Navigating marriage, motherhood, a child with special needs, work, a social life, and life's ups and downs with faith intact.
As I sit here, in the waiting room of a therapy facility, as the rain is pouring down, while my son is working hard to learn to talk, walk, eat, and socialize like the rest of us, while my daughter is at daycare because I don’t want her to spend her days in a waiting room, I’m nearly in tears. I’m fed up. I’m frustrated. I’m overwhelmed. I’m feeling defeated. Boohoo, poor me, huh?
Wear a mask! Wait, don’t wear a mask. No, wait, do wear a mask!
Don’t you dare worship with others.
No more going into the grocery store. Wait, now you can go to the grocery store, but don’t bring your kids.
This has all been going on for months , but now you better be wearing a mask when you enter this establishment, but only starting on this specific date.
School will be in session, but you better not even set foot in the building. No, not even on the first day! No, not even if your child is starting kindergarten; her very first day of school.
No, students don’t have to wear masks, but we will try to social distance.
Sports? Oh yes, of course sports! You can still come watch, even; just social distance yourselves.
Here are the numbers and statistics! Oh, but wait, those aren’t right…
If you die, you had COVID19.
Facts don’t matter.
Numbers are skewed.
I’m so tired. So tired of having that feeling in my gut, when something feels wrong/off. The anxiety and shame I feel when I feel like I am not standing up for myself.
Am I scared? Yep. I’m scared to stand up for myself and jeopardize my children’s ability to receive the care they need. The constant turmoil and sick I feel inside sometimes becomes unbearable.
I do feel bad for those in the position of making the big decisions that affect everyone. They will never be able to make everyone happy.
I am fully aware that it could be worse. But I am damn sure it could be a hell of a lot better, too.
Maybe it all seems petty to you, but all of these small things add up, and add up quickly.
I just want to walk my daughter into her classroom on her first day of school. Not for me, for HER. She will never get that moment back.
I want to be present, as I see fit, inside the institution responsible for my child for the majority of the day.
I want to be present as my nonverbal autistic son receives therapy and gets to know his future teachers.
I’m their parent.
I know we are in unprecedented times, but these kinds of things just seem like something I shouldn’t have to fight for; especially if masks and social distancing work.
I’m sick of giving in to make everyone else feel comfortable. My feelings and beliefs matter, too, as well as others that think and feel the same way I do.
Is it so much to want facts? To live MY life as I see fit? I absolutely do not want to do any harm unto others, but I feel things have gotten so one-sided.
I am not selfish because we don’t see things the same.
Summer is here. We’ve already used almost an entire bottle of sunscreen. We all have tan lines. That’s how it should be.
I am happy to say that our local swimming pool is OPEN, with precautions in place. I know just how lucky we are. Most public pools throughout the country are closed down amid the Covid-19 panicdemic. Going to the pool with my two children has and always will be an adventure. I have to admit, until this year, we had only been to the local pool MAYBE twice and my oldest is five-years-old. This was only partly due to our busy schedule. The other part was ME. Having two small children close in age made going to the pool terrifying. The fact that one has zero danger awareness and the other is quite cautious and that neither of them can swim makes for a wild time. Now that they are older and I found them floaties they can wear, life at the pool has gotten much easier. I have succumbed to the fact that I will most likely never be the mom that gets to sit on the side of the pool reading a book and soaking up the sun. I will always be the mom in the pool. I’m okay with that. Fortunately, both kids love the water. As I stated, Gus is fearless! He will float/swim himself anywhere and has zero fear. Ada is very cautious, doesn’t like to get her face wet (especially not the eyes), and usually has a tight grip on me or someone else. What is a sensory seeking little boy’s favorite part of the pool?: The jets where the water comes out on the side of the pool. He will find one of those and hang out there as long as he can, placing his hand(s) in front of it. Ada took swimming lessons this year and has gained a lot of confidence. I really want Gus to learn to swim, but will have to maybe wait until he is a little older and find somewhere that specializes in teaching those on the spectrum. The hardest part of going to the pool with the kids, at least when I am alone, is leaving. I have to get the kids and myself dried off, gather all of our things, and get everyone’s shoes on all while holding Gus’s hand. If I don’t, he will take off and jump right back into the pool.
I also set up an inflatable pool in our yard. Both of the kids enjoyed that. What did a sensory seeking little boy enjoy most?: Leaning onto/out of the pool so the water would cascade out to make mud. He also enjoyed getting in and out and bolting at a dead run. A good workout for me.
Speaking of bolting, we are doing our best to try to have a privacy fence installed around the perimeter of our yard. It would be such a relief to be able to be outside and play with BOTH kids not have to worry about Gus running out into the street or getting into any other forms of danger. He could then RUN without having to have his little hand in mine and burn off that excessive energy he carries around with him at all times.
While we are on the topic of excessive energy…I always talk about Gus’s energy level. People kind of brush it off in thinking “He’s a boy. They’re wild and energetic!” I’m like “No, you do NOT understand. I am talking holes in the wall, biting holes in my curtains, literally climbing the walls, like nothing I have ever seen before!” We can’t have lamps in our house because he will break them. I am talking hyperactivity like I have never seen. Anyway, one of his therapists and I were talking…You know how they have to be so very careful about what they say because they are not “doctors” and can’t diagnose things per se…Well, she finally admitted to me that she has worked with well over 100 kids on the spectrum and Gus is “most definitely the most active” she has ever worked with. She told me that she has worked with a lot of kids with a lot of energy, but apparently Gus takes the cake. Honestly, I feel vindicated! That being said, it has been recommended and we have decided that Gus should see a clinical psychologist again. Clinical psychologists diagnose and treat emotional, mental, and behavioral conditions. A clinical psychologist gave Gus his diagnosis of ASD/SPD. We have no idea if there is anything more to his behavior than his ASD/SPD, but we want to rule anything else out. His abundance of energy and “hyperactivity” along with his extreme sensory seeking tendencies make it very hard for him to focus and pay attention to learn. Some days are definitely better than others, but we really want to make sure we are doing everything we can and dealing with and treating everything we need to for him to live his best life. Getting him in to see the clinical psychologist is going to be another of the many “jump through hoops” processes we come across in this journey; ESPECIALLY, with Covid-19 going on. I have to get an appointment with his primary doctor just to get the referral to a clinical psychologist and then hope they are taking patients anytime in the near future. It’s all a big headache, but we will get it done.
ASD is a SPECTRUM. No two individuals with a diagnosis of ASD are the same. Gus seems to be quite the little mystery. His therapists have told me more than once that he makes them work and think and really flex their skills. He can exhibit a behavior for a few weeks and then all of a sudden it’s gone for a few weeks, only to reappear again. Every time we meet a new physician or therapist, I know they think I’m nuts because explaining Gus is not easy. There are no simple answers of “yes” and “no” to their questions.
Right now we are dealing with a lot of crying. Gus is “minimally” verbal. Therefore, he cannot tell me, or anyone else for that matter, why he is crying. He will sometimes cry for up to an hour at a time. It’s real tears. A sad cry. Could this be a medical issue? Is he in pain? Is this an attention seeking behavior? Is this an automatic behavior? Is he being denied access to something he wants but cannot portray? Can I just for a second express how amazingly hard it is to watch your baby cry and have no idea how to make it better? It’s terrible. I am as “in tune” with Gus as a person can be, but that doesn’t mean I can always figure it out, and to be blunt, it sucks. We have a functional analysis (FA) on the schedule for this next week. A functional analysis is a completely controlled environment in which you try to provoke the undesired behavior. So, in our case, the undesired behavior is crying. This will at least HOPEFULLY help us narrow down if this is behavior related or perhaps medical. Either way, we are doing the FA, as well as having him be seen by his primary physician AND a pediatrician that specializes more in children on the spectrum. Of course, this is all pending referral and Covid-19 hoorah-doorah.
