I learned this the hard way, as one child after another gained new diagnoses over the years. I was sure nothing could scare me anymore.

But I was Wrong about New Diagnoses

We’d seen it all. Our kids had every combination of some kind of A-B-C diagnosis out there.

And yet, when faced with yet another one, and more questions besides … I was terrified. Frozen. Unable to focus.

This year, Logan added a new diagnosis to his already-long list: Miller-Dieker Syndrome. It’s another chromosomal disorder, though not genetic.

I read link after link (Google and I are real close), and by the time I read about life expectancy I was done. I was in that “ba-ba-ba-ba-ba” phase (from the movie Overboard?) I couldn’t read anything else.

Let this be your warning to never Google rare disorders unsupervised.

Miller-Dieker Syndrome

Logan was missing a very small part of a specific chromosome. That small missing part was enough for the Miller-Dieker diagnosis. But most of the kids diagnosed have larger portions missing. This difference means Logan shouldn’t have as many of the more severe symptoms. Or the (very) shortened life span.New diagnoses, especially when added to the hodgepodge of rare disorders, epilepsy, autism and so much more … will always be scary. I can admit that now. Being strong isn’t always about being able to handle everything life deals you with a smile and a quip. The accepting … that might be the part I can say we’re real good at. But the emotional toll of yet another diagnosis after 18 years’ worth of them?

It’s hard.

[Warning, religious sentiment ahead]

I’m a Christian, as such I find my greatest comfort through reading His word and praying. But in the chaos of trying to adjust to new things, I sometimes fall down. Reminding myself that He is there, while reassuring, doesn’t always help me deal with the here and now. I know that breaks some rule somewhere, but I’m human, and I’m sure He understands.

One of my favorite aunts used to ask me “God has this! Why do you keep grabbing it back after you’ve given to him to hold?”

See, when we pray and ask Him to handle something … to ease our pain, to allow us to accept the unacceptable, to help us focus before coffee (what? Don’t judge!) … that means it’s done. He will take over caring about that worry, that fear, whatever it is. So we don’t have to worry about it anymore.

It’s a promise from His Word:

Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?”
Matthew 6:25-26 (NIV)

Matthew 6:25-26 (NIV)

If He cares about a sparrow having food for the winter, then He’s got these other, far weightier, things. Why, then, do we worry  so? Why are we paralyzed by fear in these kinds of moments?

Why, when researching a new diagnosis, do I take a deep breath and pray desperately for Him to give me peace. Then turn right back around to searching through and reading more of those darn links?

Maybe it’s human nature? I’m pretty sure you don’t have to be a Christian, or religious at all, to understand a sense of worry that permeates your very soul and makes it impossible to stop worrying? Or at least make it seem that way.

You’d think over the last 18 years (don’t start counting how old I am!) I’d have learned a thing or two about how to adjust to the un-adjustable in life.

And I have, in lots of different ways.

But in others, I still worry. I still wring my hands. I still lie awake at night. And I still pray for Him to give me peace, to help me be the best mom I can be, to help our not-so-little guys be the best they can be.

Are Some Diagnoses Easier on Us than Others?

We learned about the Axenfeld-Rieger Syndrome first, and the unknowns were the most terrifying thing to me (in a time before Facebook and Twitter …)

Later on, as we dealt with new diagnoses of autism and epilepsy, I found epilepsy far scarier. Epilepsy and autism, while scary, were nothing compared to the unknown of that darn rare disorder. As each boy was diagnosed with epilepsy, autism, Axenfeld-Rieger Syndrome — I learned while the diagnosis is hard, what comes after is usually harder.

What Comes After New Diagnoses?

Research. Readjusting expectations and dreams. Being realistic while still being hopeful. Breathing.

The chaos of a new diagnosis is measured and expected – after all, you want to learn as much as possible. You want to know how to help your kid(s).

I thought I understood what it meant.

But Logan’s newest diagnosis made my inner peace turn into turmoil instead. Every time I thought I grasped it and could handle it, I turned right back around to worrying again.

It didn’t help that the newest diagnosis was also very rare. Or that it was usually fatal.

Miller-Dieker Syndrome.

At this point it doesn’t sound as scary to me. I understand the specifics. I can recount the technical reasons why our youngest doesn’t ‘technically’ have a severe form of the Syndrome. But we’re still adjusting to this new diagnosis, and we have more questions than answers. More fears, too.

Maybe it’s the unknowns, not the diagnoses themselves, that stick with us.

I don’t know, but the moments of diagnosis were never as scary or as all-encompassing as the ones that come after. Learning to cope, learning to deal … learning in general, really. A whole new reality comes from every diagnosis, and you have to adjust to that.

Every time you have a new diagnosis, you have to learn all over again. And you have to feel. And you have to cope.

But, above all else, you have to hope.

Even in the storms of life.

There’s more to come from our journey, but now I’d like to hear about yours! What have you learned about new diagnoses in your own life? Whether you are a caregiver or not, we all face them at some point or another, don’t we? How do you (or did you) find peace after that?

