No more crib. Gus on his new big boy bed (futon mattress) in his bedroom and big sister, Ada, checking things out.

Well, I have another milestone to share. While it may seem mundane, a post about a kid transitioning from a crib to a bed, you have to understand that for our family THIS. IS. HUGE.

My son, Augustus (Gus), is 3-years-old with diagnoses of autism spectrum disorder (ASD) and sensory processing disorder (SPD). He is a sensory seeker. He is the size of your average 5-year-old. He is very tall, very strong, and very fast and clever. Sleeping issues tend to go hand-in-hand with these diagnoses.

Up until yesterday, Gus was sleeping in a crib for his safety, and for mom & dad’s peace of mind and sanity.

Yesterday, Gus fell asleep on my lap. I carried him to his crib and put him down. I heard him making some noise in there, eventually, squealing and squawking, but that’s nothing new. I was in my bedroom putting clean laundry away when I heard a loud bang that almost sounded like someone had come into the house. I took a peek at the front door, and no one was there. Then, I heard a doorknob turning as I walked by Gus’ bedroom door on my way back to my room. I opened his bedroom door, and he ran out of the room. I instantly called my husband to tell him the day was here.

Why is this such a big deal for our family? Why were we dreading this day?

Gus does not just go to bed at bedtime. When he gets tired, he gets extraordinarily amped up and wild. I know this can be a common occurrence in younger children, but for Gus it is at another level. A whole different level. He jumps, screams, squeals, squawks, crashes into things, does headstands on the furniture, chews on things, spins, etc. This is all related to his SPD and seeking sensory input. Normally, he seeks input to feel “regulated” or “normal”. When he is tired, he seeks even more input because he is tired and feeling even less input than usual.

Along with the issues due to him seeking sensory input, he also has some sleep issues likely related to autism. He wakes up often throughout the night. When he wakes up, he usually does some jumping and squealing and sometimes reaches toys or books from his crib and plays for a bit before falling back asleep. That’s where the crib really came in handy. He had the safety of being isolated to just his crib and was not able to wander around.

I have no idea why he never tried or wanted to get out of his crib before yesterday. He has been big enough and physically able to do it for a couple of years. I, personally, think he liked being enclosed in his own little space. He is big enough now, that he is nearing the point of outgrowing his crib, so maybe it became a bit too enclosed for him. I guess I will never know.

Subsequent to all of this, I had to figure out what Gus could safely sleep on or in and how to keep him in his room at night.

I took his crib apart and out of his room right away. My husband thought I was jumping the gun, and told me as much. My thought was that I would rather have him crawling out of a bed close to the ground than jumping out of a crib to get over the rails. Mama knows best.

I do have a bed frame for a toddler bed in the basement, but it is up off the ground, and Gus is about to outgrow his toddler mattress anyway. I considered moving the bed from the spare bedroom in the basement upstairs, but decided against that. I eventually came up with what I felt to be the safest solution: a futon mattress! I figured it could be laid on the floor, therefore, no danger of falling off of a bed while jumping in the middle of the night. BINGO!

Now to figure out how to keep him in his room at night…I had a very nice video monitor with 2 cameras when both of my children were infants. I got that out only to discover the monitor was broken. Then, I remembered that I had a spare doorknob safety cover. We already have a few around the house to keep Gus from escaping outside or down into the basement without us knowing. So, I put a doorknob safety cover on the inside doorknob to his room. I felt kind of awkward about this. If I wasn’t doing it for his safety, I definitely would not have done it. Without it, he would wander throughout the house and get into all kinds of mischief and danger while the rest of the family is sound asleep.

Doorknob safety cover.

Go time…bedtime came around and my husband and I took Gus to his bed, sat him down on his mattress, said nighttime prayers, shut off the lights, and shut his door. I was anxious not being able to see him without actually going into his room and potentially waking him up. Per the norm, he jumped and crashed and squealed and did all of the things he tends to do before he goes to sleep. After it was quiet for a while, I decided to go take a peek. To my surprise, he was sitting on his bed looking at a book, calm as could be. I waited a while longer and just had to check again. On second check, he was awake and snuggled up by his mattress and against the wall. That made perfect sense to me. He likes pressure, so being able to squish himself between the mattress and the wall is probably super comfortable for him. The third and final peek, he was in that same position but sound asleep. I left his room and proceeded to give my husband a high five and an “I told you so!”.

