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

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When the Clouds Get Heavy

My son (diagnosed with ASD/SPD) had quite an “episode” in church today. No, this isn’t the first time this has happened or the first public place this has happened, but today it was just harder. Today was harder because it’s been an emotionally draining month thus far, especially this last week, and I’m not at my strongest right now.

Some days things happen that bring feelings right to the surface. I have had to learn that I can only deal with things as they come and in the present, and that the past and future are no place to dwell. If I were to dwell, I’d never be able to carry what’s here and now. Some days, though, it gets really heavy trying to carry it all, even just in the here and now.

Sensory Storms

My husband has given the term “sensory storm” for those times our son is dysregulated.

What really gets me is that I sometimes feel inadequate in dealing with my son’s needs, especially those of the sensory variety. I am not like him, and therefore cannot understand just what he needs. During these storms, he is searching for some sort of input to “regulate” him, but I am unable to give him what he needs. Therefore, he acts out and is in a state where I am unable to even attempt to reason with him. He is seeking something he cannot appropriately express to me. This is frustrating for us both. There are days I am able to provide at least some of what he needs, but then there are days like today, when I just can’t figure it out.

At home, this problem is not as frustrating because he is able to behave and seek as needed to find whatever his body needs to bring him “back down”. In a public setting, these storms rage at their worst. He is out of his element. He acts out physically and emotionally. Sometimes this means inappropriate laughing or giggling, crying, throwing things, kicking, pinching, biting, thrashing, jumping, yelling, screaming, grinding his teeth, throwing his head back, pressing up against anything he can, and any other thing he can think of to try to find whatever form of sensory input he needs to feel “normal”. To an outsider or stranger (or just most people in general) this just looks like a naughty little boy throwing a fit or tantrum — I often wish that was the case, as I would better understand how to handle that.

I do my best to try to handle these “sensory storms” in public, but there is only so much I can do. I have a few tips and tricks up my sleeve, but they don’t always work.

It’s not what other people think of me or my son in these situations that hurt me. What hurts me is that I am at a loss as to how to provide my son with what he needs.

I do my absolute best to be strong and calm because whether I know how to calm these storms or not, I am my son’s calm place. I am my son’s safe place.

I guess I am not sure if I will ever fully understand how to figure out just exactly what he needs during these storms, but I know I will always keep trying and that he and I will continue to learn together.

-AMomsFaithUnbroken

Of Note: This morning I woke up early before my family feeling well. I decided to spend some time working in my devotional journal titled: “Looking Up – Trusting God With Your Every Need” produced by Beth Moore with Lisa Guest. The devotion I opened up to started with: “Lord, You are the source of Light – the Light of hope and healing of truth and guidance; Light that darkness can never extinguish.” I worked through the exercises and thought about what areas in life I could receive more of His Light. This exercise set the tone for my day, and boy am I thankful it did.

Sensory Storms

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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

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Applied Behavior Analysis

What is it?

A therapy with a scientific approach to understanding and improving or changing behaviors. AKA Change the environment to change the behavior.

Wait…

What is behavior?

Seems simple enough, but before I go on, let me first express that often the word behavior is associated with “bad behavior”, but there is big importance in that little adjective before the word behavior.

Behavior is simply what we do and how we act.

The dead man’s test…

To better understand what a behavior is, we were taught to use “the dead man’s test”. Can a dead man do it? If he can, then it is not a behavior. I know, a bit confusing, but once you think about it and kind of test yourself it all starts to make sense.

How does ABA therapy work?

ABA therapy is not based on figuring out how and why one behaves, but replacing any given behavior with a more appropriate or beneficial behavior.

How is this carried out?

A lot of positive reinforcement and repetition.

The therapists chart everything, and I mean everything. Therefore, there is data to back up what behaviors are being improved upon or changed.

When & Who?

You most often hear about ABA therapy used for persons with autism BUT ABA therapy is also used for people in relationships and for elderly to help them better cope with memory loss and loss of certain abilities as they age.

It is important that children begin ABA therapy before the age of 4 to see the best results, especially in those with autism.

It is an extensive therapy with best results being carried out 20 hours a week.

