Category: Uncategorized

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

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.

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.

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.

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.

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.

Everyone says not to compare your children. Not to anyone else’s or even other children of your own. Truthfully, I find this to be a bit dangerous. I get it, kids develop at different rates, the grow and learn at their own pace. But there are acceptable ranges for certain milestones. Just because Jane’s daughter walked at 11 months, doesn’t mean you should worry when your son isn’t walking also at 11 months. But you know, you should worry if they are 2 and not walking. Where is that line? That line that goes from within the curve to below it. The one where you start googling because you know something doesn’t feel right. Obviously a pediatrician is a fantastic place to start. But once they turn one, their frequent visits stop. I think we saw the pediatrician at 1, 15 months and then again at 2. There are a LOT of things that should happen between 15 months and 2. A lot of things that a first time mother might not know.

Comparison IS the thief of joy, its emotional baggage. But I am so thankful that I did make the observations I did. I joined a moms group when Rivers was 5 or 6 months old. I love those ladies, they were intentional in their playdates. We went to museums, and the zoo, and it was ok if we needed to Irish up our coffee sometimes. There were lots of kids close to Rivers age, within 6 months or so. I started to notice Rivers wasn’t talking as much. His vocabulary was dismal and he still grunted and pulled me where he wanted me to go, the other kids didn’t do that. There was a play place we loved, and I started observing the other kids pretending or dressing up. Rivers ALWAYS played with the doors or trashcans. I thought that was weird, and disgusting. I was constantly redirecting him and never really felt like I could sit and enjoy the company of other moms. I noticed he was different.

I don’t know if the need to compare ever goes away. I don’t feel competitive about it, it’s not really about my child being the best or even like everyone else. It’s the stress and worry, that comes with uncertainty. He is not reading at the level he should be in kindergarten. He is trying SO.HARD. Which somehow, makes it worse. Maybe Rivers is highly intelligent and just doesn’t feel the need to show us what he knows. Or maybe he is struggling, maybe he doesn’t understand or maybe he is dyslexic. What if, what if, what if.

I see so many posts in moms groups. Moms that are concerned about the development of their child. There are usually loads of responses saying, “don’t worry” or “stop comparing”. But here is the thing, If something worried a mother enough she needed to ask a bunch of strangers if something was “normal” her concerns are valid. Maybe she truly doesn’t need to worry, but isn’t it up to those with the training and experience to answer? It’s not helpful that your sister’s nephew’s half brother didn’t speak until he was 14 and now is the CEO of a fortune 500 company. Those things CAN happen, there are success stories. There are moms that worry that their 9 month old isn’t walking and it seems crazy to a veteran mom. But these examples are not the majority. Mom gut is a real thing, you should trust is. I wish, more than anything, we would stop saying what everyone WANTS to hear and start telling them what they NEED to, even when its hard.

And to the mom out there who is worried, seek professional guidance. Get an evaluation. If you need to know who to call, or where to find out more about development delays I am an open book. I am NOT an expert but I would love to help you figure out what your next steps should be. ECI is a great resource for children 3 and under. Over 3, the school district will take over services and evaluations. By law, if you request and evaluation the school district must accommodate, even if they are already school aged. Seriously, if you are worried its best to seek advice. The best case scenario is they tell you everything is fine. The worst case scenario is that it’s not, but they can help. And the earlier you start, the better. And starting late, is better than not starting at all.

I am going to start with with a PSA that I am not speaking on behalf of the entire autism community. Every parent is different, what pushes my buttons may not push theirs. These are the questions and phrases that takes my day from ordinary to disastrous. You know, the ones that make you want to crawl in a hole and never climb out. Don’t say these things to me.

“Is he autistic?”

It’s not a secret. I blasted our business all over the internet with our faces attached. I am not ashamed, or embarrassed; I am open to sharing. If you want to have a dialog about autism, if you want to ask me about Rivers, I would love to have that conversation. Any day, any time. But if you are just curious, keep it to yourself. Quite frankly, its none of your business and I am not quite sure what value that information has in your life. All it does, for me, is remind me that Rivers is so obviously different that you needed to open your mouth and tell me. Not everyone is comfortable talking about their diagnosis, and you likely ruined their day with that question.

“Have you tried……?”

It doesn’t matter how you finish that question. The answer is yes we have tried it. Or maybe its no we haven’t. But generally, that choice was made intentionally. Most parents I know with children on the spectrum have done extensive research on just about everything related to autism. Just because something works for your friend, or you read about it online, does not mean it’s right for me. Just keep your unsolicited advice to yourself.

Sharing what has worked for people you know can be helpful, in the right context. Don’t be afraid to connect us with people who have had success trying something. And it’s completely prejudice of me, but its completely different hearing this from a special needs parent. Just make sure you know your audience when offering up suggestions.

“But he is so smart”

You can replace smart with creative/funny/attractive/social whatever adjective fits. I am going to say this really loud for the people in the back. AUTISM IS A SPECTRUM. To learn a little bit more about what that means, click HERE. It is NOT an intellectual disability, it does not prohibit creativity, has no bearing on how you look, and it doesn’t even mean they aren’t social. There is a saying floating around the universe “Once you have met someone on the spectrum, you have met 1 person on the spectrum”. Its cheesy, and not exactly the phrase I would coin to explain differences, but you get the idea. People on the spectrum can be smart or artists, or engineers, or teachers or scientists, you tube stars or grocery sackers. They are still people after all.

