An Important Letter to My Son With Autism

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image (14) Not too long ago, I shared a story about my youngest son and a conversation I had with him in a moment where he wasn’t doing so well. Today, I’m sharing a letter to his big brother.

Ten years ago, you came to us, this tiny little bundle with your wide smile and knowing eyes. You melted our hearts. To this day, my favorite story is that of mama’s best friend coming to see you the day you were born, holding you, looking at your face and saying, “Does he have a birthmark or something so you know they don’t give you the wrong baby?”

I looked at her and smiled and laughed. “You mean something other than his cleft lip?” That moment is perfect to me because she looked at you and loved you and saw you in your perfection. Because you were born perfectly.

A few short months later, we said goodbye to the wide smile we’d become so accustomed to. I never knew how hard it was to hand your child over to a surgeon. I will never forget those hours you were in surgery having your lip repair. Never. I’ll also never forget the other times I’ve had to hand you over, sometimes screaming and crying, to the nurses who would hold you and care for you in the surgical room.

I will never forget the way  you would look around, seeing the world, exploring the world with enthusiasm and care. I will never forget the way you always had to figure things out before you would play with them. I will never forget the way you loved bugs and had to know everything about them — then came plants, trains, dinosaurs, Pokemon and all things aquatic. I will never forget your thirst for knowledge, your love for your family and animals and reading. I will never forget you walking with the speech pathologist to your appointment and when she said with astonishment, “I’ve heard all I need to in the walk from the waiting room to the appointment. I’ve never heard an 18-month-old with this kind of vocabulary.”  I’ll never forget at the same appointment, her being equally astonished that you knew your alphabet by sight and the letter sounds and that you could read small words.

I will never forget the first time I asked the pediatrician about autism. “He’s too social,” doctors said. I’ll never forget the years we struggled with food aversions. “He’ll eat when he’s hungry,” they said. I’ll never forget the years you had fevers of unknown origin. “He looks so healthy,” they said. I will never forget every time you have persevered. “He’s a survivor,” I said. I will never forget the day I decided to ask for an autism evaluation through the school. “But he’s doing fine,” they said.

Here we are. You are a freshly-turned 10-year-old boy who has the rest of his wonderful life in front of him. I can count on one hand the number of times in your life you’ve said, “That’s not fair.” I cannot, however, count how many times you’ve said, “I love you” to someone. I cannot count the number of ways you’ve made my life better. I cannot count the ways you amaze me. I cannot count the number of times you’ve made me proud.

I know that no matter what you decide to be when you grow up, you will have the drive and determination to make it happen. So many people have the luxury of walking through this world with no real challenges. You? In your ten short years, you’ve faced more challenges than I have in my lifetime. But with each and every challenge, you learn, you grow and you survive. Because of these challenges you’ve already conquered, you are ready. You are ready for more. You will face them head on, with determination like no other human I’ve ever known, and you will come out on top. I know this. I can feel it in my bones.

You, my love, are my heart. You are special. You are amazing. You are you. My hope for you is that you remember these things. That you hold on to the sense of self you have now. I hope you remain true to yourself and your convictions.  I hope you find your people.  Finding your people makes this life so much more bearable.

Find the ones who love you not despite your quirks but because of them. Find the ones who love your sense of humor. Find the ones who love your mind and your freckles. Find the ones who don’t mind you aren’t sporty, the ones who you can talk about books and art and documentaries with.

You, Big Brudder, are destined for great things. I cannot wait to watch you go and get them.

This post originally appeared on Autism in Our House.

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Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store

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Dear Shopper,

Yes, I know. I’m well aware that my child is screaming — not just a regular scream but an ear-piercing, sanity-shattering screech. Even if I wasn’t seeing and hearing it, I would know by the expression on your face.

Clearly, you have raised your children better than me.

That is what you were wanting to say, right?  There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion or better yet — give knowing looks to other shoppers passing by.

I have no doubt that you have wonderful, well-behaved children. Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children. Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.

And I know that you did your best with your children, that you loved them and want all children to have a solid upbringing in which to start their lives. You are, in all probability, a good person. You probably don’t mean any harm.

This is what complicates what I want to say to you. Because, despite my anger towards you, I happen to have been raised well too. I don’t want to be ugly, even though right now I feel like it.

Because I know some of that anger is misdirected. It is misdirected because I, too, have stood in judgment of someone like me. I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children. When I have children, mine will never behave like that.  I, like most people, wasn’t quite as obvious about it as you. I didn’t stare or make comments that could be heard. But I was every bit as decided.  So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.

The nice thing about human nature, however, is that it can be overridden. And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions. Then presto whammo — you are a new and hopefully improved person.

