Author: rabon629

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.