Summer is here. We’ve already used almost an entire bottle of sunscreen. We all have tan lines. That’s how it should be.

I am happy to say that our local swimming pool is OPEN, with precautions in place. I know just how lucky we are. Most public pools throughout the country are closed down amid the Covid-19 panicdemic. Going to the pool with my two children has and always will be an adventure. I have to admit, until this year, we had only been to the local pool MAYBE twice and my oldest is five-years-old. This was only partly due to our busy schedule. The other part was ME. Having two small children close in age made going to the pool terrifying. The fact that one has zero danger awareness and the other is quite cautious and that neither of them can swim makes for a wild time. Now that they are older and I found them floaties they can wear, life at the pool has gotten much easier. I have succumbed to the fact that I will most likely never be the mom that gets to sit on the side of the pool reading a book and soaking up the sun. I will always be the mom in the pool. I’m okay with that. Fortunately, both kids love the water. As I stated, Gus is fearless! He will float/swim himself anywhere and has zero fear. Ada is very cautious, doesn’t like to get her face wet (especially not the eyes), and usually has a tight grip on me or someone else. What is a sensory seeking little boy’s favorite part of the pool?: The jets where the water comes out on the side of the pool. He will find one of those and hang out there as long as he can, placing his hand(s) in front of it. Ada took swimming lessons this year and has gained a lot of confidence. I really want Gus to learn to swim, but will have to maybe wait until he is a little older and find somewhere that specializes in teaching those on the spectrum. The hardest part of going to the pool with the kids, at least when I am alone, is leaving. I have to get the kids and myself dried off, gather all of our things, and get everyone’s shoes on all while holding Gus’s hand. If I don’t, he will take off and jump right back into the pool.

I also set up an inflatable pool in our yard. Both of the kids enjoyed that. What did a sensory seeking little boy enjoy most?: Leaning onto/out of the pool so the water would cascade out to make mud. He also enjoyed getting in and out and bolting at a dead run. A good workout for me.

Speaking of bolting, we are doing our best to try to have a privacy fence installed around the perimeter of our yard. It would be such a relief to be able to be outside and play with BOTH kids not have to worry about Gus running out into the street or getting into any other forms of danger. He could then RUN without having to have his little hand in mine and burn off that excessive energy he carries around with him at all times.

While we are on the topic of excessive energy…I always talk about Gus’s energy level. People kind of brush it off in thinking “He’s a boy. They’re wild and energetic!” I’m like “No, you do NOT understand. I am talking holes in the wall, biting holes in my curtains, literally climbing the walls, like nothing I have ever seen before!” We can’t have lamps in our house because he will break them. I am talking hyperactivity like I have never seen. Anyway, one of his therapists and I were talking…You know how they have to be so very careful about what they say because they are not “doctors” and can’t diagnose things per se…Well, she finally admitted to me that she has worked with well over 100 kids on the spectrum and Gus is “most definitely the most active” she has ever worked with. She told me that she has worked with a lot of kids with a lot of energy, but apparently Gus takes the cake. Honestly, I feel vindicated! That being said, it has been recommended and we have decided that Gus should see a clinical psychologist again. Clinical psychologists diagnose and treat emotional, mental, and behavioral conditions. A clinical psychologist gave Gus his diagnosis of ASD/SPD. We have no idea if there is anything more to his behavior than his ASD/SPD, but we want to rule anything else out. His abundance of energy and “hyperactivity” along with his extreme sensory seeking tendencies make it very hard for him to focus and pay attention to learn. Some days are definitely better than others, but we really want to make sure we are doing everything we can and dealing with and treating everything we need to for him to live his best life. Getting him in to see the clinical psychologist is going to be another of the many “jump through hoops” processes we come across in this journey; ESPECIALLY, with Covid-19 going on. I have to get an appointment with his primary doctor just to get the referral to a clinical psychologist and then hope they are taking patients anytime in the near future. It’s all a big headache, but we will get it done.