Let me introduce you to my child. Like you, I marveled at the miracle of life upon becoming his mother. Like you, I rocked, burped and inhaled his sweet baby scent and thanked God over and over for the gift of him. Like you, I had certain dreams for my child. There your path and my path diverged somewhat.

My precious child is autistic. Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter. The truth about autism is that it encompasses a wide spectrum of abilities. And, like you and me, every autistic child who has it is different from the next. Yet they do often share some similar traits – sensory overload and meltdowns are one of them.

Every person on the planet has what I think of as an internal alarm system. Most of us have ours in good working order. But some people with autism have what I like to call a hair-trigger alarm system. Theirs can go off with what seems to average folks like little to no provocation. There is always provocation. Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off. And when it does, it’s loud. Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them. When you see me placating my child and giving in to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm. It isn’t his fault. And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.

I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated. It hasn’t been so pleasant for me either. Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do. And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public. I have to leave the house and so does my child. Because I have to teach him about the world. I have to let him practice controlling his alarm system.  So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.

With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children. And for some of us, our dreams will have to change for our children. We may need to re-define happiness and success. For life is like that. We constantly have to reevaluate our expectations of ourselves, others – and, sometimes, even the grocery store.

I’m hoping that your single human interaction with me has given you an opportunity to be a better person. For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me. All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm. You could be the bright spot in our day. And, then, if you want, you are welcome to ask all the questions you want. Your curiosity doesn’t offend me in the least. Most of us aren’t the least bit upset to talk about our kids – any more than you are. If anything, it is an opportunity to educate and dispel myths.

And, maybe, just maybe, you will be standing there when the alarm gets turned off. Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.

Who knows? Maybe I’ll get to see the one hidden behind yours.

This post originally appeared on Flappiness Is…

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To Any Parent Nervous About Having a Baby With Down Syndrome, This Is for You

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A group of families affected by Down syndrome found a beautiful way to put future parents at ease.

Carolyn McDiarmid, 44, from Victoria, Australia, grew up across the street from the family of a little girl with Down syndrome. She later had a close friend in nursing school in Melbourne who had a child, named Harvey, with an extra chromosome. None of this, however, prepared her for the shock of finding out that the child she was carrying also had Down syndrome.

Carolyn McDiarmid and her son Clem
Carolyn McDiarmid and her son, Clem. Photo by Justin Ridler.

McDiarmid grieved for the loss of the child she expected to have and even considered aborting the baby. However, when her son was born, everything changed.

“The fear and the despair lifted,” she told The Mighty in an email. “He was just this beautiful baby who relied on me like my other boys. When I looked into his eyes, I knew it was going to be OK.”

Just a few months later, McDiarmid’s good friend, Angela Blakston, became pregnant and early scans showed she had a high possibility of having a baby with Down syndrome.

The two women shared their experiences with one another and quickly decided they wanted to help other people share their stories as well.

An American publication called “Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives” first inspired McDiarmid. She would stay awake all night reading it and decided they would make a version featuring families in Australia and New Zealand.

They set up a website and contacted all the Down syndrome associations in Australia and New Zealand to put a callout for story submissions.

Replies poured in, and the women picked the best ones and those that showed a diversity of experiences. They also raised $20,000 to publish the book, and on World Down Syndrome Day in 2014, “Now I See” was released.

Check out some quotes from the book participants below. All photographs are by Justin Ridler.

“Caoimhe leaves me notes scattered like wind-blown petals, declaring love.”

Kathy Evans with Caoimhe
Kathy Evans with Caoimhe. Photo by Justin Ridler.

“I thank Kimba for the gift she gave me to understand that sometimes different is a very wonderful thing.”

 “Early on, a wise person said to me that we shouldn’t change our life plans because of Down syndrome, but I didn’t believe them. Now, I do.”

 “We aren’t special, but we are different, because we have Perri in our family to remind us of what is important.”

 “We will always be in Tiana’s corner.”

 “Andy taught us so much: patience, understanding, the ability to go with the flow and to not worry about the things that don’t matter.”

“Phoebe has made a difference to so many family members and friends because of her beautiful nature and attitude to life.”

 “An important thing we have learned from Claudia: disability is only a word for some people without it.”

Craig, Janet & Claudia Coulson
Craig, Janet & Claudia Coulson. Photo by Justin Ridler.

“Now I See” is a non-profit project where all book proceeds are used to print more books to give to new parents and health professionals for free.

“I hope that it gets into the waiting rooms of women’s ultrasound clinics. I hope that parents who are given an antenatal diagnosis get the opportunity to read some of it before making any decisions,” McDiarmid told The Mighty. “I hope that it can provide hope, encouragement and reassurance to families embarking on this rich journey.”

