Table for Four
As I sit here at my big, takes up too much space in my kitchen, kitchen table with six chairs around it, that I bought on sale years before I had children, I realize and accept that I don’t really need it anymore. I bought it in the first place because: #1: It was on sale, and #2: It had plenty of room for my “future family”.
The only thing I ever knew, without a doubt, my whole life, was that I wanted to be a mom and have a big family. I also knew I did not want kids right away when I was very young because I wanted to get some adventures, partying, and good times out of my system before. I figured I had plenty of time to make it all work out.
As I’ve mentioned before, when we finally decided to grow our family it didn’t exactly work out how we’d planned. There were fertility issues on my end, and we had to use medical intervention to conceive our first. Then, our second came as a surprise, no medical intervention necessary. That had me excited! After our first, I went through a stage where I treated each moment as if it would be my only with my only child, but then number 2 was on the way, and my dreams of a big family were back “on the table”. (Haha, see what I did there?)
Things were hard at first with two very small children, but I knew, and as everyone kept telling me, things would only get easier with time as the kids got older. I was beginning to think I was crazy or just weak, because I swore things were getting harder, not easier! That’s because they were.
Raising kids is hard. The hardest job you’ll ever have, if you do a decent job. It is also the most rewarding job you’ll ever have, and a job you get to keep lifelong.
The older my kids get, the harder it gets to navigate because their differences become more obvious, not just in general, but to each other.
ME: “Ada, go play with your brother.”
ADA: “But mom, he doesn’t talk!”
ME: “Ada, Mom is busy, go play with Gus.”
ADA: “But he doesn’t play right!”
ME: “Ada, apologize to your brother.”
ADA: “He never says sorry to me!”
ADA: “No, Gus isn’t a part of this game.”
ADA: “I had a dream about our family, and….”
ME: “Was Gus there, too?”
ADA: “No, mom, Gus is never in my dreams.”
ME: “Ada, it’s time to clean your room.”
ADA: “I didn’t make the mess, Gus did!”
ME: [After setting a timer at the supper table for 5 minutes and then letting Gus get up.]
ADA: “Why doesn’t Gus have to sit at the table?”
These comments hurt my momma heart. They’re not easy to hear. They’re not easy to address…
Kids are literal. Kids are honest. Kids can seem brutal, but kids are innocent. Kids are observant. Kids are like little sponges. They learn and adapt quickly. Most importantly, kids are resilient.
Lucky for us, Ada is all of these things, as well as very kind-hearted and brave, extraordinarily articulate, and has a great capacity to try to learn and understand.
To say things can seem “unfair” in our household is an understatement.
I’m not an advocate for things always being fair in the first place, kids are all different and require different care, but it’s complicated when things such as house rules, which should apply to all, have to be made different and adapted in our situation. To boot, our kids are really close in age, so there really, typically, shouldn’t be much difference in what is expected of each of them. But for us, there is…
I can most definitely see, especially from a child’s perspective, how we seem to give Augustus more attention. The truth of the matter is that we do. We have to.
Each individual child, in any given family, having time alone with their parents together and individually is important. In our family, this is not just important, it is absolutely necessary on a regular basis.
Ada comes to therapy with Gus and I once weekly. I let her participate as much as I can without it being detrimental to what Gus is doing.
I can see how hard it is for her. Gus gets to go to the Sensory Gym where there are swings and slides and foam pits and rock walls. To Ada, Gus is getting to play at an indoor playground, and essentially he is. The difference is that swinging and spinning help Gus to regulate and calm down, while swinging and spinning have the opposite effect on Ada. Adults barely understand sensory processing disorder (SPD), so I sure don’t expect a 4-year-old to. Gus gets to sit at a table and get treats and praise for doing things that seem extraordinarily easy to Ada. Heck, she can do those things! Why shouldn’t she get some treats, too?
While I feel it is important for Ada to see what Gus is working so hard to do, I also think it is important for her to not be in a waiting room or in the therapy environment the majority of her childhood. That’s why we choose to send her to daycare when she is not in preschool and we are at work or therapy with Gus. It may not be the most money-savvy choice, but in our opinion, it’s the right choice.
We make it a priority that Ada gets to spend time with both of her parents individually and together without her brother around. Whether it’s something as simple as getting to go feed the cows at work with dad, or getting to run errands with mom; we make sure it happens. Sometimes she gets to have a lunch date with mom or dad while the other stays at therapy with Gus.
