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rabon629 Autism

Autism | Our Diagnosis

Rivers is autistic.  

Thats really hard to type, harder than I expected.  I’ve known on some level for years, I can back date the red flags to before he was crawling (what’s thats saying about hindsight?).  By the time we had our medical evaluation it was simply a formality.  I did not shed a tear, I was not emotional, it was simply something that I checked off my to do list that day.

Acceptance though, that’s a different story. 

Let me back track a little bit. There was a time I thought I couldn’t have kids.  And not just because we tried without success (we did); but I was told so, by an expert.  But he was wrong.  And every day I am so thankful he was. We miraculously were able to have children without fertility treatments.  I may share more on that journey later.  But I feel like it’s important to understand the ache of an empty womb and the desperation I felt to become a mother. 

All the flags were there.  Speech delays, motor delays, excessive stimming (I’ll elaborate on this later) and sensory issues.  But navigating the world of parenting for the first time, I had no baseline for what is considered “normal”.  By the way, I hate the world normal, and you will likely never hear me say it again.  But seems fitting in this context. Around 2 and a half I sought out an evaluation.  The primary concern was speech, but he was a hand flapper and those two things together were basically the only signs needed to diagnose him with autism.  Only, they didn’t. 

ECI was an amazing experience for us, not everyone can say that.  But we are the lucky ones, it was perfect. But at 3, we aged out and moved to the school district.  Much to my surprise, he qualified for PPCD (preschool programs for children with disabilities).  His speech was doing so well, and he really had few other concerns developmentally so I was shocked.  Not to mention, he didn’t have autism right? 

I opted out of PPCD initially.  Probably my deepest regret (so far) as a mother. He was still napping at the time, and they only had an afternoon spot available.  And I foolishly thought a “regular” preschool would be better for him.  He would be around “normal” children and somehow absorb their normal superpowers.  I bet you can guess how well that worked.  But needless to say, we found ourselves in PPCD, which was transformative.

We continued in private therapy as well. At this time the therapist expressed their concerns with autism. I dismissed their assessment as we had been evaluated twice (neither time medically) and neither gave us that diagnosis.  I mean what do therapist, who specialize in neurodiverse children, know about autism anyway right? 

We continued down this blissfully ignorant path for several months. But the signs were there, I noticed. And if I am being honest, Rivers did not have many behaviors I considered autistic. I have since learned that there is no “autistic” behavior. It’s a spectrum. Every child is unique just like every human is unique. And yes there are many commonalities, but autism presents itself in different ways for different kids.

Our official diagnosis came late in 2018; he was 6. It was an 18 month waitlist from the time I applied to the Child Study Center to our actual appointment. I could have gone elsewhere, there are plenty of pediatricians that will diagnose autism with a considerably shorter wait. But I needed that time. Time I could live in denial, or at the very least, hope. Time that I could process what I knew was inevitable. Time to get comfortable talking about autism. I still need time.

But here is the thing. I don’t want you to feel sorry for me, or for him. He is incredible. And he is so much more than his diagnosis. Autism comes with struggles; it’s a journey and I won’t pretend it’s easy. It is not.

But most days are wonderful. I have been given this gift, an extraordinary child. He is the kindest person I have ever met; he doesn’t have a mean bone in his body. He willingly shares his favorite toys, he finds things his bother would like and gives it to him. He is amazing. If only every human was this kind, we would live in a beautiful world. Most boys his ages play baseball and video games. Rivers’ favorite thing to do is use painters tape to make handles for random objects and try to get doors to close “by themself”. His favorite toy is a safe. He is completely unaware that these are things most people do not find enjoyable or fascinating. His world is magical and interesting, a place where painters tape sparks joy. If only life were that simple for the rest of us, am I right?

So this is a little bit about our story. It’s a little sappy, and it’s not particularly eloquent, but it’s ours. Thanks for reading.

rabon629 Uncategorized

Empathy

I have been noticeably absent from my blog. Not because I don’t have anything to say, but mostly because I am doing my very best to survive summer. I know you feel me on this. And to be honest, I am finding this level of vulnerability more difficult than when I started this blog. These are my deepest thoughts, ones that I can’t even bring myself to vocalize. So I share them here, from the safety and semi anonymity of my keyboard; to cleanse my soul and maybe, hopefully, help some people that might be struggling along the way.

Empathy.

noun

the psychological identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another.

You may not know this about me, but I am a deeply empathetic person. I feel deep emotions, I am very easily able to feel the pain of others, even when it is completely unrelated to me. I have always been this way and I think it is why I am passionate about social and humanitarian issues. I don’t always know how to process these intense feelings and I tend to shield myself from the stories in the news. I actively avoid articles and social media posts about it because I simply cannot handle them. And then I feel intense guilt because by avoiding these issues, I am contributing to them. It’s a really difficult headspace to possess.

I don’t always think empathy is a good thing, I feel empathy for people I shouldn’t. Criminals. Mothers that murder their children, pedophiles, drug addicts, etc. Now, before you run off and think I am a crazy person (I already know I am), I do NOT excuse criminal activity. I don’t feel sorry they will suffer the consequences of their crimes, and I absolutely mourn for the victim the most. But what happens to a person, and what goes on in their mind, that drives them to this place. Do they feel guilt, remorse, shame? I just know something was broken along the way, somebody failed them, the system failed them, something happened to create this tragedy.