In awesome news, Gus is learning! He knows some shapes and colors. Don’t get me wrong, he is always learning, but I am talking preschool-type learning. He understands so much more than people give him credit for. Just because he cannot say a word absolutely does not mean he does not know what a word means.
We get words out of him here and there; primarily, food and drink requests, although he generally has to be prompted to do so. He very much prefers physical communication. He would prefer to take you and show you. He would prefer to place your hand on what he wants or needs.
We are still working on potty training to a point with minimal success. A lot of this is on me. Ideally, I would like him to be potty trained by the time it’s time for school, but I also have other goals I find more important and appropriate that he is more ready for in the meantime. It will all come together and work out.
We had a lot of fun this weekend celebrating America. I never know how Gus will react to fireworks, but this year he loved them. In typical Amanda fashion, I could be seen with a punk in my mouth like a cigarette trying to light it with a lighter with a jumping and wild Gus holding my other hand with Ada looking on fairly impatiently. Thankfully, as usual, I eventually recruited the help of my family. Grandpa, Grandma, Aunt Emily, and Uncle Anthony were to the rescue. Gus likes fireworks a little too much, and would take off after them. Dane eventually returned from work and put Gus on his shoulders while he lit off some Roman candles, and Gus thoroughly enjoyed that. We had minimal meltdowns and tears, and only a couple of physical altercations.
We also attended the local firework display our volunteer fire department puts on at the lake. That went much better than last year with just a few tears, scraped knees, and some physical altercations in the wagon. The wagon was a God send, as we could strap Gus in there to watch. Fireworks happen when it’s dark and late, and Gus does not get “tired”; he gets absolutely wound up until he passes out from exhaustion. He and the rest of us enjoyed the show, and both kids were asleep by the time we got back to town.
We also attended a family get-together and celebrated some postponed birthdays. On the short trip there, Gus somehow got a bloody nose that went unnoticed until we pulled up. Therefore, I spent several minutes in the 100 degree heat trying to get his face cleaned up and his nose to stop bleeding. He had smeared blood over his entire face and had blood on his shirt. Thankfully, Dane was present to help hold him. Have I mentioned the hyperactivity and that he HATES having his face touched? That was an adventure that very nearly had me in tears.
Gus turned FOUR in June and his sister turned FIVE in March. It’s hard to believe.
As always, I have a whole lot of other things I would love to put into words sometime, but for now this is it.
Enjoy SUMMER, and I will try to get back to blogging on a more regular basis. It’s good for me.
As with most situations in life, our family’s situation at this time is a little different than most.
I see all the posts and memes about social distancing and being quarantined, and realize I come pretty close to living that way all the time, anyway.
I am going to be totally honest in admitting that I would love to be quarantined to my home for weeks. Quite frankly, I get sick of the go, go, go of our schedule, and would just love to sit back and slow down for a few weeks. Granted, I would rather the world not be in this state where quarantine and social distancing is necessary in the first place.
What you have to understand, is that going to my son’s therapies is a necessity for his well-being and for our family. It would shock and amaze you how much a child with nonverbal autism can regress in a very short amount of time when taken away from therapy and routine.
I am so thankful that it is noticed how essential the services provided by LifeScape and similar places are, and that they remain open during this uncertain time. They are most definitely “essential” to families like ours. They have many precautions in place to keep those of us coming and going healthy and from spreading germs, even if they did judge me SO HARD for that one sneeze that one day.
Gus is missing speech and OT therapy, as well as his time with the special education teacher through/at the school with it being closed down. This is hard because his speech therapist at the school was his very first, and he absolutely adores her (as do I). On a happy note, we are going to try these therapies via video conferencing this week. With Gus, things have to be pretty hands-on, so we will see how it goes. I know he will be excited to see their faces!
Things, thankfully, have not had to change much at all for any of us, except our daughter. Preschool is shutdown. Release time (her church class once weekly) is shut down. She is sure missing her friends and teachers.
With all of this change to her schedule, you would think it would really mess with the rest of our schedules, especially since with all of the health precautions going on at LifeScape and her being unable to come to therapy with mom and brother or go to work with dad.
This is where the real MVP shines…our daycare provider! Before all of this, Ada already attended daycare one day a week, and for a few hours the other days of the week. Now, she just goes to daycare (where they are also implementing extensive safety/health precautions) until we (as in the world) figure this all out and know what the next steps will be.
Things have changed, in that it is harder to find groceries, toiletries, and cleaning supplies, and that grocery stores and other shopping centers are filled with panic stricken and rude individuals. We have definitely experienced that first hand.
Ada had to spend her 5th birthday at home this last Saturday. While it is disappointing that she didn’t get to do what she really wanted (Chuck E. Cheese and an icecream shop), and that it has to be so hard for her to understand, I think she still had a great day with family.
While I am not an “essential worker or employee”, I do see myself as pretty essential to my family right now. We are doing our best to stay healthy – physically, mentally, and emotionally – as well as keep those around us safe. It’s not always black or white or this or that.
I’m not here to give my opinion or find out yours. (Granted, mine shines through some when trying to explain what’s going on with me right now… This is a blog after all.) I just thought I would share what this time looks like for my family, since none of the things being shared or talked about regarding quarantine and such really apply to us.
I do feel more stress and anxiety. A little of this stems from fear of the actual virus, but the majority of it stems from my disappointment in society as a whole. I am not going to go into detail. No time for that. I will say (type) that I am scared for the future in seeing how things have played out during this pandemic. I, more than once, have had my finger hovering over the “deactivate profile” button on my social media account these last few weeks.
All I can do is my best and keep the big picture and the big guy in the forefront of my mind.
Parking lot update. My Kindle Paperwhite lives after a wild ride down the highway (with fairly minor damage, considering) Not pictured: The shattered plastic corner.
As I sit here at my big, takes up too much space in my kitchen, kitchen table with six chairs around it, that I bought on sale years before I had children, I realize and accept that I don’t really need it anymore. I bought it in the first place because: #1: It was on sale, and #2: It had plenty of room for my “future family”.
The only thing I ever knew, without a doubt, my whole life, was that I wanted to be a mom and have a big family. I also knew I did not want kids right away when I was very young because I wanted to get some adventures, partying, and good times out of my system before. I figured I had plenty of time to make it all work out.
As I’ve mentioned before, when we finally decided to grow our family it didn’t exactly work out how we’d planned. There were fertility issues on my end, and we had to use medical intervention to conceive our first. Then, our second came as a surprise, no medical intervention necessary. That had me excited! After our first, I went through a stage where I treated each moment as if it would be my only with my only child, but then number 2 was on the way, and my dreams of a big family were back “on the table”. (Haha, see what I did there?)
Things were hard at first with two very small children, but I knew, and as everyone kept telling me, things would only get easier with time as the kids got older. I was beginning to think I was crazy or just weak, because I swore things were getting harder, not easier! That’s because they were.
Raising kids is hard. The hardest job you’ll ever have, if you do a decent job. It is also the most rewarding job you’ll ever have, and a job you get to keep lifelong.
The older my kids get, the harder it gets to navigate because their differences become more obvious, not just in general, but to each other.
ME: “Ada, go play with your brother.” ADA: “But mom, he doesn’t talk!”
ME: “Ada, Mom is busy, go play with Gus.” ADA: “But he doesn’t play right!”
ME: “Ada, apologize to your brother.” ADA: “He never says sorry to me!”
ADA: “No, Gus isn’t a part of this game.”
ADA: “I had a dream about our family, and….” ME: “Was Gus there, too?” ADA: “No, mom, Gus is never in my dreams.”
ME: “Ada, it’s time to clean your room.” ADA: “I didn’t make the mess, Gus did!”
ME: [After setting a timer at the supper table for 5 minutes and then letting Gus get up.] ADA: “Why doesn’t Gus have to sit at the table?”
