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.

My Kidneys Ate my Quads: My Battle with Rhabdomyolysis

It’s been a while! My last post was more on the informative side of things. Therefore, I think it’s time for a more personal update. On that note, Augustus is absolutely THRIVING right now. It’s more than amazing. He is doing things we didn’t know if he’d ever do. One of his therapists even commented “I never thought I’d see the day…” I attribute most of his success to his applied behavior analysis (ABA) therapy. He has absolutely flourished since starting.

It is very common with autism to have extreme interest in certain things or objects. They say that an autistic child’s interests are often lifelong. Gus has taken a real interest in animals, especially jungle animals. In ABA therapy, he has a place mat with jungle animals on it and a bin of toy animals. Since those were introduced, the words have been coming. It’s also not unusual for interests or preferred objects to come and go, but animals, music, and vehicles of all kinds seem to be a stronghold for Gus.

At first, he was just saying the name of animals. I hate to say ‘JUST’ because that in itself was huge. He said “tiger”, “kangaroo”, “froggy” (see video at end of post), “ducky”, “elephant” (his version), “giraffe” (his version), “bear”, fish (or shhhhh), and probably more I’m not remembering off the top of my head. What’s adorable about Gus is that he tends to whisper when he’s trying out a new word or sound, so it can be easy to miss. Once he is more confident, he will say the word or sound out loud. For instance, he was playing alone at home with his animals and I heard him whisper “turkey” clear as day. He has never said “turkey” when playing with me or in therapy, but I caught him in the act.

He then jumped from just saying the names of animals to actually labeling them! As in on his jungle animal place mat, they could ask him “Where’s the tiger?” and he would point to it.

It’s also important for me and everyone else to understand and remember that just because he develops new skills, words, sounds, etc. it doesn’t mean he will use them on any kind of regular basis. For instance, he may say a word and we won’t hear it again for months…or even longer. What is amazing though, is that you can see him thinking and recalling just by the look on his face. The other thing to keep in mind is processing time. It takes Gus longer to process things. We need to be sure to give him time and help to instill the confidence that he can come up with and say things on his own, even if it takes a little longer. I was told that there have been cases where processing time has been up to 7 minutes. I just love to see him thinking and studying and trying. It absolutely breaks my heart sometimes when I see him working so hard and I see his little lips moving, but he just can’t quite come up with what he’s trying to label/say etc. His brain and his body just aren’t communicating correctly.

Along with processing time, we also have to keep in mind that Gus is VERY stubborn. Seriously, who would have thought Dane and I would have a stubborn child? (HAHA!) We have figured out over time that there a lot of things he can do, especially physically, that we just have to wait him out on and make him do himself. Because he struggles with some things, it’s just easier for him to let others help him, but in order for him to get stronger and learn to do things on his own, we have to wait him out. It’s a tricky prospect. For instance, in the Sensory Gym at LifeScape where he receives therapy, there is a ladder leading up to a platform then to a slide. He had been working on the ladder for a while in Physical Therapy (PT) and always required help. Well, one day he was super motivated in ABA and we watched him go up the ladder almost completely by himself. Then we knew he was physically capable. So, from then on, in ABA therapy, we would put him on the ladder and just wait him out and encourage him because we now knew he could do it himself. We’ve waited several minutes before, but he will eventually do it. The other tricky thing is his sensory needs and lack of safety awareness. If someone stands behind him while he is on the ladder he will lean backwards and pretty much completely just trust fall backwards seeking pressure. So, we figured out that we have to stand at an angle and not too closely behind him so he knows the only direction is up. This is just one example. We’ve figured out a lot in the last month or so.

Speaking of sensory needs, one thing that has revolutionized his learning and attention span is a specific kind of chair, a Rifton chair I believe is what they call it (see photo below). It is a chair that has a part that comes up in the middle between his legs and almost like foot pedal looking things on the floor at an angle that Gus can put his feet on. The chair also has a straight back and high straight sides that keep him a little more tucked in giving him that sense of pressure he craves and needs to better concentrate. He loves to put pressure on things with his feet, so the foot pedal type attachment on the chair allows him to push down when he feels the need. We went from not being able to keep Gus’ attention for more than 30 seconds TOPS (usually less) to up to several minutes now. IT’S HUGE!! Who would have thought a chair could make such a difference. Oh, the things I’m learning.

Rifton Toddler Chair with Adaptive Positioning. (This is the exact chair Gus uses, except his has a bar thing on the seat that goes between his legs.)

I am starting to feel more confident in my parenting all the time. I am starting to figure out what Gus wants and needs. In fact, I was even able to bring him back down from a sensory meltdown at church a few weeks ago. I was so proud of that! I took him to the cry room for a while and got him calmed down. We were then able to go back out and sit in our pew for the rest of the sermon. I wasn’t even completely horrified that he had ripped a page out of a hymnal causing an older lady to audibly gasp as if someone had passed out or something. (Haha!) Nobody knows him like his mama. I’m doing the best I can to understand what he needs from me and his surroundings in general.

I have a lot more to share. I got busy and behind; more later.

Signing off for now.

-AMom’sFaithUnbroken

OF NOTE: One of Augustus’ speech therapists said he could now probably be considered MINIMALLY VERBAL as opposed to nonverbal. We hope to progress to mostly verbal.

Welcome to the Jungle

To the Lady in Perkins that will “Always Give her Opinion”

I’ve known this day would come…the day someone, a stranger at that, criticizes and tries to belittle me for the choices I make for my autistic son in a public setting.

It’s hard enough when any child is upset in a public setting. You don’t want the stares and the “looks”. Kids throw fits and tantrums. They can be unknowingly rude. They are messy. Add autism to the picture, and it only intensifies.