So now that you think I am a total nut job, let me put this in more relatable terms. Whenever someone is experience conflict, I am almost always the one to play devils advocate. Some kid bit your kid at school? I immediately wonder what might have caused that child to bite. Sure, I am sorry your child was bit, I am sure it hurt. But I imagine the child that bit was so overwhelmed and unable to communicate it reverted to primal instincts and your child was just caught in the crossfire. I don’t assume negative behaviors, even the most intense ones, are because the child is inherently bad, or it’s a result of poor parenting, but just unable to process and deal with a situation. Maybe its raising a special needs child that has given me this perspective, but I don’t think so. I think maybe I was born this way to practice, because I was always meant to raise a special needs child.

So what do my emotional complexities have to do with autism? There is a theory that autistic people do not have the ability to empathize. Their social deficits make it difficult for them to relate on that deep of a level. This has not been my experience with Rivers. He does seem to show empathy, though not quite as often as I would hope to see.

Several months ago, we were having dinner at my Grandmother’s house, as we do every Wednesday. Rivers was sitting in one of the large recliners, specifically the one my grandfather spent most of his days in. He had the chair reclined with the feet up, with Ryder playing at his feet. He decided to get up, and while returning the chair to the upright position, Ryder’s arm got suck in the leg rest. Thankfully, besides hurting, no injuries were had. But Rivers could not seem to process what had happened. Thankfully at this time, I knew more about what I was dealing with and was able to talk to him about it. I told him he needed to apologize to brother because something he did hurt him. I explained that he was not in trouble, it was an accident. But that when you hurt someone, even if you didn’t mean to, its important to apologize. Telling this story it sounds simple. But the result was Rivers standing in the corner for about 10-15 minutes while I explained the situation. I could tell he had a very difficult time processing how he could hurt someone when he didn’t mean to. He felt bad, or else he would not have retreated in to the corner. This was a very hard situation for me to navigate. Im still thinking about how I handled it in great detail all these months later.

I stumbled across some very interesting resources for autism. The first is Agony Autie on Facebook. She is an adult with autism and an advocate for the autistic community in the UK. She does a fantastic job explaining what the world is like for her, and recently admitted is a watered down version of what its really like. But for me, I appreciate the insight and it gives me a great perspective as a parent and what might be important.

Recently she shared an article written by Dr Damion Milton, The Double Empathy Problem. It’s a very short read, and I found the insight extremely interesting, but I’ll paraphrase. In short, its not an empathy problem on the lack on autistics, but rather a misunderstanding between the way we each see the world. As a for example, Rivers may not understand why someone would be upset if he accidentally hurt them. Similarly, I don’t understand why his Legos need to be arranged in a particular order. I am sure I am giving you the remedial version of this theory, so take that into account.

But this theory is rather radical in nature, and it 100% changed my perspective. All of the therapy available is designed to help the autistic community fit into the world of the neurotypical. But there is little to no options for helping those of us without autism to fit into their world. What if, we saw autism as more of a difference rather than a disability? What if we saw it more like someone having a different eye color or speaking a different language?

As I dive further into this world of autism, I am learning so much. What started as a devastating diagnosis, has completely morphed into something else. I have started following people living with autism, particularly adults. Quite frankly, I don’t care what people living without autism think is the best, I care the most about how people living with it feel. Is everything we are doing just for our own convenience? Is it really what the person living with autism needs?

I will say, thats a heavy load to bear. I do not think anything we have done with Rivers thus far has been to his detriment. Speech has been incredible in not only his expressive language skills but receptive skills and comprehension. We obviously need to be able to communicate and understand each other. But I have a lot of guilt making him do all the work. At times, it truly is like we are using the same words, but speaking different languages.

And I am not saying the therapy is bad, or wrong. And I am definitely not judging if you have decided to pursue tons of therapy or none at all. I think this can be a very tricky road to navigate as a parent, especially if you have no frame of reference. We can only do what we think is best given the information we have available.

And this was a very wordy post without a resolution. As Rivers’ mom, my objective is to keep him safe and happy. And I want him to be the best version of himself, even if I don’t know what that means or understand it. I want him to be uniquely him (I want that for BOTH of my children), to embrace what makes him unique. To never apologize for being different or expressing himself in a different way. To be creative, and insightful. He is all of these things, and everyday I learn how to let him be a little more “himself.” It’s really hard guys, to let go of what other people think of his behaviors. To let go of how I *think* he should be.

While there are a lot of things about this parenting journey that are not how I imagined. There are lots of disappointments, like Christmas being more about stress than magic. Or not being able to attend 4th of July festivals because the noise is too much. But I am so beyond grateful to Rivers. While it’s my job to teach him and mold him, he has reciprocated 10 fold. He has opened the door to a world I never knew much about, and I had so many preconceived notions shattered because of this incredible boy. He is my absolute perfect match.

Til next time,

Lindsey

rabon629 Autism

The Elephant in the Science Lab

Recently one of my favorite TV shows came to an end. And no, I am not talking about Game of Thrones, my therapist says I don’t have to talk about that until I am ready.