PS: If you came to this post because you’re hoping to learn more about Miller Dieker Syndrome, I’d like to tell you that you aren’t alone, and there are many reputable sites (Here’s NIH, for one: https://rarediseases.info.nih.gov/diseases/3669/miller-dieker-syndrome ) you can learn more from and even groups where you can learn more from other parents (here’s a Facebook group you can connect with: https://www.facebook.com/groups/taycecru/ ) .

PSS: If you aren’t familiar with the “sparrow story” in the bible, it’s one of the more-often quoted scriptures from the Bible, and I don’t think you have to be Christian to find comfort in it. You can read a great devotional about it at Proverbs 31 Ministries. 

The post New Diagnoses are Hard, How to Find Peace in the Storm appeared first on Kat's Cafe.

I don’t remember a time in my life that hasn’t been colored by depression. (In fact I don’t remember much of my life, but that’s a story for another post)

None of us are infallible. Sometimes we crack. Sometimes we break. And sometimes we give up.

When the weight of the world feels like it is on top of you, every day, it is humbling, humanizing, even embarrassing. When you’re depressed, these normal human emotions and feelings can overwhelm you to the point of inaction (or sometimes of the most horrible of actions).

I’ve been struck, sometimes, by how moments within our favorite shows touch on our own realities.

Depression and Buffy (yes, the show)

I fangirl over a few great shows. If you remember the Buffy television show, you might remember a moment late in the 5th season when Buffy admits she gave up.

To recap: Buffy is catatonic after her sister was kidnapped by the big bad of the season so Willow has done a spell that allows her to be inside Buffy’s mind. Willow wanders through significant moments in Buffy’s life and comes to a paradox — which is the innocuous memory of Buffy placing a book on the shelf in the Magic Box.

Confused, Willow asks why this scene is important and Buffy breaks from the memory to explain. She says this is ‘the moment’, the exact moment, in her heart, she gave up hope of defeating Glory. She thinks that’s why Glory was able to get to her sister and why her sister will die.

The dialogue reminds me of what many of us going through depression must feel like:

BUFFY: I felt it. Glory will beat me. And in that second of knowing it, Will…
I wanted it to happen.
WILLOW: Why?
BUFFY: I wanted it over. This is … all of this … it’s too much for me.
I just wanted it over.

…

WILLOW: You’ve carried the weight of the world on your shoulders since high school … And so, you wanted out for one second. So what?

Dialogue From Buffy: The Vampire Slayer, Season 5, Episode 21

Dramatic stuff, right? Dramatic, because we feel that moment so acutely. We’ve all felt like giving up, haven’t we? And if you’ve ever experienced depression, you truly feel that thought — that the world would be fine without you, that you don’t matter, that no one cares.

I’m not in the world-saving business, and I certainly am not the chosen one, but I’ve found myself in that headspace.

I’ve given up.

Oh, I can’t trace it back to a specific moment, like Buffy, but I can trace it back through years of lying. Lying to myself and to others. To you.

Years of being caregiver for three boys and a husband with a rare disorder. Of being the chief advocate for these guys. Of dealing with seizures and meltdowns. Of learning CPR so I could give it to my son in the middle of a seizure.

It takes its toll.

I have struggled with depression for years. I’ve always fought the good fight, tried to stay positive, tried to support others. Until I couldn’t.

I couldn’t write. I couldn’t encourage others. I couldn’t even think straight.

Just like Buffy, I gave up. And rather than face those demons, I flirted instead with the idea of just never writing again. Because I didn’t want you (any of you, out there reading) to see the real me.

Rather than tell you about the very real struggle I’ve been facing, and rather than admit that I’d given up on ever feeling okay again, I locked myself away.

In doing so, I tried to give up the larger war. I didn’t just struggle to be positive for a moment here and there; I fought to hold onto dreams, passions, my very life.

And I lost battles here and there. Days and weeks and months and even years blended together while I simply survived.

I held on for dear life and I survived, because I couldn’t fathom doing one. Extra. Thing.

I gave up. I didn’t tell anyone about it because … well, I’m not sure. Maybe it was easier? Maybe I just didn’t have enough energy to try and be honest? Or maybe, because I didn’t want to associate my own personal demons with the very real pressure of being a mom. Or to the very real, and sometimes overwhelming, call to do things perfectly.

Well, guess what. This is me. I’m real. And sometimes real people have issues. They deal with things in unhealthy ways. They make choices they shouldn’t. They withdraw from the good things in life because everything feels too overwhelming. Real people deal with depression.

An Important Caveat

Depression is a mental illness — and while it reacts to the awesome and the horrible things in our lives, it doesn’t depend on those things to assert itself.

I am not depressed because I was blessed with three amazing guys to raise or because my husband has health issues, or even because I didn’t get enough hugs as a child (I threw that in; it’s probably not true). I’m depressed because that’s the nature of the beast.

Sometimes people get depressed. It sucks. You do what you can to deal with it, to cope with it, and to move forward from there (notice I didn’t say move on).

