Navigating marriage, motherhood, a child with special needs, work, a social life, and life's ups and downs with faith intact.
When the Clouds Get Heavy
My son (diagnosed with ASD/SPD) had quite an “episode” in church today. No, this isn’t the first time this has happened or the first public place this has happened, but today it was just harder. Today was harder because it’s been an emotionally draining month thus far, especially this last week, and I’m not at my strongest right now.
Some days things happen that bring feelings right to the surface. I have had to learn that I can only deal with things as they come and in the present, and that the past and future are no place to dwell. If I were to dwell, I’d never be able to carry what’s here and now. Some days, though, it gets really heavy trying to carry it all, even just in the here and now.
My husband has given the term “sensory storm” for those times our son is dysregulated.
What really gets me is that I sometimes feel inadequate in dealing with my son’s needs, especially those of the sensory variety. I am not like him, and therefore cannot understand just what he needs. During these storms, he is searching for some sort of input to “regulate” him, but I am unable to give him what he needs. Therefore, he acts out and is in a state where I am unable to even attempt to reason with him. He is seeking something he cannot appropriately express to me. This is frustrating for us both. There are days I am able to provide at least some of what he needs, but then there are days like today, when I just can’t figure it out.
At home, this problem is not as frustrating because he is able to behave and seek as needed to find whatever his body needs to bring him “back down”. In a public setting, these storms rage at their worst. He is out of his element. He acts out physically and emotionally. Sometimes this means inappropriate laughing or giggling, crying, throwing things, kicking, pinching, biting, thrashing, jumping, yelling, screaming, grinding his teeth, throwing his head back, pressing up against anything he can, and any other thing he can think of to try to find whatever form of sensory input he needs to feel “normal”. To an outsider or stranger (or just most people in general) this just looks like a naughty little boy throwing a fit or tantrum — I often wish that was the case, as I would better understand how to handle that.
I do my best to try to handle these “sensory storms” in public, but there is only so much I can do. I have a few tips and tricks up my sleeve, but they don’t always work.
It’s not what other people think of me or my son in these situations that hurt me. What hurts me is that I am at a loss as to how to provide my son with what he needs.
I do my absolute best to be strong and calm because whether I know how to calm these storms or not, I am my son’s calm place. I am my son’s safe place.
I guess I am not sure if I will ever fully understand how to figure out just exactly what he needs during these storms, but I know I will always keep trying and that he and I will continue to learn together.
Of Note: This morning I woke up early before my family feeling well. I decided to spend some time working in my devotional journal titled: “Looking Up – Trusting God With Your Every Need” produced by Beth Moore with Lisa Guest. The devotion I opened up to started with: “Lord, You are the source of Light – the Light of hope and healing of truth and guidance; Light that darkness can never extinguish.” I worked through the exercises and thought about what areas in life I could receive more of His Light. This exercise set the tone for my day, and boy am I thankful it did.
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.
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.
Today I was hit right square in the “feels”. My phone greeted me this morning with my Facebook Memories, which are a recap of things you’ve shared on Facebook in years passed.
One year ago, I shared a picture and an update about Augustus, who had just turned 18 months old.
The caption to this picture read:
“This guy is 18-months-old today! 😲 Can you believe it!? I can’t. 😢 He is a boy of few words, which I think is largely in part to the fact that his older sister never stops talking. 😄 He is always on the move.🏃♂️ Even when he watches tv, he walks around. He loves to crawl up onto things and climb. 😓 He has grown 3 INCHES in the last 6 months, and is very close to being off the charts for his height. His height to weight ratio is perfect. So, in other words, he’s a big ol’ healthy boy! 💪 He’s still a big eater and isn’t too picky. 🍗 He adores books and asks to be read to often. 📗 He also likes to sit by himself and look at books. He’s really into throwing and rolling balls around.⚾️ He loves anything with wheels. 🏍 He has a little camoflauge blankie with a stuffed animal deer head on it that is his absolute goto for comfort. ☺ He has to have it to sleep. 😴 He’s big on sleep. He gets a little fussy and wants to go to bed or take a nap and is all for it. 👏 He still likes to wrestle and often uses his head as a weapon. 😏 His sister likes to boss him around and even push him around. 😣 He’s such a lover, though. He usually doesn’t fight back. He loves to give hugs and kisses, and loves to rest his head against mine for some snuggles. He is the sweetest. 😍💙”
Then, in the comments, I elaborated on some details my friends had inquired about:
At this time we were starting to come to terms that maybe something was going on with Gus, but just weren’t sure, and not yet willing to admit it.
I could take the caption to that adorable picture and pick it apart, piece by piece, and show you that what I was describing, although very vaguely and unaware, were some of the symptoms of autism spectrum disorder and sensory processing disorder.
Autism taketh away…
Notice in the comments I mentioned the words he was using? Although they were few, he was using words; for a while. They eventually went away.
That’s what really hit me. It hit me that I’m not even sure I remember what that sweet little voice sounded like, because I never thought it would go away. We all take so many things for granted, such as the voices of our loved ones. I was fortunate enough to hear him say “mama”, which is more than some can say, and I am blessed in that.
That’s what autism has taken away. It took away my son’s voice; his ability to communicate verbally. What I wouldn’t give to hear him say “I love you.” I’d even love to hear him argue with his sister.
While he still makes noises and sounds, he does not speak. Maybe he will again one day, but maybe he wont.
Autism took away the future I saw for my son and my family.
Autism took the wind out of my sails (initially).
Autism rules my schedule and routines.
Autism filled me with doubt and changed the way I see almost everything.
Autism requires my son, my baby, to work so much harder than most to be socially accepted and understood and to learn. He learns differently.
He is different not less!
Autism has given me absolute proof that love requires no words. None. That in itself is probably worth more than everything it has taken away.
Autism has given me a new outlook on life and a new way to view things.
Autism has broadened my horizons and introduced me to things and people I would have likely never come across otherwise.
I’ve got some hella wind in my sails now! It took it away, but sent it back with a vengeance.
Autism has given me understanding.
Autism has given me an understanding that words are not needed to communicate.
Autism has given me strength; so much strength.
Autism has renewed my faith and renewed my trust in God.
Autism has given me an entirely unique, loving, affectionate, smiley, and happy son to fulfill my life; my family’s lives.
God has entrusted me with what is perfect and planned for me.
I always wanted to be a mother. That’s all I ever knew. When it became obvious that may never happen I turned to fertility treatments and had my beautiful daughter. Then God, in his own timing, blessed our family with this amazing and unique little boy who would bring us all together and build us all up in strength, understanding, and love, and show me a side of motherhood many don’t see.
For now, we will show Augustus the picture related to the activity we will be doing to help him learn which pictures are associated with which activity. We will also give him choices at snacktime, with activities, for TV shows, etc., letting him choose between a few pictures in the given category. We also plan to implement “first and then” showing him what we will be doing and what will come after to help him with transitioning from one activity to another. When Augustus gets a little better with his motor skills and gets this whole PECS thing figured out, we hope he will eventually be able to hand us pictures to let us know his wants and needs. Then, for on the go, maybe we will be able to incorporate the use of PECS on an electronic device such as a tablet. He has done pretty well showing me what he wants for a snack when he gets hungry and frustrated and I show him his snack pictures. Hopefully, his frustration in general will decrease overall once he knows he can get what he wants and communicate with us via pictures. It’s all a work in progress.
(He also has some pictures in his bedroom that aren’t in the video. We will add more pictures and options as necessary.)