BUT

Lady, my son cried for a total of maybe two minutes. He wasn’t throwing a fit. It wasn’t a tantrum. He was hungry, thus the reason we were in a restaurant. He is not even 3-years-old yet. He just worked his tail off at therapy working on the things we all take for granted on a daily basis.

Your attempt to make a scene, all because I chose to seat my child in a highchair to keep him safe, was uncalled for.

Yep, I sure did see those booster seats “right behind me”, but they are not an option right now. My son bolts and wanders. He doesn’t know any better. He is perfectly comfortable and SAFE in a highchair.

Maybe had you used some tact or minded your own business, as your husband was so desperately trying to tell you to do, I wouldn’t be here typing this now.

Let’s be honest, you tried to embarrass me in a moment that was already hard enough. Talking about us loudly enough everyone could hear, and then having the nerve to confront us about it in a rude manner.

At first, you almost won. I got flustered and wanted to get up and leave. But no. I was doing nothing wrong, and either was my son. You, lady, are wrong.

I respect that you had the nerve to say something directly to me, eventually, though I did not appreciate your condescending tone and your extraordinarily rude demeanor.

Every fiber of my being wanted to tell you to “Mind your own f*!#ing business!” But unlike you, lady, I have tact.

I sure feel sorry for your horribly embarassed husband. And guess what? I feel sorry for you, too.

After causing such a scene and my incredibly polite response of “He has autism, and if he sits in a booster seat he will not stay and will wander around.”, which was the only thing I could muster to say, your simple response of “Okay, well I am always going to give my opinion.” I say this to you: you are lucky I kept my “opinion” to myself.

Had you politely asked or suggested maybe he would fair better in a booster seat; cool, I would have appreciated your concern and suggestion and politely explained the situation. But your insistence on making a scene and making sure your presence was known to everyone in the restaurant apparently outweighed your true concern for anyone but yourself.

This isn’t an autism issue, this is a people issue. I ask that the next time you see an obviously flustered person trying to calm their young child that you choose kindness, or better yet, to keep your opinion to yourself! Your “opinion” only made a small anthill of a situation into a mountain.

– AMom’sFaithUnbroken

Autism Awareness Month April 2019 – World Autism Awareness Day April 2nd, 2019

It’s been a while since I have had a chance to write a blog post. I decided to make it a priority today. I will start off with one of my “A Day in the Life” segments. I find these most informative, as they often answer a lot of questions I wouldn’t otherwise think to address. I will then give you an insight into the progress we are making, and where we are at now.

A Day in the Life
Wednesday April 3rd, 2019

6:00 AM – My alarm goes off, and it’s time to wake up and get my workout on. I don’t go to a gym or anything, just workout at home through a program I joined.Yes, you read that right. I am on week FOUR of working out 5-7 days a week, and attempting to eat cleaner. Why? I realized that life isn’t going to slow down anytime soon, and that I NEED to take care of myself to have the energy I need to keep up with my life. I have a new mantra for what I put into my body: FUEL vs FILL. There are already so many things in life I have no control over, and even more-so for me than your average person; and my body is one thing I can control (to a point). I have plenty of reasons to be depressed and shutdown, and I sure don’t need my body working against me when keeping those things at bay. Weight loss will be a great side effect of these changes, but the REAL reason I’m doing it is to have more energy and better health. I’m also working on not smoking. (I have only had a few in the last month when I was out drinking), and I have only drank once in the last month. I’m just trying to focus on what’s good for me.

6:30 AM – Cool down, get my breakfast ready to go (waiting to use my blender until the kids wake up) and share my workout on my accountability group.

6:45 AM – Shower and get dressed.

7:00 AM – Get a bag packed for Augustus for our trip to Rapid City, SD, for therapies at LifeScape, load the car, get breakfast ready for the kids, and start waking the kids up. (Gus is usually awake in his crib already making noise and jumping and laughing.)

7:00 – 8:00 AM – Give the kids their breakfast. Gus gets breakfast in his crib sometimes, as he likes to take it slow in the morning. I usually give him a waffle and some juice in a sippy cup. He usually begs for more food after he is up and dressed, but I try to hold him off, as we have feeding therapy first thing at LifeScape. Ada comes out and eats her breakfast. Then I get Gus dressed and ready for the day-no small feat. Dressing him is like dressing a small alligator. He likes to roll over on his stomach, throw his clothes on the floor, undo his diaper tabs, take things off the walls, occasionally bite, wiggle, giggle, and think everything tickles. Then the hard part, convincing Ada to get dressed and ready for daycare. This goes one of two ways, absolute refusal, tears, and drama or absolute cooperation. Thankfully, this Wednesday was absolute cooperation. I also have to keep an eye on Gus while getting Ada dressed, as most mornings he is in the kitchen searching for food, opening drawers and cupboards, grabbing dishes out of the sink, etc. Eventually, if Dane is home, I leave Gus with him and take Ada to daycare and gas up the car, as was the case this Wednesday.

8:15 AM – Get Gus strapped into his car seat-no small feat. He wiggles and chews on the straps and I get some good cardio in.

8:25 – 9:50 AM – Drive to Rapid City. Gus usually rides in the car very quietly besides a squeal or a clap here and there. He is generally content just chewing on his chewelry necklace or snuggling his blankey. He stays awake the whole time. I struggle to stay awake EVERY time, no matter how tired I am. If I am taking him alone, I listen to an audio book on my phone, which helps a little. I drink my breakfast shake on the way and occasionally slap myself to wake up when it gets bad (yes, seriously). This Wednesday we drove through rain the whole way to Rapid City, and then it started snowing right as we pulled into LifeScape. Halfway to Rapid, I realized I forgot to take my morning pills. UGH. I’ve only been taking the same things for like 9 years, but still often forget.

