17 Things I’d Tell Myself Before My Son With Autism Was Diagnosed

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Some of you reading this might be at the beginning of your journey with autism, or you might be further along than me. Maybe you have family members or friends whose lives are affected by autism in some way, or maybe you work hard each day to teach our kids in schools and colleges.

But each and every one of the kids who has brought you to this blog is uniquely wonderful, and so we’ll all have different journeys ahead of us no matter what. But I think so much of what we go through leaves us feeling similarly — confused, joyful and overwhelmed, to name but a few.

So wherever you are on your journey, know you’re not alone. Yes, things might be tough sometimes, but there’s so much more good stuff about autism than you may realize.

In fact, I was just daydreaming recently about having the power to time travel like Marty McFly of “Back to the Future.” What if I could go back in time and tell myself what I know now?

So bear with me on this one, as you’ll need to use your imagination a little. I’m going back a few years to tell the Michelle of 2007 a little of what the Michelle of 2015 now knows.

1. Acceptance and trusting your instincts will come with time. Michelle, it will take you a long time to accept what’s happening with your son. But I wish you could trust your instincts because your gut feelings are always right, and you’ll get better at standing up for your son as you learn to fight the system.

2. Never compare your son to other kids. Each child is unique and yes, they all have similarities, but he’s his own person. Your son may not join in all the activities like other kids do, but that’s OK. His talents lie elsewhere, as you’ll discover in the future!

3. It will feel like you’re on an emotional rollercoaster. No advice for that one, I’m afraid, but just know there will be good days and bad days. Just make the most of the good ones, because when they’re good, they’re really good!

4. Your priorities and goals will change. Your life can’t be mapped out now like you planned, and you’ll learn to accept and embrace that in time.

5. Home will become your child’s sanctuary. It’ll be a safe place where he can let off steam and be himself. And sadly, Michelle, you and your family will be judged, prodded and poked because of that. But your life does have to be different from the “norm.” You’ll learn not to care what others think about this.

6. Invest in ice pops. Your son is going to keep the supply and demand chain of ice pops in business for the foreseeable future.

7. People will judge you, but you’ll eventually learn to remove people like that from your life. Don’t carry baggage you don’t need. Everyone’s story is unique and no one really knows how it feels to be in the other person’s shoes.

8. There will be jumping, lots and lots of jumping. Jumping on the trampoline, on the bed, on the sofa, in the car, on the tables…

9. Please be kind to yourself. Things are going be tough at times and you’ll make mistakes, but that’s OK. You’re not superhuman. Look after yourself in order to look after your little man.

10. Don’t sit in meetings letting people tell you what’s best for your son. You know him better than anyone; you will learn take control of his future and not be so afraid to become “that mom.” He needs you to stand up for him in those meetings because he can’t do it for himself.

11. Your kid is not naughty; he has autism. They may appear as one and the same to some people, but you’ll develop a thick skin to that. It will still hurt when people don’t get him, but you have to accept that some people never will and move on.

12. Pajama days are necessary. Some days you’ll need a pajama day so you can watch Netflix and eat cake all day.

13. You and your son’s lives will be dictated by routine. You’ll plan days weeks in advance. You’ll approach his six weeks off from school like a military operation, with color-coded whiteboard pens, Post-it notes and cupboards full of white foods and ice pops.

14. Sensory issues will become a big part of your life. He won’t eat that, he won’t wear this, it’s too loud, that place is too busy, he likes to bounce, he hates brushing his teeth, etc. You’ll become a sensory-issues expert.

15. Your love for your kids is unconditional. No matter what happens, you’ll always have unconditional love for your kids.

16. Vodka and cola with ice and a slice… enough said!

17. Friends and family will get you through. They will laugh along with you on those amazing days when things are going well, and  they’ll be there to pick you up when things don’t go as well.

What would you tell yourself if you could go back to the future?

Follow this journey on A Slice of Autism.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to community@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Why ‘Is She Your First?’ Isn’t a Simple Question for Me

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Someone asked me a question the other day, a rather ordinary question: “Is Poppy your first?” The problem is it’s not a simple question for me, and it’s something I’ve had to get used to over the past three and a half years. Mostly I have a little way of saying the truth, but quickly — like pulling off a BandAid — so the other person doesn’t feel too awkward and scramble for something to say.

You see, no one expects you to say you have a baby who died; they’re expecting a quick exchange where everyone has some children, we all go “aww” and then we move on. But unfortunately, that’s not my truth, that’s not my story and I can’t lie — most of the time.

