To the New Special Needs Parent: Sorry About the Internet


I believe the Internet is terrible. There, I said it. I realize no blogger should admit this, but it’s true. I was recently asked by a family member if I could help the mother of a child who is having trouble coming to terms with the strong possibility that her son most likely has autism. I began to think of all of the cool, funny or helpful sites. I was about to suggest them, then I remembered the dreaded comments section. That is a rabbit hole no new autism parent should fall down.

I was recently chatting with a fellow blogger about this topic. He mentioned how an adorable video of a toddler singing the “Imperial March” from “Star Wars” got a few thumbs down on YouTube. How does that even happen? Was she singing off key? Did the viewer think that by liking the video he would support the Empire? I don’t know about that. But I do believe that, for a group of the population who hates being judged and given unwanted advice, we sure do judge and give unwanted advice.

I recently wrote a story about my son having a rough time at the grocery store. The point of the story was that a lot of people judged my parenting, but one guy helped. In the story, I mention that my son is drinking an ICEE.  I almost didn’t put that part in. Why? Someone was totally going to tell me that I suck for giving my son and ICEE. I wrote it in anyway, and guess what? There were actually more than a few Judgey McShamepants comments. My favorite part is that the comments started out something like, “Yeah, people who don’t understand shouldn’t judge us… but maybe stop giving your child sugar.” I just had to laugh. I have come to a place in my journey where I can laugh. That does not happen overnight.

Go back in your mind of the first few months of your child’s diagnosis. If you were anything like me, you were fragile. I read article after article, looking for knowledge. What I found were different ways in which to blame myself. There were a million things that I did wrong. There were a million causes. There were a million therapies. Early intervention was the key, so I had to get started.  So many choices, what if I chose wrong? The pressure was building, then there was the anger.

It seemed like all of these parents were angry. They were angry at teachers. They were angry at doctors. They were angry at the government. They were angry at parents of neurotypical kids. Behind anger is always pain. I didn’t want to be that angry. I didn’t want to hurt that much. I walked away from the online community, and it has only been recently that I walked back. I came back with positivity after fully accepting autism and embracing our lives together.

For those of us further along in our journey, we have so much to share. We are passionate. Passion does not need to be angry. Passion does not need to mean judgment. Passion can be gentle. Passion can be welcoming.

It is OK to feel all of those things. We all have. However, before I ever click, “publish,” I do my best to consider the mom behind her computer. She is lifting up her glasses and dabbing her eyes. Before causes, before therapies, before frustrations, there is her. She needs to know she is doing a good job. She needs to know she is powerful. She needs to know there is an army of parents behind her. Sure, we might be carrying coffee cups and wearing wrinkled pajamas, but that’s our sexy, sexy uniform.

So, to the new moms of spectrum kiddos, pull up a mouse pad. Take what you want and throw the rest away. Everything is not only going to be OK, it will be great. Oh, and don’t let anyone tell you that you can’t rock the messy bun. It totally works on you.

Follow this journey on RaisingJedi and the RaisingJedi Facebook page.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

TOPICS
JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

Man With Autism Allegedly Told ‘His Kind’ Not Allowed in Restaurant After Incident

The mother of a young man with nonverbal autism says a restaurant manager in Cedar Hill, Texas, told her family to leave after complaints from other patrons on Tuesday night. Wendy Jackson told WFAA that while eating at Razzoo’s Cajun Cafe with her twins, a manager pulled her aside, asked “what’s wrong” with her son and said customers saw him [...]

Dad Creates 7-Part Sci-Fi Book Series With Autistic Main Character

Brian Tashima, a musician who lives in Vancouver, Washington, is writing a seven-volume science fiction fantasy book series that features a character with autism. He’s writing the series because his 17-year-old son, Torin Tashima, who has autism, asked him to. Torin Tashima with his dad, courtesy Brian Tashima When Torin was 12, he was into reading books like [...]

The 13-Year-Old’s Birthday Party That Has Me Giving Thanks

Often times we hear about the bullies and the kids making fun of others. Well, this story is different. You know what is cool? When a group of 13-year-olds embraces your nonverbal son with autism as one of their own. No judgments, no condescending comments, no reservations or hesitation. He is just another kid with [...]

To Our Thanksgiving Host, From the Mom of the Child Who Won’t Eat Your Meal

Dear Thanksgiving Day Host, Before we arrive in a few days, I just wanted to take a minute and thank you for offering to host Thanksgiving Day dinner. I am beyond thankful. In fact, when you said, “Why don’t you guys come here?” I swear I hung up the phone and screamed, “Hallelujah I don’t [...]