So far, the response to the book has been overwhelmingly positive. The Association for Children with a Disability and the Down Syndrome Association of Australia were both supportive. Down Syndrome Australia recently purchased enough copies to put in their new parent packs.

“If this book can help just one family, we have accomplished what we set out to achieve,” McDiarmid said.

Photography by Justin Ridler.
For more information, or to donate please visit the website

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12 Ways to Keep Your Marriage Strong When You Have a Child With Autism

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I often hear how the divorce rate in autism households is supposed to be astronomical (which really isn’t true) and that many spouses can’t handle the stress of living with autism, and bail out.

But hey, I’ve got an 11-year-old with severe nonverbal autism (our only child) and a healthy relationship with my spouse — so I thought I’d share what keeps my marriage strong and sane.

1) Have an “us against the world” mentality.

You and your spouse are both in this together. The rest of your life is probably gonna be a roller coaster of ups and downs… but guess what? A roller coaster is a lot more fun when you’re sitting next to your best friend. And when you come up against battles along the way with doctors, school districts, family members, lawyers, etc., it’s so much easier to have a teammate, a partner by your side. Also, you don’t always have to agree with each other on every course of action when it comes to your ASD kid, but in public it helps to have a strong united front.

2) Have date nights out of the house as often as humanly possible (a.k.a. It’s OK to be selfish).

I can’t stress this enough to all parents but especially to ASD parents. Before you had kids you were a fun vivacious couple, right? Why does that need to change? OK, when you are down in the trenches cleaning poop off the wall you don’t feel vivacious, but the wife and I try to get out together without our kid at least twice a month… sometimes it’s just dinner and a movie; other times we will meet friends out for drinks or go see a concert… Whatever works for you. I wrote in another blog post about the importance of being selfish.

And sometimes if you can’t afford a sitter you need to be ultra selfish and guilt your family into babysitting by any means necessary. There are some months where we considered getting out for a date night an emergency situation, and we tell the family accordingly.

3) Make room for sex.

Yes, the autism is going to affect your love life big time. But there’s gotta be room for it once in while, right? It may not always be the most romantic kind. We often have a lot of wheeling and dealing and negotiating going on, but it’s worth it. And if you can swing it, for us, there’s sometimes nothing better than using a sick day every couple of months (when you’re not actually sick)… and your kid is in school… if you know what I mean…

4) Get a better sense of humor… quickly.

Life’s gonna really suck sometimes. Your kid is gonna do the craziest things! But if you can just twist it on its head sometimes and look at things and see how bizarrely comical they are, it can really help. I mean, my kid is licking the window! That’s freaking bizarre — and funny!

“Does it taste good?” The wife and I have a warped un-PC sense of humor. We curse like sailors and say to anyone who will listen that we will be thrilled if Kyle’s first words are, “What is wrong with you motherf–kers?” I really feel that our warped sense of humor helps us get through some of the dark times quicker than most.

5) Feel better by any means necessary (a.k.a. “Antidepressants” is not a dirty word).

Really, no explanation necessary… Two years ago I finally bit the bullet and realized that I was kinda depressed and asked for help. And the help came in a little pill called “Wellbutrin.” For me, it did exactly what I needed it to do. It gave me more energy, more patience and let me roll with the punches better. I am still me, but a calmer, less intense, slightly more organized me. My wife went on it about six months later, and it has helped us both immensely. I wrote a separate blog post all about this that goes into a lot more details about my experiences on Wellbutrin.

6) Have solo activities that recharge your batteries.

If you can’t get out as a couple as much as you’d like with the help of sitters, then at least make sure that you each have individual non-autism activities that you can do alone or with friends that will recharge your batteries. I like to run and belong to a running group, and once or twice a year I’ll sneak away with some friends for an overnight running adventure (marathon or relay) in another city. I’m also on my company bowling team. My wife has several different groups of mommy friends, and they are often going out for dinner, drinks, dancing, etc. Encourage your spouse and give her the opportunity to take a break away from autism… and a break away from you as much as possible.

7) Readjust your priorities.

Many men feel like being the provider Monday through Friday is JOB #1, and then spending the weekend doing manly weekend work (yard work, repairs, etc.) as JOB #2. They’re therefore not present for a lot of their kids lives/activities. Maybe an adjustment is in order. Maybe skipping the yard work one Saturday and going with the family to special needs gymnastics is more important and would be more helpful to your spouse.