ASD is a SPECTRUM. No two individuals with a diagnosis of ASD are the same. Gus seems to be quite the little mystery. His therapists have told me more than once that he makes them work and think and really flex their skills. He can exhibit a behavior for a few weeks and then all of a sudden it’s gone for a few weeks, only to reappear again. Every time we meet a new physician or therapist, I know they think I’m nuts because explaining Gus is not easy. There are no simple answers of “yes” and “no” to their questions.

Right now we are dealing with a lot of crying. Gus is “minimally” verbal. Therefore, he cannot tell me, or anyone else for that matter, why he is crying. He will sometimes cry for up to an hour at a time. It’s real tears. A sad cry. Could this be a medical issue? Is he in pain? Is this an attention seeking behavior? Is this an automatic behavior? Is he being denied access to something he wants but cannot portray? Can I just for a second express how amazingly hard it is to watch your baby cry and have no idea how to make it better? It’s terrible. I am as “in tune” with Gus as a person can be, but that doesn’t mean I can always figure it out, and to be blunt, it sucks. We have a functional analysis (FA) on the schedule for this next week. A functional analysis is a completely controlled environment in which you try to provoke the undesired behavior. So, in our case, the undesired behavior is crying. This will at least HOPEFULLY help us narrow down if this is behavior related or perhaps medical. Either way, we are doing the FA, as well as having him be seen by his primary physician AND a pediatrician that specializes more in children on the spectrum. Of course, this is all pending referral and Covid-19 hoorah-doorah.

In awesome news, Gus is learning! He knows some shapes and colors. Don’t get me wrong, he is always learning, but I am talking preschool-type learning. He understands so much more than people give him credit for. Just because he cannot say a word absolutely does not mean he does not know what a word means.

We get words out of him here and there; primarily, food and drink requests, although he generally has to be prompted to do so. He very much prefers physical communication. He would prefer to take you and show you. He would prefer to place your hand on what he wants or needs.

We are still working on potty training to a point with minimal success. A lot of this is on me. Ideally, I would like him to be potty trained by the time it’s time for school, but I also have other goals I find more important and appropriate that he is more ready for in the meantime. It will all come together and work out. 

We had a lot of fun this weekend celebrating America. I never know how Gus will react to fireworks, but this year he loved them. In typical Amanda fashion, I could be seen with a punk in my mouth like a cigarette trying to light it with a lighter with a jumping and wild Gus holding my other hand with Ada looking on fairly impatiently. Thankfully, as usual, I eventually recruited the help of my family. Grandpa, Grandma, Aunt Emily, and Uncle Anthony were to the rescue. Gus likes fireworks a little too much, and would take off after them. Dane eventually returned from work and put Gus on his shoulders while he lit off some Roman candles, and Gus thoroughly enjoyed that. We had minimal meltdowns and tears, and only a couple of physical altercations.

We also attended the local firework display our volunteer fire department puts on at the lake. That went much better than last year with just a few tears, scraped knees, and some physical altercations in the wagon. The wagon was a God send, as we could strap Gus in there to watch. Fireworks happen when it’s dark and late, and Gus does not get “tired”; he gets absolutely wound up until he passes out from exhaustion. He and the rest of us enjoyed the show, and both kids were asleep by the time we got back to town.

We also attended a family get-together and celebrated some postponed birthdays. On the short trip there, Gus somehow got a bloody nose that went unnoticed until we pulled up. Therefore, I spent several minutes in the 100 degree heat trying to get his face cleaned up and his nose to stop bleeding. He had smeared blood over his entire face and had blood on his shirt. Thankfully, Dane was present to help hold him. Have I mentioned the hyperactivity and that he HATES having his face touched? That was an adventure that very nearly had me in tears.

Gus turned FOUR in June and his sister turned FIVE in March. It’s hard to believe.

As always, I have a whole lot of other things I would love to put into words sometime, but for now this is it.