These comments hurt my momma heart. They’re not easy to hear. They’re not easy to address…
Kids are literal. Kids are honest. Kids can seem brutal, but kids are innocent. Kids are observant. Kids are like little sponges. They learn and adapt quickly. Most importantly, kids are resilient.
Lucky for us, Ada is all of these things, as well as very kind-hearted and brave, extraordinarily articulate, and has a great capacity to try to learn and understand.
To say things can seem “unfair” in our household is an understatement.
I’m not an advocate for things always being fair in the first place, kids are all different and require different care, but it’s complicated when things such as house rules, which should apply to all, have to be made different and adapted in our situation. To boot, our kids are really close in age, so there really, typically, shouldn’t be much difference in what is expected of each of them. But for us, there is…
Attention, Please!
I can most definitely see, especially from a child’s perspective, how we seem to give Augustus more attention. The truth of the matter is that we do. We have to.
Each individual child, in any given family, having time alone with their parents together and individually is important. In our family, this is not just important, it is absolutely necessary on a regular basis.
Ada comes to therapy with Gus and I once weekly. I let her participate as much as I can without it being detrimental to what Gus is doing.
I can see how hard it is for her. Gus gets to go to the Sensory Gym where there are swings and slides and foam pits and rock walls. To Ada, Gus is getting to play at an indoor playground, and essentially he is. The difference is that swinging and spinning help Gus to regulate and calm down, while swinging and spinning have the opposite effect on Ada. Adults barely understand sensory processing disorder (SPD), so I sure don’t expect a 4-year-old to. Gus gets to sit at a table and get treats and praise for doing things that seem extraordinarily easy to Ada. Heck, she can do those things! Why shouldn’t she get some treats, too?
While I feel it is important for Ada to see what Gus is working so hard to do, I also think it is important for her to not be in a waiting room or in the therapy environment the majority of her childhood. That’s why we choose to send her to daycare when she is not in preschool and we are at work or therapy with Gus. It may not be the most money-savvy choice, but in our opinion, it’s the right choice.
We make it a priority that Ada gets to spend time with both of her parents individually and together without her brother around. Whether it’s something as simple as getting to go feed the cows at work with dad, or getting to run errands with mom; we make sure it happens. Sometimes she gets to have a lunch date with mom or dad while the other stays at therapy with Gus.
Advocacy & Understanding
That all being said, no one is going to know or understand Gus like his sister. More than once in a public setting someone will say something to Gus or ask him something and be waiting for a response when Ada pipes up and says: “Gus has autism, and he can’t talk.” She doesn’t say it in an irritated or annoyed manner. She says it in a very matter of fact, somewhat proud, and a kind of “Um, hello, you should know this…” type manner.
That’s right. Gus does not talk (yet) and is in fact nonverbal. We as a family have learned to adapt and communicate with him in different ways. Including Ada.
I can tell that it most definitely distresses Ada when Gus is upset and we cannot understand what is wrong. She does her best to comfort him. She will ask our Amazon Alexa to play “Wheels on the Bus” for him. She will turn on a favorite television show for him. She will turn nursery rhymes on and hand him her tablet. She will offer him something to eat. She will give him a hug. More often than not, Ada is met with resistance by Gus. He might swipe what she is offering out of her hand. He might even shove her, pull her hair, yell at her. Nine out of ten times she understands. It’s nothing personal, he is trying to communicate.
Ada has most definitely learned to adapt and play with Gus in a way that is fun for the both of them.
Don’t think Ada is putting in all of the work on that end, though. We work hard everyday with Gus at home and in therapy to learn “appropriate play”. He is getting better all the time.
The Big Question
Will I be getting a smaller kitchen table? The answer is a hopeful “Yes”. Haha. Sorry, sorry…
The big question: Is our family complete? Are we done having children? The answer: I honestly don’t know. I do know my dreams of a big family are not realistic or what’s best for our family now, and I am wholly and fully okay with that.
You see, I look at it in a few different ways…Gus is always going to need me more and on a different level than a neurotypical child. God knew my dream, and while it was presented to me in a different way, it makes sense. It makes sense to me, anyway, and that’s all that really matters.
The reason I brought up the table, and the big family dreams, is because it’s all something I had to learn to accept (also actively have a say in, if that makes sense) due to various reasons and situations throughout my adult life. It didn’t happen overnight. I am, in fact, still in the process. My kitchen table is/was a symbol of that dream.
DISCLAIMER: I am fully aware just how weird I am, but I am not afraid to let my freak-flag fly!
I am ever evolving, and things are always changing.
As always, I truly and sincerely thank you for taking a peek inside my life and my mind by giving this a read.
-AMom’sFaithUnbroken – Amanda
It’s been a while! Like two and a half months since I’ve even looked at my blog. I have so much I should be doing around the house right now since I am home, but it will be good for me to get everything typed out and give everyone an update on life. I know I don’t see family and friends near as often as I’d like to, and you all show us so much love, you deserve to hear what’s going on, too.
Augustus and I are logging 1000+ miles a week going back and forth to therapies at LifeScape in Rapid City and at the school in Philip. As the title of this blog implies, it’s worth it. It’s not easy and not always a lot of fun, but worth it.
Gus does ABA therapy at LifeScape five days a week, and also does speech, OT, and PT there once weekly each. He has speech at the school once weekly, too, and also spends some time with the special education provider at the school once weekly.
ADA
Miss Ada is in preschool three days a week, and ends up going to daycare four days of the week. Since Augustus and I are out of town and Dane is at work (not in town), Grandma Lisa and Aunt Emily are our saving grace with this. They make sure Ada gets picked up from preschool and taken to daycare each day. She loves preschool, and loves everything about daycare except nap time. Gus and I have to leave before preschool starts a couple of days a week, so Dane has to stick around to be able to get her to preschool (Again, must praise his employers on being accommodating.)
Ada comes to LifeScape with Augustus and I once weekly on Fridays. At first it was really hard (on her and me), because she felt left out having to be quiet or wait in the waiting room while Gus was working. I can see how what Gus is doing and learning looks like a lot of fun to her. Fortunately, the therapists are great, and we have found ways to incorporate Ada into things and to allow her to have some fun, too. Gus has lunch as part of his therapy, so Ada has lunch with him. She also gets to come along for sensory breaks in the sensory room, which is a lot of fun for both of the kids. She has gotten better and understands better now that she’s been tagging along for several months now.
I can’t believe she will be five in just over a month. She is a fan of everything superhero right now. Her Skye “pups” are her favorites. She is super into “Sam Sandwich” (a Disney short) and has a newfound love for “Ben & Holly” (a show on Nick Jr.) She has also been into the Power Puff Girls, which I can get behind, as they were something I watched as a kid. She can write her name and most numbers, although tends to get a few of the numbers backwards. Her drawing skills seem to improve all the time. She is still talking more than anyone I’ve ever met. She is crazy articulate and clever. I love when she makes up songs to sing to us.
We work hard to make sure Ada has plenty of attention along with alone time and fun with mom & dad.
She is becoming such a good helper. Her tender heart and fierce attitude are seriously an inspiration to me. When her brother is having a hard time, she is the first one to try to comfort him. She will bring him her tablet and turn on some nursery rhymes for him, or find him a blanket, or ask “Alexa” to play him “Wheels on the Bus”, his favorite. She has also come a long way in understanding some of the harder things that we have to deal with regarding Augustus’ behavior. He sometimes lashes out at her, and she has really learned not to take it personally and that most likely he is trying to tell us something and is frustrated about it and does not know how to relay that other than lashing out. My mommy heart aches in the times she says “But Gus can’t talk!” or “Gus doesn’t play right!” Fortunately, most of the time, she is patient with him. One of their favorite games to play is when Ada follows Gus around and acts and plays like he does; jumping, wrestling, squealing, etc. Personally, I think they are perfect for each other as siblings.