Poppy

It made me think back to when I was pregnant with my second daughter. A question like “Is this your first?” would send my mind whirring, trying to work out what the hell to say back. I would think: Are you worthy of hearing my story? Do I want to go there? How will I feel if I lie about this pregnancy being my first? What would Evie (my first daughter) or others think of me if I lied and feigned being a first-timer? How much time do I have? Who can hear what I’m saying — is this an appropriate place to talk about dead babies? You can see there was a lot to balance.

Then when I was going along to playgroups and starting to meet other new moms with my second brand spanking new baby girl — motherhood mark two — I often wished dearly I’d had a leaflet printed with my story neatly summed up with bullet points for easy reference. I could sadly shake my head and silently hand them the sheet of paper that said what I could not.

I remember once while going for a walk around our little town with baby Poppy, I decided to indulge my weakness for penny sweets and set off to the shop. That makeshift shop, cobbled together by its owners, was the perfect treasure trove to browse on a lazy afternoon stroll. As I selected and filled my paper bag with sweetie treats, an old lady — one of the staff — cooed over my delightful bundle of joy and asked if she was my first. Unsure of what to say and beguiled by the sweet perfume of confectionary extravagances, I panicked and admitted that no, she was my second and that my first baby died.

Rather than being shocked into submission, she began to ask a series of intrusive questions that rather stunned me. Questions like “Do you have pictures of the baby?” and “How much time did you spend with her?” floated around the little shopkeeper’s head like absurd speech bubbles. It felt like an out-of-body experience. I hurriedly paid for my sweets, their appeal now lost in the haze of conjured memories filling me up instead of sugary fluff.

I felt mauled as I staggered down the road pushing my baby, stuffing sweets into my mouth to stop from crying out that honesty should not be this painful. I decided I could say my second was my first in all future scenarios of this nature and vowed it would not matter to my firstborn – she would understand, if I could ask her.

I understand the lady was probably trying to be nice and sensitive by asking what others feared to probe, but I’m afraid I didn’t see it that way. The upset it caused me could not be justified by what I gained from it, and so I have strived only to discuss my story with others when I need support or feel able to answer their questions.

As the years have passed, I’ve developed a repertoire of scripts (mentally written and memorized sentences that describe what happened) to help me explain the unimaginable; they range from a 5-minute vignette to a saga lasting about an hour. It’s about self-preservation; “What’s the cost to me?” has become my new mantra. It helps me detach from what I’m saying in order to get through saying it.

So now when asked the question, “Is this your first?” I feel more confident in saying the truth. I can reply, “No, I have two daughters, but my first daughter died just after she was born.” I find it the simplest and quickest way to share my story — it has the salient facts and not much more. There’s no emotion either, which helps I think; they have no idea the cliff we’ve just jumped off when they ask me that question and by keeping the response minimal, it softens the landing. People can take what they want from my statement and usually their response is along the lines of, “Oh I’m sorry to hear that.” And often that’s all they say, which is OK — I’m sorry, too — or they fumble around for something deeper to say. The main consequence of conversations like this is that I end up swooping in to save them and trying to lessen the blow of my words, still hanging in the air above us like a threatening rain cloud, ready to rain on our pleasant conversation at any moment.

At first I really wasn’t OK with that. Why should I shield them from the horror I went through? They’re lucky they only have to listen to it; I had to live it. But over time my bitterness and anger at the world (because that’s what it really is) lessened, and my endless questions of “Why me?” have quietened. I don’t need to take it out on others anymore, so I can talk about my experience more openly and less defensively.

I’m more comfortable with my story now. I’m used to it now, so perhaps it’s starting to sink in that this is a part of my life story that I must weave in rather than try desperately to deny or reject. It’s a horror film I’ve seen hundreds of times — I know the scary bits, the bits to look away and leave the room to make a cuppa. I know the ending and over time I feel the raw shock has worn off sufficiently that I can cope with other people’s shock better.

The truth I’m coming to terms with is that it happened. My daughter was real and she died, and I have to learn to live with that if I have any hope of living life to the fullest without her, because of her… for her.

Evie

Follow this journey on One for Sorrows Twos for Joy.

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What the Medical Marijuana Debate Is Really About

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Julia, 8

The debate goes on — yes or no to medical marijuana?

As a parent who is currently giving my child medical marijuana for epilepsy, it’s hard for me to understand the resistance. The answer seems so obvious to me: why wouldn’t we try this?

But yesterday after reading responses to another mom’s blog on this topic, I started thinking that maybe the resistance is because people misunderstand our cause and misunderstand what this whole debate is really about. That is the only way I can make sense of the people who are looking in from the outside shaking their heads and poo-pooing this treatment option for reasons that seem either irrelevant or ridiculous to us parents. To me, the only way these comments make sense is that these people are entirely missing the point.

And the point is this: this debate isn’t even about marijuana; it’s about our kids! It’s about epilepsy! It’s about desperate parents looking for additional treatment options for our precious kids suffering through epilepsy. Period.