9:50 – 10:00 AM – We pull into the parking lot at LifeScape. As I said, it’s snowing, Boo. I get Gus out of the car and hold his sweet little hand and grab our bag and we head inside to check in. Then, we hang out in the waiting room; and by hangout, I mean I chase Gus around. I usually always need to use the restroom once we get to LifeScape, and unfortunately, Augustus HATES the bathroom there. I feel so badly, but if I’m alone, I have to take him in there with me. He stands there in terror and panic while I try to pee as fast as I can, all the while praying he doesn’t open the door and bolt. Then comes the worst part, the toilet flush. He absolutely loathes that toilet and the noise it makes when it flushes. So, I flush and run to the door as fast as possible so we can get out of there before he has a full-on meltdown. Hand sanitizer it is. No hand washing for me in these instances. We head back to the waiting room and wait for our turn with Miss Nicole, our occupational therapist (OT). The nice thing is, we are very familiar with all of the other families in the waiting room, as we see them weekly. They are all so kind and understanding and even very helpful keeping Gus contained and somewhat under control. They also have good advice to offer, as Gus is one of the younger kids there in this time frame. Their kindness, help, understanding, and advice is priceless and immensely appreciated.

10:00 – 10:30 AMOCCUPATIONAL THERAPY with Miss Nicole
Miss Nicole comes out and greets us and gets Gus’ attention and then we head back to our obstacle course. We do an obstacle course every week consisting of different tasks for Gus to do. Before we complete our obstacle course, we practice “good sitting” and cooperation while taking our shoes off. This can be a very daunting task for Gus, as he rarely sits still, but some days he does just fine. Our obstacle course usually consists of 3-4 tasks that help with our motor skills and finishing tasks. For instance, this week we crawled through a tunnel, we jumped on a trampoline, and we threw beanbags at some blocks. Gus is required to complete each task before moving on to the next. After the obstacle course, we again practice “good sitting” and cooperation to put our shoes back on and head to feeding therapy.
FEEDING THERAPY with Miss Nicole
We head to the kitchen. Gus then climbs up onto a step stool and Miss Nicole helps him soap, wash (“make bubbles”), and rinse and dry his hands, and then throw away the paper towel used to dry his hands. He is making fairly good progress with this, as he seems to like running water coming out of faucets and will even try to do this task himself at home in the bathroom. Then, Gus is seated in a chair just his size at a table just his size. Miss Nicole sits next to him, and has the food items for the day ready and prepared and on a plate ready to go. Gus and Nicole then try the foods on the plate; some familiar/preferred, and some new/non-preferred. They then experience the texture of the food, which is huge for Gus. He has to touch food before he will try it. Miss Nicole describes the texture and consistency for Gus. Then they try the new foods by first just touching it to the lips and going from there. Then they work on drinking from an open cup. As I said, texture and consistency are EVERYTHING to Gus; so, his first instinct with any open cup is to stick his hand in it. He is getting a bit better with this. Nicole helps him hold the cup (a handle on each side) and practice bringing it to his mouth. She has to remind him to use his lips, by smacking her lips together and saying “lips” and then he successfully takes a drink. We practice this at home, too. Then, Nicole works with Gus on his utensil skills. So far, we have started with a spoon. Like I said, Gus just wants to touch everything with his hands. That’s why we are sure to let him touch the food before we move on to using the spoon. Nicole helps Gus grip the spoon and the container he is eating out of using “hand over hand”. We practice this at home, too, and it is a lot of work, but he will continue to progress. Gus has progressed in leaps and bounds when it comes to the act of eating itself. Nicole has taught him to take small bites of foods, rather than sticking a whole item in his mouth. Then, once Gus and Nicole are done with trying their foods, etc. Nicole gets Gus cleaned up, which is a challenge, as Gus does not like having his face touched. Right now, we are working on him allowing his face to be cleaned with his help. Nicole has him hold onto the wet paper towel with her, and she is sure to state what part of the face will be wiped off, and using “hand over hand” has Gus help her wipe that part of his face off until his face is clean. Then they throw away the wet paper towel and we head back to the waiting room to await the next therapy session. Gus has come a long way in being able to sit for longer periods of time, which also helps with his feeding therapy.