Ada saw a dentist for the first time this month. She has always been pretty good about brushing her teeth. Unfortunately, she has such a petite and tiny mouth that all of her teeth are very, very crowded in there. Her teeth look pretty healthy, but on x-ray it turns out she has a lot of cavities and decay between her teeth, especially her back teeth. The dentist told her that: Number one, her teeth are so crowded in her mouth that even brushing and flossing could only do so much, and that number two, a lot of dental stuff is actually hereditary. I was never sure if that was true or not. It sounds like it most definitely is. Dane has a family history of “bad teeth” and has “bad teeth” himself. Poor Ada has been blessed with her mama’s eyesight and her daddy’s teeth. I am shaking in my boots a bit, as Ada is going to undergo a dental procedure this next week at the Same Day Surgery Center in Rapid City. They are going to put her all the way under, as in IV anesthesia. She is so tiny, and it just scares me. While this route was not necessarily totally necessary, it was our best option. She would have had to have 4+ appointments at the dentist to take care of everything that needs done, and the dentist and I felt that would be fairly traumatizing for her. Plus, with the way her teeth are looking now, she will have plenty of appointments in the future. We don’t want her terrified so early in the game. I am of the opinion that if they are baby teeth “Oh well, they will fall out anyway.” BUT the teeth Ada needs fixed are her molars, which she has many years left with. Wish us luck, say a prayer, send us good vibes.
AUGUSTUS
The biggest thing we are working on now with Gus is potty training, and oh boy, it’s an adventure. I must sing my own praises about potty training Ada. I started very early, in fact, too early, and had to wait a bit and had great success when it was time. Gus, now that’s a very different story. First of all, he’s a boy. I don’t care what anyone says, boys are harder to potty train. Then you add in very limited communication, sensory processing disorder, developmental delays, and autism and it’s straight insanity, in my opinion. Plus, he’s a big kid, so a little kid potty just isn’t an option, so we are kind of tied to the bathroom a lot. Truth be told, my bathroom looks like a war zone.
I do have to say, that while I am entirely overwhelmed and somewhat discouraged with the process, I am thankful it is even an option to try at this point in the game. I was not sure if he would be 3 or 5 or 10 or if he would never be ready to try potty training. I am at a point in the process where I am not entirely sure if we are making progress or not. I am confident that one day he will be potty trained, though.
Right now, it’s basically me taking him to a toilet and sitting him there every 40-ish minutes. I put him in underwear right away in hopes he would dislike being wet/dirty. He seemed to dislike it, at first, but now I have kind of been sticking to Pull-Ups because I am beginning to think he just really does not care, and in part because all of his underwear are dirty and I haven’t had a chance to wash them. Ha.
I show him a PECS card with a picture and the word potty on it. I then take him to the bathroom, and before walking in, I show him the card again and get him to look at it and either hand it to me or say something (anything, truly) to acknowledge that we are going potty. Why? Because the real trick in this whole process is going to be getting him to let someone know when he needs to use the bathroom. I was told he could catch on quickly or that it may take many, many years.
Positive reinforcement is HUGE for Gus. His favorite food ever is fruit, especially blueberries. Therefore, I use blueberries for positive reinforcement. He gets one for trying and a few for peeing on the potty. I tell him all the time that if he poops on the potty he gets the entire container of blueberries. Silver lining – blueberries are better than candy.
It’s also hard, because a lot of it is on ME. I have to get him to the bathroom, work with him to try to teach him to help me get his pants and underwear down, and then I physically have to sit his 40+ pound body on the toilet. Surprisingly, he sits on the toilet fairly well most of the time, which I was definitely not expecting. Getting him to keep his hands on his lap and not in the toilet, or flushing the toilet, or playing with anything he can reach is another story. I am also supposed to keep data of every potty experience we have and if he was wet/soiled/dry and if he went and the time, etc. etc. While this will be helpful information, it’s a lot of freaking work and time out of the day. I did a pretty solid job the first couple of weeks, but weekends I tend to give up for two reasons. One, I just want a freaking break. Two, I need to get things done!
He has had some success with peeing in the potty. I have yet to get him to go #2 on the potty.
Like I said, I cannot decide if he is really ready. I know I said I was ready, but at this point I’m not sure that I am either.
The older Gus gets, and the more therapy he receives, the more aware he is. Hallelujah! BUT the more aware he becomes, the more frustrated he becomes in regard to communicating. Therefore, we have had some behavioral type issues regarding this, as well as some behavior we (as in our family and his therapists) truly cannot figure out.
It was recommended I take him to the doctor to rule out any type of health concern that may not be obvious to us. This included a trip to the dentist, which actually went over phenomenally well. They told us with him liking to chew on things and using chewelry that they were surprised how straight and healthy his teeth were. They chose not to do x-rays or a cleaning or anything as not to totally traumatize him, especially since things looked good and he is only 3. Baby steps. He was cleared of any underlying health or dental concerns.
Just take a minute to think about this…Can you imagine how hard and frustrating it would be to be a small child and be in pain or discomfort and not be able to find a way to let an adult, parent, or someone that could help you know? It’s heartbreaking to me. Whenever he get’s sick or seems to be not himself I really worry. Thankfully, I am his person and spend basically all of my time with him so no one knows him as well as I do.
It’s also very hard when your child physically harms you. It’s a feeling that’s hard to describe. I don’t mean when a toddler or small child tests the waters and slaps or hits you. I am talking about when Gus is in a mood and struggling and hits me in what seems to be anger or frustration. I have been slapped, scratched, kicked, hit, and often get my hair pulled. He will sometimes grab my glasses and seemingly try to crush them in his hands. It is very hard not to take it personally. He is not mad at me or hurting me out of spite, he is trying to communicate.
When this happens, he often grinds his teeth and puts his hands into fists and makes a lot of not so happy sounding noises. Sometimes, it is pretty easy to figure out what’s going on. Perhaps he is being denied access to something he wants. Perhaps, he wants something or needs something and cannot tell someone. The other confusing “perhaps” is that perhaps it is an automatic behavior.
As you are probably aware, persons with autism almost always have “stims”, or things they do that just make them feel normal or “regulated”. For instance, Gus flaps his hands and does a lot of jumping. Those are stims. When a behavior continues to happen and there is no obvious trigger, one starts to wonder if it could be automatic behavior, kind of like a stim.
We are in the process of working on figuring a lot of that out. There are certain tests/experiments (one being a “functional analysis”) we will go through to try to see if we can address some of the “problem behaviors” that we cannot link to denied access or a want or need.
ME
I have a full-time job in being a mom (as all moms do), but I also feel like I have a full-time job in traveling and working in therapies with Gus. I am gone from home a very minimum of five hours a day, most often longer, and spend money in doing so, not make any. I have to have beyond amazing organization skills just to remember to bring everything we need to therapy (double the things now that we are potty training), as well as keeping appointment times straight, and everyone in the family’s schedules running smoothly without conflict. Thankfully, I have always been organized. All along I was being prepared for this life, I say.
I really struggle to keep up at home. While we aren’t home but some late afternoons and most evenings, it takes no time for the house to be in total disarray. We have a sensory seeker up in this bish. He lives for messes and to play in them. He gets into absolutely anything and everything he can. Disorganizing and throwing things on the floor are a favorite pastime of his. The bigger and more able bodied he gets the crazier it gets. I am not talking about regular “kid getting into stuff” business. I am talking sensory seeking full body involvement havoc, here. I am talking a literal curtain climber! Anyone that has been over to our house for any length of time or watched him for a bit will understand this to an extent. It’s seriously 24/7 other than when he sleeps, and he only sleeps when he passes out from absolute exhaustion. I have to keep an eye on him or have him in hearing distance at all times or deal with the consequences.
As I mentioned, I have always been huge on organization, and having a clean and organized home really helps my morale, but I have had to chill on this aspect more than I want or would have ever expected to.
