Finding Anchors in the Storm

Our son is unique. He is challenging. He is tricky. He is stubborn. He is smart. He is amazing. He is fierce. He is beautisome. He sees the world in a whole different way.

The world he experiences is not the one that we experience.

I knew from the first ultrasound – that he was going to be a fighter. I told that ultrasound tech to not even think about saying the word stubborn in relation to this fetus. Because the first tech with our daughter said that, and she came out more stubborn than giving the cat who hates water…a bath. So I advised the tech to call him spirited. Yeah…I probably should have chosen wiser. Because spirited is what makes our son – our son.

Even on day 9 of a fever marathon – spirit is one thing that never goes missing.

Our son is more complex then a corn maze (Yeah I don’t have a comparison here. I clearly avoid complex things with a 10 ft extendable pole at all costs…clearly complex is not my life…..). So complex, that I don’t even know where to begin. Because each of his complex layers – will eventually require a lengthy blog post about each.

So I guess I could quickly (heh….) summarize our son. And his journey. Oh man his journey. His journey is going to shift the world on its axis. I can already feel mountains moving.

When he was young, I knew something was a little different from him. But didn’t know what. We had to put him in Early Intervention, because like his big sister – his speech was delayed. Unlike his sister who graduated out of EI and caught up speech wise when she was almost 4….he hasn’t yet. And we have just about hit 4 yrs.

For the first year from ages 2 to 3 – we had an in-home speech therapist come out every other week to help him, and coach us, on his speech. During every session, I brought up something odd or strange about him, a new quirk here, a new quirk there, and the therapist would always help me come up with ideas and suggestions. But at this time – he still just had a communication delay. It was also during this time that he tried on his first princess dress-up dress and a flicker in his eye emerged, and keeps burning bright.

Age 3-5 – he went to an EI PreK to continue helping him with speech and some socialization skills. It was during PreK, with the help and support of an AMAZING teacher (whom I have said an infinite amount of times by now – that I wish we could clone, or at the very least – pay her enough to be the kids’ teacher FOREVER), that what we felt in our gut about something else going on in our son’s brain – was not just in our heads. Or my head. I am pretty sure that at that point, I was convinced only I was seeing these quirks in our son.

At the time – my work wife (who I am convinced appeared in my life right when I needed her to) wanted to know more about her boyfriend’s son and his Autism. It was during that conversation, that for some reason I was compelled to do an internet search and some how I ended up on a 7 page questionnaire about Autism/Sensory Processing Disorder. I don’t even know what compelled me to do it – but I went line by line, putting a check mark next to each of Mr. Man’s quirks.

And then I tallied all the check marks up. And then I tallied it again. And I think I tallied it 3 or 4 more times before I digested the results. It probably said something along the lines of this: “Yup…your kiddo is quirky. Please see a specialist so they can enjoy his quirkiness too”. Okay, so it probably didn’t say that exactly…but you get the point.

I ruminated and let the results stew in my brain. No. Our son is perfect. There is nothing wrong with him. He is just our silly quirky little perfect boy.

But the next week (I am not sure why I remember how these events unfolded so well….but I remember them. Probably because the axis of our lives shifted majorly). The next week, I had to pick him up from PreK (I cannot remember the reason why but he went home on the bus 95% of PreK). And his AMAZING teacher came out and wanted to talk to me. “Okay”, I probably said. Or “Same here”….(ok, so my memory is not all that great).

But the result of that discussion, was that there was definitely something different, amazingly different, about him. Just not sure what. And I probably said “I knew it!” OR “I agree” OR “Thank goodness its not just in my head”. We discussed the next steps. And off I went with a tiny pep in my step.

Called his pedi. Who has also been aware of his quirks that we have had to deal with over the years. He said no problem, and he agreed, and got us a referral for an OT. Got on the wait list. Had the initial eval. Results were: Yup, your handsome son is definitely quirky. Can he come teach us? And when?. Or maybe she said “let’s schedule some sessions bc he definitely has SPD”.

