19 Things Only Special Moms Understand

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A group of strong, intelligent, courageous, loving, special needs mamas wrote these 19 things that only a special mom would understand. One of their most important qualities is that they have a sense of humor… something that is a requirement for sanity for the special needs parent.

1. If you’re standing in line at Target and your kid hugs the shopper in line in front of you because her coat is soft… you might be a special mom.

2. If you keep a trunk full of bubble wrap in your car for self-soothing… you might be a special mom.

3. If you keep a stress ball in every purse and backpack your family owns… you might be a special mom.

4. If you plan your outfit around whether or not you will able to carry a mid-meltdown kid out of a room, and have zero wardrobe malfunctions…you might be a special mom.

5. If you get lazy and don’t put the vacuum away for a couple days, and when you finally do, your kid keeps getting it out and putting it back in “its spot” in the middle of the living room because he now believes that’s where it “goes” and that’s where it NEEDS to be… you might be a special mom.

6. If you stop traffic to retrieve a hub cap that just fell off a semi, because this is your kid’s latest obsession and you know he’ll be thrilled… you might be a special mom.

7. If you go to a birthday party location three days before the actual party to practice what to do… you might be a special mom.

8. If your kid tells her sibling to stop breathing because it’s annoying… you might be a special mom.

9. If your kid “tells” you that your singing voice is ugly by putting his hands over his ears… you might be a special mom.

10. If you’re constantly tripping over objects grouped in three all around your house… you might be a special mom.

11. If your child gets punished at school for participating in an age-appropriate prank, but inside you’re cheering… you might be a special mom.

12. If you run to the grocery store late at night because you’ve just realized you’re out of grapes and if there are not grapes in your kid’s lunch, there WILL be a meltdown… you might be a special mom.

13. If you are excited instead of upset when your child continues to try to sit on the kitchen table because he is trying to imitate what his sister is doing… you might be a special mom.

14. If people don’t understand you because you say things like, IEP, TEIS, IDEA, OT, PT, ST, LRE, presumptive placement, supplemental aids and services, or ABA… you might be a special mom.

Mother and daughter on a beach

15. If you listen to Christmas songs 365 days a year… you might be a special mom.

16. If your friends say, “Let’s take the kids to {insert anything that requires waiting in line}” and you just laugh… you might be a special mom.

17. If you have carpal tunnel from continuously spinning the office chair around and around… and around and around in circles… you might be a special mom.

18. If you’re invited to a park or barbeque and your first question is not, “What can I bring?” “What time?” or “Where?” but, “Is it fenced in?”… you might be a special mom.

19. If a simple kiss means the world because that is how your child says, “I love you, Mom”… you might be a special mom.

This post originally appeared on Ramblings of a Special Mom

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Dear Autism, Thanks for Making Me Beautiful

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Autism, I’m not gonna sugarcoat it. You’re an ugly beast. You possessed my son at a young age and immediately went to work, trying to wear me down with his crippling anxiety, volcanic tantrums, physical aggression and foul language.

But I weathered the storm.

You thought you could break me with an adversarial school district that didn’t understand my son’s challenges or strengths. But I armed myself with the knowledge of special education law and at every IEP meeting battled for my son’s Free Appropriate Public Education (FAPE).

I was a warrior.

But instead of retreating, you turned to guerrilla warfare. You surprised me by ambushing my marriage, my health, my sanity. While I was down for the count, you went in for the kill. Your final attempt to ruin me was with the phone call from the police, informing me of months of alleged physical and verbal abuse to my son by his special ed teacher.

Guess what? You finally won.

They say what doesn’t kill you only makes you stronger. I’m a fighter, but I didn’t feel any stronger. After much reflection I realized that in my case, what hadn’t killed me was making me beautiful. Yes, beautiful.

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Photo credit: Christopher Cooke Photography

True, you succeeded in wearing me down, autism, but as you were chipping away at me each day, something amazing was happening. You revealed an inner beauty I didn’t know existed. As you took, you also gave. You were the Colorado River to my Grand Canyon.