Enjoy SUMMER, and I will try to get back to blogging on a more regular basis. It’s good for me.

       -AMomsFaithUnbroken

Summertime Update

It’s been a while! Like two and a half months since I’ve even looked at my blog. I have so much I should be doing around the house right now since I am home, but it will be good for me to get everything typed out and give everyone an update on life. I know I don’t see family and friends near as often as I’d like to, and you all show us so much love, you deserve to hear what’s going on, too.

Augustus and I are logging 1000+ miles a week going back and forth to therapies at LifeScape in Rapid City and at the school in Philip. As the title of this blog implies, it’s worth it. It’s not easy and not always a lot of fun, but worth it.

Gus does ABA therapy at LifeScape five days a week, and also does speech, OT, and PT there once weekly each. He has speech at the school once weekly, too, and also spends some time with the special education provider at the school once weekly.

ADA

Miss Ada is in preschool three days a week, and ends up going to daycare four days of the week. Since Augustus and I are out of town and Dane is at work (not in town), Grandma Lisa and Aunt Emily are our saving grace with this. They make sure Ada gets picked up from preschool and taken to daycare each day. She loves preschool, and loves everything about daycare except nap time. Gus and I have to leave before preschool starts a couple of days a week, so Dane has to stick around to be able to get her to preschool (Again, must praise his employers on being accommodating.)

Ada comes to LifeScape with Augustus and I once weekly on Fridays. At first it was really hard (on her and me), because she felt left out having to be quiet or wait in the waiting room while Gus was working. I can see how what Gus is doing and learning looks like a lot of fun to her. Fortunately, the therapists are great, and we have found ways to incorporate Ada into things and to allow her to have some fun, too. Gus has lunch as part of his therapy, so Ada has lunch with him. She also gets to come along for sensory breaks in the sensory room, which is a lot of fun for both of the kids. She has gotten better and understands better now that she’s been tagging along for several months now.

I can’t believe she will be five in just over a month. She is a fan of everything superhero right now. Her Skye “pups” are her favorites. She is super into “Sam Sandwich” (a Disney short) and has a newfound love for “Ben & Holly” (a show on Nick Jr.) She has also been into the Power Puff Girls, which I can get behind, as they were something I watched as a kid. She can write her name and most numbers, although tends to get a few of the numbers backwards. Her drawing skills seem to improve all the time. She is still talking more than anyone I’ve ever met. She is crazy articulate and clever. I love when she makes up songs to sing to us.

We work hard to make sure Ada has plenty of attention along with alone time and fun with mom & dad.

She is becoming such a good helper. Her tender heart and fierce attitude are seriously an inspiration to me. When her brother is having a hard time, she is the first one to try to comfort him. She will bring him her tablet and turn on some nursery rhymes for him, or find him a blanket, or ask “Alexa” to play him “Wheels on the Bus”, his favorite. She has also come a long way in understanding some of the harder things that we have to deal with regarding Augustus’ behavior. He sometimes lashes out at her, and she has really learned not to take it personally and that most likely he is trying to tell us something and is frustrated about it and does not know how to relay that other than lashing out. My mommy heart aches in the times she says “But Gus can’t talk!” or “Gus doesn’t play right!” Fortunately, most of the time, she is patient with him. One of their favorite games to play is when Ada follows Gus around and acts and plays like he does; jumping, wrestling, squealing, etc. Personally, I think they are perfect for each other as siblings.