If you think those of us speaking out and fighting this marijuana fight are doing it because we love marijuana so much, you are wrong. We love our kids. And therefore we love anything that helps our kids. And right now marijuana is helping my kid. If kangaroo dung was shown to stop seizures, then you would be able to go ahead and consider me a lover of kangaroo dung.

Some have suggested that we marijuana parents aren’t being honest about whether or not marijuana is really working for our kids — that we’re enhancing reports on it’s effectiveness and lying about seizure control. I find this to be so insulting. Again, the only way I can make sense of someone saying something like this is that they fundamentally don’t understand what it’s like to have a child with epilepsy. They don’t understand this whole movement is about saving our kids from a devastating and deadly condition and that marijuana just happens to be one option showing some promise in helping our kids.

I know people who have moved across the country to Colorado and are camping — yes, camping — to try this treatment option for their child. Do you really think they would choose to camp over being in their own home if they didn’t think it was helping? I know families living separately with one parent in their home state working while the other parent is here living in temporary housing with their child because medical marijuana is the only thing that’s reduced her seizures. You think people would do that out of loyalty to a treatment option? No, they do this for the love of their child. You don’t make this type of sacrifice for a lie.

My allegiance is to my daughter Julia, not marijuana. I wouldn’t stick with something that doesn’t work because I so badly want her on marijuana — that doesn’t make any sense. What I so badly want is for her to 1) not die from a seizure and 2) not be miserable from the side effects of the drugs we give her to stop the seizures.

So if marijuana isn’t working or stops working, we will move on to the next thing that might help her. But we will also keep fighting for every other family to have the chance to find out if it might work for their child.

Haleigh’s Hope: 23:1 CBD to THC

Seizures are tricky, folks, and perhaps that’s another thing non-supporters don’t understand — seizures keep finding a way back, especially for the population I’m talking about here. I’m not talking about a child who had one seizure as a baby because of a fever. I’m talking about kids who have been experiencing seizures daily for their entire lives. For these kids, seizures are relentless and they keep coming back. Therefore we have to keep trying to find new ways to fight them off. Right now, there isn’t a cure; there is only treatment after treatment, and so we need a long list of treatment options. We need a deep bench. I believe everyone in this battle should have the right to add marijuana to their list of options — again, not because we love marijuana but because we love our kids.

We’re not talking about marijuana with the general public is not to change minds. I honestly don’t care if I change your mind about marijuana. Feel the way you feel about it. No, the reason we’re going public with our stories is because we have to try to change your mind about allowing it to be an option for families like ours. I don’t think your dislike or doubt or need for more evidence should to have the power stop families like ours from being able to try and save our child. We want the ability to try. That’s all we are asking for.

For those of you claiming you need more research to be convinced, we don’t have time for the years and years of research you require to give us your blessing on this issue. What will years and years of more research do for us anyway if you really think about it? It will give us a big, fat, inconclusive maybe. “Maybe this drug will work for your very complicated child.” Which is exactly what we have now with every other drug out there to treat epilepsy — we have a “maybe.” Maybe Keppra will work, maybe Topomax will work, maybe Sabril will work, maybe Banzel will work, maybe Valium will work, maybe Lexapro will work, maybe the keto diet will work, and on and on and on. These options have years of research behind them, and guess what we still get? A maybe.

So why would you require us to sit around twiddling our thumbs, watching our children seize, their lives at risk with every single seizure, just for the research to confirm what we already know — everything is a maybe.

Please, when you hear this argument and read our stories don’t make it about your personal feelings regarding marijuana; make it about these kids, make it about access to treatment, make it about the right to try, make it about parents trying to save their kids’ lives. And if you’re brave, maybe for a moment make it about you or someone you love being in our shoes. Wouldn’t you want people to give you the right to try?

You don’t have to love it, you don’t have to agree with it — but please do not block it.

Follow this journey on I’m Julia’s Mom.

Do you have a story about your experience with epilepsy? Please send it to epilepsy@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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When Life as a Special Needs Mom Feels Like a Game of Chutes and Ladders

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Our family’s life is often like a never-ending game of Chutes and Ladders. Do you remember that game? You land on a “good” square and get to climb a ladder. If you land on a “bad” square, you slide down a chute. First one to the top wins.

Except this game never ends. There are no winners or losers. We’re all playing this game, and sometimes we land on good squares and sometimes bad ones.

I only like to talk about the ladders we take. The days we climb higher than we thought we would are the ones I like to focus on. But there are days we hit those chutes and we hit them hard. We slide down and it’s awfully hard to keep rolling that dice. But we do because, well, there really isn’t any other choice.

