Summer is here. We’ve already used almost an entire bottle of sunscreen. We all have tan lines. That’s how it should be.

I am happy to say that our local swimming pool is OPEN, with precautions in place. I know just how lucky we are. Most public pools throughout the country are closed down amid the Covid-19 panicdemic. Going to the pool with my two children has and always will be an adventure. I have to admit, until this year, we had only been to the local pool MAYBE twice and my oldest is five-years-old. This was only partly due to our busy schedule. The other part was ME. Having two small children close in age made going to the pool terrifying. The fact that one has zero danger awareness and the other is quite cautious and that neither of them can swim makes for a wild time. Now that they are older and I found them floaties they can wear, life at the pool has gotten much easier. I have succumbed to the fact that I will most likely never be the mom that gets to sit on the side of the pool reading a book and soaking up the sun. I will always be the mom in the pool. I’m okay with that. Fortunately, both kids love the water. As I stated, Gus is fearless! He will float/swim himself anywhere and has zero fear. Ada is very cautious, doesn’t like to get her face wet (especially not the eyes), and usually has a tight grip on me or someone else. What is a sensory seeking little boy’s favorite part of the pool?: The jets where the water comes out on the side of the pool. He will find one of those and hang out there as long as he can, placing his hand(s) in front of it. Ada took swimming lessons this year and has gained a lot of confidence. I really want Gus to learn to swim, but will have to maybe wait until he is a little older and find somewhere that specializes in teaching those on the spectrum. The hardest part of going to the pool with the kids, at least when I am alone, is leaving. I have to get the kids and myself dried off, gather all of our things, and get everyone’s shoes on all while holding Gus’s hand. If I don’t, he will take off and jump right back into the pool.

I also set up an inflatable pool in our yard. Both of the kids enjoyed that. What did a sensory seeking little boy enjoy most?: Leaning onto/out of the pool so the water would cascade out to make mud. He also enjoyed getting in and out and bolting at a dead run. A good workout for me.

Speaking of bolting, we are doing our best to try to have a privacy fence installed around the perimeter of our yard. It would be such a relief to be able to be outside and play with BOTH kids not have to worry about Gus running out into the street or getting into any other forms of danger. He could then RUN without having to have his little hand in mine and burn off that excessive energy he carries around with him at all times.

While we are on the topic of excessive energy…I always talk about Gus’s energy level. People kind of brush it off in thinking “He’s a boy. They’re wild and energetic!” I’m like “No, you do NOT understand. I am talking holes in the wall, biting holes in my curtains, literally climbing the walls, like nothing I have ever seen before!” We can’t have lamps in our house because he will break them. I am talking hyperactivity like I have never seen. Anyway, one of his therapists and I were talking…You know how they have to be so very careful about what they say because they are not “doctors” and can’t diagnose things per se…Well, she finally admitted to me that she has worked with well over 100 kids on the spectrum and Gus is “most definitely the most active” she has ever worked with. She told me that she has worked with a lot of kids with a lot of energy, but apparently Gus takes the cake. Honestly, I feel vindicated! That being said, it has been recommended and we have decided that Gus should see a clinical psychologist again. Clinical psychologists diagnose and treat emotional, mental, and behavioral conditions. A clinical psychologist gave Gus his diagnosis of ASD/SPD. We have no idea if there is anything more to his behavior than his ASD/SPD, but we want to rule anything else out. His abundance of energy and “hyperactivity” along with his extreme sensory seeking tendencies make it very hard for him to focus and pay attention to learn. Some days are definitely better than others, but we really want to make sure we are doing everything we can and dealing with and treating everything we need to for him to live his best life. Getting him in to see the clinical psychologist is going to be another of the many “jump through hoops” processes we come across in this journey; ESPECIALLY, with Covid-19 going on. I have to get an appointment with his primary doctor just to get the referral to a clinical psychologist and then hope they are taking patients anytime in the near future. It’s all a big headache, but we will get it done.