Ada saw a dentist for the first time this month. She has always been pretty good about brushing her teeth. Unfortunately, she has such a petite and tiny mouth that all of her teeth are very, very crowded in there. Her teeth look pretty healthy, but on x-ray it turns out she has a lot of cavities and decay between her teeth, especially her back teeth. The dentist told her that: Number one, her teeth are so crowded in her mouth that even brushing and flossing could only do so much, and that number two, a lot of dental stuff is actually hereditary. I was never sure if that was true or not. It sounds like it most definitely is. Dane has a family history of “bad teeth” and has “bad teeth” himself. Poor Ada has been blessed with her mama’s eyesight and her daddy’s teeth. I am shaking in my boots a bit, as Ada is going to undergo a dental procedure this next week at the Same Day Surgery Center in Rapid City. They are going to put her all the way under, as in IV anesthesia. She is so tiny, and it just scares me. While this route was not necessarily totally necessary, it was our best option. She would have had to have 4+ appointments at the dentist to take care of everything that needs done, and the dentist and I felt that would be fairly traumatizing for her. Plus, with the way her teeth are looking now, she will have plenty of appointments in the future. We don’t want her terrified so early in the game. I am of the opinion that if they are baby teeth “Oh well, they will fall out anyway.” BUT the teeth Ada needs fixed are her molars, which she has many years left with. Wish us luck, say a prayer, send us good vibes.

AUGUSTUS

The biggest thing we are working on now with Gus is potty training, and oh boy, it’s an adventure. I must sing my own praises about potty training Ada. I started very early, in fact, too early, and had to wait a bit and had great success when it was time. Gus, now that’s a very different story. First of all, he’s a boy. I don’t care what anyone says, boys are harder to potty train. Then you add in very limited communication, sensory processing disorder, developmental delays, and autism and it’s straight insanity, in my opinion. Plus, he’s a big kid, so a little kid potty just isn’t an option, so we are kind of tied to the bathroom a lot. Truth be told, my bathroom looks like a war zone.

I do have to say, that while I am entirely overwhelmed and somewhat discouraged with the process, I am thankful it is even an option to try at this point in the game. I was not sure if he would be 3 or 5 or 10 or if he would never be ready to try potty training. I am at a point in the process where I am not entirely sure if we are making progress or not. I am confident that one day he will be potty trained, though.

Right now, it’s basically me taking him to a toilet and sitting him there every 40-ish minutes. I put him in underwear right away in hopes he would dislike being wet/dirty. He seemed to dislike it, at first, but now I have kind of been sticking to Pull-Ups because I am beginning to think he just really does not care, and in part because all of his underwear are dirty and I haven’t had a chance to wash them. Ha.

I show him a PECS card with a picture and the word potty on it. I then take him to the bathroom, and before walking in, I show him the card again and get him to look at it and either hand it to me or say something (anything, truly) to acknowledge that we are going potty. Why? Because the real trick in this whole process is going to be getting him to let someone know when he needs to use the bathroom. I was told he could catch on quickly or that it may take many, many years.

Positive reinforcement is HUGE for Gus. His favorite food ever is fruit, especially blueberries. Therefore, I use blueberries for positive reinforcement. He gets one for trying and a few for peeing on the potty. I tell him all the time that if he poops on the potty he gets the entire container of blueberries. Silver lining – blueberries are better than candy.

It’s also hard, because a lot of it is on ME. I have to get him to the bathroom, work with him to try to teach him to help me get his pants and underwear down, and then I physically have to sit his 40+ pound body on the toilet. Surprisingly, he sits on the toilet fairly well most of the time, which I was definitely not expecting. Getting him to keep his hands on his lap and not in the toilet, or flushing the toilet, or playing with anything he can reach is another story. I am also supposed to keep data of every potty experience we have and if he was wet/soiled/dry and if he went and the time, etc. etc. While this will be helpful information, it’s a lot of freaking work and time out of the day. I did a pretty solid job the first couple of weeks, but weekends I tend to give up for two reasons. One, I just want a freaking break. Two, I need to get things done!

He has had some success with peeing in the potty. I have yet to get him to go #2 on the potty.

Like I said, I cannot decide if he is really ready. I know I said I was ready, but at this point I’m not sure that I am either.

The older Gus gets, and the more therapy he receives, the more aware he is. Hallelujah! BUT the more aware he becomes, the more frustrated he becomes in regard to communicating. Therefore, we have had some behavioral type issues regarding this, as well as some behavior we (as in our family and his therapists) truly cannot figure out.

