The 3 Important Things to Know About My Special Needs Family

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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 [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.

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A Letter to My IEP Team

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At almost 19 years old, I attended my first IEP meeting. A couple months later (in spring 2014), while in attendance at my fourth meeting, I wrote the following letter.

Dear IEP team,

In the past couple months, I have attended three IEP meetings. Today is my fourth one. In the past month, I have watched you all sit together and talk about me. I have listened a little and have even tried my best to correct and respond to some of the things you have talked about. You all talk really fast, so it makes it sort of hard sometimes.

Today it appears you will continue talking about my behavior and the things I have a hard time with. You will probably all make comments about where I am and where you thought I would be by now, or where you hoped I would be. This has happened at every meeting I’ve attended. I don’t think any of you do it on purpose, but it’s quite annoying. That’s OK, though. Sometimes I wish I was further along, too. I want to make you all proud. I strive to make progress every day, and I do my best to show you. But I also frequently wish you would stop defining me by the things I can’t do or by the things I don’t do that well.

I wish you would talk about everything I can do — what I do right. However, it’s all looked past because of everyone’s different definitions of progress and perfection. You are so focused on fixing me that you can’t even notice how hard I work.

The thing I’m really trying to say and what I’ve been trying to say in the past month, is that I get my presence at this school is barely tolerated. The teachers do a very good job of making that clear to me. They are all very good at saying I shouldn’t be here, even the head principal. That’s OK. I’m fine with them and you thinking that. But I’m not OK with being talked about right in front of me or even worse, being the root of some adult’s joke. Like when my intervention specialist took my iPad from me, typed “My name is Jordyn Zimmerman and I smell like butt,” then proceeded to play it for other students. I’m not OK with that. Although, that’s just one example. There are many more things. I know they won’t be acknowledged, so I won’t waste my time going over every detail of everything I’ve heard and the things that have been said to me. But ask me about them and I will name each thing, where in the school I was and who else was around.

As has happened in the two of the three meetings I have been at, I’m sure people will talk about everything they’ve done to try and help me this year. Fortunately, many of the things were usually attempted. What you don’t understand is that on average we only did these things once or twice. But you don’t know that, so you will all sit and try to figure out why those things were never successful, or at least how you define successful.

Lastly, please remember I am part of this team. I am not some statistic. I know I may not always participate to everyone’s satisfaction, but I am the student, and given my title, I am still an important part of this team.

Thank you for trying to help me and understand my concerns. I’m sorry if I didn’t make these things clear to you, prior to today. I didn’t know how to.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or illness. 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

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5 Ways to Help a Special Needs Family During the Holiday Season

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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.

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This post originally appeared on Stimmy Mama.

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To the New Special Needs Parent: Sorry About the Internet

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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

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

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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 licking the top of a hot sauce bottle. The manager then allegedly said “his kind” was not allowed in the restaurant.

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Jackson says she’d apologized, offered to pay for the bottle and asked if they could finish their meal, but that they were ultimately kicked out.

Razoo’s CEO Jeff Powell told WFAA he was alerted of the incident and is reviewing the allegations but that all people are welcome in the company’s restaurants.

“All I can say is our president is taking the time to fully investigate the incident, and a full response is forthcoming,” a different manager at the Cedar Hill location told The Mighty. “But if you’re asking if people with special needs are welcome at our restaurant, the answer is absolutely.”

Upon hearing about the incident, many customers voiced their outrage with Razzoo’s online.

“You should replace your management and educate your staff. How dare you kick out someone for being special needs,” one person wrote on the restaurant’s Facebook page. “That is absolutely disgusting and completely discriminatory practices.”

“A properly trained manager could have educated the wait staff and customers and had a much more positive outcome,” another wrote. “Ignorance to autism is just unacceptable these days.”

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

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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.

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Torin Tashima with his dad, courtesy Brian Tashima

When Torin was 12, he was into reading books like “Harry Potter,” “Percy Jackson” and “The Hunger Games.” Torin turned to his dad one day and asked him to write an original sci-fi. Tashima agreed and decided to use his son as inspiration.

“With these books, I really wanted to emphasize the positive aspects of being on the autism spectrum and create a character that saved the day with his special qualities, not despite them,” Tashima told The Mighty via email.

The books follow 16-year-old Joel Suzuki, who has Asperger’s syndrome, as he deals with bullies, school work and fantastic adventures to new worlds. Tashima molded the protagonist after by his son, whose skills, to his dad, are like superpowers.

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courtesy Brian Tashima

“When he was just a toddler, he basically taught himself how to use a computer,” Tashima told The Mighty via email. “He figured out how to do things on it that I didn’t know how to do myself. He could memorize long strings of numbers and solve puzzle games meant for much older children. He was also able to notice tiny details in things that no one else seemed able to see, which ended up being the inspiration for my protagonists’ primary superpower.”

Tashima wrote the draft of the first book in four months and then spent over a year rewriting and revising it before “Secret of the Songshell” came out in July 2012. Book two, “Mystery of the Moonfire,” took about three years and came out in October.

Tashima says his books have so far been received well by the autism community, and he hopes to keep writing them to inspire young adults like his son.
“My main goal with this book series is to give people on the autism spectrum a literary hero they can call their own, someone who can help boost their self-esteem while also providing readers from all walks of life with a fun and entertaining story and raising awareness in the process,” Tashima told The Mighty.
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courtesy Brian Tashima

A portion of the proceeds from book sales go to Autism Empowerment, a Vancouver, Washington-based nonprofit Tashima serves on the Board of Directors for.

h/t Oregon Live

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