After having been in the trenches for years while we waged our war, I gained perspective on what really mattered in life and less tolerance for what didn’t. My compassion grew toward others as I witnessed the struggle of so many. I became more humble as I met other warrior parents, some who were fighting bigger battles than me. I recognized that all brains were not wired the same way – autism had its own unique wiring – and that, in itself, was a beautiful thing.

You, autism, taught me that immense beauty exists inside each of us, but sometimes it’s necessary to go through the process of erosion to reveal it. Some call it the beauty of decay. It’s seen in a graceful Michelangelo sculpture chiseled from a block of marble, a caterpillar morphing into butterfly or a tiny but powerful river carving out an awe-inspiring natural wonder of the world.

But most important, your beauty is seen in my son. He’s a bright, creative, silly, energetic 9-year-old who loves skateboarding, video games and hanging out with his friends.

So, thanks for the metamorphosis, autism. But let’s sign a truce now, OK?

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When a Little Girl at the Pool Realized My Son Has Autism

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EMTs, firefighters and police officers all have something in common. When crisis arrives and everyone’s running away from it, they’re the ones running towards it. They’re the first on the scene to help, to rescue and to serve. In my world, the term “first responders” means something a little different.

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The first year after my son’s autism diagnosis — now five years ago — was by far the hardest. The news hit us like a mack truck. We were lost, confused and in many ways, in a state of grieving the “what could’ve been.” But probably more than anything, I felt alone. I’ll never forget our first responder, “Dana.” She was the first one to reach out. She has a son with autism, and she told us the first year would be the roughest… but she also told us things would get better. She said we’d find our therapists (we did). She said we’d find a school (we did). She said we’d find our “village”(we did). She said we’d find our way (we did). She was the first of our “first responders.” I’d later meet all the aforementioned amazing people who would also become first responders. The ones who reached out. The ones who came to help. The ones who came to “rescue.” The ones who’d devoted their lives to serve kiddos and families like ours. “Dana.” She was the first of my first responders. That’s something you never forget. That’s something I hope one day to pay forward to someone else in need. I hope one day I can be someone’s first responder.

Spring has sprung, and the weather is getting warm again. I can’t help but think about summer. I can’t help but think about the little girl named “Jade.” Last summer we were living in an apartment with a community pool. We would venture out early to avoid the extreme heat, the crowds and to be honest, yes, to avoid the stares. One time a gentleman (term used loosely here), after looking at my son, motioned to his wife that circular motion between his ear and head. You know, the one people use to indicate someone’s “crazy.” Yeah, that happened. People aren’t always kind. That day, as we walked back towards the apartment, I contemplated all the things I could’ve and should’ve said. And I may have possibly considered running him over with my Prius. OK, maybe not run over but at least tap him with my front bumper (That’ll teach him!) But instead of doing any of that, I went home and I cried, and then I cried some more. I avoided the pool after that as much as I could. My son stims… and he stims a lot. Finger-flicking, hand-flapping and squealing. Behavior that makes him appear “weird” to some people. Kids never initiate play with him, and typically when one has, as soon as they realize he’s different, they walk away. They always walk away.

Except this one time…

son happily playing in the pool I was sitting by the pool watching my son splashing and squealing, doing his stimmy thing, happy as a clam.  In walks “Jade,” somewhere between 7-8 years old, blond hair, freckles across her nose, all 50 pounds of her, if that. She spots him by himself and proceeds to initiate play. She talks, asks him questions and as usual, he doesn’t respond. About this time, I fully expect her to walk away, just like all the others had before her, but she doesn’t. She doesn’t walk away. Instead, she looks at me and asks, “Does he talk?” I respond, “No, he does not.” She asks, “Does he have autism?” I’m not going to lie here, the question stunned me a little. I wasn’t entirely sure how to explain autism to a girl so young. Either way, my response was short and simple, “Yes, he does.”  She turns around and changes her approach with him. Instead of asking him questions, she starts telling him what to do. “Here, get on the float, I’ll pull you,” “I’ll throw the ball, and you catch, OK?” Whoa! Was I really seeing what I was seeing? Was my son playing? Did my son finally have a friend? For about 20 minutes, until the little girl had to go, I got to watch two kids laughing and playing together, and for the first time ever, one of them was mine. Thank God I had sunglasses on because I was a mess. A blubbery, emotional mess at what I’d just witnessed.  