I absolutely loved The Big Bang Theory. There are very few television shows, at least on network TV that are really clever and entertaining. It was a typical cheesy sitcom, but just the right amount of reality to keep me invested. I loved the nerdy aspect, the heroes of the story not fitting the typical mold of what you find in entertainment. And of course the love story of the beautiful girl falling for the nerd. I mean it’s basically the story of my marriage. Bazinga.

The ending to the show was predictably perfect. By far it was my favorite series finale this year. But in the last couple years, something about the show really came to bother me.

Sheldon.

Jim Parsons really played the role perfectly, I loved his portrayal of the character, he was so incredible it might be to his detremint.

But, let’s call a spade a spade; Sheldon Cooper is autistic.

“I can justify his diagnosis with this asterisk because it changes your perception of it.”

They never specifically addressed this in the show, but gave him all the characteristics of high function Autism, what used to be diagnosed Aspergers. The extreme structure, lack of social skills and inability to cope with change. He has his tribe that would tolerate his “quirks” though they would tease him about it or talk about him behind his back. Imagine if his “quirks” were down syndrome, or paralysis or even something more common like depression. Would the jokes and the teasing be met with the same laughter.

It is absolutely never ok to make fun or judge someone for something they cannot change. I believe that to my core, from the color of someone’s skin, to their abilities, down to the things you cannot see like mental illness, or in our case, Autism.

Now listen, I am not an overly sensitive person. I don’t mind crude humor that mocks. I am a lover of South Park and Dave Chappelle and I can laugh at exaggerated, real life humor. But I will never laugh at a sexual assault joke. I am not offended by The Big Bang Theory, I loved the show until the end. I won’t write and angry letter, or share my discontent with the shows producers. It was still entertaining, and I am not angry, thats not what this post is about.

“It’s not about going out of my way to tell everyone, it’s about allowing Rivers to truly be free, and not chained to his diagnosis.”

To me, this is just a representation of how the world views autistics. Most of us aren’t quite sure what to think or how to act. As if they are some sort of aliens that we know nothing about. And I’ll be honest here and say, even I feel this way sometimes (ok a lot of the time). But I wonder why they never called Sheldon autistic. Was it because he would be a less like-able character? Would consumers not watch a show that was centered around an adult with special needs? Are we not there yet?

Is autism so taboo that we can’t address it in a public setting? On a platform that has the opportunity to educate and enlighten a mass amount of people. Why is it ok that a person has the qualities of an autistic person, but we dare not call them that?

I think a lot of us probably know a Sheldon. Maybe he/she doesn’t have the mind of a genius, but you can identify similar characteristics. We know more now than we used to; autism used to be only diagnosed for the severe. In fact they used to have a completely different diagnosis for level 1, or higher functioning people called Aspergers. I feel like a lot of moms of higher functioning kids still prefer to call it Aspergers, at least at first. It is more comfortable to say, as if it somehow changes the diagnosis. I am not exempt from this feeling; I can justify his diagnosis with this asterisk because it changes your perception of it.

But I am working on it. It took me a long time to write this post, almost 2 weeks. I kept coming back to it, because it felt like such a rant. I don’t want this blog to be a place where I complain and play the victim. I want to share the real and unfiltered, and I want to share just a little bit of insight into my world. I am still learning. Its easy for me to type this out, but its so much harder to put into practice. I shared our story just a couple months ago, but I still find it hard to say to people that I KNOW have read it. I am trying to be strong and unashamed. It’s not about going out of my way to tell everyone, it’s about allowing Rivers to truly be free, and not chained to his diagnosis.

rabon629 Holidays

Word to your Mother

I thought I was going to write a post about how Mother’s Day is a bull$h!t holiday. I mean, don’t get me wrong, I am appreciative of the celebration. I welcome the opportunity to be spoiled and pampered. The chance to sleep in and not cook or clean for an entire day. I LOVE that part. It’s more the concept that the daily 5:30 am wake up, being a personal chauffeur, packing lunches, going to therapy, breaking up sibling fights, cooking, cleaning, laundry and the endless task of motherhood are to be celebrated on a single day with some flowers and macaroni art. It’s like telling someone how much you love them on Valentines Day, or thanking my child’s teacher on one day out of they year when they spend more waking hours with my children than I do. But I guess it’s better than nothing.

Photo by Jeanine Phelps Photography

But rather than sound ungrateful, I decided I would reflect on motherhood a bit. The other day I wore my offensive shirt, you know, the one I wrote about here. My sweet friend came over for a playdate and wanted to buy one for herself to show her support. But of course, its not April anymore so no need to be aware of autism amiright? So I was browsing Etsy, knowing that I could find something similar in design if not identical, and something weird happened. I saw so many inspiring and beautiful words ready for me to wear, and I started to tear up. It feels ridiculous typing it, that t-shirts were bringing on a flood of emotions, but I think that is all part of this journey. Most days my outlook is positive. I don’t expect or want sympathy. I just live my life in my blissful way. But sometimes, this whole thing just sucks.

Photo by Jeanine Phelps Photography

7 years ago, I celebrated my first mother’s day. Rivers wasn’t born yet, but he was growing inside only a few short months away from his debut. We had a lot of difficulty conceiving, including a miscarriage, so it was definitely a Mothers’ Day to celebrate. But like any first time mom, I had no idea what was coming. But unlike most other moms, I was hit with the additional challenge of autism. It’s like God or the universe was playing a cosmic joke, saying “how bad do you really want a child”.