ABA therapists are licensed psychologists that have completed a training program and obtained certification through the Behavior Analyst Certification Board. Based on what the U.S. Beareau of Labor Statistics reports, licensed psychologists must complete at least a bachelor’s degree. Psychology Today states that to obtain the Board Certified Behavior Analyst (BCBA) credential, the ABA therapist must complete at least a master’s degree and a specific number of hours of clinical education and experience.

ABA therapy is becoming more and more recognized as an effective therapy for anyone needing changes in behavior.

I was told by Gus’ first psychologist he saw when he was diagnosed with autism spectrum disorder and sensory processing disorder that ABA therapy was seen as the “gold standard” for children with Gus’ diagnoses.

The Controversy

ABA therapy is a very controversial subject among those with autism and parents of children with autism. As I do with everything in life, I extensively researched, studied, and consulted. Per my findings, I decided ABA therapy would be beneficial for my son. I read the horror stories from those that received the therapy in the past, and those who are vehemently against it. Thankfully, things have changed in the medical field and things aren’t as they used to be. There is still some controversy even with ABA therapy today, but I stand by my decision and am glad I did because at three weeks in we are already seeing amazing things.

Also, nothing is addressed or worked on in therapy without MY consent. I am 100% welcome to attend Gus’ therapy sessions, and I do.

Gus’ ABA therapist has and is working hard to build a relationship with him. She will be a big part of his life for a long time. He adores her and that will make things that much easier.

During this journey with my son, I have seen him with a lot of therapists. Some go through the motions, but then there are some that go the extra mile.

ABA THERAPY & GUS

What is Gus working on in ABA therapy? A little bit of everything. We set specific goals, and he is already nearing completion of some of them. He is working on eating with utensils and keeping his hands out of his mouth while eating. He is working on following verbal commands. He is working on using his voice to request things. He is working on communication in many aspects. He is working on conquering his fear of public restrooms. He is working on generalizing things. He is working on joint attention. He is working on appropriate play with others. He is working on so much more. All of his goals are broke down into steps, and as he masters one step we move on to the next until he has conquered the task and goal. He is thriving!

ABA Therapy & The Family

My husband and I also attend sessions with Gus’ ABA therapist to be educated in ABA therapy itself, as well as what we need to do at home to apply what he is doing in therapy at home. Gus is very smart. If we don’t have the same expectations of him at home as are expected of him in therapy he will figure out that he just has to work in therapy and home will be a free for all. ABA therapy also works with all of his other therapies and therapists to be sure everyone is on the same page and that he is shown consistency in all aspects. It sounds like we will also have meetings with all therapists at once here and there to go over things.

Applying things at home takes a whole lot of patience and a whole lot of time. While I am not perfect and sometimes let things slide, I try to remember that all of this hard work now while he is young will more than pay off as he gets older.

Our Schedule

Gus has been receiving ABA therapy for 3 weeks now. We started at 1 hour a day 3 days a week and quickly moved to 1.5 hours 4 days a week. This coming week, we plan to do 2 hours 3 days a week moving to 3 hours a day 4 days a week in July and going from there.

Gus also receives speech therapy and occupational therapy at home on Mondays and Thursdays in the morning before we leave for Rapid City. He also still receives occupational therapy, speech therapy, and physical therapy once a week at LifeScape.

Yep, that means we travel 83+ miles (166 miles round trip) up to 4 days a week. It’s been a spendy venture, but once we get going insurance will reimburse mileage; it just takes a while. I also had to quit my job, as there was just no way to schedule work around therapy and therapy around work. I still fill in when I can, though.

I take Ada (Gus’ older sister) with us 1-2 days a week. She attends part of therapy with him and eats lunch with him and the therapist and then works on joint play with him. Then, Ada and I go play outside, as she understandably has a very hard time keeping quiet and allowing Gus to focus. The other days of the week, Ada attends daycare.

It’s hard on me…and all of us, really. BUT what’s important to me is how Gus is handling it. As long as it isn’t too much for him it’s not too much for me. We are allowed to back off on therapy at any time we feel we need to. Gus is thriving right now. I keep in mind that a few years of this very intense schedule and intensive therapy will pay big later.