For moms who have Type A personalities — vacuuming and ironing every day isn’t as important as spending more time with your family. Also for you moms that need to have everything a certain way, you may be pushing your spouse away. So what if your hubby puts your kid in mismatched socks or in wrinkled jeans? At least he’s involved and helping getting the kid dressed!

Just two small examples of readjusting your priorities but there are tons of others…

8) Live in the moment. Try not to look too far behind or too far ahead.

Easier said than done, but oh so important. Try to live each day as it happens. Try hard not to compare it to what happened yesterday or what may happen down the road. ASD kids make progress, ASD kids regress. What your kid did yesterday, he might not do today and vice-versa. Also looking too far ahead can get you in a funk. Will your kid be self-sufficient as an adult? Will he need constant care? Looking too far ahead can destroy you and your marriage. Yes, you need to plan for it financially and mentally, but dwelling on it is deadly.

9) Get rid of the “what ifs,” the “blame game” and the “grass is always greener” syndrome as soon as possible.

I still have problems with this one… Not the blame game so much. There’s no one to blame for my kid’s autism — especially not my spouse. But I often get bogged down in the what ifs (What if I had a typical kid? Would he love watching baseball with me?). And I still have a problem with the grass is always greener syndrome.

10) Yell, scream, have fights with your spouse.

Get it all out right then and there when you are mad about something. It is much healthier than letting it stew and then giving them the silent treatment.

11) Get your ASD kid and yourselves as much sleep as possible.

Your kid not getting enough sleep and being up all night is tortuous for all involved. This may be controversial, but I would say to do whatever you can, as early as you can to get your kid on a normal sleep schedule, and when it’s age-appropriate explore the supplement melatonin (a complete lifesaver for us) and if necessary stronger sleep-aids. Sleep is important for your kids, and it’s important for your sanity and for your marriage.

12) Get off the Internet and sit on the couch and watch TV with your spouse.

You successfully got your kid to sleep. Now get off the Internet. Stop researching that latest GFCF recipe. Stop Googling all things autism. Stop trolling Facebook. Stop reading Autism Daddy. Turn off the computer and veg out on the couch and watch TV with your spouse. Or better yet get, go to bed… And get some sleep…or even better yet have some sex…

This post originally appeared on Autism Daddy.

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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What Makes These Wedding Photos Special Is the Story Behind Them

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When I came across the wedding photos below on Style Me Pretty, I knew I wanted to feature them on The Mighty. To me, they perfectly represent “in sickness and in health.” So does the story behind them.

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Timon & Liz Wang / Liz Wang Photography
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Timon & Liz Wang / Liz Wang Photography

Hollie and Adam Caldwell met in 2009 in Thousand Oaks, California, while Adam was being treated in for what doctors thought was Lyme disease. Hollie was his nurse. By the time Adam was diagnosed with amyotrophic lateral sclerosis (ALS or “Lou Gehrig’s disease), the two had fallen for each other. He proposed to her on the spot, and the couple was married on May 6, 2012. (All photographs are by Liz Wang Photography.)

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Timon & Liz Wang / Liz Wang Photography

As Adam’s symptoms progressed, Hollie took on the role of wife and primary caretaker.

“I was his arms and legs,” she told me in an email. “I transferred him from bed to chair, dressed him, bathed him, fed him, brushed his teeth, cut his hair, combed his hair.”

On October 10, 2013 — 4 years after onset symptoms — Adam passed away. But when photos of the two are still shared online, Hollie hopes for two things: that they’ll make people believe in true love and they’ll reveal the joy that Adam possessed, even as the ALS crept on.

“We got through tough days with humor and love,” Hollie said. “Adam was always cracking jokes, even when he could barely speak. He also painstakingly wrote poems with the one finger he could still use to press a key on the keyboard.”

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Timon & Liz Wang / Liz Wang Photography

Photographers Timon and Liz Wang didn’t know much about ALS when they agreed to shoot Hollie and Adam’s wedding. After meeting with the couple six months before the ceremony, Timon began researching the debilitating disease and realized its gravity.

“I was so inspired to shoot because I knew I was freezing a moment in time that the two would always have,” Timon told me in an email, “and that my photos would be the memories even when all other memories had begun to fade.”

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Timon & Liz Wang / Liz Wang Photography
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Timon & Liz Wang / Liz Wang Photography
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Timon & Liz Wang / Liz Wang Photography

If you’d like to make a donation towards ALS research, Hollie suggests ALS Guardian Angels or ALS TDI. You should also read Hollie’s statement on Style Me Pretty, where you can find even more beautiful wedding photos.