Advocacy & Understanding
That all being said, no one is going to know or understand Gus like his sister. More than once in a public setting someone will say something to Gus or ask him something and be waiting for a response when Ada pipes up and says: “Gus has autism, and he can’t talk.” She doesn’t say it in an irritated or annoyed manner. She says it in a very matter of fact, somewhat proud, and a kind of “Um, hello, you should know this…” type manner.
That’s right. Gus does not talk (yet) and is in fact nonverbal. We as a family have learned to adapt and communicate with him in different ways. Including Ada.
I can tell that it most definitely distresses Ada when Gus is upset and we cannot understand what is wrong. She does her best to comfort him. She will ask our Amazon Alexa to play “Wheels on the Bus” for him. She will turn on a favorite television show for him. She will turn nursery rhymes on and hand him her tablet. She will offer him something to eat. She will give him a hug. More often than not, Ada is met with resistance by Gus. He might swipe what she is offering out of her hand. He might even shove her, pull her hair, yell at her. Nine out of ten times she understands. It’s nothing personal, he is trying to communicate.
Ada has most definitely learned to adapt and play with Gus in a way that is fun for the both of them.
Don’t think Ada is putting in all of the work on that end, though. We work hard everyday with Gus at home and in therapy to learn “appropriate play”. He is getting better all the time.
The Big Question
Will I be getting a smaller kitchen table? The answer is a hopeful “Yes”. Haha. Sorry, sorry…
The big question: Is our family complete? Are we done having children? The answer: I honestly don’t know. I do know my dreams of a big family are not realistic or what’s best for our family now, and I am wholly and fully okay with that.
You see, I look at it in a few different ways…Gus is always going to need me more and on a different level than a neurotypical child. God knew my dream, and while it was presented to me in a different way, it makes sense. It makes sense to me, anyway, and that’s all that really matters.
The reason I brought up the table, and the big family dreams, is because it’s all something I had to learn to accept (also actively have a say in, if that makes sense) due to various reasons and situations throughout my adult life. It didn’t happen overnight. I am, in fact, still in the process. My kitchen table is/was a symbol of that dream.
DISCLAIMER: I am fully aware just how weird I am, but I am not afraid to let my freak-flag fly!
I am ever evolving, and things are always changing.
As always, I truly and sincerely thank you for taking a peek inside my life and my mind by giving this a read.
-AMom’sFaithUnbroken – Amanda
It’s been a while! Like two and a half months since I’ve even looked at my blog. I have so much I should be doing around the house right now since I am home, but it will be good for me to get everything typed out and give everyone an update on life. I know I don’t see family and friends near as often as I’d like to, and you all show us so much love, you deserve to hear what’s going on, too.
Augustus and I are logging 1000+ miles a week going back and forth to therapies at LifeScape in Rapid City and at the school in Philip. As the title of this blog implies, it’s worth it. It’s not easy and not always a lot of fun, but worth it.
Gus does ABA therapy at LifeScape five days a week, and also does speech, OT, and PT there once weekly each. He has speech at the school once weekly, too, and also spends some time with the special education provider at the school once weekly.
Miss Ada is in preschool three days a week, and ends up going to daycare four days of the week. Since Augustus and I are out of town and Dane is at work (not in town), Grandma Lisa and Aunt Emily are our saving grace with this. They make sure Ada gets picked up from preschool and taken to daycare each day. She loves preschool, and loves everything about daycare except nap time. Gus and I have to leave before preschool starts a couple of days a week, so Dane has to stick around to be able to get her to preschool (Again, must praise his employers on being accommodating.)
Ada comes to LifeScape with Augustus and I once weekly on Fridays. At first it was really hard (on her and me), because she felt left out having to be quiet or wait in the waiting room while Gus was working. I can see how what Gus is doing and learning looks like a lot of fun to her. Fortunately, the therapists are great, and we have found ways to incorporate Ada into things and to allow her to have some fun, too. Gus has lunch as part of his therapy, so Ada has lunch with him. She also gets to come along for sensory breaks in the sensory room, which is a lot of fun for both of the kids. She has gotten better and understands better now that she’s been tagging along for several months now.
