Navigating marriage, motherhood, a child with special needs, work, a social life, and life's ups and downs with faith intact.
I’m gonna give it to you straight: I’m f#@*ing tired. I am tired in ways I don’t even know how to describe. Everything is a fight, and right now I’m struggling with the fight to get professionals to understand.
I am physically exhausted. Let me start what I’m about to explain with a couple of quotes:
“I have worked with well over one hundred kids on the spectrum, and I have never met a child as ‘active’ as Gus.” – Board Certified Behavior Analyst
“I have been doing this for over 7 years, and like I said, I have never seen a child as active as he is.” – Board Certified Behavior Analyst
Ladies and gentlemen, I am not exaggerating when I tell you that my son is moving from “son up to son down”. The only time he is still is when he is asleep, and he has a lot of trouble doing that. I thought I had seen some “hyperactive” kids, but every one I have ever met has NOTHING on Augustus.
Let me paint a picture for you: I have just one lamp in my entire house because he has broken all of them. He has tore down curtains and the attached rods and their hardware on several occasions, and I finally gave up and tacked blankets up. I once had an acquaintance ask me “How are the curtain climbers?” in reference to my children. That would have been funny if it weren’t true. I have holes and bite marks in the curtains that remain. I have gone through countless “new to me” rummage sale recliners he has jumped on and body slammed and broken. The couch is stained and in shambles because he has jumped on and crashed onto it so often. I think even grandpa & grandma had a chair fall victim. I have holes in my walls from furniture being tipped over and crashed into the wall and from being jumped on and slid into the wall. My baseboard heaters are commonly disassembled. I cannot leave anything on my table or counters unless pushed all the way back to where little hands cannot reach, and he keeps getting taller. A coffee cup is broken in this house at least monthly. I cannot have food or drink in the living room or utilize the coffee table. The TV had to be mounted on the wall where it could not be reached. The refrigerator and pantry have to have locks, not because he would eat everything, but because he would dump everything out and tear everything up. The bathroom door has to be locked from the outside. Every exit to the outside has to be locked from the inside. My bedroom is locked from the outside. If not, he takes all the clothes out of the drawers and off the hangers. When I say locked, I mean rigged so Gus cannot open, which sometimes means Ada cannot open, which means more work for me. These precautions are for his safety. He seems to have no impulse control. He unravels toilet paper. When he is allowed access to the bathroom, he will put everything he can find in the toilet and bathtub, and then turn the bathtub on full blast. He throws things off of bookshelves just for fun. He tears things open and apart. He takes things out of drawers and cupboards and runs throughout the house with them. He enjoys watching TV or his tablet, but he cannot sit still while doing that either. He has to be running, jumping, and crashing or spinning, twirling, and flapping. He hates having the lights on in the house, and turns them off every opportunity he can get. It’s an endless battle to have the lights on at night to get things done. He likes to hear the noise of things hitting the ground. He likes to watch things hit the ground. Even in his car seat, he squeals, squirms, and kicks the chair in front of him. I am telling you, he absolutely cannot sit still. CANNOT. This all started when he was very young, and the only change is that he is heavier and taller now, therefore, more destructive.
He is nonverbal, but he is NOT quiet. He makes all kinds of squeals, sounds, noises, and babbles. He loves noise. It is comforting to him to make noise.
He struggles to wind down and shut his body and mind off. He will not sleep without a dose of melatonin, and wakes up every single morning between 2 and 4 AM squealing, screaming, jumping, and crashing. We have modified things so he is safe in his room and not wandering about the house at these times, but it’s still not quiet. If we are lucky, he falls asleep again after an hour or two.
I’m used to this. I’m exhausted, but in a permanent state of exhaustion. I’m used to it. What is concerning is that this “extreme activeness” is inhibiting his ability to learn. He has to get up after just a few minutes of sitting and just jump in place. He has to take breaks to crash into beanbags. Even when he is trying to focus and sit still he still has to move; kicks his feet, shakes his head, etc. He tries so hard, but he absolutely CANNOT keep still. It’s not his fault.
We give him plenty of opportunity to get his energy out in appropriate ways. We have a trampoline in the living room, a swing in his room, and various other things to try to help him feel calm. We have tried so many different sensory diets and tools I couldn’t even count them.
He requires constant supervision for his safety. I can try to lay on the couch or in my room or anywhere, but I have to make sure he is within at least hearing distance. If he has access to me when I am laying down or trying to rest, he climbs on me, jumps on me, pushes against me seeking pressure. Therefore, until he falls asleep or he is in someone else’s care, I do not “rest”.
Anytime we are out of the house, he has to be holding someone’s hand or he will bolt away. He has no danger awareness, stranger danger, or impulse control. He communicates primarily physically right now, and will walk up to anyone and grab their hand if he wants to go somewhere or have access to something. He has zero concept of personal space. If he sees something he wants, he takes it, whether it be food on someone’s plate or someone’s personal valuables.