10:30 – 11:20 AMNORMALLY, we would have speech therapy next with Miss Jodi, but Miss Jodi was out this week. We had an hour wait until physical therapy at 11:30, so we decided to head out and come back rather than waiting in the waiting room for an hour. Gus has been in need of a haircut for a LONG time. I have cut his hair at home before using clippers, and it is never easy and never fun for either of us. In fact, we usually both end up in tears. Anyway, I decide we will brave it and stop at the Cost Cutters not too far from LifeScape and then be back for physical therapy. Let me just say, I knew it wasn’t going to be pleasant or easy, but also knew it was a necessary evil we had to endure. I feel sorry for the sweet unsuspecting lady that was lucky enough to not be busy when we walked in.
OUR FIRST OUT-OF-HOME HAIRCUT a fresh level of HELL
I first explained to the stylist that Gus had autism and did not handle having his head touched very well in general, and that this was his first time not at home, and would be a learning experience for all of us.
We first tried to see if Gus would sit on a booster in the chair alone – no go. I held him. We tried to get a cape on Gus. First of all, he took the first tissue thing they put around your neck before the cape and bit it in half. So, I held his arms down and we got the tissue thing and the cape on him. Then, we tried to get a cape on me, which was only somewhat successful. At first, he was entertained by the mirror and such. Then, the stylist had to try to get all the tiny knots out of his hair. He was not having it! He swatted at the comb and screamed and wiggled and was pissed off in general. I can’t blame him. The stylist got out the spray bottle to wet his hair down, and he absolutely hated that, too. We had some suckers in our arson, and whipped one out at this time; early in the game. That worked a little bit for a little while. He was still distressed and swiping at his hair and face. Therefore, his face was a sticky mess. Because he was moving and rubbing at his face and hair, a bunch of hair was stuck to his sucker sticky face. Then he rubs this into his eyes. Things get worse, and worse, and WORSE, and we aren’t even close to done. To sum it up, we went through 3 suckers, 3 wet washcloths, and we both had hair ALL OVER US. A toy worked to entertain him for a little bit, and that was pretty much the saving grace to get his hair even close to finished. A couple of other stylist stopped by his chair to help. They offered him a spray bottle of water to play with, some clips, you name it. He WAS NOT HAVING IT. NONE OF IT. We resorted to me having to hold his little arms down and keep him as still as I could and the stylist working as fast as she could. Keep in mind, this kid is the size of a BIG 4 year-old and isn’t even 3 yet. He cried, screamed, yelled, fought. My little man ended up so upset he nearly threw up. I decided we were done. It was good enough. We were able to get all of his hair cut except for over his ears. We just couldn’t find a way to get to those spots without him being in danger of getting hurt. The stylist was absolutely amazingly perfect throughout the entire situation. She even offered to have him come in another time when he was “having a better day” to finish up above his ears free of charge. What I didn’t have the heart to tell her was that this was a good day for Gus, one of his best. Anyway, I tipped this amazing lady $29, and that probably still wasn’t enough for the 40 minutes of hell she endured. You, lady, are a saint to this mama! I guarantee you, if I had not already been prepped and prepared for how terrible this could be, I would have had a meltdown myself. I would have cried for me and Gus. We got done with this experience just in time to head to physical therapy. We were both exhausted. I was just a bit emotional and felt spent. I truly considered cancelling his physical therapy appointment, but because we finished in time, I knew we needed to show up, and he needed to work.
DO YOU KNOW HOW BAD THIS MAKES ME FEEL? I feel terrible that this task is so hard for him and will be something he has to face for the rest of his life.

11:20 – 12:00 PM – We drive back to LifeScape. The tears are done. I push my feelings and everything aside and get ready to do what we need to do. In the waiting room, Gus sits quietly with his blankey, his favorite comfort. One of the moms we see there weekly comments that she has “never seen him so calm and quiet”. I then explained that we had just had our first out-of-home haircut experience and that I thought he was “shell shocked” by the experience, as was I. I could see the light bulb turn on in this woman’s head. She instantly understood. Do you know how good that made me feel? She patted Gus on the back and said she understood. She told me that it was the same way for her son for a long time, although he was finally better about it now (I believe he is 9?). The other familiar faces in the waiting room also shared words of encouragement and compliments on his new haircut. It takes a tribe, I tell ya, and who knows where you might find more tribe members.
PHYSICAL THERAPY
Miss Teresa comes out and gets us for physical therapy. In physical therapy, Teresa helps Gus to work on his abdominal strength, going up and down stairs, his coordination, his balance, and various other things he struggles with physically. He is also making good progress with these things; slow but sure! Teresa has to work very hard to keep him on task and does an amazing job with him. She finds different toys and things to help motivate him to do the exercises he needs to do. She definitely gets a workout in, too. He loves to be all over the place in that gym, and get into all the cupboards where all the cool things are.

12:00 – 1:30 PM – When we are done with physical therapy we head out for home. Some weeks we stop and grab some lunch. I enjoy these little lunch dates with my little man. This week, though, after so much trauma from the haircut and the questionable weather, I decided it was best we got on the road for home as soon as possible. I stopped at the Arby’s drive-thru and got something small and “healthy” for a fast food place. Then, we were on the road home. I turned on my audio book, and Gus fell asleep and slept all the way home.

1:30 – 4:00 PM – Most often, when we arrive back in Philip, I go pick Ada up from daycare right away. Since we were home a little earlier than usual, I knew it was nap time for Ada at daycare, and knew Gus would sleep a bit more; So, I went home and unloaded the car and got Gus inside and put him down in his crib after a diaper change. I then went and laid in my bed for a bit and tried to rest some, too. (WHEW!!)

4:00 – 5:00 PM – We pick up Ada and come home. Since Gus hadn’t eaten since his therapy from 10-10:30, I knew snacks and an early supper was needed. The very first thing we did was get in the bathtub since Gus had hair from his haircut all over. Ada claimed she didn’t want to take a bath and just wanted a snack. So, I got Ada a snack and got Gus in the tub. Ada eventually wandered in and wanted to take a bath, too, and jumped in with Gus. The usual bath time shenanigans went down. Gus threw cups full of water and toys out of the tub and caused a small flood. They fought over toys. They played together nicely. It was a fight to wash Ada’s hair. The usual. Gus got out first and I wrestled him into some pajamas. Then Ada got out and insisted on wearing her towel, which means before long she will be running around stark naked…her favorite. Some days, it’s not worth the fight to keep her clothed.

5:00 – 6:00 PM – Wednesday evenings kind of end up a blur for me…I made the kids some chicken nuggets and cheese quesadillas. They both happily accepted. We had the usual suppertime drama of Gus trying to steal Ada’s food after he ate his causing yelling, screaming, whining, crying, and fighting. I played referee. Then I got everyone cleaned up.