I can’t believe she will be five in just over a month. She is a fan of everything superhero right now. Her Skye “pups” are her favorites. She is super into “Sam Sandwich” (a Disney short) and has a newfound love for “Ben & Holly” (a show on Nick Jr.) She has also been into the Power Puff Girls, which I can get behind, as they were something I watched as a kid. She can write her name and most numbers, although tends to get a few of the numbers backwards. Her drawing skills seem to improve all the time. She is still talking more than anyone I’ve ever met. She is crazy articulate and clever. I love when she makes up songs to sing to us.
We work hard to make sure Ada has plenty of attention along with alone time and fun with mom & dad.
She is becoming such a good helper. Her tender heart and fierce attitude are seriously an inspiration to me. When her brother is having a hard time, she is the first one to try to comfort him. She will bring him her tablet and turn on some nursery rhymes for him, or find him a blanket, or ask “Alexa” to play him “Wheels on the Bus”, his favorite. She has also come a long way in understanding some of the harder things that we have to deal with regarding Augustus’ behavior. He sometimes lashes out at her, and she has really learned not to take it personally and that most likely he is trying to tell us something and is frustrated about it and does not know how to relay that other than lashing out. My mommy heart aches in the times she says “But Gus can’t talk!” or “Gus doesn’t play right!” Fortunately, most of the time, she is patient with him. One of their favorite games to play is when Ada follows Gus around and acts and plays like he does; jumping, wrestling, squealing, etc. Personally, I think they are perfect for each other as siblings.
Ada saw a dentist for the first time this month. She has always been pretty good about brushing her teeth. Unfortunately, she has such a petite and tiny mouth that all of her teeth are very, very crowded in there. Her teeth look pretty healthy, but on x-ray it turns out she has a lot of cavities and decay between her teeth, especially her back teeth. The dentist told her that: Number one, her teeth are so crowded in her mouth that even brushing and flossing could only do so much, and that number two, a lot of dental stuff is actually hereditary. I was never sure if that was true or not. It sounds like it most definitely is. Dane has a family history of “bad teeth” and has “bad teeth” himself. Poor Ada has been blessed with her mama’s eyesight and her daddy’s teeth. I am shaking in my boots a bit, as Ada is going to undergo a dental procedure this next week at the Same Day Surgery Center in Rapid City. They are going to put her all the way under, as in IV anesthesia. She is so tiny, and it just scares me. While this route was not necessarily totally necessary, it was our best option. She would have had to have 4+ appointments at the dentist to take care of everything that needs done, and the dentist and I felt that would be fairly traumatizing for her. Plus, with the way her teeth are looking now, she will have plenty of appointments in the future. We don’t want her terrified so early in the game. I am of the opinion that if they are baby teeth “Oh well, they will fall out anyway.” BUT the teeth Ada needs fixed are her molars, which she has many years left with. Wish us luck, say a prayer, send us good vibes.
The biggest thing we are working on now with Gus is potty training, and oh boy, it’s an adventure. I must sing my own praises about potty training Ada. I started very early, in fact, too early, and had to wait a bit and had great success when it was time. Gus, now that’s a very different story. First of all, he’s a boy. I don’t care what anyone says, boys are harder to potty train. Then you add in very limited communication, sensory processing disorder, developmental delays, and autism and it’s straight insanity, in my opinion. Plus, he’s a big kid, so a little kid potty just isn’t an option, so we are kind of tied to the bathroom a lot. Truth be told, my bathroom looks like a war zone.
I do have to say, that while I am entirely overwhelmed and somewhat discouraged with the process, I am thankful it is even an option to try at this point in the game. I was not sure if he would be 3 or 5 or 10 or if he would never be ready to try potty training. I am at a point in the process where I am not entirely sure if we are making progress or not. I am confident that one day he will be potty trained, though.
Right now, it’s basically me taking him to a toilet and sitting him there every 40-ish minutes. I put him in underwear right away in hopes he would dislike being wet/dirty. He seemed to dislike it, at first, but now I have kind of been sticking to Pull-Ups because I am beginning to think he just really does not care, and in part because all of his underwear are dirty and I haven’t had a chance to wash them. Ha.
