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.
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!
Ghosting – the practice of ending a personal relationship with someone by suddenly and without explanation withdrawing from all communication.
I haven’t written a blog post in almost a month now; not because I don’t have anything to say (type), but because I have so much I want to say (type), and just don’t know where to start.
I want to start by thanking friends, family, acquaintances for reaching out, attempting to keep me involved, the invites, the updates, the small talk.
While I am still present on social media, I have not really been “present”. I’ve been bad about staying in touch. I’ve been bad about responding to text messages, social media messages, etc.
It’s Not You, It’s me
Seriously, it’s me, and I’m sorry. I’m still learning and adjusting. I’m still consumed by all of the phone calls, paperwork, and appointments; a new way of life completely. My mind is always going. I dream almost every single night about Augustus. My thoughts are consumed. Maybe you’ve seen me out. I still end up going out sometimes after the kids are in bed and my husband is home. Sadly, it’s not so much about socializing as it is about forgetting. It’s about having a few drinks and trying to make things numb. It hasn’t gotten out of hand by any means, but it’s still something I’m doing that I know isn’t useful, but it’s what I’m doing. I’m stressed out. I’m overwhelmed. While I often talk (type) about all of the ways I KNOW are right to deal with stress and being overwhelmed; it is much easier said than done. I admit that. This is all new territory for me, and a territory few enter. I feel different. I find it hard to relate to others. I find myself reading blog posts from others in similar situations and crying. I don’t really know what I’m doing other than that I’m doing my best in not knowing what I’m doing. I know I’m being honest and hope that resonates with someone.
As time goes on, it’s going to get better, and dare I say some things easier (?). I have a lot of friends and acquaintances with children around the same age as Augustus. I love seeing messages, videos, and posts about them. Even more, I love the rare chance we get to see each other in person, our children in tow. Although, I have to be honest and admit that it often stings. Something as simple as a friend’s little boy waving goodbye stings. Seeing a friend’s son start to say words stings. Some comments and questions sting. I know that no one person I have come across means any harm by anything they say or ask, but sometimes it stings. I have heard more than once now “Is this something he’s going to grow out of or get over?” No. No it’s not. This is permanent. It’s not something he can grow out of. It’s okay to not understand, but it’s not okay to keep asking this same question when I keep giving you the same answer. If I have to accept this, so do you if you are a part of my/Augustus’ life.
I do fear posting that last paragraph. I fear because I don’t want you to think that I don’t want you to keep reaching out and sharing your little ones’ milestones and achievements with me. I need them. I need you. I need you to keep me connected; to keep reaching out; to keep inviting me. I need you to help me stay out of Those Dark & Scary Places. Keep asking me questions! The only way to help spread awareness and acceptance is to answer questions. I want to answer anything you want to know about things personally or in general. Ask! Ask away. Nothing is off limits, except not accepting my answer. (Ha, but seriously…)
I share what’s hard in hopes that it will help you to understand why it might take me a few days to respond to that text or why I may choose not to attend an event, why I may seem distant. I’m trying. I really am. Adding to the mental confusion, overwhelm, and sting is the fact that I’m exhausted. I’m kind of just exhausted in every way. Trust me, communication is not the only thing I’m lacking in. I’ve been wearing my husband’s socks for two days because I don’t have any clean socks. I am busy, very busy, but it’s not that I don’t have time to do laundry, it’s just that sometimes I get in the place where all I want to do is relax and try to forget for a while. This would go back to the whole going out thing. Lately, though, I find myself trying to lose myself in a good book. I think that’s okay, although I know I’d be better off getting lost in THE Good Book.
Asking for Help
I know a lot of times people wonder why I don’t ask for help. I’ve mentioned before that I’m a very independent and prideful person. That’s still true, but I very quickly realized with life as it is currently, I have to overcome all that and ask for help, and I do. At the same time, it’s hard to ask for help because I don’t really know what I need help with because I don’t really even know what I’m doing. Does that even make sense? It does to me, but I would totally get it if it didn’t to you. Ha.
Why I Share
I kind of hit on this before, but I want to make it crystal clear that the reason I share is to HELP and to raise AWARENESS and ACCEPTANCE. I am not looking for pity or for you to feel sorry for me. We all live differently and are dealt different hands. The more we can all accept and advocate for one another the happier we will all be. All anyone wants is to be loved and accepted for who they are.
I still love you. I still cherish and appreciate our relationship. I need you to keep me present and reach out. That’s how you can help if you’d like to.
PS There will be a Gus update to come. We are in the middle of a lot of things right now, and redoing our IFSP and starting some new therapy. I’ll share all of the details at a later date once we get it all figured out.
I will never forget Monday, October 15th, 2018 – My son’s long awaited Autism Evaluation at a LifeScape center in Sioux Falls, SD. I will never forget because this day made everything “official” and really “real”. I truly didn’t hear much I didn’t already know in my heart, but it’s still different to hear it come out of the mouths of medical professionals highly trained in the field.
Nonverbal moderate to severe autism spectrum disorder level 2.
Sensory Processing Disorder.
Not involving or using words or speech.
WHAT IS AUTISM ?
Autism is a complex neurobiological disorder that impacts the development of the brain in the areas of social interaction, communications skills, and learning. Autism is a part of a group of disorders known as autism spectrum disorders (ASD).
The DSM-5 notes those with level 2 autism require substantial support. The symptoms associated with this level include a more severe lack of both verbal and nonverbal communication skills. This often makes daily activities difficult.