I gave up. Not in one moment, but over many moments, years’ worth of them. Depression won out for a while. And when I could finally fight again, I still didn’t have enough in me to write about it.

I’m still depressed. Not as badly as before. But it’s still a part of who I am. It always will be.

But I Am Done Giving up

And I’m done hiding. From now on, what you see is what you get.

I can’t guarantee it’s always gonna be pretty. But it’s 100% me.

I encourage you to take a deep breath and consider whether you’re sharing the real you. 100% real. It’s far too easy to try to present the positive all the time when we live so much of our lives online.

But folks, that’s just not the truth. It’s not real.

We’ll never be able to measure up to that standard. But we don’t have to give up on living.

One Last Thing — Having Faith and Depression

When I was younger, I used to think I was a horrible Christian because I was depressed. Our friends and family can use our faith against us, purposely and inadvertently.

When we’re already hurting, hearing some variant of “…if our faith in God was just a little stronger…” doesn’t help us draw closer to Him. When we’re in crisis, it’s very hard to get down on our knees and pray for the help we so desperately need.

I encourage you to hold to your faith, even if you find it difficult. It’s through the storms of life we realize we need Him the most, sometimes.

You CAN be a Christian and still be depressed.

Repeat that if you need to. I’ve dealt with the gamut of supportive to unsupportive folks in my Christian family when I admitted feeling depressed.

If you’re a Christian and have struggled with depression — you aren’t alone. I’m right there with you. I can tell you that many times it was only my faith that kept me partially grounded and able to face the next day. And the one after that.

I don’t think it makes me a failure of a Christian or even that it shows that I am unfaithful.

Instead, I think it shows I am human. And so are you.

I know that not everyone is a believer, and that’s okay, but I wanted to put that out there. As sad as it is, I’ve heard it far too often to ignore.

A few notes — on Reaching Out

If you (or someone you love) are depressed, I urge you to find help. Unlike Buffy in Sunnydale, most of us can’t just ‘magic away’ depression. Most of our issues aren’t solved in an hour of witty conversation and angsty tears.

It’s an ongoing battle. There are a LOT of places you can get help, though. From reaching out here (seriously, comment, and I promise to listen!) to finding a safe place to chat with a counselor online or by phone, you can take steps to feel better.

Here are a few resources to get you started:

• The Crisis Line, online and they have phone numbers listed.
• What’s Depression and When to Seek help by the NIMH (National Institute for Mental Health)

I can’t overstate enough that if you are in crisis and think you could hurt yourself or someone else, seek help now. 9–1–1 is always a valid option in a crisis.

In Conclusion

So … this was a bit of emotional craziness in an already crazy world, right? I have been working on this post for weeks, writing and re-writing this section or that section because I wanted to be honest — but wasn’t sure I should be ‘that’ honest.

And I’m done.

This is me.

What you see is what you get.

I urge you to be honest with yourself and with others about how you are feeling. If you are giving up, or you feel you’ve lost one too many battles in your own personal depression war, DON’T GIVE UP!

I promise, being honest with yourself is hard but freeing. Give up for the moment, but get back up again to fight the next battle in your own personal war.

The post Surviving the Ultimate War with Depression appeared first on Kat's Cafe.

When Suzanne Wright penned her opinion piece for Autism Speaks last November, she didn’t inspire me to action, she didn’t help anyone understand the spectrum of Autism, she didn’t help autistic people (adults or children) feel valued and respected.

If you haven’t read the letter you can Google for it, I refuse to link to it. I know there are some parents who feel Autism Speaks really does speak for them and their experience in dealing with autism. But after seeing her words literally call my kids a tragedy, imply that they are missing, imply my kids and others who happen to be autistic are singlehandedly destroying their families, their parent’s marriages …

I was convinced that someone somewhere at that organization had lost touch with the Autism I know and love. And they don’t know the autistic folks I know – because the adults and children I know, including the ones I adore and love and call my own – they are amazing, beautiful and unique people.

Respect our Differences – even our Differences in Opinion

I found, over the weeks and months that followed, that I was increasingly sensitive to the negativity, the almost dehumanization, that seems to accompany some forms of autism awareness. Even some parents would use words to describe their experience that made me flinch. Maybe they were having a bad day, or they were just at a different point in their journey, but it made me increasingly uncomfortable.

Why was I so sensitive?

Not because their experience of feeling overwhelmed was wrong … it’s not about being right or wrong … it’s because the negativity was becoming harder for me to deal with. I actually wrote a friend in a panic wondering if something was wrong with me. I found myself upset by these posts because they seemed to be all I was reading.