I show him a PECS card with a picture and the word potty on it. I then take him to the bathroom, and before walking in, I show him the card again and get him to look at it and either hand it to me or say something (anything, truly) to acknowledge that we are going potty. Why? Because the real trick in this whole process is going to be getting him to let someone know when he needs to use the bathroom. I was told he could catch on quickly or that it may take many, many years.
Positive reinforcement is HUGE for Gus. His favorite food ever is fruit, especially blueberries. Therefore, I use blueberries for positive reinforcement. He gets one for trying and a few for peeing on the potty. I tell him all the time that if he poops on the potty he gets the entire container of blueberries. Silver lining – blueberries are better than candy.
It’s also hard, because a lot of it is on ME. I have to get him to the bathroom, work with him to try to teach him to help me get his pants and underwear down, and then I physically have to sit his 40+ pound body on the toilet. Surprisingly, he sits on the toilet fairly well most of the time, which I was definitely not expecting. Getting him to keep his hands on his lap and not in the toilet, or flushing the toilet, or playing with anything he can reach is another story. I am also supposed to keep data of every potty experience we have and if he was wet/soiled/dry and if he went and the time, etc. etc. While this will be helpful information, it’s a lot of freaking work and time out of the day. I did a pretty solid job the first couple of weeks, but weekends I tend to give up for two reasons. One, I just want a freaking break. Two, I need to get things done!
He has had some success with peeing in the potty. I have yet to get him to go #2 on the potty.
Like I said, I cannot decide if he is really ready. I know I said I was ready, but at this point I’m not sure that I am either.
The older Gus gets, and the more therapy he receives, the more aware he is. Hallelujah! BUT the more aware he becomes, the more frustrated he becomes in regard to communicating. Therefore, we have had some behavioral type issues regarding this, as well as some behavior we (as in our family and his therapists) truly cannot figure out.
It was recommended I take him to the doctor to rule out any type of health concern that may not be obvious to us. This included a trip to the dentist, which actually went over phenomenally well. They told us with him liking to chew on things and using chewelry that they were surprised how straight and healthy his teeth were. They chose not to do x-rays or a cleaning or anything as not to totally traumatize him, especially since things looked good and he is only 3. Baby steps. He was cleared of any underlying health or dental concerns.
Just take a minute to think about this…Can you imagine how hard and frustrating it would be to be a small child and be in pain or discomfort and not be able to find a way to let an adult, parent, or someone that could help you know? It’s heartbreaking to me. Whenever he get’s sick or seems to be not himself I really worry. Thankfully, I am his person and spend basically all of my time with him so no one knows him as well as I do.
It’s also very hard when your child physically harms you. It’s a feeling that’s hard to describe. I don’t mean when a toddler or small child tests the waters and slaps or hits you. I am talking about when Gus is in a mood and struggling and hits me in what seems to be anger or frustration. I have been slapped, scratched, kicked, hit, and often get my hair pulled. He will sometimes grab my glasses and seemingly try to crush them in his hands. It is very hard not to take it personally. He is not mad at me or hurting me out of spite, he is trying to communicate.
When this happens, he often grinds his teeth and puts his hands into fists and makes a lot of not so happy sounding noises. Sometimes, it is pretty easy to figure out what’s going on. Perhaps he is being denied access to something he wants. Perhaps, he wants something or needs something and cannot tell someone. The other confusing “perhaps” is that perhaps it is an automatic behavior.
As you are probably aware, persons with autism almost always have “stims”, or things they do that just make them feel normal or “regulated”. For instance, Gus flaps his hands and does a lot of jumping. Those are stims. When a behavior continues to happen and there is no obvious trigger, one starts to wonder if it could be automatic behavior, kind of like a stim.
We are in the process of working on figuring a lot of that out. There are certain tests/experiments (one being a “functional analysis”) we will go through to try to see if we can address some of the “problem behaviors” that we cannot link to denied access or a want or need.
I have a full-time job in being a mom (as all moms do), but I also feel like I have a full-time job in traveling and working in therapies with Gus. I am gone from home a very minimum of five hours a day, most often longer, and spend money in doing so, not make any. I have to have beyond amazing organization skills just to remember to bring everything we need to therapy (double the things now that we are potty training), as well as keeping appointment times straight, and everyone in the family’s schedules running smoothly without conflict. Thankfully, I have always been organized. All along I was being prepared for this life, I say.