People, I am straight exhausted both mentally and physically basically the majority of the time. But you know what? I’m okay. Do I have some really bad days? Hell yes. Do I have some really good days? Absolutely. I’ve got this. I can truly say that I have more good days than bad.
Shout out to those of you I vent to when I need it.
This blog post started as one thing and kind of morphed into another. Therefore, I will make this part 1 of more posts to shared at a later date.
Background History
My husband and I experienced fertility problems, and tried for a very long time to conceive our first child. With the help of a fertility specialist, and fertility drugs, we were finally able to conceive and welcomed a baby girl; now a clever and sassy 4-year-old preschooler. We were told our chances of conceiving again (naturally) were VERY slim, and that if we ever decided we wanted another child that we would most likely have to go about the same route we had with the fertility treatments, and that birth control wasn’t necessary if we were okay with potentially conceiving again, although very unlikely.
I so cherished those first months with my baby girl, and even quit my job and decided to stay home with her full-time no matter what sacrifices had to be made to do so. I knew that this would likely be my only child, and children were my dream and passion always. I was so blessed.
My husband and I left for a weekend getaway for our 6th wedding anniversary and left our 6-month-old baby girl overnight for the very first time. Lo and behold, about a month after this weekend getaway, I found out I was pregnant! I was absolutely SHOCKED, awestruck, taken aback, and even scared. I had no idea what my husband would think, as we (mainly he) had sacrificed a lot for me to be able to stay home with our firstborn, and things were not easy financially. Long story short, he was totally surprised and happy and the supportive husband I so needed.
My second pregnancy was really tough on me physically and emotionally. I had a lot of back issues and was trying my best to be my best for my babygirl. My body wasn’t even close to being back to feeling “normal” at just 6 months postpartum, and I definitely wasn’t even close to being emotionally back to “normal” learning to be a new mom and then having the crazy tiredness and hormones of early pregnancy on top of it.
Trust me, I know that people have children close together all the time, and it’s not that big of a deal. It was just such a shock to my system, as I was basically convinced I would only have one child in hopes of maybe trying for another years down the road.
After the initial shock I was very excited and so looked forward to adding another to our little family. I was even more excited once we learned our newest addition was a little boy. How perfect!
Just fourteen months after the birth of my first, I was holding my second born in my arms.
It wasn’t easy, as my oldest was not yet walking, and many a day I had one in a baby carrier and one in my arms; two cribs, double the diapers, and very, very little sleep. Little did I know, this wouldn’t even be the hard part. The hard part was yet to come.
I always heard from others that having children close in age was extremely hard in the beginning, but would become much easier once they were older, as they would be close friends and a huge help to eachother.
I looked forward to this. I couldn’t wait to see them play together and hear them giggle and chat in the adorable way young children do.
My little girl has always been a talker and still is. She started talking early and this seems to only increase seemingly by the day. I am serious in telling you that I have never ever met a child as articulate and chatty as this little girl.
My son, at first, was an overachiever it seemed. He was rolling over onto his belly at just two weeks old. He took to crawling earlier than his older sister had, although did take his time to start walking; just like his sister.
He started jabbering and before we knew it was saying words. The word he said I remember most was “grandma”.
To be honest, I took this time for granted. I was busy, things seemed to be progressing as they should. I just assumed we were on our way to hearing his cute little voice on the regular.
While I cannot remember an exact time (an estimated guess is all I can give), when he was somewhere around 14 or 15-months-old I began to notice he quit saying words, like completely. I always just thought he was “a man of few words” and liked to keep quiet since his sister did plenty of talking for the both of them, and then some.
Also of note was just how wild and active he really was. I kept getting the speel “he’s just a boy“. At first, I took this to heart. I am from a family of all sisters and primarily female cousins. I hadn’t a clue about what to expect from a male child. After a while, though, it just seemed unreal, out of control to me. He was always, always into something; fearlessly climbing and jumping, wrestling, head-butting, you name it. Fearless.
He was the absolute messiest eater I had ever seen. I felt like I needed a pressure washer for the highchair and kitchen after every meal and snack. He would squish food, rub it all over himself and his surroundings, throw it, all of that and then some. It seemed to only get worse over time.
He was an eater! He was born ready to eat and kept up that appetite from that moment on. His appetite has never changed. He often eats more than I do in a day. The thing is, he began to be particular about what he would accept and eat, which was a pretty sudden and significant change. (see this previous post.)
Then, it was if he had never known his name. I say this because he virtually stopped responding to his name entirely. It was near impossible to get his attention. I was really starting to get concerned. While he was still happy, healthy, and extraordinarily wild, things seemed to be regressing.
A lot of things went through my mind. All of those words we hear, but choose not to acknowledge until we really have to: regression, developmental delays, ADD, ADHD, autism, mental illness, etc…(see previous post)
I KNEW something was wrong and had been for a while. My mommy heart KNEW.
The straw that broke the camel’s back (so to speak), and really made me accept that we needed to look into things, was when he started jumping and flapping his hands (aka stimming).
I had basically already diagnosed him myself before he was even 18-months-old. That seems crazy, but since I had just been through seeing the milestones of his older sister, it was pretty easy to see where things weren’t even close to the same as they were with her. I, in fact, called his primary care physician and raised my concerns. The doctor was fairly skeptical, and I could tell he thought I was just overreacting, as I have always been a very observant and concerned parent. He did reassure me that he was sure I knew best, but that we just as well wait until his 18-month-Well-Child exam, since most times diagnoses of delays and such weren’t even done until the child was a bit older, anyway.
I made an entire written list of my concerns for the doctor before our visit. To say he was impressed by my observations is an understatement. To this day, he still praises my attentiveness and early intervention.
I will save you the story of the specifics of diagnoses (it’s quite a process and a real headache), but just after my son turned 2-years-old, he was diagnosed with nonverbal autism spectrum disorder and sensory processing disorder. While I was totally expecting this, it was different once it was actually on paper. The silver lining of it being on paper, was that now we could seek out resources and help at the very susceptible and tender age of two. Early intervention is key.
Needless to say (type), I have yet to experience my children having a verbal conversation, or to see them playing in a traditional manner.
Balancing the act of raising a neurotypical child and a child with autism so close in age is THE REAL CHALLENGE.
No more crib. Gus on his new big boy bed (futon mattress) in his bedroom and big sister, Ada, checking things out.
Well, I have another milestone to share. While it may seem mundane, a post about a kid transitioning from a crib to a bed, you have to understand that for our family THIS. IS. HUGE.
My son, Augustus (Gus), is 3-years-old with diagnoses of autism spectrum disorder (ASD) and sensory processing disorder (SPD). He is a sensory seeker. He is the size of your average 5-year-old. He is very tall, very strong, and very fast and clever. Sleeping issues tend to go hand-in-hand with these diagnoses.
Up until yesterday, Gus was sleeping in a crib for his safety, and for mom & dad’s peace of mind and sanity.
Yesterday, Gus fell asleep on my lap. I carried him to his crib and put him down. I heard him making some noise in there, eventually, squealing and squawking, but that’s nothing new. I was in my bedroom putting clean laundry away when I heard a loud bang that almost sounded like someone had come into the house. I took a peek at the front door, and no one was there. Then, I heard a doorknob turning as I walked by Gus’ bedroom door on my way back to my room. I opened his bedroom door, and he ran out of the room. I instantly called my husband to tell him the day was here.
Why is this such a big deal for our family? Why were we dreading this day?
Gus does not just go to bed at bedtime. When he gets tired, he gets extraordinarily amped up and wild. I know this can be a common occurrence in younger children, but for Gus it is at another level. A whole different level. He jumps, screams, squeals, squawks, crashes into things, does headstands on the furniture, chews on things, spins, etc. This is all related to his SPD and seeking sensory input. Normally, he seeks input to feel “regulated” or “normal”. When he is tired, he seeks even more input because he is tired and feeling even less input than usual.