6:00 – 8:00 PM – Dane made it home sometime around 6. Amen. I didn’t tell him about Gus’ haircut in hopes he would notice. Did he notice? No. I eventually hinted at it. He still didn’t notice. I eventually just told him. Gus was just ornery and we could not keep him out of the kitchen, off of the table, out of the drawers and cupboards. It was constant. No “deep couch sitting” as those Swiffer commercials talk about. I had a snack of carrots and guacamole, which means the kids stole carrots and they ended up in various areas of the house and ground into the carpet. Gus did eat some. Then I hear Gus start to wail. Come to find out, he got his leg stuck behind the couch between the couch and the window. Dad got him out and he was happy. The TV was on and Ada decided to cuddle up with Dad. I followed Gus around the house attempting to keep him out of trouble. He finally settled down a bit before 8 after jumping on furniture, putting things he’s not supposed to in his mouth, and squealing and running around.

8:00 – 8:30 PMBEDTIME
Gus still sleeps in a crib. That’s our only way to keep him safe and contained at night. I am positive he could crawl out if he wanted to, but he doesn’t. Thank goodness. He is getting really big for his crib, but it’s still working so far. Putting Gus to bed consists of changing his diaper, finding his blankey, and taking his chewelry off. He HAS to have that blankey at bedtime. I would hate to know how many hours of Dane, Ada, and my lives have been spent looking for that blankey at bedtime. Gus is put in his crib with a sippy of water and his blankey, pillows, blanket, and stuffed animals. Gus usually stays up jumping, jumping, and jumping in his crib. He also bites his crib railing now. We have to keep his crib pulled away from the wall and his bookshelf or he will bang his crib against the wall and grab anything he can off of his bookshelf. Sometimes, he falls asleep fairly quickly (like in 30 to 60 minutes). Sometimes, he stays awake until the wee hours of the morning. We are all used to this, and thankfully he’s happy just doing his thing. Dane and I refer to it as “Gus being up partying all night”. This comes and goes and is just a part of who he is. This Wednesday was stressful enough that he was out fairly quickly. Ada insisted upon sleeping on her bedroom floor. Ok. Whatever. She was out of her room several times for various reasons.

8:30 – DAY’S END – Dane, thankfully, agreed to get some supper made. I ate supper and decided to go to bed. Ada was still wide awake. She eventually ventured into Dane and my room and laid down with me. I have no idea if or when she fell asleep. I woke up at one point and she wasn’t there. Apparently, she had ventured back to her room and went to sleep.

UPDATES/PROGRESS – shortlist
Ada turned FOUR on the 28th of March.
Gus seems to like the color green. He is interested in any green animal. Ex: Snakes, alligators, birds, frogs, etc
Gus now says “SH” when he sees fish.
Gus will sometimes whisper “go” when we use “ready…set………”
Gus says “ca” or sometimes “cat” when he sees one.
Gus is still very interested in cars and will say “car”.
We have discovered he tends to whisper when attempting to speak and not just making noise.
He says “da” and “dada” on occasion.
He is getting better about saying at least the first letter of some words.
We are still using PECS and he is making some progress with this, although it’s still not his favorite or preferred method of communicating.
We had to put a child lock on the pantry to keep Gus out of it.
He says “ssss” when he sees a snake.
He is responding to certain phrases such as “no throw”, “good walking”, “walking feet”, “no fall”, “stand up”.
He is doing a lot better with eye contact.
He is doing better having “good walking feet”, as in he doesn’t randomly lay down on the ground as often. He is realizing he needs to hold someone’s hand before taking off after we get out of the car, and will often even reach for my or Dane’s hand.
He is getting better at attempting to help when dressing him in the morning.
There is much, much, more but nothing more I have the time to explain.

THERAPY
Gus receives therapy 4 days a week.
Gus is being evaluated for Applied Behavior Analysis (ABA) therapy this coming Monday in Sioux Falls.

Gus on Thursday rocking his new haircut, comfortable at home eating a waffle.

A Day in the Life: Therapy & Haircuts

When Augustus was born, he was born hungry and ready to eat; and eat he did. He has always been a big eater, and a big kid. In fact, per his measurements a few weeks ago, he could actually pass as a 4-year-old per his weight and height. He seems to always be hungry and always game for a snack or meal. In the beginning, he would eat just about anything and was less picky than his older sister. Throw anything at him, he’d eat it.

Eventually, he became more selective about his foods, as any kid does. This has progressed into him being very selective about what he wants. The part that makes this so hard is that he cannot tell us what he would prefer or what he wants, but can refuse or protest to things he doesn’t want. We do try with pictures and PECS, but we aren’t very advanced in that yet. Like I said, Gus seems to always be hungry. He’s a growing boy. How do I know when he’s hungry? He starts wandering around the kitchen fussing and whining and looking around for something he wants. I try to show him his pictures to get him to indicate what he would like, but he rarely has patience for this. Therefore, we begin the guessing game! I offer and he refuses or accepts. If he refuses he pushes (or throws) what I offer him away and says “Doe!” Or “No!” If he accepts he just takes what is offered and runs. As most 2-year-olds, he has very little patience. When I finally offer a food he will accept, if there is any preparation or cooktime involved, he pushes in front of me whining and reaching while I’m attempting to prepare his snack or meal, and will sometimes even push me. He’s a big kid, so I get a workout in. It is very stressful; kind of like Hell’s Kitchen, but without actual words, having someone yelling and screaming at you while you’re trying to prepare their food.

He goes through cycles where he has “preferred foods”. The longest lasting cycle was bread, buns, and things like that. He was always happy with bread and refused most other things. Unfortunately, this phase of the cycle ended and we had to figure out other “preferred foods”. Next was fruit, especially bananas. This phase in the cycle didn’t last as long as bread. If we’d have let him he would have ate nothing but bananas. He was crazy about bananas! Then today he decided bananas are no longer a “preferred food”.