Motherhood is not at all what I expected. I think 98% of mothers out there agree. And to the other 2%, well I have some choice words for you. Mothering is hard, people try and tell you this, but it’s not something that can be explained. Many people may come and go in your life, but your mother is irreplaceable. And that responsibility is intense. The burden of raising children is the heaviest I have ever felt. And I feel the added pressure to do right by Rivers; and I don’t even know what that means.

Photo by Jeanine Phelps Photography

I sat with a friend today, her son was recently diagnosed. And I asked her, if she ever felt like I do, like she was robbing her child of his childhood. The therapy and all the extra work we put in, the extra reading time and the pressure to make sure he is trying his hardest. When does he get to just be a 6 year old? Is this the right path? Everyone tells you how key early intervention is, and I agree, everything we have done through this point has made our lives better. We have seen noticeable changes and progress and I know we would be struggling so much more if we had not done these things. I believe it to my core, or I would not have made those decisions.

But the guilt. I feel guilty he can’t just exist the way most of us do. That he can’t sit the way that’s comfortable for him because its bad for his core. Or that we have to practice walking up and down stairs because he needs to be able to step on one step than another, rather than stepping with both feet on the same step. And that somehow, if we don’t do these things, he might not hold his pencil correctly. What’s the point? If you have never experience occupational therapy this all might sound crazy to you, and it is. And I am completely oversimplifying the work they do. But my exaggerated point being, I have to train him how to exist, because he isn’t doing it right.

I honestly don’t know how women survive this. But somehow, we do or we will. We pour our love into our children, we make sacrifices and tough decisions all in the name of our children. I don’t know if the decisions I make are right, and thats what makes this so hard. I won’t know if it worked until it’s too late to correct it. But what I do know, is that I make most choices with the best of intentions, with their best interest in mind. I only hope that when all is said and done, that is what my children remember.

Thank God for my mother. I know after experiencing my own struggles in motherhood (and this is basically the beginning), I appreciate my own mother so much more. She is my rock, and knows exactly how to comfort me when I need it. She knows when to offer advice and when to shut up. She never undermines me as a mother, and never suggests I do things differently. She never makes me feel like I’m not doing this right.

So to all the women in the trenches and to all the women that support them, Happy Mother’s Day.

rabon629 Autism

Inspired by Autism

I care way too much about what people think of me. The idea that someone might not like me keeps me up at night; and unfortunately thats not an exaggeration. I don’t want to be this person. I want to be fearlessly me, the flaws and imperfections, the goofy personality, the person that can be incredibly intelligent and eloquent and but still (often) says really stupid things. I should be unapologetically me. It feels weird to say that I am inspired by autism because I think most people think of it as a tragedy. I am not one of those people, but that’s because I am living in this world. If you asked me 7 years ago, my tune was certainly different.

The thing about Autism is that social intricacies seem to be lacking. They don’t necessarily pick up on societal norms, the little rules most of us follow without even thinking about it.

I was dropping Rivers off at school this morning. Almost every day he runs through the front doors. We aren’t late, he just likes to run I guess. I can’t really tell you why. But he is always the only kid running, everyone else just leisurely strolling inside. He is completely unaware that no one else is running. He doesn’t seem to care that its completely unnecessary to run. He likes it, and he does it. Sometimes we ride his bike to school. He still has training wheels, and might be the only kid in school that does. And he doesn’t care! One of his classmates even commented on it, and he still was completely unphased. Something that might embarrass me, because I am not doing what everyone else is, doesn’t impact his life at all.

I just got back from St Lois for a photography convention. It’s such an intense 2 day conference with classes all day, photoshoots all night, and a party at all times. I focus my days on business classes and some photography education (this year I focused on off camera light and video). But the last night, there was great music and maybe a few hard ciders. I wanted to dance. Its important to know I am not a good dancer. Alcohol makes me think I am, but I have seen the footage, I am not. But I decided not to care. I knew maybe 5 people in the room, the music was great and I wanted to have a good time. People teased me (in a light hearted, friendly way) and I legitimately did not care. Now, all of those people with video footage know I will send the KBG after them if it ever sees the light of day. But I had a blast! I looked ridiculous, but for once in my adult life, I didn’t wonder what other people thought of me. It isn’t important to me if they think I am ridiculous. In fact, I bet lots of people wish they had the courage to join me.

Its funny, because I think about how much fun I had, and how much I didn’t care. But I am still reeling in my random act of confidence even a week later wondering if my sweet white girl dance moves will make the promo video for next years conference. And what if next year, before any hard ciders, someone remembers me. And what if they form an opinion about me before they ever even talk to me. What do I do with myself?

I know that Rivers will eventually figure out that he is different. That maybe people will form an opinion about him if he runs into school when no one else does. I know that it’s not only his autism that makes him unaware of social conventions but his age as well. I dread the day that he come home crying because someone made fun of him. I know it’s coming, and probably very soon. I don’t remember when I starting caring about other people’s opinions of me, I assume somewhere around middle school when girls really start to suck. But I hope, that just maybe this can be an upside to autism. To be exactly who he wants to be without fear of judgment.

rabon629 Holidays

Holidays are Not what I imagined

We’re coming off Easter weekend and a week where I was traveling. I am literally writing this about 2 hours after landing from my photography convention. In the before time, where I was blissfully childless, I imagined holidays as a magical time. I imagined a Christmas morning filled with excitement, a sleepless eve where my children were giggling all night in their rooms desperately listening for hooves on the roof. In short, I imagined the excitement I felt as a child in my own hypothetical children.