Along with the issues due to him seeking sensory input, he also has some sleep issues likely related to autism. He wakes up often throughout the night. When he wakes up, he usually does some jumping and squealing and sometimes reaches toys or books from his crib and plays for a bit before falling back asleep. That’s where the crib really came in handy. He had the safety of being isolated to just his crib and was not able to wander around.
I have no idea why he never tried or wanted to get out of his crib before yesterday. He has been big enough and physically able to do it for a couple of years. I, personally, think he liked being enclosed in his own little space. He is big enough now, that he is nearing the point of outgrowing his crib, so maybe it became a bit too enclosed for him. I guess I will never know.
Subsequent to all of this, I had to figure out what Gus could safely sleep on or in and how to keep him in his room at night.
I took his crib apart and out of his room right away. My husband thought I was jumping the gun, and told me as much. My thought was that I would rather have him crawling out of a bed close to the ground than jumping out of a crib to get over the rails. Mama knows best.
I do have a bed frame for a toddler bed in the basement, but it is up off the ground, and Gus is about to outgrow his toddler mattress anyway. I considered moving the bed from the spare bedroom in the basement upstairs, but decided against that. I eventually came up with what I felt to be the safest solution: a futon mattress! I figured it could be laid on the floor, therefore, no danger of falling off of a bed while jumping in the middle of the night. BINGO!
Now to figure out how to keep him in his room at night…I had a very nice video monitor with 2 cameras when both of my children were infants. I got that out only to discover the monitor was broken. Then, I remembered that I had a spare doorknob safety cover. We already have a few around the house to keep Gus from escaping outside or down into the basement without us knowing. So, I put a doorknob safety cover on the inside doorknob to his room. I felt kind of awkward about this. If I wasn’t doing it for his safety, I definitely would not have done it. Without it, he would wander throughout the house and get into all kinds of mischief and danger while the rest of the family is sound asleep.
Doorknob safety cover.
Go time…bedtime came around and my husband and I took Gus to his bed, sat him down on his mattress, said nighttime prayers, shut off the lights, and shut his door. I was anxious not being able to see him without actually going into his room and potentially waking him up. Per the norm, he jumped and crashed and squealed and did all of the things he tends to do before he goes to sleep. After it was quiet for a while, I decided to go take a peek. To my surprise, he was sitting on his bed looking at a book, calm as could be. I waited a while longer and just had to check again. On second check, he was awake and snuggled up by his mattress and against the wall. That made perfect sense to me. He likes pressure, so being able to squish himself between the mattress and the wall is probably super comfortable for him. The third and final peek, he was in that same position but sound asleep. I left his room and proceeded to give my husband a high five and an “I told you so!”.
As usual, Gus did wake up a few times in the night. I can’t say how many times, because in this household we are all so used to it that we can generally sleep through it, thankfully.
I heard him wake up this morning. Thankfully, he wakes up happy most every day. If he wakes up SUPER early, I generally just leave him in his room (crib in the past), until it is an appropriate time to have everyone awake for the day. He just spends that time squealing, jumping, playing, and looking at books. Now that he has free reign of his room, I was not sure what I would find upon opening his bedroom door in the morning. I could hear him playing with his firetruck toy this morning (sirens). I bet he is happy to be able to have access to all of is toys when he wakes up SUPER early. Anyway, I opened his bedroom door, and he was lying on his bed playing with a toy. As usual, he had pretty much all of his books off of his bookshelf, but oh well. That would have happened at some point in the day anyway, even if he had been sleeping in his crib.
Our first night in a big boy bed was a TOTAL SUCCESS. I have to be honest and say that I absolutely was not expecting as much. I was so nervous about it, but tried to keep a positive attitude. I was just so scared he would somehow hurt himself. I’m not overly confident. It’s only been one night, after-all.
Seriously, if you made it this far, thanks for reading this. If you didn’t make it this far, I don’t blame you (although, I guess you’ll never read this). I totally understand if you think I am totally ridiculous, and maybe I am. I just like to share what things are like in a life I never expected. I hope what I share not only entertains, but educates. How great would it be if everyone were more aware and tolerant of ALL disabilities and differences?
Tearful, tantrum-filled goodbyes are common during a child’s earliest years. Around the first birthday, many kids develop separation anxiety, getting upset when a parent tries to leave them with someone else. Though separation anxiety is a perfectly normal part of childhood development, it can be unsettling.
Separation anxiety rears its head most often at the 8-month to 1-year-old mark; give or take. At first, most parent’s find it unsettling, and often feel just as upset as their little one. Later on, it becomes more of an inconvenience. They all eventually grow out of it, though.
My 4-year-old daughter is most definitely a mama’s girl. She went through separation anxiety as an infant, and again pretty significantly when she first started daycare. I expected as much, and was totally prepared to deal with it the best I could. While it was hard on both of us, it also made me realize and feel just how deeply we were connected, even at her young age. There is nothing like the love for and the love from your child. Nothing.
My now 3-year-old son was/is a totally different story. As an infant, he cried when he was hungry or had a physical need, but he had no reaction or preference to who it was that fulfilled that need. He would happily sit with or engage with anyone. He never once fussed when I left him somewhere; not even his first day of daycare. He always seemed to be in his own world and really didn’t care who was around, as long as his needs were met. He never really made eye contact with anyone, and never had any reaction to someone saying his name. It was often near impossible to get his attention. As time went on, this was all definitely a BIG red flag.
We expressed our concerns to his doctor, and he was eventually diagnosed with Autism Spectrum Disorder and Sensory Processing Disorder.
Did I worry about whether my son and I truly had a connection? Of course I did. I don’t know anyone who wouldn’t have the thought at least cross their mind. I was in no way being shown that I was anything other than a service provider for him. That’s hard to type, and hard to admit, but I want to be completely transparent. It in no way changed how I felt about him though; NO WAY. He was still a part of me and his father. Although he was different from my other child, he was chosen to be mine. He needed me, and I needed him.
My son is a “seeker”. This comes along with his diagnosis of sensory processing disorder, which is a diagnosis that very often goes hand-in-hand with autism spectrum disorder. His senses do not appropriately process the input of things (ex: smell, taste, pressure, sight/light, etc.). A seeker is seeking more input; more pressure, more light, more noise, more taste. Therefore, my son loves to rub on or against anything. He slams into things. He chews on any and everything. He spins. He flaps. He squeals. He licks. He jumps and jumps and jumps. He likes to push his head against things. He likes to be squeezed (on his terms). He likes to rock back and forth. He likes to feel and squish his food. He likes to take his food out of his mouth after it’s chewed. He likes to do anything that provides him with sensory input. Therefore, he is very accepting of hugs and sitting near people for sensory input. He will even wrap his little arms around my neck and return a hug. For this, I am very thankful. He will even let me kiss his cheeks. As he becomes older and more aware, these hugs and kisses mean more and more because they are reciprocated and not just appreciated for the sensory input. In those times of struggling to feel connected, his sensory seeking was a welcome recourse.
The opposite of a “seeker” is an “avoider”. An avoider avoids all forms of sensory input and attempts to lessen input. For example, they may plug their ears or need headphones to deal with loud noises. They often have aversion to certain textures and feelings. They like to do anything that provides them an escape from sensory input.
It is actually possible to have the tendencies of both a seeker and an avoider. For instance, my son is definitely a seeker, but he does have some avoider tendencies with certain textures. He has a huge aversion to Play-Doh and putty type textures, which we have been working on. He also has an aversion to smooth textures of food such as yogurt, mashed potatoes, etc. We are working on this as well.
Now that you have all of the backstory information, I can share what I’m actually here to share…
A few weeks ago, during my son’s ABA therapy session, there was a new registered behavior technician (RBT) working with him. His ABA therapist was also present and observing the session. I was in the waiting room.