I also failed to mention earlier that Gus is the very first ABA therapy patient to be accepted at LifeScape in Rapid City, SD. Until now, ABA therapy was not offered at LifeScape’s Rapid City location. For a long time, we were adjusting to the fact that we would have to move to Sioux Falls, SD part time for an undetermined amount of time. Talk about STRESSFUL, but we were ready and willing to do what we thought best for our family, and kept moving forward, which is why Gus was accepted as the first patient; we already had everything done and ready to start at LifeScape in Sioux Falls, SD, so they were able to just transfer all of that information to their Rapid City campus.

I’ll keep this shorter by just sticking to the topic of ABA therapy in this blog post. We have a lot going on, and I have lots I’d love to share, but will do so at a later date.

Thank you for reading and taking the time to learn a little more about a life a bit different.

I’m learning all the time, and am always happy to share.

Signing off now.

– AMomsFaithUnbroken

ABA Therapy

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

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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

Ada & Augustus decorating eggs at their grandparent’s house for Easter.

Decorating Eggs

We started our Easter festivities by decorating and dying hard boiled eggs at my parent’s house. Ada has the process down and speeds through her decorating. Augustus usually has little interest in the process and would prefer to eat the eggs; shell and all. While he did try to take a few bites, I was very proud of him, as he sat on his dad’s lap and later my lap and really paid attention and even drew on some eggs himself.

After decorating, they (we) got to find our Easter baskets from Grandma & Grandpa hidden throughout the house.

The kids received lots of candy, some outfits, shoes, and lots of other goodies. Ada’s favorite is always the candy. She only spilled her box of nerds twice. Ugh. Augustus’ favorites were probably the bubbles and a light up ball. (We work with bubbles a lot in speech therapy.)

Ada & Augustus popping bubbles at their grandparent’s house.

Easter Sunday

Augustus was happy and awake and ready to take on the day when I woke up Easter morning. He always wakes up happy, and I love that.

Now, Ada is a completely different story. First of all, I had to wake her up. She has been going through a phase with sleep. She will sleep very well a few nights in a row, and then for whatever reason, will fight sleep, tooth and nail, for a few nights. She fell asleep very late Saturday night, so wake up this morning was not easy.

Ada is always excited about church, and still was this morning, but she was weepy about everything. She REFUSED to wear her pretty Easter dress from grandma, or any dress for that matter. She wanted a shirt “with just one thing on it”. Okay… Dresses are “too itchy”. She could not be forced, bribed, or convinced in any manner, and we were out of time. “Pick your battles.”, as they say. She cried because her dad offered her some money to take to church for the collection plate. She cried because her dad asked her if he should try to catch the Easter Bunny for her while she was at church so she could see him. A morning of tears all around. Gah!

The United Church in Philip, SD, Easter Sunday 2019.

Church

Grandma, my sister, and my sister’s daughter picked us up for church. It was a great sermon, and the church was beautifully decorated. Ada was tired and very clingy. Half of the sermon I was trying to hold both kids. Eventually, Gus migrated over to grandma for the latter half of the service. He was shoeless. They fell off. Oh well.

Augustus at church.

Holy Communion

As grandma & Augustus arrived at the table to take communion, Augustus decided to grab the remaining half loaf of bread off of the table and attempt to eat it. Thankfully, Aunt Emily’s reflexes were top notch, and she got it from him before he took a bite. (Emily was behind grandma & Gus and I was behind grandma & Gus and Emily & Harley.) Gus was mad, he wanted some bread. I didn’t pack a snack, either. Normally I do! Grandma got him calmed down, and he was good other than getting a little wild towards the end of service and giggling up a storm.

Grandma, Ada, and Harley at church.

Easter Fun

When we got out of the car to head inside the house, one of Augustus’ shoes fell off again. The moment we got into the house and up the stairs he faceplanted. He hit the ground hard with a very loud “thud” there was blood on the floor when I picked him up. He had a bad nosebleed. He got blood all over his outfit and me and himself and the floor. My poor boy! Of course, the Easter Bunny had stopped by while we were at church, and Ada could see eggs he had hidden. So, we had to slow her down and have her wait until Gus was done bleeding and feeling better. It was stressful, and I may have shed a few tears myself from the stress and because I was being selfish and feeling bad for myself because Gus doesn’t enjoy the usual festivities and excitement of holidays… Pity party over!