It was recommended I take him to the doctor to rule out any type of health concern that may not be obvious to us. This included a trip to the dentist, which actually went over phenomenally well. They told us with him liking to chew on things and using chewelry that they were surprised how straight and healthy his teeth were. They chose not to do x-rays or a cleaning or anything as not to totally traumatize him, especially since things looked good and he is only 3. Baby steps. He was cleared of any underlying health or dental concerns.

Just take a minute to think about this…Can you imagine how hard and frustrating it would be to be a small child and be in pain or discomfort and not be able to find a way to let an adult, parent, or someone that could help you know? It’s heartbreaking to me. Whenever he get’s sick or seems to be not himself I really worry. Thankfully, I am his person and spend basically all of my time with him so no one knows him as well as I do.

It’s also very hard when your child physically harms you. It’s a feeling that’s hard to describe. I don’t mean when a toddler or small child tests the waters and slaps or hits you. I am talking about when Gus is in a mood and struggling and hits me in what seems to be anger or frustration. I have been slapped, scratched, kicked, hit, and often get my hair pulled. He will sometimes grab my glasses and seemingly try to crush them in his hands. It is very hard not to take it personally. He is not mad at me or hurting me out of spite, he is trying to communicate.

When this happens, he often grinds his teeth and puts his hands into fists and makes a lot of not so happy sounding noises. Sometimes, it is pretty easy to figure out what’s going on. Perhaps he is being denied access to something he wants. Perhaps, he wants something or needs something and cannot tell someone. The other confusing “perhaps” is that perhaps it is an automatic behavior.

As you are probably aware, persons with autism almost always have “stims”, or things they do that just make them feel normal or “regulated”. For instance, Gus flaps his hands and does a lot of jumping. Those are stims. When a behavior continues to happen and there is no obvious trigger, one starts to wonder if it could be automatic behavior, kind of like a stim.

We are in the process of working on figuring a lot of that out. There are certain tests/experiments (one being a “functional analysis”) we will go through to try to see if we can address some of the “problem behaviors” that we cannot link to denied access or a want or need.

ME

I have a full-time job in being a mom (as all moms do), but I also feel like I have a full-time job in traveling and working in therapies with Gus. I am gone from home a very minimum of five hours a day, most often longer, and spend money in doing so, not make any. I have to have beyond amazing organization skills just to remember to bring everything we need to therapy (double the things now that we are potty training), as well as keeping appointment times straight, and everyone in the family’s schedules running smoothly without conflict. Thankfully, I have always been organized. All along I was being prepared for this life, I say.

I really struggle to keep up at home. While we aren’t home but some late afternoons and most evenings, it takes no time for the house to be in total disarray. We have a sensory seeker up in this bish. He lives for messes and to play in them. He gets into absolutely anything and everything he can. Disorganizing and throwing things on the floor are a favorite pastime of his. The bigger and more able bodied he gets the crazier it gets. I am not talking about regular “kid getting into stuff” business. I am talking sensory seeking full body involvement havoc, here. I am talking a literal curtain climber! Anyone that has been over to our house for any length of time or watched him for a bit will understand this to an extent. It’s seriously 24/7 other than when he sleeps, and he only sleeps when he passes out from absolute exhaustion. I have to keep an eye on him or have him in hearing distance at all times or deal with the consequences.

As I mentioned, I have always been huge on organization, and having a clean and organized home really helps my morale, but I have had to chill on this aspect more than I want or would have ever expected to.

People, I am straight exhausted both mentally and physically basically the majority of the time. But you know what? I’m okay. Do I have some really bad days? Hell yes. Do I have some really good days? Absolutely. I’ve got this. I can truly say that I have more good days than bad.

Shout out to those of you I vent to when I need it.

Shout out to those of you always in our corner.

Shout out to anyone who reads this.

Peace & Love,
– Me

I Would Drive 1000 Miles, and I Would Drive 1000 More

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