I really struggle to keep up at home. While we aren’t home but some late afternoons and most evenings, it takes no time for the house to be in total disarray. We have a sensory seeker up in this bish. He lives for messes and to play in them. He gets into absolutely anything and everything he can. Disorganizing and throwing things on the floor are a favorite pastime of his. The bigger and more able bodied he gets the crazier it gets. I am not talking about regular “kid getting into stuff” business. I am talking sensory seeking full body involvement havoc, here. I am talking a literal curtain climber! Anyone that has been over to our house for any length of time or watched him for a bit will understand this to an extent. It’s seriously 24/7 other than when he sleeps, and he only sleeps when he passes out from absolute exhaustion. I have to keep an eye on him or have him in hearing distance at all times or deal with the consequences.
As I mentioned, I have always been huge on organization, and having a clean and organized home really helps my morale, but I have had to chill on this aspect more than I want or would have ever expected to.
People, I am straight exhausted both mentally and physically basically the majority of the time. But you know what? I’m okay. Do I have some really bad days? Hell yes. Do I have some really good days? Absolutely. I’ve got this. I can truly say that I have more good days than bad.
Shout out to those of you I vent to when I need it.
Shout out to those of you always in our corner.
Shout out to anyone who reads this.
Peace & Love,
This blog post started as one thing and kind of morphed into another. Therefore, I will make this part 1 of more posts to shared at a later date.
My husband and I experienced fertility problems, and tried for a very long time to conceive our first child. With the help of a fertility specialist, and fertility drugs, we were finally able to conceive and welcomed a baby girl; now a clever and sassy 4-year-old preschooler. We were told our chances of conceiving again (naturally) were VERY slim, and that if we ever decided we wanted another child that we would most likely have to go about the same route we had with the fertility treatments, and that birth control wasn’t necessary if we were okay with potentially conceiving again, although very unlikely.
I so cherished those first months with my baby girl, and even quit my job and decided to stay home with her full-time no matter what sacrifices had to be made to do so. I knew that this would likely be my only child, and children were my dream and passion always. I was so blessed.
My husband and I left for a weekend getaway for our 6th wedding anniversary and left our 6-month-old baby girl overnight for the very first time. Lo and behold, about a month after this weekend getaway, I found out I was pregnant! I was absolutely SHOCKED, awestruck, taken aback, and even scared. I had no idea what my husband would think, as we (mainly he) had sacrificed a lot for me to be able to stay home with our firstborn, and things were not easy financially. Long story short, he was totally surprised and happy and the supportive husband I so needed.
My second pregnancy was really tough on me physically and emotionally. I had a lot of back issues and was trying my best to be my best for my babygirl. My body wasn’t even close to being back to feeling “normal” at just 6 months postpartum, and I definitely wasn’t even close to being emotionally back to “normal” learning to be a new mom and then having the crazy tiredness and hormones of early pregnancy on top of it.
Trust me, I know that people have children close together all the time, and it’s not that big of a deal. It was just such a shock to my system, as I was basically convinced I would only have one child in hopes of maybe trying for another years down the road.
After the initial shock I was very excited and so looked forward to adding another to our little family. I was even more excited once we learned our newest addition was a little boy. How perfect!
Just fourteen months after the birth of my first, I was holding my second born in my arms.
It wasn’t easy, as my oldest was not yet walking, and many a day I had one in a baby carrier and one in my arms; two cribs, double the diapers, and very, very little sleep. Little did I know, this wouldn’t even be the hard part. The hard part was yet to come.
I always heard from others that having children close in age was extremely hard in the beginning, but would become much easier once they were older, as they would be close friends and a huge help to eachother.
I looked forward to this. I couldn’t wait to see them play together and hear them giggle and chat in the adorable way young children do.
My little girl has always been a talker and still is. She started talking early and this seems to only increase seemingly by the day. I am serious in telling you that I have never ever met a child as articulate and chatty as this little girl.
My son, at first, was an overachiever it seemed. He was rolling over onto his belly at just two weeks old. He took to crawling earlier than his older sister had, although did take his time to start walking; just like his sister.
He started jabbering and before we knew it was saying words. The word he said I remember most was “grandma”.
To be honest, I took this time for granted. I was busy, things seemed to be progressing as they should. I just assumed we were on our way to hearing his cute little voice on the regular.