Let me reiterate that there’s NOTHING wrong with parents venting and dealing with their experience in their own way. And sometimes I vent too …  BUT I follow a few rules …

Our Rules of Posting:

1. I don’t share deeply personal things in a public forum  –  when I post something or ask for prayer I won’t always include all the details (sometimes even friends-only can end up letting a LOT of folks see that private post).
2. If I share something about my husband or my kids publicly, I ask myself if they would mind having it out there. And if I can, I ask them (Bobby and Andy always have final veto power over what I publish, and while Logan isn’t able to verbalize his wants yet, my goal is to share with respect foremost in mind).
3. I’m careful of details I put in groups, too – Facebook Groups (and most groups and forums online, honestly) come with three different levels — Open, Closed, and Secret. You must assume ANYONE can see something if you post it in an open group, and should assume your own risk in other groups. Trust the people in the group before you share to even a secret group, because once it’s out there, it’s out there.
4. Ask yourself this: Do you need to vent? Could it hurt my child’s feelings? Could it embarrass them unduly?
5. There’s more but that’s the biggest part of my own internal checklist (please leave your suggestions in the comments!). There are safe places to vent, and there are safe places to go if you need help, or if you are in crisis. Please reach out to me if you need to hook up with any of those or if you just need an ear.

When we’ve stayed up all night I’ve been known to mumble on FB or Twitter about the expanded need for coffee I tend not to share something if it would put any of my kids in a negative light. Generally, the public doesn’t need all those details – and I want to respect my guys’ privacy. Everyone has their own level of comfort here, but I encourage everyone to consider what theirs is.

Back to the point – Negativity hurts me, and it’s okay to recognize that!

I was hurting and I was struggling … and I felt like I was alone in a sea of others sharing the constant negativity. I felt alone. The continuous negativity was making it hard for me to find a place of balance.

I understand that we’re all on our parenting journey and while we sometimes walk similar paths we won’t all arrive at the same destination, nor will we take the same paths to get there. My autism, my autistic kiddos, are not your own. 

But respect those who see it differently. 

Different Paths to Love

Because there are so many parents, walking so many paths, arriving at so many of their own destinations, it’s understandable that we’d stumble across each other. In forums, on social media, in groups … we often see that paths the we are walking are similar and we talk, we cry, we share … and we love.

But we don’t always agree.

I often hear in parenting groups the words ‘my autism is not your autism’. And there is a poignant truth to that statement. But there is also another side to consider. At any given time, we have the power to look at autism, to look at the autistic person we love, we have the power to look at them and see their beauty. Not the physical beauty, but the sheer individuality that shines from them and how they view the world around them. 

My guys are all on the spectrum, but they are as different as night and day. They each have strengths and weaknesses. The weaknesses do not represent tragedy, they do not overshadow the strengths they have, but compliment them instead.

These days, Bobby is highly verbal, happy and excited – I call him a happy rocker because when he’s excited he rocks (a lot!) with a huge grin on his face. He loves the world and the people in his world. He sometimes becomes anxious and overwhelmed and he sometimes needs help to decompress. He sometimes needs help to find his words.

Andy is my quirky guy. Unless you were familiar with autism you wouldn’t see it when you look at him. He’s worked hard and grown into a young man who’s both serious and happy. He sometimes has trouble understanding the social clues around him and will ask us questions to help figure those clues out. He’s highly verbal, an academic at heart, a little bit of a comic geek and he loves to draw. He can sketch just about any comic image freehand and loves his art!

Logan is my mischievous little man who has an easy smile and an addictive laugh. He reacts to music and seeks out sensory experiences with a passionate determination. He’s still learning how to communicate and sometimes has trouble getting us to understand what he wants. He gets frustrated when he can’t show us what he wants. He needs more help and support, but he’s a consistently happy little guy.

When Autism is more Challenging

Yes Logan has more needs, right now, than his brothers do. Yes he has more challenges and he still hasn’t found all his words yet. Yes he sometimes gets frustrated and he can’t always access the few words he does have.  All the bits and pieces that make up Logan’s autism, that make it more challenging, or maybe challenging in a different way, are still part of him. I’d be lying if I said it was all amazing all the time – we have difficult times too.

Yes, it can be tiring and frustrating and even sometimes a little scary for us – but we always try to see how HE is feeling, what HE is trying to communicate (because we firmly believe all behavior is communication).

I feel bad when I hear parents say that their kid has more severe autism and therefore you can’t be expected to fully understand just how hard it is for their family, how much having a ‘cure’ would mean because it would allow their child to be normal.

As difficult as it is when we are having a challenging day; those hard days don’t happen all the time – instead we have sleepless nights or rough afternoons or even frustrated mornings.

But here’s the thing … the point … the thing we hold onto … it isn’t all bad all the time. Not even a good chunk of the time.

Because beyond all that, I CAN see his smiles, his laughter, his fascination with even small things like raindrops (he loves them!) and leashes, cords, strings … we see the other side of the path, the beauty, the uniqueness too.

When all you read is negativity, when all you see is how horrible autism is, when all you read is the bad, the fear, the shame … how do you know to look beyond to the individual? How do you learn to look for the beauty? My problem with seeing so much written by folks who seem trapped in that mentality is NOT that they show the negative, but that they rarely, if ever, show you the positive.

When you look FIRST for the positive, the negative ceases to be quite so overwhelming, even when you can recognize it and accept it. Even when you want to cry and rage and scream because it’s hard. You claim the good and the bad; you know that nothing good in life comes without hard work and sacrifice, without dedication.