Had I not ventured back to the pool because I was too scared to have another encounter like the one with the “gentleman,” I would’ve missed out on two of the remarkable things. The first one was this: in about 20 minutes, the little girl named Jade gave me something I’d waited six years to see. My son, mine, play with a friend! And the second thing I witnessed, well that was as equally remarkable: That warm summer day, I got to see a first responder being born. And that, my friends, is something you never forget. 

son wearing sunglasses

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An Apology to the Therapist Who Urged Me to Get a Diagnosis

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1517455_476906429114023_765835911775529869_n How do I sum up and explain what it’s been like in our house the past few months? Some people have asked questions, some don’t know what to say and some are still in denial. It all started when Zoey was around 14 months old. She stopped answering to her name, even when we yelled it as loud as possible.

She also stopped making eye contact. I used to light up when I’d call her name and she’d turn to look at me with her big beautiful smile. She started pulling away from us, not wanting to be picked up or held. I couldn’t just walk over to my baby and hug and kiss her like I’d done many times in the past.

Zoey isn’t my first child. She has a sister 16 months older than her. Yes, I have a 3-year-old and a 2-year-old… toddlers, gotta love em! I also went to school for Early Childhood Education. I’ve been around children my whole life. I knew Zoey was not hitting milestones, and her speech was delayed. My brain knew what my heart didn’t want to know. At her 18-month checkup, I mentioned it to her pediatrician. I watched Zoey’s doctor call out her name multiple times in different tones, and my child didn’t flinch.

What followed next were two hearing tests — hearing was fine both times. It was at that point I heard, “You should have a speech evaluation done.” OK.

The Early Intervention team came to our house — a physical therapist and an early education specialist. I sat down on the floor with these two women and Zoey while my husband occupied our 3-year-old. I was asked many questions, and I sat there as they tried to involve Zoey in play and imitation. I watched as they tried to get her to make eye contact and engage with them. After the three-hour eval was done, I sat impatiently waiting for what they had to say to me about my baby. They talked about fine and gross motor skills, but that’s not what I was on the edge of my seat about. Yes, she was delayed a bit in both.

I waited and watched as this professional sat on my floor and looked at her paper, reading what she’d evaluated from being with my child. “She is a beautiful happy girl,” and then I heard a lot of things I tuned out because I could feel it in my gut, my heart and I could see it written on this woman’s face. Then the words came out. “She has the communication skills of a 6 to 8-month-old.” Zoey was 19 months old at that time.

I could feel my heart drop from my chest as I cried. Not just the teary-eyed cries you get when you watch a sad movie — really big tears dropping from my eyes like rain, making my face and shirt wet. I looked at the woman and said, “I’m so sorry… I know that must have been really hard to tell me, I’m sorry, so sorry.” I got up and walked to get a tissue for my face, and I heard her whisper to the other therapist, “That was really hard.” “Yes,” the other woman said, “but you did great.”

You see, no one wants to give or get news like that.

When we finally did see the pediatric neurologist, we had the diagnosis that day.

Follow this journey on the Facebook page Life With Zoey.

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6 Reasons I Have to Thank Autism

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Hi again, autism.

Bet you never thought someone would start a letter to you with something that sounds like a greeting to an old friend. But I guess that’s kind of what you are to me by now. You’re like that friend who drives you crazy, and you try to get to rid of, but in the end you always reconcile and move on together. Now, I don’t ever plan on “reconciling,” per say, but I do plan on finding a way to live with you.