Then, I had children. Let me just tell you, that being a parent around magical holidays is HARD. I think this is true for parents of atypical and neurotypical children. Creating magic is impossible, unless you are a magician. I am not. So instead, its hours searching stores, browsing amazon, hiding the gifts meant to be from the enchanted holiday figure. It’s exhausting.

I am just going to come out and say this, I have always struggled celebrating holidays with Rivers. He doesn’t buy into the magic, he never really felt the excitement in the unknown. In fact, this last Christmas was the first time I felt like he actually understood that Santa brings him presents on Christmas eve. And even then, he wasn’t this mysterious man living in the snow to fly over homes and sneak down their chimneys. He was just simply the reason that presents were on the fireplace on Christmas morning. He just didn’t seem to get it, it was just factual because he believes what I told him.

I felt a tremendous amount of guilt about this. He believes what I told him, and I feel an obligation to be honest with him. And I don’t say this as a mother of an ordinary child, where there is a bit of guilt knowing that when the truth comes out they will know you lied to them. This is guilt because of how his brain works, and how he processes information. He is incredibly literal, if you watch The Big Bang Theory, think Sheldon Cooper. How he doesn’t understand sarcasm, that is Rivers. And because he is 6, he doesn’t have the front lobe capacity to process the logistical impossibility of these things.

So not only am I a guilt ridden liar, I struggle to find what sorts of things to buy Rivers. He’s never been into toys, but somehow we have also never had a shortage of them. Last Christmas he asked for a watch and 3 door closers. Yes, you read that right. A door closer, a device that you attach to your door that will automatically close them behind you. You can find them for about $12 at home depot. We currently have 5 installed in our home, with 1 disabled after my husband had a specific frustrating incident with one of the doors. So what in the world do you buy a kid who doesn’t like toys, for a holiday? If you find out let me know. This year, his Easter basket was stuffed with some items I would consider less than fun.

Rivers is obsessed with numbers, and I mean that literally and not in the generic more playful meaning like “OMG he is totally obsessed with numbers”. I mean he is hyperfocused on them. He taught himself basic math before kindergarten, tries to count to 1000, you get the idea. At the time I bought these number disks he was assigning every good thing someone in our family did a point value. So cooking dinner was worth 10,000 points some nights and other maybe 5 points. When I found these disks and the coins in the dollar spot at Target I knew it was a win. You can also find them at Learning Resources online. The tape is because he creates with it. Up until this point we had only used blue painters tape and some white gaffers tape I used in my photography business. So when I found this colorful tape, I thought we might expand his creativity.

All in all, we did ok. I don’t consider Easter in the same realm as Christmas, so the excitement level was exponentially low, as expected, but still fun. We went to lunch at a park with my family where we hid eggs and ate fried chicken. But as I stumble through this journey, I am learning to manage my expectations around these holidays. I am mourning the loss of the holidays I expected. I spend them confused on what to give, and how to celebrate. How do I perpetuate the magic for my younger, neurotypical child, while still giving and managing the needs of my oldest? Is it even possible? I think, that its time for me to learn to be ok with what we have and what we are, instead of hanging on to the idea of what we are not. I wish it were as easy to do as it is to say.

rabon629 Uncategorized

the ARD | The 7th Circle of Hell

Today was my annual ARD meeting for Rivers. If you haven’t had a pleasure of attending an ARD meeting as a parent, let me just outline the experience. I compare it to someone ripping your toenails off with pliers or taking a shiv to the eye. I would rather potty train a thousand toddlers than sit through another ARD meeting. But sadly I am out of toddlers and Rivers is only in Kindergarten so I have at least 12 more of these to go.

So if you don’t know what an ARD is, it’s where a team of people sit down with you and outline goals for your child. In their defense, I am grateful this is even an option and they don’t just stick him in a self contained classroom like they would have in the 50s. The goals range from social, to academic, to behavioral. I really am grateful for the teachers and support staff that want Rivers to succeed and can help set realistic goals to get him there. It’s actually a great system. And I know I have teacher friends who have sat in on these and I know its not fun for them either.

But as a parent, it’s not amazing. Its a room full experts telling me all about my child’s shortcomings. Its a 30 minute meeting highlighting all of these area where most children can function, but mine cannot. And it feels like their sole purpose is to offer the bare minimum. They are caught between wanting (and being legally required) to offer services and manage the cost of these services. I get it, its not an easy place to be. On average a special ed student costs nearly $10,000 more than a general ed student. That money has to come from somewhere, and it come from my pocket. And I don’t know about you, but I have little desire to pay MORE in taxes.

And honestly I don’t really know what goes on into offering services. I am making assumptions that they don’t freely offer more because of this. But I can’t say I have proof of that. I think Rivers needs more time with an aid. He has trouble focusing and isn’t getting his work done when the aid isn’t there. To me, that is a great reason to have more time with an aid. But there is a bureaucratic process to get that, including requiring evidence, which of course I rely on the school to provide. So see where its feels like I am chasing my tail?

