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.
Holla – as in we do a lot of “Holla!” and “Hello!” catching up with family and friends; and daze – as the hustle and bustle of the season seems to fly by while we are in a daze.
Truth be told, I have forever been a bonafide Grinch! For whatever reason, the holiday season has always been a time of stress, dread, and wanting the time to pass quickly for me.
This year was my most festive and least dreaded holiday season thus far, which I attribute to my children.
Like the Grinch, my heart at one time was two sizes too small. With the birth of my daughter, my heart grew by one size; and with the birth of my second child, my son, my heart grew by another. That’s my theory anyway.
Holidays with a two and three-year-old are stressful, but add in some travel and that increases the stress level. Then, add in that one of the said children is nonverbal and in the process of learning to communicate and has ASD and SPD, with some pretty big sensory issues that effect basically every aspect of life, it makes for a very unpredictable and fly by the seat of our pants adventure. But truly, who am I kidding? Every day we fly by the seat of our pants on this big adventure: life.
Thanksgiving was spent a state away visiting my husband’s family. Thankfully, the children travel pretty well, so car rides really aren’t too eventful.
We were able to meet many new family members on Thanksgiving. I’m talking little ones we hadn’t yet had the opportunity to meet since their birth. We also had the opportunity to introduce our children to cousins and second cousins they hadn’t yet had the opportunity to meet. There were many little ones around.
The meal was delicious, and my husband’s grandma is an amazing cook/baker and prepared the entire meal for all of us.
Ada is at an age where she can play with the older kids on her own and doesn’t require so much supervision. That makes things quite a bit easier on my husband and me. She had a lot of fun playing all day, and ate at the “kids’ table” with the other kids.
Mealtimes are always a challenge, as Augustus has many issues with food and the mechanics of eating so it’s always a chore to figure out what he will eat, how he will eat it, where he will eat it, and the clean up of the giant mess afterwards. My husband and I usually have to eat in shifts. It’s really not an option to seat Gus at the table or even on one of our laps, because he has a reach like you wouldn’t believe and will stick his hands in everything. Augustus’ food preferences change often and vary from day to day. He is receiving feeding therapy at LifeScape to help him be able to deal with a variety of foods and learn to eat them in a more appropriate manner. He struggles with this because of his autism and his sensory issues involving all senses. In therapy, he is working on things such as how to drink out of an open cup and taking one bite at a time and being able to tolerate more than one food at a time on his plate, etc. He has to use a sippy cup unless we are practicing using an open cup because his very first instinct is to touch any and everything. Therefore, his hand instantly goes inside the cup. If he is eating one food and another is accessible on his plate or in front of him, he will remove the food in his mouth and throw it on the floor and try the other food. It’s confusing and hard to explain, but in short, he has big issues with the actual act of eating and tolerating food and their tastes, textures, smells, etc.
Thanksgiving basically went off without any major hitch other than that while playing, Augustus decided to try to pick up his one-year-old second cousin by his hair. He did also try to take the tablecloth off of the table while his dad was holding him at the table after lunch and did spill a cup of soda. He made a less than usual mess with eating. All in all a pretty successful meal and fellowship with family. We were even lucky enough for Gus to get a nap in while we were there!
A bunch of family members met at my mom’s house a few days before Christmas to frost and decorate Christmas cookies. Even though I knew there was no way Gus would appropriately participate, I let him try. Of course, he just ate the cookie and wanted to get into things and make a mess. That’s okay. Like I typed, I knew that going in. I do have to admit that I had a bit of a hard time with it because Gus and I were unable to participate and had to spend some time outside. I felt bad for him and bad for Ada because I was unable to help her out with this festive and memorable task. Of course, there was plenty of family there to help, but really I am best at keeping an eye on Gus and predicting what he’s going to do and best at calming him, etc. But, as I’ve mentioned before, a lot of things sting and there is just a lot we are all going to have to accept and get used to.
Christmas Eve Our First Sensory Meltdown
Christmas Eve was spent fairly close to home (30 minutes or so away – with all the traveling we do, 30 minutes isn’t much) at my husband’s sister’s home with my sister-in-law, my father-in-law, my future brother-in-law, my nieces, and a few others. We were served New York Strip steaks and lobster tails with all kinds of other delicious foods.
We showed up early so the kids would have time to play with their cousins. It started out pretty well. They have a nice toy room the kids played in. Granted, we are not sure if Gus ingested some small toys and things we didn’t know were there until later when we saw him put some in his mouth. Either way, he hasn’t had any issues since, so he’s fine.