Our boys are each amazing and have worked hard to be where they are today. They each have a special way of seeing and interpreting the world around them. They are each autistic, they are different, they are unique, and they are awesome.

I get that not all folks see autism the same way, but for me and my family, autism will be nothing to fear, nothing to stigmatize, nothing to demonize. It’s just another piece of who they are.

The post Autism: Unique is Awesome – Expressions of PosAutivity: #AutismPositivity2014 appeared first on Kat's Cafe.

Last year, Andy learned how to read his ten-speed bike and blew his dad and I away with how much he loved it.

Watching him as he rode his bike, the grin on his face was huge and carefree, his face was turned to the sun occasionally, and he just looked so FREE and happy. He might have been 13 when he finally ‘got it’ but he was no less awesome for finally understanding the joy of riding his own bike, and he can’t wait for the weather to warm up again so he can be right back out there riding again this year.

As happy as I was for him, and as proud as I was too (let’s be honest!), I don’t know if Bobby and Logan will be ever find the right bike to let them do the same, to feel that free and awesome … adaptive bikes or not. But hopefully we’ll find out some day. Bobby is just too scared, and since his field of vision starts petering out about 2-3 feet away it makes sense that not seeing the ground *might* be a little unsettling for him. Logan … while he has vision issues too, I think he’d be a rider if he could coordinate the actions – he loves all kinds of vestibular motion.

See, that’s where an adaptive bike comes in … we’ve been thinking it might be time to try and get Logan and/or Bobby a bike of their own to try – if only we could figure out one that worked for one of them! It’s a bike, adapted to meet the different needs of kids with awesomeness.

Here’s Where the Great Bike Giveaway Comes in!

I want my other guys to have the same experience Andy had when he figured out how to truly ride and enjoy his ten-speed. I want other kids with awesomeness to feel the same way too! The Great Bike Giveaway will help give children with all kinds of special needs the same feeling.

For the third consecutive year Friendship Circle is holding the Great Bike Giveaway, a national contest giving away adaptive bikes to children with special needs. They are partnering with tons of sponsors (located at the bottom of the post – give them some love!) to give away adaptive bikes to children and young adults with special needs.

Why The Great Bike Giveaway?

Many children with special needs miss out on the childhood joy of bike riding because their physical or cognitive limitations make riding a bicycle near impossible. The Great Bike Giveaway will give children and young adults with special needs the chance to win an adaptive bike and have the feeling of pride, freedom and confidence that bike riding brings.

After seeing the joy Andy finally experienced riding his bike last year, I feel more inspired than ever to push the Great Bike Giveaway this year – I want that same free spirit and excitement for every child, regardless of their unique abilities. Yes, I want it for my own kids, but I want it for a TON of other kids too!

And that’s where YOU come in!

How The Contest Works

Adaptive bikes are tailored to a child’s needs. To meet the needs of the recipients in this contest, a separate contest is held for each bike type. The contest starts with two bikes of each type and money is raised to add more bikes as the contest progresses. Last year the Great Bike Giveaway ran 6 different contests and gave away a total of 29 bikes! This year they are hoping to give away 75 bikes to individuals with special needs.

Each bike page has a space where users can enter the contest. Submit a picture of your child with special needs along with a short explanation of why your child needs an adaptive bike.

We’re still deciding if we want to do this for one of our guys or support another Cafe friend’s nomination – but even if we put in one of the guys for their own bike we can still support any Cafe friend who wants to enter their child! Leave a link to your nomination in your comment and we’ll put a post together just for Cafe friends to support!

From the winner of a Parent: Judd, received his Rifton tricycle that he won through your bike giveaway. He loves it so much. His first time out with it , he pedaled .75 miles! Everyone at the track had a smile on their faces watching him enjoy his bike. The biggest smile there belonged to him though.

Two Ways to Win

Most Votes
One bike in each contest will be given away to the entry with the most nominations. Nominations are received from friends and family clicking the “nominate button” on an entrants submission

Bike Raffle
All the remaining bikes will be placed in a drawing. To be eligible for the drawing each submission must be nominated by at least 50 friends and family members.

How You Can Help

Whether you have a child with special needs or not you can help more children with special needs win an adaptive bike.

1. Donate To Add More Bikes

In addition to the bikes that have been sponsored, Individuals have the ability to donate to the Great Bike Giveaway to get more bikes added. Every time the donation meter is filled another bike gets added to the drawing!

2. Share and promote

Let as many people as possible know about the opportunity to win an adaptive bike by sharing the the contest via your social networks and email. You can also check out the resources page for additional tools you can use to share the contest.

Contest Timeline

March 3rd 12:00 pm

Contest begins! Photo submissions will be accepted.

March 25th 11:59 am

Contest submission deadline, no entries will be accepted after this time.

March 26th

Drawing (Drawing date is tentative and subject to change) Will be held and winners will be announced.

To enter the Great Bike Giveaway visit www.greatbikegiveaway.com For contest rules visit www.friendshipcircle.org/bikes/rules.