The problem is that I love these people. They are kind, and helpful; they spend all day with my son and I know they want him to succeed. But I think the shackles of budgets were removed, they would agree with me. I can’t be sure of that of course, but I suspect it’s the case.

The struggle with patenting is that we highlight our own failures. I am sure we put more emphasis on them, then our children do. I hope, they don’t remember every mistake I make, I certainly don’t remember everything my parents did wrong. But with Rivers, the stakes are higher. Today, I feel like I failed him. Maybe that extra aid time would make the difference between performing at or above his grade and falling behind. Maybe it would allow him to stay in the classroom with his peers instead of heading to the Stars room in isolation. Or maybe he doesn’t need that time. He will still get an aid during the day, so it’s not a total loss. But it still feels like I lost this battle.

rabon629 Uncategorized

Sleep is a Luxury

Its 7:30 am, I have been awake for 2 hours. When I was pregnant my biggest parent fear was the loss of sleep. Not child birth, not keeping another tiny and fragile human alive. It was how I was going to do all those things without any sleep.

In the before time, I was child free and well rested. I would head to bead around 10:00pm and wake up for work around 7:00am. The weekends started around 9am. I have never been a night owl, so early to bed was fine with me. Most Sundays included a good 2 hour nap on the couch while watching football or The Walking Dead marathons. It was a glorious time, and I truly did not appreciate what I had until it was gone.

They say sleep is essential. It’s the antidote to aging, weigh gain, anxiety, inflammation, and just you over all well being. If you see my around town, overweight, bloated, frazzled and wrinkled I have an excuse. I can’t sleep. This doesn’t seem to be a Dad problem, at least not in my household. Sure we both have rough nights, but on average I would say I function on about 2 hours less sleep per night than my husband. It’s not his fault, but I would be lying if I said I didn’t resent this a little bit.

But my lack of sleep isn’t all my fault. Sure there are sleepless nights filled with worry but for the most part, this is Rivers’ fault. He used to be a great sleeper. He napped until he was 4.5, he slept 12 hours at night, it was wonderful. I don’t know what changed, but something did. It is well known in the autism community that sleep is something our kids cannot seem to manage. I don’t know why, someone who is an expert in autism and spectrum disorders probably has a scientific explanation for this. But to be frank, it doesn’t really matter why.

It’s not uncommon for Rivers to be up at 5 or 5:30. Bedtime is 7:30, but I guarantee you he doesn’t fall asleep until 8/8:30. So we are looking at roughly 9 hours of sleep for him per night, he should be getting 11. Twice this week he was up at 1:30 am and came downstairs to start his day. Obviously I did what I could and got him back into his bed, but how does one force another to actually fall into a slumber? If you have the secret, please share.

I am not against sleep aids, like melatonin, and will use them on occasion. But falling asleep isn’t really the problem so melatonin is basically useless. And as far as I know, sleep through the night isn’t the problem, so things like magnesium doesn’t really make sense either. He simply doesn’t need to function on as much sleep as he needs. It’s infuriating and exhausting. And once the kids are awake, I am awake; even if I am not physically out of bed. I assume it’s this way for all mothers, a biological response.

I really don’t have a point to this post except to vent. I am tired. I wonder if I will ever NOT be tired. Its hard to see my way out of the place of pure exhaustion. Maybe it will come, or maybe it’s time to accept that my wrinkled face and over caffeinated body is the new normal. Only time will tell. I was searching for a hilarious quote about tired moms (there are so many). But I stumbled across this gem. I truly believe that things are put in our paths for a reason, and I needed to read this today.

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When should you seek a diagnosis?

There was a time, in the very beginning of this journey, where I didn’t see the value in a diagnosis. I was adamant that no matter what, a diagnosis would not change who he is or our treatment plan. Both of those things are true. We were already doing PPCD, OT and speech, a diagnosis wasn’t going to change that. Putting down on paper that is was called autism does not make Rivers and different person. But somehow, I thought it would change everything.

But that was naive. I’ll admit my resistance to a diagnosis was more about me than it was about Rivers. It was what was in MY best interest. I feared that adding that diagnosis, that label, would change how I felt about him. Yikes.

It meant, I could no longer call him “quirky”. It meant that I couldn’t blame his social deficits on just being intelligent. Somehow, if he was just smart, or gifted, that was more socially acceptable. But being Autistic, that felt shameful or embarrassing. It left a lot of uncertainty about our future. And it meant that I needed to accept that he was different. Maybe, if I treated him like a typical kid, he wouldn’t be limited by his weaknesses and he could learn to be like everyone else.

Blogging has been really good for me, cathartic in a way. I have allowed myself to be vulnerable and write about feelings I didn’t know I had. Reading those last two paragraphs is painful. What mother feels these things? The love I have for my children is unconditional, yet I struggle accepting this. Something that he has no control over. This is not the type of mother I thought I was, or the type of mother I want to be.

I mentioned before that at the age of 3, I opted out of PPCD in favor of a 2 day a week MDO program. If I could go back to my (slightly) younger self, I would tell her this is a mistake. Rivers did not do well at all. He wasn’t a behavioral problem, but he was far from thriving. He would sit out of every single activity. When I dropped him off in the morning he ran to the carpet squares in the corner. He would be there when I picked him up. He obsessed over the water fountain, he was not potty trained, and his speech was still significantly delayed. One day, his teacher asked if I thought he was autistic. I was furious. He had been evaluated at this point, twice by ECI and the district, both told me they did not believe he was autistic. He did qualify for PPCD based on his delays, but not based on autism. Its not her fault, I was angry with her for all the wrong reasons, she was simply expressing concern. I don’t necessarily agree that she handled is appropriately, but never less it was not her I needed to be angry with. I pulled him out almost immediately.