Today is a chute day. It started out as a ladder day, but we’re definitely sliding down some chutes.

The Bird (my daughter) woke up and was sweet, Muppety and glorious. She snuggled, loved us, smiled and made eye contact. We had fun conversations, made up songs and played games. We were climbing up those ladders.

Then lunch happened. She has been a little enamored with beans lately. Beans for every meal. This girl likes her legumes. So I made beans — homemade baked beans with all kinds of wonderful goodness in them. She even helped. We followed my aunt’s recipe last night, and we were so excited to eat them today.

First, it was cereal with Daddy for a late breakfast, then applesauce and then lunch time. Beans and eggs. I got it, Bird. I scooped up some delicious beans and put them on her plate while I was scrambling her egg.

Suddenly, beans were everywhere. Beans in my hair. Beans on the counter. Beans on the cabinet doors. Beans in Bird’s hands. She stood facing me and screaming — not any words — just a scream. We were now beyond the point where she could talk and entering the danger zone of aggression. I shut off the stove and picked her up, covered in beans, and brought her into another room to get away from the stove and things that could be easily thrown.

After lying on top of her (weight calms her down) and softly singing, she let me know she didn’t want those beans. She wanted her beans. Just a regular can of pork and beans. It was a chute.

So I made her her beans and finished her egg. But wouldn’t you know, she wanted an egg white (they are easier for me to eat and as fate would have it, she loves them, too).

And then more chutes. She wanted to go swimming, but it was raining. Even more chutes, and it’s only 1:30 in the afternoon. Today might be a day full of chutes. We will slide down, down, down.

I may end up in the middle of the floor tonight with my arms wrapped around my legs and crying because of the frustration my girl is experiencing and knowing there’s nothing I can do to fix it. There are no days with only ladders. None. But there are days with less chutes. And while playing this never-ending game is not a choice, this is what I can focus on. This life of epilepsy, autism, Ehler’s-Danlos syndrome, feeding tubes, medicines, therapies and dreams deferred is not a choice.

However, focusing on those ladders and those tiny climbs (and big climbs) is a choice. Today there are more chutes. Tomorrow there may be more ladders. Either way, I know what I will choose to focus on.

Kris Giesen the mighty.1-001

Follow this journey on Birds in the Nest.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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.

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The Faces of Special Olympians Entering the World Games Opening Ceremony

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On July 25, 6,500 athletes from 165 nations gathered for the Special Olympics World Games Opening Ceremony in the Los Angeles Memorial Coliseum. These games celebrate the abilities of individuals with intellectual disabilities, ages 9 to 77, from around the world. We’re Mighty proud of these athletes.

Take a look at some moments from the Opening Ceremony: 

1.

Puerto Rico
Puerto Rico

2.

Vietnam
Vietnam

3. 

South Africa
South Africa

4.

New Zealand
New Zealand

5.

Morocco
Morocco

6.

Mexico
Mexico

7.

Luxembourg
Luxembourg

8.

Laos
Laos

9.

Korea
Korea

10.

Korea
Korea

11.

Italy
Italy

12.

Isle of Man
Isle of Man

13.

Hong Kong
Hong Kong

14.

Great Britain
Great Britain

15.

France
France

16.

Costa Rica
Costa Rica

17.

China
China

18.

Cayman Islands
Cayman Islands

19.

Canada
Canada

20.

Brunei Darussalam
Brunei Darussalam

21.

Botswana
Botswana

22.

United States of America
United States of America

Photo credit: Veronica An

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12-Year-Old With Down Syndrome Saves Sister From Drowning

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The Richardson family has had a pool for 16 years. In all that time, mom Tomarra Richardson swears they’ve never had a safety scare. “But in a split minute all that changed,” the Mundy Township, Michigan, mother of three tells Yahoo Parenting, describing how her youngest child sneaked into the pool and began drowning on July 23.

Three-year-old Jac’Lynn “attempted to get in her swim tube in the pool and went through to the bottom,“ Tomarra told ABC 12. And the preschooler — who’d followed her 12-year-old sister Carin back out to the pool after their family had finished playing — couldn’t swim.

STORYMan Saves Drowning Girl ‘Nobody Else Even Noticed’

“Without panic or fear,” Tomarra told the TV station, “[Carin] grabbed her goggles, got in the water, and pulled her sister out of the pool and into the house.” Tomarra immediately helped Jac’Lynn cough up some water as Carin’s elder sister, Krystal Bishop, called 911. Carin “was our hero — she saved her sister’s life.”

STORY2 Olympic Swimmers Who Drowned as Kids Share Their Scary Stories

Jac’Lynn Richardson in her family’s pool. (Photo: Tomarra Richardson)

By Jennifer O’Neill

Read more from Yahoo Parenting:

 
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