As usual, Gus did wake up a few times in the night. I can’t say how many times, because in this household we are all so used to it that we can generally sleep through it, thankfully.

I heard him wake up this morning. Thankfully, he wakes up happy most every day. If he wakes up SUPER early, I generally just leave him in his room (crib in the past), until it is an appropriate time to have everyone awake for the day. He just spends that time squealing, jumping, playing, and looking at books. Now that he has free reign of his room, I was not sure what I would find upon opening his bedroom door in the morning. I could hear him playing with his firetruck toy this morning (sirens). I bet he is happy to be able to have access to all of is toys when he wakes up SUPER early. Anyway, I opened his bedroom door, and he was lying on his bed playing with a toy. As usual, he had pretty much all of his books off of his bookshelf, but oh well. That would have happened at some point in the day anyway, even if he had been sleeping in his crib.

Our first night in a big boy bed was a TOTAL SUCCESS. I have to be honest and say that I absolutely was not expecting as much. I was so nervous about it, but tried to keep a positive attitude. I was just so scared he would somehow hurt himself. I’m not overly confident. It’s only been one night, after-all.

Seriously, if you made it this far, thanks for reading this. If you didn’t make it this far, I don’t blame you (although, I guess you’ll never read this). I totally understand if you think I am totally ridiculous, and maybe I am. I just like to share what things are like in a life I never expected. I hope what I share not only entertains, but educates. How great would it be if everyone were more aware and tolerant of ALL disabilities and differences?

Love to you all, especially my “support circle”.

Peace & Love,

– AMomsFaithUnbroken

Big Boy Bed

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.

– AMomsFaithUnbroken

Separation Anxiety

To the Lady in Perkins that will “Always Give her Opinion”

I’ve known this day would come…the day someone, a stranger at that, criticizes and tries to belittle me for the choices I make for my autistic son in a public setting.

It’s hard enough when any child is upset in a public setting. You don’t want the stares and the “looks”. Kids throw fits and tantrums. They can be unknowingly rude. They are messy. Add autism to the picture, and it only intensifies.

BUT

Lady, my son cried for a total of maybe two minutes. He wasn’t throwing a fit. It wasn’t a tantrum. He was hungry, thus the reason we were in a restaurant. He is not even 3-years-old yet. He just worked his tail off at therapy working on the things we all take for granted on a daily basis.

Your attempt to make a scene, all because I chose to seat my child in a highchair to keep him safe, was uncalled for.

Yep, I sure did see those booster seats “right behind me”, but they are not an option right now. My son bolts and wanders. He doesn’t know any better. He is perfectly comfortable and SAFE in a highchair.

Maybe had you used some tact or minded your own business, as your husband was so desperately trying to tell you to do, I wouldn’t be here typing this now.

Let’s be honest, you tried to embarrass me in a moment that was already hard enough. Talking about us loudly enough everyone could hear, and then having the nerve to confront us about it in a rude manner.

At first, you almost won. I got flustered and wanted to get up and leave. But no. I was doing nothing wrong, and either was my son. You, lady, are wrong.

I respect that you had the nerve to say something directly to me, eventually, though I did not appreciate your condescending tone and your extraordinarily rude demeanor.

Every fiber of my being wanted to tell you to “Mind your own f*!#ing business!” But unlike you, lady, I have tact.

I sure feel sorry for your horribly embarassed husband. And guess what? I feel sorry for you, too.

After causing such a scene and my incredibly polite response of “He has autism, and if he sits in a booster seat he will not stay and will wander around.”, which was the only thing I could muster to say, your simple response of “Okay, well I am always going to give my opinion.” I say this to you: you are lucky I kept my “opinion” to myself.

