coming verbal communicator and has a funny sense of humor. In a pre-Covid world, he attended an all special needs campus. In the current quarantine world, he learns at home. This is mostly accomplished using a tablet with occasional virtual visits from his speech therapist. His verbal skills are blossoming, something that took hundreds of hours of therapy and was always possible, but certainly not guaranteed. We are very excited about this achievement.

At home, we limit the space that Kai spends time in. It is impossible to be always aware of what he is getting in to and so we have crafted our space so that our brains don’t have to be ever vigilant (but, of course, they are). Kai has the run of our bedroom during the day, letting himself in and out of it as he wishes. It is his room, too. And his typical ten year-old sister’s. That’s right, we all cosleep in the same room but everyone has their own bed. Yes, I am aware that you probably think I am nuts. It’s not for everyone. But it works for us.

Anyway, it is a given that Kai will rearrange the room to his liking and every evening, before bed, I put the room back together. If you think that this is crazy, I challenge you to put the room back together EVERY time it is rearranged. You will quickly learn that this is all you will do, all day long. It is like having a toddler in a bigger body. We baby proofed and let him have at it. So that we can have a bit of down time. If you are a special needs parent, I trust that you can totally relate to this. If you are not a special needs parent, you may be saying that I should train him not to do these things. With all of our challenges, we need to pick our battles. And honey, this ain’t one of them.

Last night, I walked into the room and beheld the sight that Kai had created. It looked like a linen store and Santa’s Toy Shop exploded. All three beds were stripped. Pillows, blankets, sheets, stuffed animals, electronic toys, the click-light stars and moon, socks and more were all mixed together. Some of the objects had traveled from one side of the room to the other. Chaos reigned.

But my eyes immediately went to the window. I didn’t even register anything else. And I smiled.

Kai had left the curtains up. He loves to rearrange his environment. He will pull the curtains down and then lay across my nightstand, with his head on my pillow and sun himself in the window while watching his tablet, like a cat. Every evening, when I come in to fix the room before bed, I have to put them back up. It is a simple task, but somehow, I hate doing it.

On this night, I didn’t have to do it. Surrounded by all of the destruction I breathed out a relaxed, deep breath, and feeling like I had received a wonderful Christmas present, I began to put the room back together.

What does this special needs Mom want for Christmas? The list includes living forever to be able to take care of my son, not having to fight with people to get him what he needs, being able to sleep until my body wakes up naturally (with the years of sleep deficit, it could take a LONG time), more and heavier weights so that I can continue to get stronger to not get hurt as I care for him, better access to resources for our family and the list goes on and on.

But it never would have occurred to me to add the curtains to the list. Maybe Kai knows what I need most of all. Not having to put the curtains up and hugs and kisses from him feel like the best Christmas gifts of all.

OK, and I need chocolate. Anyone? Anyone?

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

I’ve been having a hard time. I am a special needs Mom and someone has been overstepping their bounds, being a bully, stressing me out. I have been trying to deal with it the best I can but it has seriously put a damper on my energy and my mood. So it also affects parenting my child with special needs (and, of course, my typical child). And my husband. And our lives together which are currently 24 hours a day as we quarantine ourselves for going on 7 months with no respite, as we are a fragile family.

In the usual world (before pandemic), being a special needs parent has often been stressful, even if it is the best job in the world (and it is). In the current world (during pandemic and long term quarantine), the stress levels have skyrocketed. My free time is non-existent and even when not directly caregiving, my husband and I are “on call,” every single minute. There is no couple time. When our son gets up for the day at 3 AM and he doesn’t go to school, there is no recovery time for us. So what am I currently shorter on than even usual? Energy, alertness, patience, the ability to be resilient, the ability to not let things affect me deeply. And SO MUCH MORE.

Still, I tend to give the benefit of the doubt. I tend to give perhaps more chances to people than they really deserve. I tend to think that people have my best interests at heart. So, even though I have a line that, when crossed, means I have been pushed too far, I take a lot before this happens. Usually.

And so, as I was suffering through the indignation, the hurt and the stress and pressure of a narcissistic sociopath in my life, I reached out to my brother and sister-in-law for support. They listened to me. They comforted me. And my beautiful, brilliant sister-in-law told me this, “You are not required to accept anyone’s bad gifts. No matter who they are.”

Nourishing food for thought.

What is a bad gift? It’s something that is being handed out to you that is hurting you. Stressing you. Pressuring you in an unhealthy way. Leaning on your heart. And sometimes it is gift wrapped to be represented as a gift. A good thing. How do you know it’s not? It hurts. It stresses. It demeans.