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 Pet Shop Owner Didn’t ‘Get’ My Daughter With Special Needs

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I usually shop at one pet shop. The owner is awesome. She is kind, caring and supportive in the community. This one day I was in a rush and knew I wouldn’t make it to her shop in time to pick up what I needed and get to my 5-year-old daughter’s school for pick-up. So, I hesitantly went to a closer pet shop instead. I felt so guilty, like I was cheating on the good pet shop. But, knew it was an act of Mommy-survival. I needed to pick up two Betta fish to donate to my daughter’s school for the classroom. I was in a time-crunch.

I had my 3-year-old with me, as she had just gotten off the bus from her autistic Pre-K class. She was, as I like to say, “all fired up” —  happy, wild, a mile-a-minute, non-stop chatter, singing and repeating in the car. We got to the pet shop, and I told her what we would do, as I’ve found routine and patterns are key. I said, “Stroller, pick up fish, get your sister.” I said stroller first to prepare her for sitting to be strapped in the stroller. This is so she wouldn’t run away. She looked at me and said, “Fishies?!” I said yes. I said the pattern again: “Stroller, pick up fish, get your sister.” I got the stroller and she went right in – she was intrigued by where we were, as we haven’t been here before. (She knows the other pet store well.)

This pet store was different: Spotless, fancy; it had a candle burning, and it even had homemade dog gourmet treats to buy. The pet store we normally go to is free-to-be. It’s laid back, and the owner’s cat roams the place.

Once we were inside this posh place, I found the fish, and we picked two. Betta fish are so pretty. I let my daughter pick the fish, and she did so by color: “Blue and red.” Simple and easy enough. Or so I thought.

beta fish (1) Betta fish are deceiving. So pretty on the outside. So fancy. But put one in tank or bowl with another Betta fish, and they will fight until one of them dies. Not. Very. Nice.

I put the Betta fish on the counter to purchase, and next to the register was a bird cage. The bird  inside of it was carrying on. My daughter was scared and fascinated all at once. She didn’t like the bird making that noise and told the bird how she felt: “No, bird!” “No, bird!” “Stop!” She then did these brief yells at the cage as if it would make the bird stop  chattering. The owner came to the register and said — appalled — directly to my daughter with her finger pointed out, “No! You can’t do that! You will kill her! She could have a heart attack or a stroke! You can’t scare birds like that, now please stop it!” I was immediately annoyed. Do I have to get into a fish bowl with you, lady? Because I’m suddenly feeling like our friends “Blue” and “Red” here.

I immediately shifted my tune because of my daughter’s response. She just yelled louder, which was at the moment, comical to me, because she knew this lady didn’t “get” her. I said to the woman, “My daughter doesn’t understand a word you’re saying to her. She has special needs. She isn’t doing any of this to intentionally hurt your bird. I promise you. If you can ring us up, we’ll be out of here.”

She then said, “Really? She doesn’t look sick. She’s beautiful. She doesn’t look at all like a special needs child. She looks fine! She talking and  looking right at me!”

Now I’m really getting all Betta…

I hear this all of the time, and it’s so offensive. I know that people mean no harm but what exactly does a special needs child look like? Are they supposed to not be cute? Are all autistic children exactly the same? It kills me when people say this. Kills me.

She then said, “The bunny behind you is really tough, nothing bothers it, if you want to put her in front of the bunny yelling instead.”

At this point, I’m just completely entertained by this whole experience. The woman then started to talk low and soft to me, as if she is trying to console me and keep my secret.

“You’re daughter is just so beautiful. What’s wrong with her exactly? I will pray for her.”

I asked the woman how much the fish are and paid her. She gave me an informational sheet on her store and said to “Like her store on Facebook.” (Oh. My. Goodness.) Behind me I heard my daughter talking to the bunny. It was really funny. She threw her blankie at the cage, and the bunny was just staring at her. What no one realized was that my daughter was actually being sweet. Giving her blanket to any person or animal means she likes you. She was trying to give the bunny her blankie.

addie pic (1)

I turned to my daughter and said, “Ready to get your sister?” and she screamed in delight “Yea! Sisters!”

The owner than said to me, “Now remember, those Betta fish can’t be together in the same bowl.”

I had to bite my tongue as I wanted to say to her, “Neither can you and I, sweetheart. Neither can you and I.” But I nodded my head and smiled and walked out past a lit candle ironically named: “Peace.”

This taught me two good lessons: 1. There are a lot people who still need to learn about special needs children and families and 2. Only shop at the pet store with nice lady and free-to-roam cats…

Lesson learned.

This post originally appeared on Addie’s 4Ever Friend.

Read more from Samantha Gill on The Mighty:
Why I Let My Daughter Rearrange the Chairs in the Waiting Room

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