I guess that sums up the physical tired and a bit of the mental, too. I have to always be on my toes anticipating what he might get into, onto, etc. You could not imagine the effort it takes to even just attempt to keep the house in some order.
Then there’s the fight and the emotional exhaustion. The fight to get people to understand. The fight to make sure he is given the same rights as others. The fight for services and HELP.
Gus’ therapists and my husband and I decided that the hyperactivity was something that needed to be addressed since it was really negatively effecting GUS’ life. Covid-19 made getting an appointment with a clinical psychologist a chore in itself. I won’t go into the boring details, but it took appointments, several phone calls, and a whole lot of waiting just to be seen. THEN I filled out lots and lots of information for the psychologist and talked to him/her on the phone a couple of times for extended periods of time. The day of the appointment comes and the psychologist decides we would be fine meeting via Zoom (video conferencing). I was fine with that if that was what they felt was best. They said they were happy to be a part of Gus’ care team and follow-up with him throughout life. At the same time, said psychologist told us he/she was unsure of what he/she could do for us. They had letters from Gus’ primary care physician, had talked to Gus’ BCBA on the phone, and talked to me on the phone TWICE. We were very specific in letting them know that we wanted to address his hyperactivity, sleep problems, and bouts of sadness and crying. The meeting ended with “Well, I didn’t see him, so I can’t diagnose him with anything, but I think you could try…” There was more to it, but not worth explaining. It was just stupid. I’m not really sure why we jumped through all of the hoops if this is how things were going to go down. Needless to say, we have all decided a second opinion is needed. All parties involved kind of got the vibe that said psychologist was not interested in working this case. I wish he/she would have just said so. What a huge waste of time.
That’s the emotional and mental toll, besides the day-to-day frustration and heartbreak (on Gus and my part) of watching and seeing him cry and not being able to understand or help.
I am constantly rearranging our schedule, filling out paperwork, talking on the phone, e-mailing, arranging, explaining, persisting, and fighting. A constant balancing act.
We are lucky in that we have a few therapists who now somewhat understand Gus. I type “somewhat understand” because none of us fully understand. Everyone is different. Everyone on the autism spectrum is different. We all need to take the time to at least try to understand, or at least understand that everyone is different and accept that.
I always try to share the good, but sometimes I think it’s good to share the hard, too.
It’s not that nothing has gotten “better”. He has improved in SO many ways, as I often share. It’s his hyperactivity that has not changed and is inhibiting more and further progress.
Needless to say, we are seeking a second opinion. AKA here we go again. I have to call the insurance provider tomorrow and two different professionals to try to get this ball rolling all over again.
I have no idea what the answers are or what needs to happen.
As I mentioned, I am f#@*ing exhausted, but I will never stop fighting.
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.
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.
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.
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.
I have a full-time job in being a mom (as all moms do), but I also feel like I have a full-time job in traveling and working in therapies with Gus. I am gone from home a very minimum of five hours a day, most often longer, and spend money in doing so, not make any. I have to have beyond amazing organization skills just to remember to bring everything we need to therapy (double the things now that we are potty training), as well as keeping appointment times straight, and everyone in the family’s schedules running smoothly without conflict. Thankfully, I have always been organized. All along I was being prepared for this life, I say.
I really struggle to keep up at home. While we aren’t home but some late afternoons and most evenings, it takes no time for the house to be in total disarray. We have a sensory seeker up in this bish. He lives for messes and to play in them. He gets into absolutely anything and everything he can. Disorganizing and throwing things on the floor are a favorite pastime of his. The bigger and more able bodied he gets the crazier it gets. I am not talking about regular “kid getting into stuff” business. I am talking sensory seeking full body involvement havoc, here. I am talking a literal curtain climber! Anyone that has been over to our house for any length of time or watched him for a bit will understand this to an extent. It’s seriously 24/7 other than when he sleeps, and he only sleeps when he passes out from absolute exhaustion. I have to keep an eye on him or have him in hearing distance at all times or deal with the consequences.
As I mentioned, I have always been huge on organization, and having a clean and organized home really helps my morale, but I have had to chill on this aspect more than I want or would have ever expected to.
People, I am straight exhausted both mentally and physically basically the majority of the time. But you know what? I’m okay. Do I have some really bad days? Hell yes. Do I have some really good days? Absolutely. I’ve got this. I can truly say that I have more good days than bad.
Shout out to those of you I vent to when I need it.
This blog post started as one thing and kind of morphed into another. Therefore, I will make this part 1 of more posts to shared at a later date.