Even when you are not a special needs caregiver, you don’t need bad gifts in your life. But as a special needs caregiver? You, literally, can’t afford them. There is only so much YOU.

What do YOU want to focus on? Your amazing special needs child? Other positives in your life?

Or do you want to expend your energy trying to make sense of bad gifts? Trying to make sense of the toxic people that are delivering them? Here’s the thing. You can focus on ANYTHING you want but you can’t focus on EVERYTHING. There simply isn’t enough time. And you have a really big, important job to do.

So give yourself the big OK to give the bad gifts back. And, just maybe, get rid of (or greatly minimize contact with) the toxic person who is giving them to you. After accepting the bad gifts, the abusive behavior, for much too long, I separated myself. It was, and is, hard. But my son with special needs deserves a whole, happy, mentally healthy Mama. So does my typical daughter. My husband deserves a wife who stands up for herself and doesn’t allow the abuse to continue.

And you know what? I deserve it, too. And so do you.

Don’t forget to reach out for support from your people. You know the ones. It is a sign of strength, not a sign of weakness, to access your resources.

Thanks for the advice, sister-in-love. It truly made a difference.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

I haven’t written here in a few months. Why? Because I have been doing what you are doing. Special needs parenting, at home, no respite, no school. For MONTHS.

What is happening in our world? Well, we are all still here. My atypical 8 year old son is happy and, actually thriving. My typical-brained 10 year old daughter has been designing her own upcoming YouTube channel so she is engaged and working every day. Everyone is healthy, COVID-free. But we are also self-quarantined all of the time. My husband is a fragile person, a recovering liver patient. So we are home almost always. We have our groceries put into the back of our car in the store parking lot. We pick up our medicines in the parking lot as well. And every day we go for a drive to nowhere, for about an hour. The kids bring their tablets, we bring a hotspot and we just drive. We pass by lakes that we won’t be swimming in any time soon. We drive down country roads. We listen to the radio.

And then we head back home. And the next day, we do it again.

We have a swimming pool underneath our car port and most days we spend about 45 minutes playing in the water. Both kids love it. It is our daily diversion.

So why haven’t I been writing?

Simple. Time.

My husband and I are ON. There is no down time. Even when we are “relaxing,” we need to be available for our son in a way that we don’t have to be for our daughter. We need to make sure that he is safe, keep track of what he’s getting into around the house, change diapers, and try to figure out his needs and wants when his speech is emergent but not even close to consistent. Also, he is not sleeping through the night again. So when we lay down to sleep, we may be getting back up again in 3-5 hours. There is no diversion. They don’t go to school. We are fragile so we can’t have a baby sitter. Can’t have our adult kids help when we need a break. There is just… us.

Honestly, sometimes I feel like I am living in Groundhog Day.

Yet, surprisingly, I am also enjoying this time. They are minutes and hours and days that I wouldn’t have gotten with them otherwise. Extra cuddling, extra love, extra affection, extra… them.

But I miss ME time too. And US time with their Dad. And because we are so strict about isolating away from the virus, there is no change in sight as we start online school in a few days. I miss CrossFit, which I was just starting to adapt to. I miss shopping for thrift stuff, coffee out, not being nervous just passing by someone in our small town. I miss the travel that we usually do in the summertime (not this year).

So, yes, I am affected, as I am sure that you are too. But, especially for us caregivers with lower functioning kids, time at home can also be the norm. So it’s different, but it’s not. Except for the respite. I could really use a day off.

But we are making it through. We talk about what we are going to do when the pandemic ends, the things we will make up for. We talk about places that we want to go, adventures we want to have, foods we want to eat.

I think about the goals for my son (and also, my daughter). His speech is flourishing, his OT skills not at all. PT is something he could really use right now. We need to get more focused, work on specific skills, read more, get off the tablet more.

And we will.

But for now, we are just us, at home. We are doing what works to get us through.

And that’s OK.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

People are saying that this time at home during the pandemic is a wonderful time to teach children life skills.

As special needs caregivers, we already do that.

People are saying that this is a time to bond with your children and spend extra time together.

We are already joined at the hip.

People are saying that you can learn a new skill during this time in quarantine.

We are already highly skilled – we had to learn super fast and get it right to care for our angels.

People are saying that NOW is the time to teach our children at home.

We already do that. And we do it over and over and over, presenting in many ways until it is learned (or it is never learned but we keep trying).

People are saying that now is the time to create a schedule for our children to follow at home.