This whole time. From when I placed the first checkmark, I have been the only one doing the research, making phone calls, reading blogs, scheduling doctor appointments, handling our son’s quirks. See – the super husband had a horrific manager and worked a shitty job at the time and we rarely saw him. It wasn’t his fault. He would be home more if he could. He loves his family. But his manager – was a freaking joke.

Anyways, moving on. I spent endless nights, countless hours at work not doing work, but of researching into what is going on with my son, what is wrong with him, how can I fix him. Whatever is wrong with him can be cured right? He will go to therapy for a couple months and that will be it…right?!

SPD I thought to myself. I instantly knew what that meant. Sensory Processing Disorder. It is not curable. There is no simple fix. This is our son. His life will always be hard work. He will always have to work hard at understanding a world that he doesn’t experience the same way as you or I. He will always have to try to fit in to a mold that he was never born to fit in. He is our round peg in our square world.

And I didn’t want my son any other way. My steps get peppier. We finally have an answer, or a diagnosis rather. Now I begin to research everything we can do to help him. I make list upon endless list of his specific quirks and what senses are being activated, turned off, helped, or hindered. The rooms in my dreams were turning in to therapy dens. But in reality – we are too poor to afford any of the real therapy equipment he needs. So I turn to pinterest and figure out how to make the world he already lives in – adjust to the world he experiences.

Our lives change. Our perspectives change. Our routines and behaviors and parenting techniques change. Sometimes us parents have a difficult time agreeing on what would work or wouldn’t work. We just want what is best for him. We always come to the same conclusion – he is an extraordinary boy that just happens to have all of these super powers that make him super extraordinary. So how can we keep it that way?

But then comes kindergarten. Where we are now. Even up till the day before he started – My stomach did knots for months, years, knowing that this moment was coming. I had NO idea, not a single clue how he may react. It could have gone either way – either he would want to run off, constantly meltdown, and be angry and hurt others OR he would love it and it would be a great fit.

The first half of the year – the latter was true. So far – the former is the case. While his communication delay is improving alot, and he is learning to use his words and is able to describe to us his feelings. And even though we are just now, finally learning just how much he experiences the world in analytical observations (which is truly a blessing because we finally can fine tune how we can interact with him, give him consequences, etc) – his behaviors are escalating to a level we have never seen. He is running off at school. Hurting people because he doesn’t have the social skills that his peers have, and while he wants to socialize so bad, and is an empath – he doesn’t know how, and it frustrates him. He is hurting people. And he, deep down, is hurting. We are just missing the way he is communicating how he is hurting. We are misunderstanding him showing us how we can help him heal.

He is hurting because he is a round peg in this square world. He does not experience this world like the rest of us. But he is also beautisome. Which is a deeper layer than anyone can imagine. It is located so deep, that no one his age should ever have to think about or obsess over. It is a layer that is accessible only to him. Neither I nor his father, nor anyone else, are able to touch it (even though we have tried….guiltily – many, many times).

He was born a boy. He is a boy. And he may always be a boy. But he loves his pretties. He loves anything princesses. He loves superhero girl (Supergirl, duh). He draws himself as a girl. He has learned from his big sister how to sorta kinda wear make-up. He picks out his own nail polish. He knows exactly what looks good, like pink cowboy boots, and there is absolutely no dissuading him. He plays mom or any other feminine role his big sister will give him. He loves his baby Percy, and rarely a day goes by that baby Percy does not get “fed”. He loves Elsa so much – he named his kitty Princess (yeah, not Queen – Let it go!) Elsa. He spins and twirls better than most I know.

I could go on. But you get the point. The more words and communication skills and knowledge he gets, the more open he is becoming with us. Now, let me explain something to you all. I have been his NUMBER ONE fierce advocate and supporter. I have ALWAYS taken his lead. I have gotten the therapies he needs, and take him to all his specialist appointments. I have done the research. I have shared the research with the husband. I know this boy. We are connected by a bond that at times even I think is a little too tight.