Gus wanted to calm down and relax and watch TV. Ada went and found the eggs the Easter Bunny hid, as well as her Easter basket.

We gave Gus his Easter basket, which had a soccer ball, and he was VERY excited about that ball.

Augustus and his new soccer ball.

Ada was all about the candy!

Ada and her M&Ms in her “not itchy dress” and shirt “with only one thing on it”.

Happy Easter to all who celebrate.

He is risen. Alleluia!

Celebrating Easter

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We’ve all heard these or something similar…

  • “Get your ducks in a row.”
  • “Get your shit together.”
  • “Get your poop in a group.”
  • “Check yourself before you wreck yourself.”
  • “All things in moderation.”

Put simply, they are all a way of saying to “get it together” and find balance in your life.

Balance

Balance – a condition in which different elements are equal or in the correct proportions.

Balance is my favorite word in the English language. If we can find it, we can live a meaningful and fulfilling life.

But why is it so hard to find, and even harder to maintain?

I can’t answer that. Can you? It’s something I have struggled with since as far back as I can remember.

I truly strive to go above and beyond in almost everything I do. My problem is that I get too focused on what is requiring the most attention at the time and fall behind on everything else, and my ducks start wandering off, get lost, and then there is a panic or pity party (sometimes both) generally leading to making things worse and creating more problems.

I know this about myself, I can see it; so why do I keep experiencing it in a continuous loop?

How can I fix this? Do I need to let a few ducks fly so I can focus more attention on the others? Can we truly “have it all”?

I don’t know. I think life is one big balancing act, and we spend most of our life trying to find our balance…and we lose our balance All. The. Time.

Unrealistic Expectations

It seems to be very common for people to reach a certain age and realize they are not where they expected to be or wanted to be and maybe don’t even have some of their ducks in the pond yet. That is normal, and it’s totally okay. I say that, I know that to be true, but I still struggle with it. We all do. The answer is in having the attitude and willpower to look at things realistically. The grass may be greener on the other side, but it also may be fertilized with bullshit. You see what I am saying?

We have to learn to expect the unexpected; and for people like me, that really sucks. I like plans and details and structure. Although it is happening slowly, I am learning to take a step back and let some things go for the sake of my (and others) sanity, although it is an everyday struggle. Things gnaw at the back of my mind, and sometimes instead of facing them and correcting them I find something else to focus on, even if it’s not a good thing, and I know in the back of my mind I am only making things worse.

Taking Steps in the Right Direction

I have often shared how overwhelmed I feel and that I sometimes feel like I am drowning. I am happy to say that I feel like I do have my head above water now, even if I do go back under here and there and have to come back up gasping for air. In other words, I still often lose focus and colossally mess up. I am pretty sure it will always be that way, but maybe we can get the “colossally” part out of there.

I AM A WORK IN PROGRESS

I am my own worst critic. I am very good at owning up to things and accepting consequences for my actions and being honest. Those are attributes I take pride in. What I am not good at is accepting that I make mistakes and mess up. I suffer with guilt, which is probably my least favorite of the human emotions.

Guilt vs Remorse

Guilt and remorse are very different.

Guilt is geared toward self. Guilt is paralyzing. Guilt is heavy. Guilt is fuel for self-destruction. Guilt is necessary, but nowhere you should stay.

Remorse is awareness. Remorse is aimed at the action that took place, not self. Remorse is where we need to transition to from guilt. Remorse is fuel for constructive action.

While I am good at showing remorse on the outside, I keep guilt on the inside, and if that doesn’t change it will eat me alive.

Forgiveness

I am not a bad person. I am a very empathetic person. I am human. I make mistakes. I own up to my actions the best I can. I am learning. I promise you that. Even if it takes making the same mistake one hundred times before I learn, I will get up, own my shit, make things right, learn, and Let. It. Go. Forgiving myself is the duck that needs to take some priority right now, but I will not let the other ducks run amuck.

Keep My Eye on the Prize

I’m forgiven. You’re forgiven. Now forgive yourself.

– AMomsFaithUnbroken

Herding Ducks

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