Here’s the thing…children with autism spectrum disorder and/or sensory processing disorder tend to have eating and feeding difficulties. They tend to get fixated on a food and refuse to eat anything else and then finally get sick of the food they’ve been fixated on and start a new one. You have to understand, new foods in general are hard to introduce, as Gus has issues with texture, taste, smell, color, and so on. There is seriously a super long mapped out process for introducing new foods. You start with them even accepting the new food on the plate to actually touching it and work your way up from there. I had no idea it could be such a process. If there is something not preferred on Gus’ plate he tends to throw that food on the ground or just flip his entire plate or bowl.

Gus also struggles some with the mechanics of chewing, sitting at the table, and with the motor skills involved in feeding himself and using utensils. We have to hold utensils in his hand and use our hand to guide his hand to the food and then to his mouth. It’s not easy because he knows just using his hands is faster and more efficient, and that he gets to feel the texture if he uses his hands. He also lacks the coordination required to use an open cup, and with his sensory issues would prefer to stick his hand right in the liquid before he tries it. He also likes to squeeze and study the texture of his foods, and will even take a bite and get the feel in his mouth and then take that bite out to visually study it. (All very messy.)

To address all of this, Gus is doing some feeding therapy at LifeScape once weekly. His chewing has improved and he has been better about taking bites rather than stuffing his mouth full. I can also get him to sit at the table and finish a meal on rare occasions, which is better than never.

We also have to worry about his nutrient intake. Since he has preferred grains and now fruits, we struggle to get him the protein he needs for growth and to keep him full. We got him to a point where he would accept peanutbutter, so we have been trying to incorporate that into his diet in different ways (on fruit etc.) so he’s getting that protein. Granted, he refused it yesterday.

This is not a situation where we have a picky eater and it’s a battle of wills. We can’t use the “Eat what I make or go hungry!” It is his body literally adversely reacting to certain foods for any number of reasons; texture, consistency, smell, color, etc. I think if Gus had his way he’d love to go back to eating any and everything. He loves to eat.

So, everyday, several times a day, we deal with the frustration on our part and on his part. Eating isn’t just eating around here; it’s a process and an adventure.

Right now, our saving grace is chicken nuggets. We have found a brand and way to cook them that he likes. Therefore, he is getting protein! We try to be careful not to burn him out on his favorite, but the kids gotta eat and if his preferred food is all he will eat, that’s what he gets.

He is also sometimes particular about how his food is served. He used to love macaroni n’ cheese and would eat a big bowlful of it. Now, he refuses to use a bowl and only wants a bite at a time in front of him or he will flip his bowl or plate and refuse to eat it at all.

Anyway, now you know all about what my kid eats, ha. I bet you were dying to know.

This is just another piece in the autism puzzle I thought I’d share. I don’t know if it is something that will ever go away, but there are parts that can be improved upon.

Gus is doing well. He is getting much better with eye contact and focusing for longer periods of time. He still isn’t using words much, but is understanding more all the time.

We are now also diving headfirst into the lovely sleeping issues that come with his diagnoses, but that can wait for another post.

– AMomsFaithUnbroken

Big Eater to Big but Selective Eater

Holla-Daze 2018

Happy, Happy, Holla-Daze

Holla – as in we do a lot of “Holla!” and “Hello!” catching up with family and friends; and daze – as the hustle and bustle of the season seems to fly by while we are in a daze.

Truth be told, I have forever been a bonafide Grinch! For whatever reason, the holiday season has always been a time of stress, dread, and wanting the time to pass quickly for me.

This year was my most festive and least dreaded holiday season thus far, which I attribute to my children.

Like the Grinch, my heart at one time was two sizes too small. With the birth of my daughter, my heart grew by one size; and with the birth of my second child, my son, my heart grew by another. That’s my theory anyway.

Holidays with a two and three-year-old are stressful, but add in some travel and that increases the stress level. Then, add in that one of the said children is nonverbal and in the process of learning to communicate and has ASD and SPD, with some pretty big sensory issues that effect basically every aspect of life, it makes for a very unpredictable and fly by the seat of our pants adventure. But truly, who am I kidding? Every day we fly by the seat of our pants on this big adventure: life.

Thanksgiving

Thanksgiving was spent a state away visiting my husband’s family. Thankfully, the children travel pretty well, so car rides really aren’t too eventful.

We were able to meet many new family members on Thanksgiving. I’m talking little ones we hadn’t yet had the opportunity to meet since their birth. We also had the opportunity to introduce our children to cousins and second cousins they hadn’t yet had the opportunity to meet. There were many little ones around.

The meal was delicious, and my husband’s grandma is an amazing cook/baker and prepared the entire meal for all of us.

Ada is at an age where she can play with the older kids on her own and doesn’t require so much supervision. That makes things quite a bit easier on my husband and me. She had a lot of fun playing all day, and ate at the “kids’ table” with the other kids.

Mealtimes are always a challenge, as Augustus has many issues with food and the mechanics of eating so it’s always a chore to figure out what he will eat, how he will eat it, where he will eat it, and the clean up of the giant mess afterwards. My husband and I usually have to eat in shifts. It’s really not an option to seat Gus at the table or even on one of our laps, because he has a reach like you wouldn’t believe and will stick his hands in everything. Augustus’ food preferences change often and vary from day to day. He is receiving feeding therapy at LifeScape to help him be able to deal with a variety of foods and learn to eat them in a more appropriate manner. He struggles with this because of his autism and his sensory issues involving all senses. In therapy, he is working on things such as how to drink out of an open cup and taking one bite at a time and being able to tolerate more than one food at a time on his plate, etc. He has to use a sippy cup unless we are practicing using an open cup because his very first instinct is to touch any and everything. Therefore, his hand instantly goes inside the cup. If he is eating one food and another is accessible on his plate or in front of him, he will remove the food in his mouth and throw it on the floor and try the other food. It’s confusing and hard to explain, but in short, he has big issues with the actual act of eating and tolerating food and their tastes, textures, smells, etc.