And I know with his SPD and undiagnosed autism (yeah…thats new, well not really, but different post), he does not make the best or even right decisions. He lacks awareness of safety. I get that. He hates coats when its 20 degrees out because he feels temperature differently.

But he also feels the world differently. He experiences the world differently. I don’t let him get away with poor decisions. So why would I follow his lead on what we call his gender creativity journey. What my family deems is just a phase, has now entered 3.5 yrs.

As I hang my head in guilt, shame, regret, remorse, you name it, I feel it – I don’t know how many times I have dissuaded him from feminine object 1, 2, or 3. I don’t know how many times I have bagged up his feminine clothes and hidden them. I don’t know how many times I have had to watch from afar as he had an SPD meltdown after not being able to wear his feminine clothing (different from your idea of a stereotypical “normal” meltdown/temper tantrum).

I don’t know how many times I have felt judged while out in public; how many times I wanted to collapse in a pile of tears because I don’t want this for my son. That this cannot and will not be his future. Acceptance is slow. There is so much hatred out there. People don’t believe a child is able to, or can, or should – be able to make these choices. Kids like our son don’t know better. Their brains are definitely nowhere close to fully formed. I don’t know how many times I have been called a child abuser, or told I was pushing this on him, and causing him to want this, or been deemed a bad parent because I clearly give in to every whim of his. I must coddle him and would definitely let him get away with murder (for the record, I would be the one turning his butt in if he did murder someone and it wasn’t self-defense).

But he is hurting. His anxiety is thru the roof. His autistic meltdowns are out of control. His shame is breaking my heart. Kids know who they are. They are not aware of all the political crap out there. Or the different viewpoints of the different sides. They learn what they learn – from their parents. And others at school.

But let me tell you this – LGBTQ topics – while important to us, were not a part of our lives. We do not have LGBTQ friends or family (that we know of at least). We are not in that community. So it would never have been on any one’s mind to teach him that lifestyle. Oh…and for those that say well yeah – he has a big sister. Of course he looks up to her. Of course he wants to be like her – go give that line to someone else please. I am tired of hearing it. If that were the case – if his big sister started emulating him – is it because she has a little or big brother she looks up to and admires? No…they would probably say she’s a tomboy and let it go (heh, see what I did there?).

I do admit that I am highly curious to know if he would be the same person he is now, if he didn’t have a big sister, but rather any other combination of siblings, or even the only child. Would he still be my fierce beautisome boy if it was just him? I am not gonna lie. I want to know what he would be like.

Anyways, moving on. I have been his #1 follower. I have never, not once, chosen not to support him. We live in what we call The Compound. 3 houses, connected, on a little piece of property. We live with my mom, aunt, and Grandpa. There are 4 generations on this land. And all 4 generations have different view points of his gender creativity. We are all on a different journey alongside this beautisome boy of ours. Some of us are struggling to get on the track. And some of us are ahead of him, cheering him on.

But one thing is for sure as of late. His journey is speeding along faster than even I can keep in front of him. He is becoming his own driver. He knows the destination where he will feel the safest at. And we are all going to have to arrive there at some point, or lose the chance of watching this boy change the world.

Our experience is not his. And his is not ours. His experience is so much more colorful and alive. It is at a deeper awareness. His experience, is one that we all need to see. I have no idea where it is going. Or what routes we are going to take alongside him. It is too dark down there for us outsiders. But as long as we can keep him in view – he will light the way for us. I have no idea if everyone will arrive their safely. I sure hope so. And in once piece – that would be nice.

But I do know, that maybe he is making the wrong choices, because we are making the wrong choices. Who he sees himself as, is being stifled. He already sees the world in a different way. One that we struggle with every day. So therefore he struggles.

Maybe if we start to catch up to him – maybe he will start to slow down to meet us. Where the right choices happen.

His experience, is his anchor in his stormy life.

P.S. this is our life. Keep your judgments to yourself. If you do not like how we parent…too bad, your not raising these kids. We are. We have done hours upon hours of research and have talked to numerous specialists. So, please, go somewhere else with your toxicity. Thank you.