My husband and I experienced fertility problems, and tried for a very long time to conceive our first child. With the help of a fertility specialist, and fertility drugs, we were finally able to conceive and welcomed a baby girl; now a clever and sassy 4-year-old preschooler. We were told our chances of conceiving again (naturally) were VERY slim, and that if we ever decided we wanted another child that we would most likely have to go about the same route we had with the fertility treatments, and that birth control wasn’t necessary if we were okay with potentially conceiving again, although very unlikely.
I so cherished those first months with my baby girl, and even quit my job and decided to stay home with her full-time no matter what sacrifices had to be made to do so. I knew that this would likely be my only child, and children were my dream and passion always. I was so blessed.
My husband and I left for a weekend getaway for our 6th wedding anniversary and left our 6-month-old baby girl overnight for the very first time. Lo and behold, about a month after this weekend getaway, I found out I was pregnant! I was absolutely SHOCKED, awestruck, taken aback, and even scared. I had no idea what my husband would think, as we (mainly he) had sacrificed a lot for me to be able to stay home with our firstborn, and things were not easy financially. Long story short, he was totally surprised and happy and the supportive husband I so needed.
My second pregnancy was really tough on me physically and emotionally. I had a lot of back issues and was trying my best to be my best for my babygirl. My body wasn’t even close to being back to feeling “normal” at just 6 months postpartum, and I definitely wasn’t even close to being emotionally back to “normal” learning to be a new mom and then having the crazy tiredness and hormones of early pregnancy on top of it.
Trust me, I know that people have children close together all the time, and it’s not that big of a deal. It was just such a shock to my system, as I was basically convinced I would only have one child in hopes of maybe trying for another years down the road.
After the initial shock I was very excited and so looked forward to adding another to our little family. I was even more excited once we learned our newest addition was a little boy. How perfect!
Just fourteen months after the birth of my first, I was holding my second born in my arms.
It wasn’t easy, as my oldest was not yet walking, and many a day I had one in a baby carrier and one in my arms; two cribs, double the diapers, and very, very little sleep. Little did I know, this wouldn’t even be the hard part. The hard part was yet to come.
I always heard from others that having children close in age was extremely hard in the beginning, but would become much easier once they were older, as they would be close friends and a huge help to eachother.
I looked forward to this. I couldn’t wait to see them play together and hear them giggle and chat in the adorable way young children do.
My little girl has always been a talker and still is. She started talking early and this seems to only increase seemingly by the day. I am serious in telling you that I have never ever met a child as articulate and chatty as this little girl.
My son, at first, was an overachiever it seemed. He was rolling over onto his belly at just two weeks old. He took to crawling earlier than his older sister had, although did take his time to start walking; just like his sister.
He started jabbering and before we knew it was saying words. The word he said I remember most was “grandma”.
To be honest, I took this time for granted. I was busy, things seemed to be progressing as they should. I just assumed we were on our way to hearing his cute little voice on the regular.
While I cannot remember an exact time (an estimated guess is all I can give), when he was somewhere around 14 or 15-months-old I began to notice he quit saying words, like completely. I always just thought he was “a man of few words” and liked to keep quiet since his sister did plenty of talking for the both of them, and then some.
Also of note was just how wild and active he really was. I kept getting the speel “he’s just a boy“. At first, I took this to heart. I am from a family of all sisters and primarily female cousins. I hadn’t a clue about what to expect from a male child. After a while, though, it just seemed unreal, out of control to me. He was always, always into something; fearlessly climbing and jumping, wrestling, head-butting, you name it. Fearless.
He was the absolute messiest eater I had ever seen. I felt like I needed a pressure washer for the highchair and kitchen after every meal and snack. He would squish food, rub it all over himself and his surroundings, throw it, all of that and then some. It seemed to only get worse over time.
He was an eater! He was born ready to eat and kept up that appetite from that moment on. His appetite has never changed. He often eats more than I do in a day. The thing is, he began to be particular about what he would accept and eat, which was a pretty sudden and significant change. (see this previous post.)
Then, it was if he had never known his name. I say this because he virtually stopped responding to his name entirely. It was near impossible to get his attention. I was really starting to get concerned. While he was still happy, healthy, and extraordinarily wild, things seemed to be regressing.
A lot of things went through my mind. All of those words we hear, but choose not to acknowledge until we really have to: regression, developmental delays, ADD, ADHD, autism, mental illness, etc…(see previous post)
I KNEW something was wrong and had been for a while. My mommy heart KNEW.
The straw that broke the camel’s back (so to speak), and really made me accept that we needed to look into things, was when he started jumping and flapping his hands (aka stimming).