Thanksgiving basically went off without any major hitch other than that while playing, Augustus decided to try to pick up his one-year-old second cousin by his hair. He did also try to take the tablecloth off of the table while his dad was holding him at the table after lunch and did spill a cup of soda. He made a less than usual mess with eating. All in all a pretty successful meal and fellowship with family. We were even lucky enough for Gus to get a nap in while we were there!

Christmas Cookies

A bunch of family members met at my mom’s house a few days before Christmas to frost and decorate Christmas cookies. Even though I knew there was no way Gus would appropriately participate, I let him try. Of course, he just ate the cookie and wanted to get into things and make a mess. That’s okay. Like I typed, I knew that going in. I do have to admit that I had a bit of a hard time with it because Gus and I were unable to participate and had to spend some time outside. I felt bad for him and bad for Ada because I was unable to help her out with this festive and memorable task. Of course, there was plenty of family there to help, but really I am best at keeping an eye on Gus and predicting what he’s going to do and best at calming him, etc. But, as I’ve mentioned before, a lot of things sting and there is just a lot we are all going to have to accept and get used to.

Christmas Eve
Our First Sensory Meltdown

Christmas Eve was spent fairly close to home (30 minutes or so away – with all the traveling we do, 30 minutes isn’t much) at my husband’s sister’s home with my sister-in-law, my father-in-law, my future brother-in-law, my nieces, and a few others. We were served New York Strip steaks and lobster tails with all kinds of other delicious foods.

We showed up early so the kids would have time to play with their cousins. It started out pretty well. They have a nice toy room the kids played in. Granted, we are not sure if Gus ingested some small toys and things we didn’t know were there until later when we saw him put some in his mouth. Either way, he hasn’t had any issues since, so he’s fine.

Before supper Gus had what I would call a “sensory meltdown”. To explain, a lot of kids with ASD and SPD are hypersensitive to lights, smells, pressure, etc., but Gus is hyposensitive and wants all kinds of sensory input to include pressure, jumping, etc. These meltdowns can happen at any time and are exacerbated when he is tired and when he is not in his own environment with a lot of new people and new things around. Not to mention, it’s Christmastime so there are lots of lights and decorations and gifts. Unlike a hypersensitive meltdown where a child wants quiet, calm, and familiarity, Gus wants input and lots of it. He absolutely would not sit still and was just getting out of control. I eventually took him into a bedroom and turned the lights down and turned on a familiar television show. I let him jump on the bed, as jumping is one of his favorite things. He jumped, he rolled, he was all over the place. He bit me, he scratched me, I was eventually in tears. Yes, children Gus’ age often bite, but for a very different reason. Gus bites because he likes oral sensory input. That’s why he wears a chewy on his shirt so he has that input when he needs it. When using his chewy, he is often able to focus better on tasks, etc. At this point, the chewy was no good, and he was biting me for sensory input. He was so out of control that I ended up sitting on the bed and seating him between my legs and wrapping my legs around his to give him the pressure he likes and to keep him from being destructive and biting and scratching. I then rocked back and forth to give him some vestibular sensory input as well. Nothing was working, and I felt it was best to take him home, but my husband did not agree and said he’d take over for a while. So, as usual, we had to trade off and on so we could each eat and get Gus fed. This was not Gus’ first sensory meltdown, but his first since his diagnoses and me actually understanding what was going on. It’s so hard when this happens, because he is not in control. He is just doing what he feels his body needs. We thought we had gained some ground with his biting, as he hadn’t bit anyone for a long time. Recently, he bit his speech therapist and my husband and me. I plan to talk with his occupational therapists about a sensory diet for when these meltdowns occur. A sensory diet is tools and activities that help a child get the sensory input they need to again feel regulated and end meltdowns. This will involve a lot of trial and error.

As I sat there restraining him and rocking him back and forth and feeling where he bit me throb on my shoulder, I couldn’t help but look to the future and wonder if things will always be this way. What happens when he’s bigger than I am? He’s already tall and a big boy and it’s no easy task to pick him up, etc. Hopefully, with time, trial and error, and his therapy we will be able to help him learn to self-regulate.

It was still overall a good evening, although a very tiring one, as I had a lot to do once we got home, too. I am glad that the kids got to play with their cousins, and Gus did eventually settle down and calmly played in the play room later.

Although I really wanted to take him home and let him and I be in our calm place, I am glad my husband didn’t let me because it’s important for him to be with his family as much as possible and for us to figure out what triggers meltdowns and how to deal with them. It’s just a part of our life now, and we need to get used to it.

Christmas Day

In my unusually festive demeanor this year, I decided I would host Christmas at my house for my family. I invited my parents, my father-in-law, my sister, her fiance, and my niece. I did this in part because I knew it would be a lot easier on Gus and all of us and because I live in the house my father grew up in, and I knew he would really like to celebrate a holiday with his own family in his childhood home.

Not only did I host and invite everyone over, I took on the task of preparing all of the main dishes to include a brined turkey, a pork roast, mashed potatoes, 2 kinds of gravy, and biscuits. My husband made some amazing macaroni so the kids would have something to eat for sure, and he even decided to make an apple pie that was seriously the most delicious apple pie I have ever tasted in all of my life. My sister and mom did help out by bringing appetizers and desserts as well. Man, I ate so much it was just ridiculous. That’s what it’s about, though, fellowship and eating, being merry, and rejoicing and remembering the reason for the season.