A Special Thank You To the Sponsors

The post Nominate Awesomeness for The #GreatBikeGiveaway! appeared first on Kat's Cafe.

The Cafe’s Facebook Page was jumping yesterday as I tried to share tons of posts related to the Spread the Word to End the Word campaign, and I was reminded often of the good in people as so many came together to celebrate awesomeness in all forms.

Only a few comments surfaced of people who didn’t really agree with the campaign, and that’s okay, not everyone needs to agree with me all the time. But …

But, I wonder if you are fighting for the reason you think you are fighting?

Bobby’s Words – It Really is that Simple

My guys each jumped at the chance to take a #RespectSelfie with me to commemorate our r-word pledge. While I had to tickle him for the grin, Bobby was very specific about ‘not liking that word’ because ‘it’s a bad word’. And I couldn’t help but think that it really was that simple.

Bad words, in our house anyway, are words that make others feel bad, that make fun of others, or that are downright mean. We have several words that we equate to true naughty words, and the r-word is on that short list. Why? Because it’s a bad word. It makes my guys feel bad – about themselves, their brothers, their family, their friends.

My guys know that when we hurt someone with our words, it’s a bad thing. It doesn’t matter what those words are.

Why Use the Word ‘Retard’?

I saw many different arguments against the campaign on the Cafe wall and as I toured other pages and while I don’t seek to address them all I thought I would pull one of the biggest points out to discuss.

One of the most frequent points others make is that banning a word doesn’t make any sense, or that it’s against their free speech to say they can’t say a specific word … and here’s my response to that.

There are certain words that are so filled with negative connotation for some groups of people that they literally cause harm – for some African American’s the n-word is like this, as are many other racial slurs. It’s commonly accepted that most people won’t say those words in polite society. Not because they offend them personally but because they recognize that those words are demeaning towards entire populations of our friends and neighbors.

How is that different from the r-word? An entire population of people are being offended by that word – they are HURT by that word, at a visceral level. These are our sons and daughters, our siblings, our friends and neighbors … it is this entire community that is stepping forward to ask you, please, not to use that word.

Is there a law against it? No. Government isn’t making a law asking you not to act like a douche, this community of folks full of awesomeness and those who love them are. They’re asking you – please don’t act like an … well, like a not nice person. As Bobby would say, it’s a bad word. It’s mean to say it.

No one is threatening your “rights” – unless you are threatened by the thought of acting decently?

It’s a Bad Word – and Bad Words can Hurt

Sure, we can teach our kids to ignore people who say that word, and we will. But is it asking too much to ask you to think before you say a word that demeans an entire community of awesome adults and kids who just happen to have an intellectual disability?

I really don’t think it is. Think before you speak. Pick words that make your point differently, don’t stoop to being *that person* who can always be counted on to be rude. There’s an entire population of amazing people who’d sure appreciate it.

Keep Reading on Other Sites:  

The post Words Hurt – it Really is That Simple appeared first on Kat's Cafe.

We were at his Special Olympics basketball practice and, while Bobby had specifically figured out HOW to get that ball into the basket earlier this week, this was my first chance to witness this amazing feat. Amazing, because it’s taken him a LONG time to do that. The fact is, we don’t know how much he can see outside his 2-3 foot main field of vision, because Bobby is legally blind.

So, seeing him make that basket was like a bit of a miracle for me – and there were definitely tears in my eyes as a grin stole across my face.

But he had made baskets earlier this week – Jim took Bobby and Andy to the YMCA a few days before and was thrilled with how far Bobby and Andy both had come in their skills – and he was just as proud then as he described to me the wonderful sight of Bobby actually making a basket.

The Admission … At first I didn’t Hear Him

When Bobby came home talking about making baskets at school that day I wasn’t paying attention. I was so busy, you see, that I didn’t actually hear how proud he was or understand the infliction of pride in his voice.

In fact, I was trying to figure out when they started basket-weaving at school, with a small frown on my face, when I realized what he was actually saying a couple minutes later. Hey, at least I did figure it out!

But I confess, honestly, I was too busy trying to finish some project at the time, because I was busy! And I almost missed the importance of Bobby’s big announcement. I almost didn’t hear him.

And by default I almost didn’t hear Him. You know, the head honcho, the big guy upstairs … Him.

He was busy screaming at me to Stop! Listen! Engage! Be a mom! Be proud! Be THERE. See the gift He gave us.

Because I know all good things come from Him – just as I know that Bobby making a basket, or a dozen baskets, or fifty of them … him making baskets isn’t about getting that ball into the basket. Oh, to Bobby right at that moment it is. But really, each of those baskets are small moments representing the whole.

A life well-lived. A life filled with wonder and excitement, a little innocence. A life that is a blessing.

No, to me, Bobby making baskets is about understanding that all things truly ARE possible if you believe; it’s about recognizing that my kid can see well enough how to really enjoy life enthusiastically.

It’s not easy to remember God sometimes … in the midst of rushed meetings, family dinners, fast food dinners, sports, lessons, school, work … in the midst of LIFE, we sometimes forget that our families are gifts from Him, our time spent with our kids and spouses something to cherish. To remember. To hold dear.