While I cannot remember an exact time (an estimated guess is all I can give), when he was somewhere around 14 or 15-months-old I began to notice he quit saying words, like completely. I always just thought he was “a man of few words” and liked to keep quiet since his sister did plenty of talking for the both of them, and then some.
Also of note was just how wild and active he really was. I kept getting the speel “he’s just a boy“. At first, I took this to heart. I am from a family of all sisters and primarily female cousins. I hadn’t a clue about what to expect from a male child. After a while, though, it just seemed unreal, out of control to me. He was always, always into something; fearlessly climbing and jumping, wrestling, head-butting, you name it. Fearless.
He was the absolute messiest eater I had ever seen. I felt like I needed a pressure washer for the highchair and kitchen after every meal and snack. He would squish food, rub it all over himself and his surroundings, throw it, all of that and then some. It seemed to only get worse over time.
He was an eater! He was born ready to eat and kept up that appetite from that moment on. His appetite has never changed. He often eats more than I do in a day. The thing is, he began to be particular about what he would accept and eat, which was a pretty sudden and significant change. (see this previous post.)
Then, it was if he had never known his name. I say this because he virtually stopped responding to his name entirely. It was near impossible to get his attention. I was really starting to get concerned. While he was still happy, healthy, and extraordinarily wild, things seemed to be regressing.
A lot of things went through my mind. All of those words we hear, but choose not to acknowledge until we really have to: regression, developmental delays, ADD, ADHD, autism, mental illness, etc…(see previous post)
I KNEW something was wrong and had been for a while. My mommy heart KNEW.
The straw that broke the camel’s back (so to speak), and really made me accept that we needed to look into things, was when he started jumping and flapping his hands (aka stimming).
I had basically already diagnosed him myself before he was even 18-months-old. That seems crazy, but since I had just been through seeing the milestones of his older sister, it was pretty easy to see where things weren’t even close to the same as they were with her. I, in fact, called his primary care physician and raised my concerns. The doctor was fairly skeptical, and I could tell he thought I was just overreacting, as I have always been a very observant and concerned parent. He did reassure me that he was sure I knew best, but that we just as well wait until his 18-month-Well-Child exam, since most times diagnoses of delays and such weren’t even done until the child was a bit older, anyway.
I made an entire written list of my concerns for the doctor before our visit. To say he was impressed by my observations is an understatement. To this day, he still praises my attentiveness and early intervention.
I will save you the story of the specifics of diagnoses (it’s quite a process and a real headache), but just after my son turned 2-years-old, he was diagnosed with nonverbal autism spectrum disorder and sensory processing disorder. While I was totally expecting this, it was different once it was actually on paper. The silver lining of it being on paper, was that now we could seek out resources and help at the very susceptible and tender age of two. Early intervention is key.
Needless to say (type), I have yet to experience my children having a verbal conversation, or to see them playing in a traditional manner.
Balancing the act of raising a neurotypical child and a child with autism so close in age is THE REAL CHALLENGE.
Tearful, tantrum-filled goodbyes are common during a child’s earliest years. Around the first birthday, many kids develop separation anxiety, getting upset when a parent tries to leave them with someone else. Though separation anxiety is a perfectly normal part of childhood development, it can be unsettling.https://kidshealth.org/en/parents/sep-anxiety.html
Separation anxiety rears its head most often at the 8-month to 1-year-old mark; give or take. At first, most parent’s find it unsettling, and often feel just as upset as their little one. Later on, it becomes more of an inconvenience. They all eventually grow out of it, though.
My 4-year-old daughter is most definitely a mama’s girl. She went through separation anxiety as an infant, and again pretty significantly when she first started daycare. I expected as much, and was totally prepared to deal with it the best I could. While it was hard on both of us, it also made me realize and feel just how deeply we were connected, even at her young age. There is nothing like the love for and the love from your child. Nothing.
My now 3-year-old son was/is a totally different story. As an infant, he cried when he was hungry or had a physical need, but he had no reaction or preference to who it was that fulfilled that need. He would happily sit with or engage with anyone. He never once fussed when I left him somewhere; not even his first day of daycare. He always seemed to be in his own world and really didn’t care who was around, as long as his needs were met. He never really made eye contact with anyone, and never had any reaction to someone saying his name. It was often near impossible to get his attention. As time went on, this was all definitely a BIG red flag.
