Stimmy Mama

@stimmy-mama | contributor
Stimmy Mama is a single working mother raising two humans in the Hudson Valley in New York. As an autism awareness advocate, she has been called an, “in your face Autism Mom” — a label she wears like a tiara. In her free time she camps with family, hangs with her best friend and mutual autism mom while drinking wine.
Stimmy Mama

The 3 Important Things to Know About My Special Needs Family

I was hit a few times with pure ignorance yesterday. Starting at the bank, the woman on the phone said, “Oh it’s OK if you bring your son. He will be fine here.” Well, just as I suspected, it wasn’t OK, because my son, Keegan, wanted to climb down the stairs headfirst into a line of five people. He wasn’t worried about the people in his way. The woman I spoke to was nice, but when I mentioned the big A-word, all she kept saying was how sorry she was. I know ignorance doesn’t know, but I wanted to yell. Then I look at those people standing on line, now staring at my son and I. Again, did they not get the memo? A study released in November 2015 suggests one in every 45 kids is diagnosed with some form of autism spectrum disorder. Forty-five! But let’s start counting the numbers related to ignorance in our society. I would love to hear those numbers on the radio in the morning. Here’s another thing I hear a lot of, being a single mom of two kids, one of whom has autism: “Wow how do you do it by yourself? That’s terrible. I’m sorry.” That’s terrible? What’s terrible? That my son has autism or that I’m alone? Let’s set the record straight: My son is the coolest kid walking and nonverbally communicating, and being a single mom is tough for anyone, not just an autism mom. So I force myself to believe that people just really have no idea. A single mom with two kids, typical or not, has a tough and rewarding job. But I’m no superhero. I can go from sleeping to not sleeping in a single screech, but that could be my only superpower. My kids are superheroes, and neither of them need fixing. My 2-year-old son has moderate autism and has always had it. I love him unconditionally, screechy or not, talking or not, stimming or not. My 6-year-old daughter has the patience of a saint and isn’t quite sure how to handle her brother, but when he interacts and hugs her, you would think she just won a prize, and she kinda did. There is ignorance everywhere, sadly. I believe it is the most annoying disease out there. Some have it because they don’t know, while some choose to live in it. So I choose to be ignorant about ignorant people. Like they aren’t standing and staring at all. Like they do not exist. This is what’s important for people to know about me and my family: 1. Not all kids who are loud are unhappy. 2. Not all kids who are silent are unhappy. 3. Just because someone’s child is loud or silent does not mean Mom or Dad is unhappy. This is my happy son, KeegerButt. This is my happy daughter, Addy Pants. And this is a happy autism mom. Follow this journey on Stimmy Mama. 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 community@themighty.com. 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.

Stimmy Mama

How to Help a Special Needs Family During the Holiday Season

This time of year gets difficult for my family because people invite us to holiday gatherings. Quite frankly I appreciate the invites when I still get them; they show me people still care about us. In the last year, my son has changed a bit; he’s now obsessive which can make a difficult life more strenuous — especially since he’s nonverbal. When he gets upset, he can’t even tell me what the deal is. He just has to work through it, kicking and screaming, until he’s exhausted and needs a hug. And although people try to understand, it’s impossible for a person without a special needs child to “get it.” So we go through life being a part of the celebration when we can, praying during the times we do participate that we aren’t asked to gather our child and what’s left of our dignity and slink out the door hoping no one will notice us. So you want to help a special needs family during the holidays? Here are a few things I always find helpful in our holiday insanity: 1. Invite us, but be OK when the answer is no. Even though you really miss your sister or cousin or whoever it is, keep in mind deep down they want to be there. So just be kind and caring when they respectfully decline. You’ve stated that you adore the special needs family member a hundred times, but keep in mind the little meltdowns you may have witnessed might be extremely mild; most likely, no one but immediate family has witnessed an “end all” level meltdown, and they may appreciate your thought from a distance. 2. If you’re asked for a detailed guest list, don’t judge. Parents of special needs children often worry not about the people attending but about the amount of people. My son Keegan loves going to Nana’s house, but if it’s stuffed with 30 people and he has a meltdown, it may get dangerous. We aren’t being jerks when we ask who will be there; we’re just being cautious. 3. If they plan on coming, prepare for just-in-case scenarios. Yay they’re coming! Should I do anything? Hell yes. Even though it isn’t necessary to announce the “autism family” is on the way, do prepare in your mind a nice little something for just-in-case scenarios. This way if a meltdown occurs and they need to restrain their upset child, look around to notice if anyone is staring or totally disgusted. This would be a good time to calmly sashay over to said person and say something like, “I know this may be difficult for you, but their child has [insert special need], and he/ she is just having a difficult time right now. Would you like to come into the kitchen? I will get you a drink.” The person needing to restrain their own child at a party will be forever grateful for this calm step-in. 4. Don’t ever stop inviting us — even though typically if you ask a friend and they always say no, it may make sense to  stop asking. If that friend has a special needs child, please do me the favor of never giving up. There’s a good chance they’ll say no for the rest of their child’s adult life (because being a special needs parent doesn’t stop at 18). But the friend will appreciate being asked because you’re still considering their family. That means a lot to us. 5. If we aren’t invited, tell us why. Even though it sounds harsh, I always appreciate a friend telling me we aren’t invited. There are always times when people don’t want to deal with possible situations, so if you nicely tell us, we may be bummed, but I will still appreciate the honesty. I wrote this post after my son and I missed my brother-in-law’s birthday on Thanksgiving eve because every time we needed to get in the car, Keegan had a severe screaming fit and would end up with us in full restraint. Sadly, after the third restraint I gave up. But the next morning when I texted “happy thanksgiving, sorry I missed you again,” the response I received was, “no worries I understand and happy thanksgiving.” We have lots to be grateful for. This post originally appeared on Stimmy Mama.