After a while, his ABA therapist asked me to come outside where they were playing on the playground equipment because my son was upset. I got outside and got his attention and he stopped crying and was no longer upset.
It turns out that his ABA therapist had left the room to go get something during the session, and once she left him alone with the RBT, he got upset. Once the therapist returned, they still could not get him calmed down, so they tried taking him outside to play without success.
For the first time ever, my son had a case of separation anxiety. He was not familiar with the RBT yet, and his therapist he sees 3x a week wasn’t around, and he realized it. You guys, THIS. IS. HUGE. My son has become aware enough that he is noticing who is around him. He missed me, and I was able to make him feel better with just my presence, which has NEVER happened in the past. This is a milestone. This is big for his safety as well. I always worried about him (still do) because he is so friendly and has ZERO stranger danger and no awareness of danger in general. We are seeing a step in the right direction now. I hope his awareness continues to improve.
The thing with autism, is that often those diagnosed reach milestones at a much slower pace IF they ever even meet certain milestones. Therefore, we never know what to expect, but it sure makes it all the more exciting when one of the milestones is hit.
I finally did it. I knew my husband would still be home before leaving for work in the early morning hours, so I slept in my workout gear and woke up bright and early on a Monday morning to attend my very first spin class at the local gym. I wasn’t too nervous, as I already knew everyone that would be attending, and know the instructor pretty well. (Small town livin’.) I was excited for the opportunity to get my workout on early in the morning, three days a week, with the accountability of showing up to exercise with others.
You see, I am not new to working out and fitness. Since March of this year (2019), I have completed several workout programs; some of them quite advanced/intense. I have worked out fairly regularly, as in anywhere from 3-7 days a week, only taking a couple of weeks “off” here and there, since March. I have done quite well with eating clean and partaking in an 80/20 diet. I drink at least 90 ounces of water daily, most every day. I have lost weight and really toned up. The reason I mention this is to point out that it wasn’t like I was totally unprepared and out of shape to take on trying a spin class.
I showed up to class a bit early to get a bike set up and see just how it would all work. Everyone was super nice and knowledgeable. BONUS: Your first time trying a class at the gym is free! I was told to definitely take it easy, as I’d be using muscles I may not be used to using, and that I should feel no shame in taking things a little slower, sitting down rather than standing, keeping resistance down, etc. when it got to be too much for me. They made sure I knew not to push myself too hard, and made sure my bike was as comfortable as possible for me.
Once we got started, there were a few times I sat when they stood, and kept my resistance down when we were instructed to turn it up. The sweat was pouring, the music was playing, and I was thoroughly enjoying myself. Eventually, my legs did start to burn, as to be expected when working out. I then noticed my right leg was hurting me a whole lot more than my left, but I attributed that to the fact that my back was out and my right leg was a bit shorter than my left, so I was having to reach just a bit further on that side when pedaling. I always push myself, whether it’s a workout or any other given task in life. I am an all or nothing kind of gal. I do feel I pushed myself in class, but not a lot harder than I do in my other workout programs.
After a cool down and some upper body stretches we got off of our bikes for some leg stretches. Before I got off of my bike, the others warned me to be careful because my legs would be wobbly. They weren’t lying! I just about went down and had to use my bike for support, but I was able to do my stretches and change out of my workout shoes and into my street shoes.
I headed out right after class knowing I had to get home and showered quickly in order for my husband to get to work and to take my son to speech/OT therapy at the school. I walked out of the gym and went to step off the curb to get to my vehicle and fell to the ground with a loud crash as my metal water bottle hit the asphalt. My legs were tired! I just hoped no one saw me, and got up as quickly as I could and got in my car and headed for home. I wasn’t injured. I caught myself with my hands. No harm done; at least not from the fall.
I wore my fitness tracker/heartrate monitor to class. I was impressed by my calorie burn, and had done workouts with fairly similar results before. I was pleased.
I took my son to therapy later in the morning, and after that, I knew I had to keep moving (or so I thought) to keep my sore muscles from getting stiff. I went up and down the stairs to my basement at least 12 times washing and drying laundry and putting said laundry away. Granted, I had to take the stairs one at a time, one leg at a time, and very gingerly; holding onto the wall or the railing. I also deep cleaned the kitchen and living room. I kept busy all day, and drank lots of water.
Later in the day, I received messages from the instructor and fellow spinners asking how I liked class. I had nothing but good things to say, other than that my legs were sore. Sore is kind of like a badge of honor after a workout, though; am I right? It means you pushed and should see results over time.
Tuesday morning I woke up VERY sore and decided I would go to the chiropractor to get that straightened out. I was having a lot more soreness in my right leg than my left. My back was out pretty badly, and it felt good to get that back in place.
I took my daughter to preschool and had a really hard time getting in and out of the car, and felt like I was going to collapse taking the three steps to get in and out of my house. Ow! Then, I noticed both of my upper legs were swollen, my right far worse than my left. I pushed through, and took my son to his appointments out of town. I did try taking 3 or 4 – 200 mg ibuprofen, but it didn’t even touch the pain.
Needless to say, I didn’t sleep much, if at all, Tuesday night. I was in pain; so much so, that I couldn’t rollover or move my legs in bed without excruciating and unbearable pain. I am a stomach sleeper, and could not sleep on my stomach because by that time my legs hurt to the touch and with any movement at all.
You’d think at this point I’d be concerned. I was a little, but at the same time thought maybe I was just a wuss and kept thinking it’d feel better in the morning.
I woke up Wednesday morning in pain at rest and even more so with movement. I could barely bend my knees due to pain and swelling. I couldn’t step over even the smallest things on the floor. I had to put one hand on the toilet seat and carefully lower myself to use the toilet and would cry out in pain with having to sit down anywhere. I had trouble getting my underwear, pants, and socks on. My husband was able to accompany me to take my daughter to preschool and my son to appointments out of town. I was glad, because I was afraid I would fall carrying my son, or that he would get away from me and I wouldn’t be able to catch up. I was starting to get a little worried. This definitely wasn’t normal. Did I pull or damage muscles?
Getting into the car was a great feat in itself. I had tears streaming down my face and had to lift my legs in. Wow, now I was getting concerned.
My husband and I dropped our son off at his appointment, and went to grab some lunch. Before we left the facility to grab lunch, I needed to use the restroom. I noticed my urine had a very darkish red tint to it. Hmmm…
After lunch, I hit the can again, and my urine looked even worse-DARK BROWN. I knew I was not okay, as by lunch I had already drank 90 ounces of water, and even added some apple cider vinegar to some that morning, just to see if it would help my pain. I also took a bunch of ibuprofen that morning with absolutely zero relief.
I told my husband I definitely was not okay and contemplated whether I should go to an Urgent Care or just hit the clinic when we got home. You see, I do not have health insurance, so I wanted to keep this as affordable as possible. Therefore, I decided to call the clinic back home, and was able to get an appointment for right when we would arrive back in town.
I shared my symptoms with the nurse and PA and gave a urine sample (dark brown, ew) and a blood sample, and waited for results.
The first result I was given was that my urine had “a lot of blood” in it. I didn’t know what that would mean, but I was told to sit tight and wait for my bloodwork results.
Apparently, some of my blood lab readings were so high that the facility’s machines could not read them. Normally, the blood would be sent off and levels taken at another facility, but that facility was closed for the day, and there is a 2 hour limit on when certain levels can be read in the blood. Therefore, we never got an exact level on a few things, but knew they were concerning.
This is when the term RHABDOMYOLYSIS (aka rhabdo) came up.
Rhabdomyolysis is defined as: A breakdown of muscle tissue that releases a damaging protein into the blood. This muscle tissue breakdown results in the release of a protein (myoglobin) into the blood. Myoglobin can damage the kidneys.
This causes your creatine kinase (CK) levels to rise, as well as your liver enzymes.
Per my studies, a “normal” CK level is 38-314 U/L. A CK of 1000 indicates rhabdo, while a CK of 5000 indicates a severe case of rhabdo.