We expressed our concerns to his doctor, and he was eventually diagnosed with Autism Spectrum Disorder and Sensory Processing Disorder.
Did I worry about whether my son and I truly had a connection? Of course I did. I don’t know anyone who wouldn’t have the thought at least cross their mind. I was in no way being shown that I was anything other than a service provider for him. That’s hard to type, and hard to admit, but I want to be completely transparent. It in no way changed how I felt about him though; NO WAY. He was still a part of me and his father. Although he was different from my other child, he was chosen to be mine. He needed me, and I needed him.
My son is a “seeker”. This comes along with his diagnosis of sensory processing disorder, which is a diagnosis that very often goes hand-in-hand with autism spectrum disorder. His senses do not appropriately process the input of things (ex: smell, taste, pressure, sight/light, etc.). A seeker is seeking more input; more pressure, more light, more noise, more taste. Therefore, my son loves to rub on or against anything. He slams into things. He chews on any and everything. He spins. He flaps. He squeals. He licks. He jumps and jumps and jumps. He likes to push his head against things. He likes to be squeezed (on his terms). He likes to rock back and forth. He likes to feel and squish his food. He likes to take his food out of his mouth after it’s chewed. He likes to do anything that provides him with sensory input. Therefore, he is very accepting of hugs and sitting near people for sensory input. He will even wrap his little arms around my neck and return a hug. For this, I am very thankful. He will even let me kiss his cheeks. As he becomes older and more aware, these hugs and kisses mean more and more because they are reciprocated and not just appreciated for the sensory input. In those times of struggling to feel connected, his sensory seeking was a welcome recourse.
The opposite of a “seeker” is an “avoider”. An avoider avoids all forms of sensory input and attempts to lessen input. For example, they may plug their ears or need headphones to deal with loud noises. They often have aversion to certain textures and feelings. They like to do anything that provides them an escape from sensory input.
It is actually possible to have the tendencies of both a seeker and an avoider. For instance, my son is definitely a seeker, but he does have some avoider tendencies with certain textures. He has a huge aversion to Play-Doh and putty type textures, which we have been working on. He also has an aversion to smooth textures of food such as yogurt, mashed potatoes, etc. We are working on this as well.
Now that you have all of the backstory information, I can share what I’m actually here to share…
A few weeks ago, during my son’s ABA therapy session, there was a new registered behavior technician (RBT) working with him. His ABA therapist was also present and observing the session. I was in the waiting room.
After a while, his ABA therapist asked me to come outside where they were playing on the playground equipment because my son was upset. I got outside and got his attention and he stopped crying and was no longer upset.
It turns out that his ABA therapist had left the room to go get something during the session, and once she left him alone with the RBT, he got upset. Once the therapist returned, they still could not get him calmed down, so they tried taking him outside to play without success.
For the first time ever, my son had a case of separation anxiety. He was not familiar with the RBT yet, and his therapist he sees 3x a week wasn’t around, and he realized it. You guys, THIS. IS. HUGE. My son has become aware enough that he is noticing who is around him. He missed me, and I was able to make him feel better with just my presence, which has NEVER happened in the past. This is a milestone. This is big for his safety as well. I always worried about him (still do) because he is so friendly and has ZERO stranger danger and no awareness of danger in general. We are seeing a step in the right direction now. I hope his awareness continues to improve.
The thing with autism, is that often those diagnosed reach milestones at a much slower pace IF they ever even meet certain milestones. Therefore, we never know what to expect, but it sure makes it all the more exciting when one of the milestones is hit.
Here’s to milestones and inchstones.
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! My last post was more on the informative side of things. Therefore, I think it’s time for a more personal update. On that note, Augustus is absolutely THRIVING right now. It’s more than amazing. He is doing things we didn’t know if he’d ever do. One of his therapists even commented “I never thought I’d see the day…” I attribute most of his success to his applied behavior analysis (ABA) therapy. He has absolutely flourished since starting.
It is very common with autism to have extreme interest in certain things or objects. They say that an autistic child’s interests are often lifelong. Gus has taken a real interest in animals, especially jungle animals. In ABA therapy, he has a place mat with jungle animals on it and a bin of toy animals. Since those were introduced, the words have been coming. It’s also not unusual for interests or preferred objects to come and go, but animals, music, and vehicles of all kinds seem to be a stronghold for Gus.