I had basically already diagnosed him myself before he was even 18-months-old. That seems crazy, but since I had just been through seeing the milestones of his older sister, it was pretty easy to see where things weren’t even close to the same as they were with her. I, in fact, called his primary care physician and raised my concerns. The doctor was fairly skeptical, and I could tell he thought I was just overreacting, as I have always been a very observant and concerned parent. He did reassure me that he was sure I knew best, but that we just as well wait until his 18-month-Well-Child exam, since most times diagnoses of delays and such weren’t even done until the child was a bit older, anyway.
I made an entire written list of my concerns for the doctor before our visit. To say he was impressed by my observations is an understatement. To this day, he still praises my attentiveness and early intervention.
I will save you the story of the specifics of diagnoses (it’s quite a process and a real headache), but just after my son turned 2-years-old, he was diagnosed with nonverbal autism spectrum disorder and sensory processing disorder. While I was totally expecting this, it was different once it was actually on paper. The silver lining of it being on paper, was that now we could seek out resources and help at the very susceptible and tender age of two. Early intervention is key.
Needless to say (type), I have yet to experience my children having a verbal conversation, or to see them playing in a traditional manner.
Balancing the act of raising a neurotypical child and a child with autism so close in age is THE REAL CHALLENGE.
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.
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.
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.
A therapy with a scientific approach to understanding and improving or changing behaviors. AKA Change the environment to change the behavior.
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 theU.S. Beareau of Labor Statistics reports, licensed psychologists must complete at least a bachelor’s degree.Psychology Todaystates 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.
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.
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.
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 AM – OCCUPATIONAL 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 AM – NORMALLY, 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 PM – BEDTIME 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.
was our team name for the LifeScape MallWalk at the Empire Mall in Sioux Falls, SD. Our fundraising goal was $500, and we smashed that goal bringing in a total of $1175! That wouldn’t have been possible without the love and support of our family and friends. We couldn’t have done it without you, and we are so thankful. Considering we were one of the smaller teams signed up, we made a whole lot of money for the LifeScape Foundation. A total of $92,910 dollars was raised for MallWalk25. Very impressive!
I think Ada probably had more fun than Augustus at MallWalk. It is SUPER kid friendly and so, so much fun! There was a DJ and performers and dancing to get everyone pumped up. There were clowns, mascots, superheroes, Disney Princesses, facepainting, balloon animals, a photo booth, team photo areas, and more.
Surprisingly, Ada was all about the superheroes. She spotted Batman from afar, and her goal from then on was to find him, which we did.
Everyone present, staff, superheroes, and guests in general, were so kind.
Then came the actual walk itself. Each team received a sign to hold up displaying their team name and made a big loop around the mall, and the Empire Mall is not small. I don’t even really know how to describe this moment. It was emotional for me. It is one HUGE group of people, all with an understanding of disabilities or having disabilities themselves all together for one cause in one building with one goal. It’s big and caused big feelings. Like I said, I just cannot accurately describe it in words. There were so many people there. For the walk, it is one giant snake of people, no gaps, around the entire mall. Unbelievable.
A couple of my husband’s cousins and children came to MallWalk to get in on the fun and walk with us. We had a blast!
The MallWalk was a great reason to get out of town and spend some time together as a family. Like I said, it is a very kid friendly and family oriented event. We arrived the day before the walk to preregister and have some family time. We went to a Build-A-Bear Workshop for the first time, and Ada had a perfect experience there.
The kids had a lot of fun playing on the rides at the mall, too.
This is not to say things went off without a hitch…
We stayed in a hotel Friday and Saturday night. We do have family in the Sioux Falls area, but Augustus has issues with new environments and sleeping, and a hotel is our best bet, as he can have complete darkness and has stayed in hotels before so somewhat knows the routine.
We always bring a pack-n-play for Gus to sleep in. He is far too wild to calm down and relax and go to sleep on a bed, and his pack-n-play is familiar to him. I have no idea what will happen once he outgrows his crib and pack-n-play.
We were on the second floor of a 3 story hotel so there were people above and below us. Gus never just falls asleep. Even at home, he is often awake for hours in his crib. Dane, Ada, and I have grown accustomed to sleeping through his jumping, squealing, laughing, and noises he makes. Granted, at home he is in his own room with the door closed, which muffles some of it.
The hotel was a different story. He stayed up until 1:30 AM jumping, squealing, screeching, flopping, giggling, and just being plain noisy. We were quite concerned we were going to get kicked out of the hotel. Dane and I tried everything we could think of to try to calm him to no avail. This kept Ada awake, too.
Therefore, after MallWalk, which was in the morning, and lots of hard playing with cousins, Ada definitely had quite the attitude, as she was just plain wore out. The next night did go quite a bit better.
Thankfully, the children generally travel pretty well.
All in all it was a great time for a great cause.
I’ve been keeping a sleep journal for Augustus so we can discuss his sleep with his doctor and maybe find a better way for all of us to get better sleep!
Thanks for reading and thank you for your support!
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.