All we knew was that my CK levels were 2000+, as that is what the machines at the facility maxed out at. Not to mention, this was even after trying to dilute my blood sample.
They really wanted to hospitalize me and get definitive lab numbers in the morning, but I refused, agreeing to get IV fluids and IV pain medication outpatient and return in the morning. I was told they were VERY reluctant to let me go home, and that the only reason they were even allowing me to go home was because my kidney function looked okay per lab results. I had to promise to come back immediately that night if pain worsened etc. etc.
I received 3+ bags of IV fluids and supposedly some morphine. I say “supposedly” because I never felt it hit if they did administer it, and was in so much pain I didn’t pay any attention to what was going on around me. If they did give me morphine, I didn’t get an ounce of relief. I was lying there crying, and hoping I would go home and feel better in the morning.
I got home sometime after 9 PM. I did end up calling the nurse later that night because my legs ended up being even more swollen later on. I was told it was likely from all the fluid, and that I could come in if I wanted, but that there was really nothing to do differently than we already had until we had definitive lab results. I was good with that, and stayed home with strict instructions to come in the next morning for repeat labs.
I felt like my legs were logs (upper legs) on top of toothpicks. It was just ridiculous and so damn painful. My husband had to help me on and off furniture and into bed, etc. Needless to say, I didn’t sleep a wink. I physically couldn’t.
Morning came around, and my husband and I took our daughter to preschool and went back to the clinic where there were already orders in for me to repeat my labs. My mom graciously agreed to take our son to speech therapy at the school while we went to get some answers.
The doctor came out to the waiting room and asked us to come back to a room. He gave it to me straight and said I absolutely needed to be admitted, no ifs, ands, or buts, about it, and that I most definitely had a case of exertional rhabdomyolysis. My urine was no better than it was the day before, even after the IV fluids the night before, and my labs were not good.
At this point, I required a wheelchair just to get to my hospital room. The doctor gave the nurses orders to start very extensive IV hydration. They, in fact, questioned him and said “Our machines won’t even put out that much.” He told them to put an IV in both arms. Therefore, I was connected to 2 IV poles running full bore.
The doctor came into my room after I was settled and asked how I felt about a catheter. I was all for it! I did not want to have to get up to use the bathroom with so much pain and have to navigate with 2 IV poles.
Needless to say, no sleep that night. I was SO uncomfortable and in a lot of pain.
The next morning (Friday) they took repeat labs. My urine was still brown. My labs had worsened. The doctor informed me not to be “delusional” or “get my hopes up” thinking I would be going home anytime soon.
It was homecoming in town, and I did convince them to let me go watch the parade in my wheelchair, IV pole in tow with my fancy hospital pants and urine bag to boot, that afternoon.
I suffered a TERRIBLE headache late Friday afternoon and into that evening. I could not utilize Tylenol or ibuprofen because my liver enzymes were so high. Therefore, I was given a dose of hydrocodone with no relief. I was later given more hydrocodone with no results. I was then given tramadol with zero relief. I was then given a double dose of tramadol, and finally had relief, although I don’t know if it was because of the tramadol or that the headache was just over at 3 AM.
Saturday morning, labs were taken again and had again worsened. My urine was still dark, although not brown. My doctor consulted with a kidney specialist, and they made the decision to back my fluids off, and I was therefore down to just one IV, although they kept the other intact, just in case. They attempted to flush the IV site not in use later in the evening, and it blew. So, I was down to just one IV in my left arm.
I did sleep a tiny bit better Saturday night, although didn’t sleep much.
Sunday morning I woke up in a bad mood. Can you blame me? A CNA took my vitals, as they did many times throughout the day and night, but this time the blood pressure cuff caused my IV to blow. I got sick of waiting for a nurse to arrive, so I just took the damn thing out myself. I then got a little owly with a couple of CNAs, which my husband found hilarious and says he wished he had recorded. I will not go into detail, but my owliness was warranted. They then had trouble getting another IV in, and I ended up with one in my right hand. Great.
That evening I was able to hobble around on my own, and even sat in a chair for a while.
I finally slept fairly well for my circumstance that night. I was even able to sleep on my side and stomach.
Monday morning my labs were taken again. The doctor came in and said there was a mixup and that my labs didn’t get sent off for absolute counts. I tell you, I about jumped out of that bed and tackled him. Argh! He said the labs they could get in-house were trending downward nicely, and that once he saw my total counts after the delayed send off, if they were trending down, too, that he would let me go home.
My catheter was removed, and I was able to use the restroom on my own. My pain was down considerably, and I mostly felt just sore and very weak.
That afternoon, the doctor stopped back in and told me my total counts were trending down nicely, and that he would let me go home if I promised to rest and push fluids until a follow-up in a week. I agreed.
I think a lot of times they make you stay in the hospital until your CK levels are down to 1/10th of what they were at their peak, but they cut me a break. (Remember, no freaking health insurance here.)
I missed my kids a whole lot! I did not allow them to visit, because I did not want to scare them or have them catch something, since I did have a roomie. I did video chat with them a couple of times, which only made me cry a little. They faired well without mom. Dad was able to stay home most of the time (awesome boss) and grandpa & grandma and aunts were willing to pick up the slack. For that, I am forever thankful.
I so appreciate the prayers, flowers & gifts, the meals after home, and everyone that came to visit or messaged me and offered a helping hand and encouraging words.
The odds of getting exertional rhabdo are 0.016%. I guess I should buy me a Powerball ticket.
I did ask my doctor if he thought spin class was the culprit. He told me that yes, I pushed my muscles too hard for too long, and likely used some new muscles that weren’t as conditioned.
Do I plan to hit up spin class again? Yes, when and if I am able to again. Me, my luck, and my body are the only things to blame for this. It’s very rare. It’s just my luck.
The outlook? I am not sure. Some say their muscles and endurance are never quite the same after rhabdo, and some make a full recovery.
Right now, my legs are very weak, and I get tired and wore out very easily. I have been doing my best to take it easy, and the state of this house is driving me bonkers! I am a clean freak, and this has put that to a halt. My husband has been kind in helping with supper and bedtime in the evening. The kids…well they’re kids. They don’t understand that mommy needs rest. We are doing the best we can.
I guess it’s safe to say that no one can ever say I don’t give things my all.
For a little perspective: Remember how I mentioned a CK of 1000 is considered rhabdo and 5000 severe rhabdo? Take a look at my peak labs below. I was absolutely SHOCKED, and am so thankful my kidneys and liver held on, and that I did not wait any longer to be seen by a doctor.
Standard results on left. My peak results on right.
While this condition is quite rare, and more often happens due to crush injuries, snakebites, and drug and alcohol abuse, please listen to your body! I do not wish this condition on anyone.
-AMomsFaithUnbroken
ADDENDUM: This Wednesday (day 2 at home) I decided I could handle taking my daughter to preschool and driving my son to therapy 80 miles away. My son has a half hour break between therapies, so we were playing outside at the facility in the fenced in playground area. I was sore and weak, but managing. Some kid decided to open a door that was not in my line of sight. He then looked at me and said “He just went inside.” very casually. Not to mention, his teenaged sister was standing right there with him, but did nothing to prevent this. Anyway, I go trucking inside and don’t see my son anywhere. He is a bolter, and has zero fear or safety awareness. My legs are killing me. I’m hobbling around in a panic. I cannot find him! I am so worried he walked out the automatic front doors of the facility and is outside somewhere. I met his ABA therapist in the hall, and she helped look for him and reassured me we would find him. Pretty soon, it was a facility wide search. Everyone was calling his name and looking for him. His ABA therapist eventually found him in a dark room in a corner playing with some toys. He just looked at us like “What’s all the fuss about?” I sat down in the waiting room and cried. I cried in relief. I cried in pain. I cried in frustration.