Making baskets. It turns out that it’s a really big deal. And not just for putting the ball in the basket.

Because life is lived in the small moments.

The post Making Baskets appeared first on Kat's Cafe.

So I am excited about Rare Disease Day not because it’s ONE day of awareness and, hopefully, action; I am more excited because it’s the START of awareness for so many people. It’s a chance.

For so many families living with rare disorders, a day of awareness is a way to mobilize our educational efforts, to be open and proud about the rare condition our kids have. When we limit our awareness and advocacy efforts to a given day or period of time, what do we do the rest of the time?

We’re still living with the rare disease, or helping a loved one do so.

Taking Action for Rare Disease Day (and beyond) This Year

So, you probably are hearing a lot more about different rare diseases because so many people are coming forward to talk about the condition they have … instead of sharing and caring that information on just today, here are some ways to consider using what you’ve learned:

• Make a point to connect with the Facebook Page or Twitter account of a group or person advocating for a specific disease – and commit to sharing their information throughout the year.
• Consider finding a local family dealing with a rare condition and see if you can’t find some way to help them today – show them that you care in an easy way by dropping off an “I’m thinking of you” card – with a little “How can I help you” note attached … they might not take advantage but I guarantee you’ll have touched them by caring.
• Drop a quick “how are you doing” message to someone on Facebook, Twitter, or another social network when you know they are dealing with rare disorders – the simple act of showing that you care will mean a lot to them!
• Leave a comment with your best suggestion!

Also available – Rare Disease Awareness Graphic Set

I know it’s hard to find original images so I put together a great set of images and invite you to use any of them, share them, pin them, and otherwise spread the word! You can also download the full set by clicking on the last image!

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People-first language used to be a big deal to me.

I remember, as a parent new to my kids’ varied diagnoses, looking around wild-eyed and desperate for information and encountering the idea. It seemed to make sense at first, but after a while (and a few more diagnoses) I began to wonder how we got to the point where we dictated the language other parents used to describe their own kids, how we judged the language autistics use to describe themselves …

For those who don’t know, or who would like to read more about the idea, People-first language literally means putting the person before the disability, and in theory I like the idea. Kathie Snow over at Disability is Natural has a great goal with the idea of people-first language – she wants her kid to be seen as the amazing kid he is before adding in any diagnosis he might have. On its surface, as I said, I like the idea. You can see a chart of “Examples of People-First Language” at Snow’s site.

Here’s the problem I have.

People first language assumes that our kids are separate from their diagnoses, that they can’t and shouldn’t claim those diagnoses for themselves, and that we shouldn’t let them do the same. Because, even though I am a parent, even though my husband is a parent and autistic himself, proponents of people-first language say that referring to our children as autistic will harm our kids, disrespect them even.

I disagree.

In some ways people-first language makes sense – for instance saying “people with disabilities” instead of the handicapped or the disabled. But when you are talking about a person and they have a specific diagnosis – we’ll go out on a limb and say autism here – why would you assume everyone wants to be identified the same way?

Yes I am a Geek – Researching at work here:

I first learned about and made the decision to NOT use people-first language a few years back. At the time my inner editor was hating the sentence structure (Hey! I’m honest!) but my heart was saying that the distinction shouldn’t be made by parents, but instead by the folks who, you know, actually have the diagnosis. I don’t remember the links I found at the time, or the forums I read through. But I found out that many adult autistics actually found it disrespectful to be called an adult with autism, because they were autistic … not every adult but most of them very specifically made their views clear (either in their bios, by proudly saying they were an autistic adult, or in posts about the subject).

You’ll find the same point of view in a lot of Deaf and Blind communities – they are blind, they are deaf … they aren’t a person with blindness or a person with deafness — I looked that up way before I ever looked up anything about autism, and I thought it made a lot of sense.

Not all disabilities are treated the same here though – there are lots of other groups of folks with one diagnosis or another who prefer people-first language.

This means there is a difference of opinion – not all people with disabilities see their disability the same way. Not all autistics prefer to be called autistic, though many do; most adults I have spoken with in the Deaf and Blind communities prefer not to use people-first language because they *are* a deaf or blind person and … they have many reasons, actually – and I urge to read about it further if you ‘re interested. Google is your friend.

Where does that leave us?

People First Language Doesn’t always put the Person First

Think about it. If you refer to all people with disabilities or diagnoses the same way, even if they or their peers have said they prefer something else – how is that respecting the person?

If, by stumbling over language, you draw more attention to a person’s disability than a clear and concise reference would have allowed, how is that respecting the person and drawing less attention to their diagnosis?

It isn’t respecting the person or de-emphasizing their diagnosis.