However, autism, don’t think this means I like you. If I could get you to go and stay away, I would. Not because I don’t like my life with you but because of the way people see my life with you. If I could, I would get you to leave, even just for a day, so I can experience being a normal kid. But I get it. I get there is no way that’s going to happen, and I finally understand why it’s not always a bad thing that it won’t.

I guess I do owe you some thanks, autism.  So this is it:

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1. Thank you for letting me see the world in a way a lot of 14-year-olds can’t.

2.Thank you for letting me realize how grateful I should be to my friends.

3. Thank you for showing me how much people will give up for those they care about.

4. Thank you for showing me some of the purest kindness in the world.

5. Thank you for showing me I am strong.

6. And finally, thank you for letting me see how hard my brother’s world is so I can finally learn to understand him a little more.

But don’t forget this, autism — If I ever were to find a way to make his life and mine even just a little more free from your grasp, I would. But maybe, if you’re around to stay, I can use the way I see things now to teach other people how to do the same.

And just so you know, autism, I won’t let you take my brother either. John will in the end be able to have control over you. Maybe he has a hard time right now, but in the end he will always be better then you.

So for now, autism, I will greet you as an old, wise friend with an important lesson to teach. And  I will listen, autism, till a time you have nothing more to say. So thank you, autism, but if you really cared you would give my brother something. Even just a little something.

Sincerely,

Your old friend

A version of this post originally appeared on Life As An Autistic Teenager.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

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My Son With Autism May Never Move Out

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There are things in a parent’s life that gets taken for granted, including the fact that their children will grow up, get educated, get jobs and move out.

But I’ve come to terms with the fact my son will probably never leave home.

At the moment, he’s 5 years old, on the autism spectrum, nonverbal and behind in most of his developments. He needs 24/7 support and care. He’s hyposensitive and demands large amounts of physical stimulation to get any form of satisfaction.

Spinning.

Jumping — on beds, on trampolines, on me.

Dancing (mostly by being held and bounced).

Tickling (hard enough to bruise any other child).

Eating (everything from ice cream to mud).

Making loud noises.

He has no concept of personal safety, and this makes the outside world (also the safety of home) a dangerous place. He will try to touch flames, swallow what looks interesting, climb up anything, run and chase something that catches his eye (cats, sweet wrappers, people, etc.). When upset, he will fall to the floor and roll screaming. This has happened on a main road before.

He’s loving to me and his immediate family. He will hold our hands when out and be led safely. He feels comfortable with people he trusts and knows, but he can also take a shine to strangers (this is a bit worrying).

aiden on log

He thrives on routine, and if that routine is broken, chaos will ensue. If his school bus is two minutes late, he will scream and shout and run up and down the lounge, banging himself into walls and windows to show he’s distressed.

All of this and many more incidents have made me and my wife have the discussion: “What will we do if he never improves?”

This was a short and easy question to answer.

We both agree he’s our son, we love him and we will always be there and do what’s needed for him. The thought of putting him into care is something we both are against (even as he grows older and gets stronger). We will just adapt to his needs as they come. We’ve looked and researched as much about autism as we can, but living through it has been more educational than any book can be. And from what we’ve researched, for us, the only conclusion is that he will be better off living with us.

I’ve long since thrown away the ideas of a relaxed retirement and am now planning for how best to serve my son’s needs. I see articles from parents saying how hard it is to let their child go, but I could not see myself doing this. Yes, I know things will get harder, but my stubborn mindset is fixed. I may be overprotective, naive and scared. But that’s how I feel.

I will do anything to keep my family happy. My son’s future is not yet written, and he could take massive leaps forward, but if he doesn’t then I’m ready. I will always be ready. That’s my mantra.

family photo

This post originally appeared on Autism From a Dad’s Eye View.

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