Before supper Gus had what I would call a “sensory meltdown”. To explain, a lot of kids with ASD and SPD are hypersensitive to lights, smells, pressure, etc., but Gus is hyposensitive and wants all kinds of sensory input to include pressure, jumping, etc. These meltdowns can happen at any time and are exacerbated when he is tired and when he is not in his own environment with a lot of new people and new things around. Not to mention, it’s Christmastime so there are lots of lights and decorations and gifts. Unlike a hypersensitive meltdown where a child wants quiet, calm, and familiarity, Gus wants input and lots of it. He absolutely would not sit still and was just getting out of control. I eventually took him into a bedroom and turned the lights down and turned on a familiar television show. I let him jump on the bed, as jumping is one of his favorite things. He jumped, he rolled, he was all over the place. He bit me, he scratched me, I was eventually in tears. Yes, children Gus’ age often bite, but for a very different reason. Gus bites because he likes oral sensory input. That’s why he wears a chewy on his shirt so he has that input when he needs it. When using his chewy, he is often able to focus better on tasks, etc. At this point, the chewy was no good, and he was biting me for sensory input. He was so out of control that I ended up sitting on the bed and seating him between my legs and wrapping my legs around his to give him the pressure he likes and to keep him from being destructive and biting and scratching. I then rocked back and forth to give him some vestibular sensory input as well. Nothing was working, and I felt it was best to take him home, but my husband did not agree and said he’d take over for a while. So, as usual, we had to trade off and on so we could each eat and get Gus fed. This was not Gus’ first sensory meltdown, but his first since his diagnoses and me actually understanding what was going on. It’s so hard when this happens, because he is not in control. He is just doing what he feels his body needs. We thought we had gained some ground with his biting, as he hadn’t bit anyone for a long time. Recently, he bit his speech therapist and my husband and me. I plan to talk with his occupational therapists about a sensory diet for when these meltdowns occur. A sensory diet is tools and activities that help a child get the sensory input they need to again feel regulated and end meltdowns. This will involve a lot of trial and error.
As I sat there restraining him and rocking him back and forth and feeling where he bit me throb on my shoulder, I couldn’t help but look to the future and wonder if things will always be this way. What happens when he’s bigger than I am? He’s already tall and a big boy and it’s no easy task to pick him up, etc. Hopefully, with time, trial and error, and his therapy we will be able to help him learn to self-regulate.
It was still overall a good evening, although a very tiring one, as I had a lot to do once we got home, too. I am glad that the kids got to play with their cousins, and Gus did eventually settle down and calmly played in the play room later.
Although I really wanted to take him home and let him and I be in our calm place, I am glad my husband didn’t let me because it’s important for him to be with his family as much as possible and for us to figure out what triggers meltdowns and how to deal with them. It’s just a part of our life now, and we need to get used to it.
In my unusually festive demeanor this year, I decided I would host Christmas at my house for my family. I invited my parents, my father-in-law, my sister, her fiance, and my niece. I did this in part because I knew it would be a lot easier on Gus and all of us and because I live in the house my father grew up in, and I knew he would really like to celebrate a holiday with his own family in his childhood home.
Not only did I host and invite everyone over, I took on the task of preparing all of the main dishes to include a brined turkey, a pork roast, mashed potatoes, 2 kinds of gravy, and biscuits. My husband made some amazing macaroni so the kids would have something to eat for sure, and he even decided to make an apple pie that was seriously the most delicious apple pie I have ever tasted in all of my life. My sister and mom did help out by bringing appetizers and desserts as well. Man, I ate so much it was just ridiculous. That’s what it’s about, though, fellowship and eating, being merry, and rejoicing and remembering the reason for the season.
Christmas Day was a breeze in comparison to Christmas Eve. The kids were in their own environment and it made things so much easier for Augustus. When he got to a point where he was tired, he simply laid down and went to sleep. Unfortunately, he fell asleep just as we were about to open gifts. I say unfortunately because my family and I wanted to see him open his gifts. It was not unfortunate for Gus. He was in his environment and comfortable and needed sleep; so, he slept rather than having a sensory meltdown not wanting to go to sleep because of all the sensory input around and wanting more.
All in all, Augustus doesn’t care about opening gifts or getting presents. Yes, this is sad in a lot of ways. He’s not feeling the excitement and joy of the season. It’s also okay though, because Gus is almost always happy because he doesn’t worry about things like holidays and gifts. He lives every day seemingly not worrying about the past or the future. When it comes down to it, he is neurologically different than most, but maybe he is in some ways neurologically superior because he doesn’t waste time on things and doesn’t sweat the small stuff. He is a lover and he is a worker. It amazes me to think how hard he works every single day just to do the things we all take for granted.