At first, he was just saying the name of animals. I hate to say ‘JUST’ because that in itself was huge. He said “tiger”, “kangaroo”, “froggy” (see video at end of post), “ducky”, “elephant” (his version), “giraffe” (his version), “bear”, fish (or shhhhh), and probably more I’m not remembering off the top of my head. What’s adorable about Gus is that he tends to whisper when he’s trying out a new word or sound, so it can be easy to miss. Once he is more confident, he will say the word or sound out loud. For instance, he was playing alone at home with his animals and I heard him whisper “turkey” clear as day. He has never said “turkey” when playing with me or in therapy, but I caught him in the act.
He then jumped from just saying the names of animals to actually labeling them! As in on his jungle animal place mat, they could ask him “Where’s the tiger?” and he would point to it.
It’s also important for me and everyone else to understand and remember that just because he develops new skills, words, sounds, etc. it doesn’t mean he will use them on any kind of regular basis. For instance, he may say a word and we won’t hear it again for months…or even longer. What is amazing though, is that you can see him thinking and recalling just by the look on his face. The other thing to keep in mind is processing time. It takes Gus longer to process things. We need to be sure to give him time and help to instill the confidence that he can come up with and say things on his own, even if it takes a little longer. I was told that there have been cases where processing time has been up to 7 minutes. I just love to see him thinking and studying and trying. It absolutely breaks my heart sometimes when I see him working so hard and I see his little lips moving, but he just can’t quite come up with what he’s trying to label/say etc. His brain and his body just aren’t communicating correctly.
Along with processing time, we also have to keep in mind that Gus is VERY stubborn. Seriously, who would have thought Dane and I would have a stubborn child? (HAHA!) We have figured out over time that there a lot of things he can do, especially physically, that we just have to wait him out on and make him do himself. Because he struggles with some things, it’s just easier for him to let others help him, but in order for him to get stronger and learn to do things on his own, we have to wait him out. It’s a tricky prospect. For instance, in the Sensory Gym at LifeScape where he receives therapy, there is a ladder leading up to a platform then to a slide. He had been working on the ladder for a while in Physical Therapy (PT) and always required help. Well, one day he was super motivated in ABA and we watched him go up the ladder almost completely by himself. Then we knew he was physically capable. So, from then on, in ABA therapy, we would put him on the ladder and just wait him out and encourage him because we now knew he could do it himself. We’ve waited several minutes before, but he will eventually do it. The other tricky thing is his sensory needs and lack of safety awareness. If someone stands behind him while he is on the ladder he will lean backwards and pretty much completely just trust fall backwards seeking pressure. So, we figured out that we have to stand at an angle and not too closely behind him so he knows the only direction is up. This is just one example. We’ve figured out a lot in the last month or so.
Speaking of sensory needs, one thing that has revolutionized his learning and attention span is a specific kind of chair, a Rifton chair I believe is what they call it (see photo below). It is a chair that has a part that comes up in the middle between his legs and almost like foot pedal looking things on the floor at an angle that Gus can put his feet on. The chair also has a straight back and high straight sides that keep him a little more tucked in giving him that sense of pressure he craves and needs to better concentrate. He loves to put pressure on things with his feet, so the foot pedal type attachment on the chair allows him to push down when he feels the need. We went from not being able to keep Gus’ attention for more than 30 seconds TOPS (usually less) to up to several minutes now. IT’S HUGE!! Who would have thought a chair could make such a difference. Oh, the things I’m learning.
I am starting to feel more confident in my parenting all the time. I am starting to figure out what Gus wants and needs. In fact, I was even able to bring him back down from a sensory meltdown at church a few weeks ago. I was so proud of that! I took him to the cry room for a while and got him calmed down. We were then able to go back out and sit in our pew for the rest of the sermon. I wasn’t even completely horrified that he had ripped a page out of a hymnal causing an older lady to audibly gasp as if someone had passed out or something. (Haha!) Nobody knows him like his mama. I’m doing the best I can to understand what he needs from me and his surroundings in general.
I have a lot more to share. I got busy and behind; more later.
Signing off for now.
OF NOTE: One of Augustus’ speech therapists said he could now probably be considered MINIMALLY VERBAL as opposed to nonverbal. We hope to progress to mostly verbal.