Common Level 2 Symptoms:
difficulty coping with change to routine or surroundings
significant lack of verbal and nonverbal communication skills
behavior issues severe enough to be obvious to the casual observer
unusual or reduced response to social cues, communication, or interactions
trouble adapting to change
communication using overly simple sentences
narrow, specific interests
SENSORY PROCESSING DISORDER
SPD is a dysfunction in the way the nervous system receives messages from the sensory system, and turns them into motor or behavioral responses. Misinterpretation of everyday sensory information like touch, smell, taste, and movement are indications of sensory processing disorder. Research shows that as many as 1 in 6 children experiences sensory symptoms signification enough to affect aspects of everyday activities such as bathing, dressing, eating, playing, and learning.
It’s a lot to take in…A LOT. I absolutely adored the team that did the evaluation. The team consisted of a psychologist, a speech/language pathologist, an occupational therapist, a graduate student, and a high school student. They were so knowledgeable and such kind and fun people. After the actual evaluation, we sat at a big table with everyone present and each specialist took the time to explain their findings and their thoughts on diagnosis. My husband and I were allowed to ask anything we wanted.
In addition to the above listed diagnoses, it is also recommended that my husband and I consider a dysphagia evaluation to address some oral issues.
It was recommended that therapies be increased by A LOT. Right now, we are doing joint occupational therapy (OT) and speech therapy sessions for a half hour once weekly. It is recommended that we increase therapy to a minimum of 2x weekly with OT and speech therapies separate. I completely agree with this plan. It is also recommended that we utilize both the South Dakota Birth to 3 Program as well as outpatient therapy at LifeScape in Rapid City, SD. This is what we wanted all along…
MY FIRST LESSON IN ADVOCACY
This is what we wanted all along…I explained to the team in Sioux Falls that when we first started therapy before the official diagnosis, we had informed LifeScape in Rapid City that we wanted to do therapy with them most of all, no matter what, and would even choose their services over Birth to 3 (which is FREE). I played phone tag with LifeScape Rapid City, and I talked to several different individuals. We were told we would be put on the schedule for OT and speech therapy at LifeScape, and even went over what days and times would work best for us and them. I never heard back and never heard back. So, I finally called them. Again, I was kind of given the runaround, but told they would talk to the person in scheduling and get things going. Then, I randomly received a phone call from someone in scheduling. She stated: “It looks like you qualify for Birth to 3 and should be able to receive all of the services you need. Congratulations.” (click…hangs up) I have to admit, at that point I just kind of gave up. I more than got the impression that they preferred we just do Birth to 3. I know there are waiting lists, and I know Birth to 3 is free, BUT I want what I feel is best for MY child. I loved the therapists we saw at LifeScape in Rapid City when my son was seen for his therapy evaluations. The therapists were more than happy that we wanted our son to be seen there. It seemed to be scheduling that thought otherwise. Anyway, I learned my lesson. I have to PUSH and SHOVE and SHOUT and RELENTLESSLY work and NEVER TIRE to make sure my son gets the therapy, care, and support that my husband and I feel he needs and deserves. The therapists at LifeScape in Sioux Falls really helped me to see that. In fact, they said they would call and talk to the head person of LifeScape to make sure that those at the Rapid City branch are made aware of the situation. (All of the LifeScape centers are connected.)
I am actively working on getting us a social worker or some kind of advocate to sit in on meetings and such and to help advocate for Augustus, as well as help us know what’s out there in the way of help and support.
With early intervention the outlook always improves. Unfortunately, with autism there really is no outlook per se. A word they actually use with autism (other than spectrum) is fluid. The autism level is actually fluid. Once my son is ready to start school, he may actually bump up to a level 3 as he is faced with new and difficult tasks, and may really struggle even worse than he does now. It is also possible that he could really grasp things in therapy, and for a while maybe even be at a lower level 2 or even a high 1. There are no answers. There is truly no outlook. I don’t know if I will ever hear my child speak a word, call me mom, tell me he loves me, tell me what he needs. I don’t know if he will ever be able to live on his own, use a toilet, be able to dress himself, have a job, have a family. That’s why I try not to waste my time worrying about the future. I want to enjoy the now and see where things take us. Otherwise, life would be full of worry, fear, and misery.
We will obviously be traveling a lot, and spending a lot of time in therapy. I’m not exactly sure what that means for us. It’s just one of those things we will have to deal with once everything is scheduled. The specialists on the team in Sioux Falls at the evaluation actually said one of their recommendations was for our family to move to Sioux Falls so they could work with my son, as they truly enjoyed him. Don’t think the thought hasn’t crossed my mind. I love where I live, and have never really had much desire to live in a bigger city, especially once starting a family…until now. Granted, that desire is only at about a 1%. You can bet your sweet butt I would do anything to make sure my kids have what’s best for them. That’s why nothing is ever off the table. No, we have no plans of moving right now; none at all. It was brought up, but not seen as being a necessity. Things will be wild and crazy for a while, but then it will become “our normal”. Therapy is always changing and adapting to where the child is at. Therefore, at any time, it could become more or less extensive. We shall see.
It is also highly recommended that we seek out Applied Behavior Analysis (ABA) and/or Early Start Denver Model (ESDM) therapies. These therapies are not offered at the LifeScape center in Rapid City, SD. Therefore, we are going to attempt to find another place to acquire these services in Rapid City, SD.
I’m sure there are plenty of words and things you may have never heard or do not understand throughout this blog. You’re not alone. I’m learning as I go. I have no choice. Never hesitate to ask. If you’re curious about something or don’t understand something, ask. I am all about advocating and educating.
That’s all for now, friends. I could go on forever. I hope you find these posts helpful or at least entertaining in some way.