Christmas Day was a breeze in comparison to Christmas Eve. The kids were in their own environment and it made things so much easier for Augustus. When he got to a point where he was tired, he simply laid down and went to sleep. Unfortunately, he fell asleep just as we were about to open gifts. I say unfortunately because my family and I wanted to see him open his gifts. It was not unfortunate for Gus. He was in his environment and comfortable and needed sleep; so, he slept rather than having a sensory meltdown not wanting to go to sleep because of all the sensory input around and wanting more.

All in all, Augustus doesn’t care about opening gifts or getting presents. Yes, this is sad in a lot of ways. He’s not feeling the excitement and joy of the season. It’s also okay though, because Gus is almost always happy because he doesn’t worry about things like holidays and gifts. He lives every day seemingly not worrying about the past or the future. When it comes down to it, he is neurologically different than most, but maybe he is in some ways neurologically superior because he doesn’t waste time on things and doesn’t sweat the small stuff. He is a lover and he is a worker. It amazes me to think how hard he works every single day just to do the things we all take for granted.


Ada enjoyed the magic and festivities that most kids love during Christmas. We left cookies and milk out for Santa, and even carrots for the reindeer. Santa even left her some cookie crumbs to eat, which she was super excited about. When asked what her favorite gift was she replied “The candy!” I couldn’t ask for a better daughter. She is the perfect sibling for Gus. She has a heart of gold, and I plan to nurture that. She is also a very strong willed little firecracker when she wants to be, which I also plan to nurture. A perfect combination.

The above was our holidays in a nutshell. I wouldn’t change it for the world. This is my messy, happy, sad, confusing, frustrating, enthralling, exhausting, amazing, and blessed life. I have been given this life and these circumstances for a reason, and I’m here to show everyone that it’s all meant to be.

I hope you all had a memorable and enjoyable holiday season.

Be watching for more posts in the New Year!

– AMomsFaithUnbroken

Today I was hit right square in the “feels”. My phone greeted me this morning with my Facebook Memories, which are a recap of things you’ve shared on Facebook in years passed.

One year ago, I shared a picture and an update about Augustus, who had just turned 18 months old.

The caption to this picture read:

This guy is 18-months-old today! 😲 Can you believe it!? I can’t. 😒 He is a boy of few words, which I think is largely in part to the fact that his older sister never stops talking. πŸ˜„ He is always on the move.πŸƒβ€β™‚οΈ Even when he watches tv, he walks around. He loves to crawl up onto things and climb. πŸ˜“ He has grown 3 INCHES in the last 6 months, and is very close to being off the charts for his height. His height to weight ratio is perfect. So, in other words, he’s a big ol’ healthy boy! πŸ’ͺ He’s still a big eater and isn’t too picky. πŸ— He adores books and asks to be read to often. πŸ“— He also likes to sit by himself and look at books. He’s really into throwing and rolling balls around.⚾️ He loves anything with wheels. 🏍 He has a little camoflauge blankie with a stuffed animal deer head on it that is his absolute goto for comfort. ☺ He has to have it to sleep. 😴 He’s big on sleep. He gets a little fussy and wants to go to bed or take a nap and is all for it. πŸ‘ He still likes to wrestle and often uses his head as a weapon. 😏 His sister likes to boss him around and even push him around. 😣 He’s such a lover, though. He usually doesn’t fight back. He loves to give hugs and kisses, and loves to rest his head against mine for some snuggles. He is the sweetest. πŸ˜πŸ’™

Sweet, huh?

Then, in the comments, I elaborated on some details my friends had inquired about:

At this time we were starting to come to terms that maybe something was going on with Gus, but just weren’t sure, and not yet willing to admit it.

I could take the caption to that adorable picture and pick it apart, piece by piece, and show you that what I was describing, although very vaguely and unaware, were some of the symptoms of autism spectrum disorder and sensory processing disorder.

Autism taketh away…

Notice in the comments I mentioned the words he was using? Although they were few, he was using words; for a while. They eventually went away.

That’s what really hit me. It hit me that I’m not even sure I remember what that sweet little voice sounded like, because I never thought it would go away. We all take so many things for granted, such as the voices of our loved ones. I was fortunate enough to hear him say “mama”, which is more than some can say, and I am blessed in that.

That’s what autism has taken away. It took away my son’s voice; his ability to communicate verbally. What I wouldn’t give to hear him say “I love you.” I’d even love to hear him argue with his sister.

While he still makes noises and sounds, he does not speak. Maybe he will again one day, but maybe he wont.

Autism took away the future I saw for my son and my family.

Autism took the wind out of my sails (initially).

Autism rules my schedule and routines.

Autism filled me with doubt and changed the way I see almost everything.

Autism requires my son, my baby, to work so much harder than most to be socially accepted and understood and to learn. He learns differently.

He is different not less!

Autism giveth…

Autism has given me absolute proof that love requires no words. None. That in itself is probably worth more than everything it has taken away.

Autism has given me a new outlook on life and a new way to view things.

Autism has broadened my horizons and introduced me to things and people I would have likely never come across otherwise.

I’ve got some hella wind in my sails now! It took it away, but sent it back with a vengeance.

Autism has given me understanding.

Autism has given me an understanding that words are not needed to communicate.

Autism has given me strength; so much strength.

Autism has renewed my faith and renewed my trust in God.

Autism has given me an entirely unique, loving, affectionate, smiley, and happy son to fulfill my life; my family’s lives.

God has entrusted me with what is perfect and planned for me.

I always wanted to be a mother. That’s all I ever knew. When it became obvious that may never happen I turned to fertility treatments and had my beautiful daughter. Then God, in his own timing, blessed our family with this amazing and unique little boy who would bring us all together and build us all up in strength, understanding, and love, and show me a side of motherhood many don’t see.

Both of my children are perfect for me and to me.

Autism: It Giveth and It Taketh Away

– AMomsFaithUnbroken

Autism: It Giveth and It Taketh Away