Ada enjoyed the magic and festivities that most kids love during Christmas. We left cookies and milk out for Santa, and even carrots for the reindeer. Santa even left her some cookie crumbs to eat, which she was super excited about. When asked what her favorite gift was she replied “The candy!” I couldn’t ask for a better daughter. She is the perfect sibling for Gus. She has a heart of gold, and I plan to nurture that. She is also a very strong willed little firecracker when she wants to be, which I also plan to nurture. A perfect combination.
The above was our holidays in a nutshell. I wouldn’t change it for the world. This is my messy, happy, sad, confusing, frustrating, enthralling, exhausting, amazing, and blessed life. I have been given this life and these circumstances for a reason, and I’m here to show everyone that it’s all meant to be.
I hope you all had a memorable and enjoyable holiday season.
Be watching for more posts in the New Year!
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.)
I figured it was about time I give an update since diagnoses.
We just redid our IFSP (individualized family service plan) with Birth to 3 and changed some of our goals and frequency of therapies.
Gus is seen for OT (occupational therapy) 2x weekly, PT (physical therapy) 1x weekly, and Speech (speech therapy) 3x weekly now. He will also be seen at daycare 1x weekly for a while to see how that’s going, and will be seen at times at home, too. It feels really good to be getting him the help he needs to thrive.
We are traveling to LifeScape in Rapid City, SD, once weekly for 3 of the above mentioned therapy sessions. The others he does at the local school.
This should be our set schedule for a while now, but will all completely change come June when he turns 3 and is done with Birth to 3 Services. We have a plan for that time, but are still working out the details, and have a lot to get figured out before then. All I know is that there will be some very big changes for us for a while starting this summer.
I still spend some time every single day on the phone with the State, doctors, therapists, etc.
Yes, I still have to fill out paperwork all the time.
So, how are things going you ask? Really, pretty well. We are actually seeing some improvement with the therapy he has done so far. He is paying attention for longer periods of time, walking for longer periods of time without “refusing to have posture” (as we call it), and has quit biting mom, dad, auntie, and grandma! Therefore, he has already met one goal on his IFSP – He has quit biting!
We are always constantly working to understand his sensory needs and have purchased a few things for him to use at home, to include a trampoline.
We do our best to apply what we learn in therapy to his everyday life.
Now, onto the PECS thing in this blog’s title. What is PECS? The Picture Exchange Communication System. (Click the highlighted text for more information.) In a nutshell, it is a way for nonverbal people to communicate using pictures. Right now, we are working on showing him that if he points at or gives us a picture of what he wants we can help him get it or get it for him; It being whatever is on the picture. It’s a process that takes a lot of time, but he has shown some progress with it.
We know he knows things, but just struggles to communicate. For instance, he can look at a book of animals with an animal on each page and push the corresponding button with a picture of the animal on it. He has matched things for us before, as well.
He is going to be doing some specialized occupational therapy for eating and feeding at LifeScape. Not just fine motor skills for utensil use, but also finding out what it is about certain things he doesn’t like and why he has certain behaviors when he is eating. Since he has SPD (sensory processing disorder), it could be any combination of things to include textures, temperature, consistency, etc. It would be nice to get some things figured out so I don’t feel like I need a pressure washer to clean up my kitchen after evey meal.
We are also using some sign language as well for words such as “more”, “wait”, “stand”, “swing”, “bath”, “yes”, “no”, “all done”, “milk”, “drink”, “food”, etc. He has never himself signed, but I’m doing my best to always use the signs when communicating with him and practice hand over hand singing with him. I try to get his older sister in on it, too.
He is also saying something like “dooooh” (I perceive this as “no”) and pushing things away that he doesn’t want.
The older he gets, the more frustrated he gets, which is totally understandable. My heart breaks for him that he has to work so hard to do every day things we all take for granted. He will live a life of struggle, but with many accomplishments and things to celebrate, and I’ll be right there with him to struggle with him, help, and celebrate.
We have also found out that Gus’ lazy eye that was turning in pretty significantly has seemingly self-resolved. So, right now, surgical correction is completely off the table. Woo hoo! Also, unlike the rest of his family, his vision is great without any glasses or any kind of correction. I tell you, he dares to be different in every way. Yay, Gus!
I feel like I have finally come to a place of acceptance and am believing more every day that this is all meant to be and that I am exactly where I need to be. Life is feeling less scary, for now, anyway.
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.