Had you politely asked or suggested maybe he would fair better in a booster seat; cool, I would have appreciated your concern and suggestion and politely explained the situation. But your insistence on making a scene and making sure your presence was known to everyone in the restaurant apparently outweighed your true concern for anyone but yourself.

This isn’t an autism issue, this is a people issue. I ask that the next time you see an obviously flustered person trying to calm their young child that you choose kindness, or better yet, to keep your opinion to yourself! Your “opinion” only made a small anthill of a situation into a mountain.

– AMom’sFaithUnbroken

The Controversial Child Safety Device

The “anti-lost strap”. The “walking harness”. The “hand belt”. The “wrist harness”. The “child harness”. The “safety harness”. The “backpack leash”. AKA a child leash. They come in many forms, shapes, sizes, and colors. And boy, are they a hot button issue.

In this blog post, I will refer to them as a leash, because plain and simple, that’s what they are.

I remember the first time I saw an adult with a child on a leash. I was in a mall, if my memory serves correctly, The Mall of America even, and I had to have been 4 or 5-years-old. It was an entirely foreign concept to me. I had never seen it before. I remember the adults I was with having some not so kind comments about it, which made sense to me.

I grew up thinking, and continued thinking well into adulthood, that leashing a child was lazy parenting and abusive to children. I kept this position on the topic until the tables turned.

Before I go any further, I want to talk about a story that inspired me to blog about this topic. I considered this topic in the past, but then felt maybe it wasn’t worth the controversy or feels. You see, blogging is a way for me to sit down and think, deal, and feel…feel intensely; really dig deep and share my thoughts and feelings. Sometimes, I struggle to motivate myself to blog because I don’want to deal with the feels, even though I know how good it is for me to just do it.

The Story that Inspired this Blog Post (click this to read)

It was all over the headlines the last week and a half or so. Maybe you saw it. (?) An autistic 6-year-old boy from North Carolina was at a park with his father and his father’s friend when he took off running and his father could not catch up and lost sight of him. They searched for him for days before finding his lifeless body in a marshy area in 2-3 feet of water. When I came upon this story and read it, I literally shed tears and my stomach sunk in a way that is hard to describe.

Autistic individuals have a tendency to bolt. I have mentioned this before in previous blog posts, as my son is a “bolter”. Also, drowning is the leading cause of death in children with autism. They do not fear water and do not understand the consequences of entering the water.

The first time my son bolted on me, he ended up well over 100 yards away from me at a dead run and did not respond at all to his name or anything else for that matter. Thankfully, his dad was able to catch up to him. It was scary and made me realize just how fast it can happen and how fast he can move!

The reason this hit close to home is because, as mentioned, my son bolts and does not fear bodies of water. Also, per his therapists, it is recommended that we use a wrist leash to give him some freedom while outdoors or in situations dangerous for “bolters”. It will give him more freedom and also give caregivers a break from carrying a curious wiggling always moving 35+ pound 2-year-old everywhere to keep him safe.

Yes, leashes have their dangers. A wrist leash can be dangerous in that if the child falls down and the leash is used to help assist standing it can dislocate the child’s shoulder or wrist. But anything can be dangerous. That’s why we have to do our research so we can use devices as they are meant to be used to avoid injury and accidents.

A child leash can be used as a helpful safety device or as a mechanism to show control. Obviously, I just want to be able to enjoy events and outings with my child and keep him safe. It’s not as easy as just keeping my eye on him. It is impossible to keep your eye on any one child all the time. Literally, all the time. My child requires constant overseeing to keep him safe, for now.

I did get a wrist leash for my autistic 2-year-old child. I did this to keep him safe.

I am already well aware of the stares and the looks I will receive because I used to give those looks and stare myself. It is so easy to judge and misunderstand until you come to a place where you find out that putting your child on a leash is literally the best thing for his safety in some situations.

I will do anything for my children. Anything. Even if it means looking like a lazy or domineering parent.

It is impossible to know someone’s situation, and this for me has been the perfect example of why we should not judge.

This isn’t the only situation I’ve come across in that my views have changed significantly. We live. We learn. We evolve.

– AMomsFaithUnbroken