We already do that. Or we don’t, by choice. We know what works for our children with special needs and what doesn’t. We do what works and continue to do what works.

People are saying that they are struggling in isolation.

We already know this struggle. For we often feel isolated and alone on our journeys, although nothing could be further from the truth. It is just that our peers are out there doing it alone in their own space, so we often never meet.

People are saying that it is hard to raise a child with no respite while in quarantine.

We already know this struggle. For, in our world, the care that we give is so specialized to our children that we often don’t trust others to do the job we do. Or no one wants to do it. Or we can’t find someone who is able to do it. Or we can’t afford it.

People are saying that now is a good time to take on a huge project. Like cleaning out your home, creating, cooking, baking, sewing, reading, learning to play an instrument.

We already know how to take on a project. Often, our children are our projects. They are our passion.

If you want to take on something extra, do it. But if you don’t, it’s OK.

What you do is already more than enough.

You are a rock star.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

Part of living the special needs life can be picky eating. Due to sensory issues, personal preferences, behavior outbursts when the status quo changes and more, your child may have only very specific foods that they want to eat each day. I know my son certainly does.

So, what do you do when in this time of pandemic and less supplies than the norm, your child’s favorite food just isn’t available?

My son, Kai, is eight years old and has eight different medical and education related diagnoses. He spent an entire year choking on baby food (entirely pureed, not chunky) at every meal to the point that he needed intervention daily. As in, if we interceded and failed at clearing out his airways, he could have died. Let’s just say that I got really good at the hook method (which was what was advised at the time).

Eventually, Kai mastered eating baby food without choking with the help of a feeding therapist and we moved on to other soft foods. He is also able to eat things like cookies, cake, muffins and ice cream without issue now. But those are mostly treat foods. His main diet at this point consists of the Wal-Mart store brand version of Chef Boyardee canned pastas (up to six cans a day when he’s in a growth spurt), applesauce, pudding, fresh banana, 1% milk, store brand vanilla wafers and sometimes a bit of water or juice. Of course, his dad and I recognize that this isn’t the healthiest diet but it is a work in progress and we are extremely grateful that he no longer chokes when eating.

Kai receives school meals in addition to what we send from home with the goal that he will try new foods if he is presented with them every day. At school, he has apparently tried a cinnamon roll and french toast sticks with success. Again, not the healthiest. But between texture issues, stubbornness and preferences, this is where we are and we are actually thrilled at the progress he is making.

So what to do during a pandemic, when the Wal-Mart brand pasta is totally out of stock and we are stuck in the house 24/7? Especially when there is no parenting break, even for school or therapy and we are exhausted?

We know as special needs parents that many things are trial and error. So, the first thing we tried to do is make something similar, homemade. It was rejected after many texture explorations on Kai’s part with his lips. The pasta was never tasted. The sauce I snuck into his mouth, also to be rejected.

The next thing we tried was to buy a similar product. The only thing available at first was Chef Boyardee mini ravioli (Kai likes Wal-Mart brand macaroni with beef in tomato sauce best and then the same brand mini ravioli second). When presented with this, Kai ate it but wasn’t thrilled about it. He absolutely knows the difference between the brands. Also, after a couple of cans of this, he started getting diarrhea, which is not an issue with our usual food.

The third thing we tried was to back off on canned pasta all together and try to get him to taste other things. Homemade chicken and dumpling broth – rejected. Homemade spaghetti – rejected.

Finally, we were able to get our hands on some Chef Boyardee mac and beef in tomato sauce. Kai eats it enthusiastically, although not as happily as his usual. Big sigh.

You know that the situation isn’t over, though, because availability is inconsistent and will be for the foreseeable future. So what lengths am I willing to go to? I will let him eat more treats if that is all he will eat. I will continue to try to make new concoctions and present them. I will purchase things that I normally wouldn’t keep in the house (cinnamon rolls, I’m looking at you) and I will try not to take this so seriously if Kai eats less healthy stuff until this pandemic is over.

Between home schooling, no breaks, erratic sleep, lock down, self isolating, etc., I know that I need to be more flexible than ever. After all, if WE as caregivers feel uncomfortable with the changes, can you imagine how OUR SPECIAL NEEDS KIDS feel when they thrive on consistency and suddenly their world shifts?

Do your best and let the rest go. Breathe. As long as they eating SOMETHING, ANYTHING, they will not starve to death.

Smoothies, anyone? Served on a spoon, of course. Maybe we can sneak in some fruit!

What challenges are you and your child with special needs going through during this pandemic? Please share in the comments below.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!