After some time in therapy, his therapist raised concerns. They are used to handling these delicate conversations and while I resented the implications, I didn’t hold it against them. I brought this information to his PPCD teacher. After spending 20 years in special education, she told me to wait. She did not see the urgency in getting a diagnosis, but she also did not say it wasn’t coming. This was a very important conversation for me. It allowed me to take the time I needed to really think about things. I was happy to have this open dialog and relieved she told me it was ok to wait. It was not going to change anything with the services he was receiving and it was ok to wait.

A few months later, she was walking Rivers to the car after school, and she simply said “It’s time”. I can’t really remember how those words hit me. I had held on to the idea (that she echoed) it wouldn’t change anything.

I can’t really say what changed for me, maybe all I needed was time. Things became more obvious to me, I became more aware of the differences. This notion that maybe parenting a child on the spectrum is different than parenting a typical child became apparent. Maybe there was in fact value in a diagnosis.

I knew I wanted to go to the Child Study Center in Fort Worth. I can’t really explain why I was so passionate about that location specifically. I felt like they would be more thorough. I wanted them to run an IQ test and find out he was a super genius and that would explain everything. The process to get in to CSS is long. There is an application you must fill out before they will consider an appointment. This application included a questionnaire for me and his teacher. From there, they would process the application, and assign us to the appropriate pediatrician and we would be put on the waitlist. I completed all the paperwork and I held on to it for months. We submitted in July of 2017 and our appointment was the end of October 2018, nearly 18 months.

The appointment was anticlimactic. It was the same evaluation I sat through many times. In fact, most recently, the last year of PPCD he was up for a new evaluation and they did in fact call it autism. This placed Rivers into the STARS program in Keller ISD, which gave him a classroom aid for the portion of the day and pull out services twice a week. By the time the CSS pediatrician offered the same diagnosis, it was redundant.

I am happy to report, this diagnosis has not changed how I feel about my son at all. I am sure you know that by now, and you probably even predicted this would be the case. But it did change things. It made me more patient and understanding. It allowed me to accept some of his “quirks”. It helped me manage my frustration with his stimming (ya’ll its bad). It gave me insight into his world and taught me that he isn’t just like everyone else. And thats ok.

So if you want my opinion on when to seek a diagnosis, my answer is when you are ready. I don’t have any regrets about our timeline. We were already in therapy, and nothing changed for us there. If you are not ready for a diagnosis, but are concerned about delays, I do encourage you to seek services as soon as possible. You may not need a diagnosis for insurance to cover them, so you can get help even if you aren’t ready to take that next step. I don’t think denial is a good or happy place to set up camp. But if you need to spend a little time there, it’s understandable. I still visit.

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I Am A $h!++% Friend

My friend recently broke up with me over text message. She was one of my oldest friends. I wish I could say it came as a surprise, but she had been dodging my calls and texts for about a year. I thought that in my mid 30s I was past the point of dramatic endings, but I guess not.

People come in and out of your life, its no surprise to anyone who has lived on this planet more than a decade. Sometimes it is a gradual separation, sometimes it’s more of a production. There are 2 distinct friendships that ended traumatically for me. Once in college when my roommate and best friend at the time, got mixed up with the wrong kind of people. She went down a path I would not follow, and she said some terrible things to me in the end. I remember very distinctly sitting on the phone at an office chair, crying, trying to salvage what was left. It didn’t happen. The second time was last week, when my stomach dropped as I read those words on my phone.

There is a lot I want to say about this incident, but I won’t. The thing is, I AM a crappy friend. I don’t mean to be. I love my friends, dearly. There is almost nothing you can do to lose me as a friend; you will have to kick (or text) me out of your life. But I don’t make my friendships a priority. It’s not because I don’t want to, its because I often don’t have the mental energy.

Caring for a special needs child is hard. Most of the time, its just the daily grind. The grind that all mothers feel, and I don’t think I necessarily feel this any more than anyone else. Mommin’ ain’t easy.

But in addition to the monotony of everyday life, I decided I need to have my own business. I LOVE my business. Photography is my passion, and people pay me to provide this service to them. But running business is hard. And I have built my business around odd hours. I work primarily with natural light, which means I am a slave the sun. I have also decided to focus on high school seniors, which are only available for photo sessions after school and on weekends. So that means, I am working on the weekends and evenings. It means the burden of caring for OUR children falls exclusively on my husband. And I am a feminist, and wholeheartedly believe caring for our children is a shared responsibility. And he never gives me grief about this.

Running a business is hard ya’ll. It’s the hours of a CEO with the salary of an intern, at least in the early stages. And since I always prioritized my mom duties over my business ones, I consider my 6 year old business in the start up phase. Its hard work, and taking pictures is about 10% of what I need to do to make myself successful. And I hope I am successful. These are the reason I am out of gas, but they are not excuses for being a bad friend.