ASD is a SPECTRUM. No two individuals with a diagnosis of ASD are the same. Gus seems to be quite the little mystery. His therapists have told me more than once that he makes them work and think and really flex their skills. He can exhibit a behavior for a few weeks and then all of a sudden it’s gone for a few weeks, only to reappear again. Every time we meet a new physician or therapist, I know they think I’m nuts because explaining Gus is not easy. There are no simple answers of “yes” and “no” to their questions.

Right now we are dealing with a lot of crying. Gus is “minimally” verbal. Therefore, he cannot tell me, or anyone else for that matter, why he is crying. He will sometimes cry for up to an hour at a time. It’s real tears. A sad cry. Could this be a medical issue? Is he in pain? Is this an attention seeking behavior? Is this an automatic behavior? Is he being denied access to something he wants but cannot portray? Can I just for a second express how amazingly hard it is to watch your baby cry and have no idea how to make it better? It’s terrible. I am as “in tune” with Gus as a person can be, but that doesn’t mean I can always figure it out, and to be blunt, it sucks. We have a functional analysis (FA) on the schedule for this next week. A functional analysis is a completely controlled environment in which you try to provoke the undesired behavior. So, in our case, the undesired behavior is crying. This will at least HOPEFULLY help us narrow down if this is behavior related or perhaps medical. Either way, we are doing the FA, as well as having him be seen by his primary physician AND a pediatrician that specializes more in children on the spectrum. Of course, this is all pending referral and Covid-19 hoorah-doorah.

In awesome news, Gus is learning! He knows some shapes and colors. Don’t get me wrong, he is always learning, but I am talking preschool-type learning. He understands so much more than people give him credit for. Just because he cannot say a word absolutely does not mean he does not know what a word means.

We get words out of him here and there; primarily, food and drink requests, although he generally has to be prompted to do so. He very much prefers physical communication. He would prefer to take you and show you. He would prefer to place your hand on what he wants or needs.

We are still working on potty training to a point with minimal success. A lot of this is on me. Ideally, I would like him to be potty trained by the time it’s time for school, but I also have other goals I find more important and appropriate that he is more ready for in the meantime. It will all come together and work out. 

We had a lot of fun this weekend celebrating America. I never know how Gus will react to fireworks, but this year he loved them. In typical Amanda fashion, I could be seen with a punk in my mouth like a cigarette trying to light it with a lighter with a jumping and wild Gus holding my other hand with Ada looking on fairly impatiently. Thankfully, as usual, I eventually recruited the help of my family. Grandpa, Grandma, Aunt Emily, and Uncle Anthony were to the rescue. Gus likes fireworks a little too much, and would take off after them. Dane eventually returned from work and put Gus on his shoulders while he lit off some Roman candles, and Gus thoroughly enjoyed that. We had minimal meltdowns and tears, and only a couple of physical altercations.

We also attended the local firework display our volunteer fire department puts on at the lake. That went much better than last year with just a few tears, scraped knees, and some physical altercations in the wagon. The wagon was a God send, as we could strap Gus in there to watch. Fireworks happen when it’s dark and late, and Gus does not get “tired”; he gets absolutely wound up until he passes out from exhaustion. He and the rest of us enjoyed the show, and both kids were asleep by the time we got back to town.

We also attended a family get-together and celebrated some postponed birthdays. On the short trip there, Gus somehow got a bloody nose that went unnoticed until we pulled up. Therefore, I spent several minutes in the 100 degree heat trying to get his face cleaned up and his nose to stop bleeding. He had smeared blood over his entire face and had blood on his shirt. Thankfully, Dane was present to help hold him. Have I mentioned the hyperactivity and that he HATES having his face touched? That was an adventure that very nearly had me in tears.

Gus turned FOUR in June and his sister turned FIVE in March. It’s hard to believe.

As always, I have a whole lot of other things I would love to put into words sometime, but for now this is it.

Enjoy SUMMER, and I will try to get back to blogging on a more regular basis. It’s good for me.

       -AMomsFaithUnbroken

Summertime Update

My Only Child(ren) – Part 2

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.

(See My Only Child(ren) – Part 1)

Neurodiverse Siblings

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…

Attention, Please!

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