“He will be just fine”

I don’t know why people say this to me. I think it’s meant to be comforting. Let me tell you something, it is not. I have little doubt that Rivers will grow up one day and fall right in line with us normies. I think he is capable of having a great job, getting married and having a family; capable of a very typical life. But this is a journey, sometimes focusing on the end is like a light at the end of a very long and dark tunnel. But there is a lot of work to do between here and there. Life is like a marathon, It’s like telling someone at mile 1 “don’t worry, I am sure your will finish.” Sure, it is, but there are 25.2 miles of hard work between where you are and where you finish. Yes, I think he will be “fine”, but I cannot and will not be so blasé about what it takes to get him there. I cannot sit on the couch, with my popcorn binge watching Netflix and just hope it all works out.

I am going to ruffle some feathers with this next one. which is why I saved it until the very end. Remember when I wrote my autobiography in the about me section of this blog? Remember the part about strong opinions? Here is one of them.

“I would rather my child have autism than die of the measles”

Yup, I went there; the vaccine debate. But it’s not what you think. The reason this phrase makes my skin crawl is because it’s painfully obvious but definitely not that simple. Yes, I would 100% have my Rivers be exactly the way he is than dead. Good grief. Do you think people who choose not to vaccinate prefer their children dead? Ludicrous. It’s easy to wax poetic on this topic. I am not a doctor, but the CDC says the last reported death from measles in the US was in 2015. I won’t discount the seriousness of this disease. I don’t want measles. I don’t want my children to get measles. Its sounds terrible. Autism is a life long disorder. It has many struggles, that span across a lifetime. The likelihood of you dying from measles in America is unlikely. So, please make that vaccination choice that is right for your family. But please stop comparing a virus to a life long disorder.

And I will add a disclaimer, because I don’t want hate mail. My children are both fully vaccinated, on an alternative schedule I worked out with our peditrician. I do not believe they cause autism, at least in our case. I can back date symptoms to when he was months old. There is also a huge genetic component for us, which I did not know until I started really suspecting something was different. I can’t speak for other parents on either end of this debate. I respect YOUR right to choose. Vaccines are not without risk and it is for each family to weigh those risks and rewards themselves. I will be your friend regardless of where you fall on this debate. And I will listen as you argue why you feel that way. I love debates, as long as they are healthy and respectable.

Apologies in advance. These first few posts are a bit schmaltzy. And yes, I found the word schmaltzy on thesaurus.com, and I am unashamed. It’s just sounds like the word I need to use here. But I promise that all my posts are not schmaltzy, in fact they will likely be the opposite. But I feel like there is a lot of backstory and its necessary to know we wouldn’t survive without our support system.

When I first sought out an evaluation, it was actually just speech. It was noticeably delayed, and I would soon learn he was about 18 months delayed by the time we started at 2.5. I told my parents I thought maybe he was autistic. I was surprised (and angry) to learn they had the same concerns. Why didn’t anyone tell me? Seriously. I DON’T KNOW WHAT I AM DOING! He was 2 years old, I didn’t know there were red flags. But it’s ok, I wasn’t ready to hear that information. And I am certain hearing it before I was ready would have led to resentment and hostility even to this day.

Early intervention and a strong support system are key. If I hadn’t sought an evaluation for speech, who knows where I would be. Speech led us to OT and PPCD, and put a team of experience people around me. Qualification for PPCD gave us an Individualized Education Plan (IEP) at 3 years old. I know moms who are struggling to get accommodations for their school aged children even with a medical diagnosis. We are so lucky, this is not us.

We sought private speech as soon as we aged out of ECI. I mentioned in my earlier post I delayed PPCD enrollment but I felt it was important to continue speech. OT had what felt like an insanely long wait list but eventually we started private OT as well. We are going on year 3 at Therapedia and couldn’t be happier. The therapists there are so caring and feel like an extension of my family. The relationships we formed there are invaluable. Again, lucky. Rivers was just recently dismissed from OT (temporarily we expect) and while its actually GREAT, I am sad. I can’t explain it, I should want him to move on from therapy, but it feels a little like climbing a tightrope without the safety net.

While good therapy and an accommodating school system is important, I think the thing that has really helped us the most has been family. I have always been close with my family. We did family dinners at my grandmothers house regularly my whole life, and we still do. My parents are long divorced but are both active in our lives and the lives of my children. We celebrate every holiday, birthday and milestone twice. It’s exhausting and it takes a toll, but I wouldn’t have it any other way.

My family has never treated Rivers any differently. They never suggested it was a lack of discipline, or structure that caused his behaviors. They supported my search for holistic treatments of gut health and offered support when I suggested that might not be enough. They understand his stimming, and provide an outlet for him to do so. One of his stims is slamming doors, to the point it would drive any human to insanity. My mom purchase those tiny circle stickers you use to reinforce binder pages, and labeled each of her doors. The green ones he can open and close an unlimited amount of times, to his hearts content. The orange ones he can open and close 5 times then he has to move on, the red ones are off limits. Genius. This system works flawlessly, she makes me feel like a bad parent, but in a good way. Sometimes I cant see outside myself to create a system that works. The day to day grind becomes unbearable and I feel the burden of life weighing me down. This is why support matters. I could have a family that doesn’t believe in Autism, you know the ones that think they just need a good spanking. They bend and flex with me, they learn along side me. They are my rock, my shoulders to cry on, and my relief when it’s all too much.

Rivers is 6 now, you can probably tell he is much younger in these images. He was about 2.5-3 years old in these; the age when he started therapy. It felt appropriate to put a reference as a reminder of how young he really was when we began this journey. It made my heart happy to look through old photos and reminds me I need to be better about documenting our daily life.