My friends recently planned a weekend trip to Vegas. I was invited to join, and I wanted to, desperately. But the timing wasn’t good for me. And when I approached the topic with my husband I didn’t tell him how desperately I wanted to go. In fact, I knew there was about a 1% change I would go before I ever even asked. I am traveling twice this year, both for photography conventions. And the timing of this trip was just a few weeks before one of my conventions. I am sure I could have convinced him to let me spend the money. But asking him to run the household and take time off work so I can play the slots at the Venetian was a really big ask. I had a really rough week, and the images from their girls weekend started to fill my newsfeed. It broke my heart. They were making wonderful memories that I could have made with them, but chose not to. And I needed that weekend, a lot.

There are times when I am invited to dinner and I have nothing on my calendar, but I decline. That means my PJs would have to wait an extra 2 hours before they are on my body. And I cannot ask them to do that. It means our Shameless binge will have to wait another night. It means I can’t bury my problems in addicting iPad games. I am all about taking care of yourself; and sometimes that means staying in. But I don’t think binge watching TV is really doing anything to better myself or my mood. I need to do better.

But here is the thing, I do not want to be in the business of chasing friends. If after 20 years, you feel the need to end our relationship over a text message, then I am inclined to let you. If my presence in your life doesn’t add value to it, then that’s on me. I don’t want to be a part of someone’s life that doesn’t want me there.

Something funny happened though. I started this little blog, and I told my story to the world. Almost immediately I got a message from a mom thanking me for being so open, and reminding her she is not alone. I scheduled a coffee date with a mom who is struggling with her son. I started a group chat with a few other moms that were interested in getting together to chat about the struggles of ASD. I don’t know if I will find a new friend, but I know right now , I am happy to find moms who share my struggles. I want to spend time with women who get it.

I am not alone, I have wonderful friends in my life. They don’t expect me to be someone I am not, this post is not about them. And to those friends, I am sorry for being a crappy friend. And thank you, for not holding it against me.

rabon629 Uncategorized

My shirt is offensive

the puzzle controversy

I bought a new shirt, I bought it for autism awareness month, I think its cute. I wasn’t sure if I would want to wear a shirt about autism, it feels a little strange to me to be at the grocery store wearing one. Maybe its because I am still not comfortable with autism. But I bought one that I thought was cute, with what I think it’s a cute saying.

With April being Autism Awareness month, my local autism mom Facebook group was blowing up with graphics, and t-shirts you could order, jewelry, you name it. April 2nd roles around and many people in the autism community choose to “Light it up Blue” in support of autism awareness. But evidently that is controversial.

I am not much on origin stories, the movies are never as good. With the exception of Captain Marvel, I LOVE that origin story. Or maybe I just love having a female superhero, but thats irrelevant. Because the internet is full of only the truth, it should be easy to find the origin of this symbol. It seems like originated to represent the puzzling condition. A quick google search says it represents the complexity of autism. But there is a strong feeling in the community that it implies that something is missing. The singular blue puzzle piece is hurtful to some.

No let me stop the eye rolling right there. There is a segment of the population that thinks everyone is offended these days, that there is no way to say anything right, and everyone should toughen up. I am not those people. I care about the words that come out of my mouth, and I care if my choice of words offends someone. But I do agree that it is impossible to please everyone. Before I wrote my first blog post, I polled my community am I supposed to say

Rivers is autistic?

or

Rivers has autism?

It was a civil discussion with lots of responses. The overwhelming answer was that “Rivers has autism” was more PC, but most people were ok with either. With a few scattered responses that were completely irrelevant to the question; I love social media for that. This is call person-first language. And please don’t ask me to explain this further as grammar is not my strong suit and I don’t understand how “Rivers is autistic” is not person first. I digress. But you’ll notice, I didn’t not say “Rivers has autism”. While it received the minority of votes, the consensus among most living with the diagnosis preferred “is autistic.” That was an important distinction to me. I don’t really care what those living without ASD think is right, I care how those living with it feel. Rivers is not yet old enough to ask or understand really, so I may change my tune on this as he gets older and has opinions.

I wore my shirt yesterday for the first time. I thought a lot about its meaning. At the time I ordered it, I didn’t know it was controversial. I think that maybe the phrase “Until all the pieces fit” could be interpreted that he somehow needs putting back together. That is he broken.

I still think my shirt is cute. I will wear it. I decided, that for me, it means until everyone is accepting of differences. Until he can “fit” into society exactly how he is. That he will not need to conform to make society feel comfortable.

I imagine a future for him where his house is filled with the most uniquely engineered doors. Like you can clap and they will close, or his front door will be like the automatic doors you walk through at Target. I don’t know exactly, but I am sure they will be cool. I imagine him explaining to his children how he engineered them, and why they are superior to regular doors. Maybe one day he will create and run a successful door company that employ other autistic engineers and it will be more successful than Apple.

I want him to be proud of what makes him unique. He has been given a gift, a brain that thinks differently. Different is GOOD. That does not mean it is not without challenges, it means that he will struggle to focus or hyper focus (weird that these are exactly opposite and both problematic). It means he may stim while learning, or wear headphones to block out the noise. These are real struggles in a society that is constantly moving and extremely noisy. Its something I cannot relate to, but I can support him. I can give him the tools needed to strengthen his weaknesses and I hope, strengthen his strengths. He is the most unique child and I am proud to be his mother.