Where We Weigh In

Crazy fact here, guys … my guys will ALL be adults one day. It boggles the mind, I know! If the majority of autistics writing about this prefer to be called autistic (because, they’re, you know, autistic), and they are offended when referred to as an adult with autism … I think that is an IMPORTANT distinction since, I hope, my own guys will eventually be able to be just as vocal about their own desires on the subject. (If you are autistic I would LOVE for you to weigh in with a comment – and if you have published a post that isn’t linked please do link it in your comment)

This isn’t about judgement, to me, but comes down to respect. I can’t disrespect my own guys or the autistics who have put their choice out there. And I can’t act like my kids being autistic is a horrible thing … because they are awesome – and being autistic is part of that awesomeness (see a post about that awesomeness here!).

I stumble a bit over blindness – because Bobby and Logan are both legally blind but still have vision. Blindness can’t be exchanged for visual impairment – though they are often used interchangeably. The point — my guys are legally blind, but they have functional vision that blows us away (you really have to be looking to realize my guys have vision issues), so I usually say they are visually impaired, which I think is more correct.

I stumble again regarding epilepsy, because most adults with epilepsy do not self-identify as epileptic when they write about being epileptic, they say that they have epilepsy. Which, given that epilepsy is truly a medical condition, I think makes sense.

The point – when it comes to respecting the individual you take the time to find out. On my site, on my Facebook Page, when I post on my own social media profiles – I will use the language I think is most respectful, which is NOT always person-first language. Maybe that will change when my own kids are able to verbalize what langauge they prefer, but for now I take my cues from adults on the spectrum or who deal with some of the same diagnoses that my kids do.

Some parents feel differently about the words they use – and that’s okay, they have that right. 

On their sites, their profiles, their status updates … they can use whatever language they think is the most respectful.

You know what isn’t respectful? Telling another parent how to talk about their own kids, or telling them what language they should use on their page, blog, or status updates. I’ve written about language awareness before, and about how respect should be the underlying desire when talking about anyone else or their kids.

So, this is why I say my kids are autistic and visually impaired and have epilepsy – I’m not trying to step on anyone else’s feet here but after researching it, thinking about it, and considering what my kids would prefer, I made a conscious decision to NOT always use people-first language.

That doesn’t mean I think it’s evil.

In the end, it comes down to respect. You can say what you want when referring to my kids – as long as you do so with respect. I don’t require anyone to speak, think or write the same way I do. I will respond to others when they attack me, but you won’t see me attack anyone for the language they use.

I practice and ask for respect, nothing more and nothing less.

From the Kat’s Cafe Facebook Page, my post with much of the same information:

If you are interested in further reading (and please feel free to share your own in the comments):

• The Significance of Semantics: Person-First Language: Why It Matters –  Autistic Hoya
• Autistic as a Reclaimed Word – Musings of an Aspie
• Why “People First” Language for Disabled People Doesn’t Work – Jim Sinclair
• Communicating With and About People With Disabilities, Centers for Disease Control
• People-First Language: An Unholy Crusade, C.Edwin Vaughan, National Federation of the Blind
• Tools for Reporters, United Cerebral Palsy,
• Person-first language doesn’t put people first, it makes them invisible
• The Problem with People First Language, Celebrating Phoenix
• Identity-First Language, Autistic Self Advocacy Network

The post Autistic, Schmautistic – People First or People First Language? appeared first on Kat's Cafe.

I Remember when I Fell in Love with my Husband

One of my favorite memories of my husband and I together falls before we were married, back in the early days of dating as we were beginning to get to know each other.

One night we settled against  against the hood of the Mercury Monarch Jim was so proud of, and we spent hours talking. We noticed the stars, kind of. We blushed and we stammered and we grew to love one another over stumbling words and half-hidden glances at one another.

And somehow, over the years, we’ve been able to continue loving one another, even growing in maturity and love for one another.

Back before we were dealing with therapies and appointments and the pure craziness that came with three boys with awesomeness, we grew to love one another because we learned about each other. And we worked at it. When I was away at IU; when I was dealing with the fallout from family issues; when I needed someone who could look at me and say I was beautiful for ME, and that I was loved … Jim was there.

But that’s not why I love him.

Love Takes Time

Over the years, as we have struggled to remember that love amidst the stress of raising three kids with awesomeness, we both sometimes forgot that time of learning to love. We forgot how hard it was to fall in love. And we treated our marriage as if it were a secondary entity in this overwhelming family.

We still do that sometimes.

And yet we always come around the corner and tiptoe around and up to one another, we always come face-to-face, and we always remember that we’re a team. It’s us against the world. Us. We. Him and I. We come together, and we work better together.

That’s still not why I love him.

Love Grows Through Adversity

The truth is, it’s not all easy. Sometimes we fight. Sometimes we struggle. Sometimes we hurt.

That’s the nature of a relationship, and it’s easy to forget that when divorce is whispered more often than marriage in this country, when television shows romanticize the notion of love and what it means in a marriage.

Sometimes we forget that we worked for this marriage before it was ever a marriage – we tiptoed up to love before it was an ingrained part of Jim&I. And I’m not proud to say that sometimes, when stress has seemed almost overwhelming, when we’ve struggled to understand each other, we’ve hurt more than we’ve loved.

Because when were first married, it was with starstruck eyes and that feeling of romantic and amazing ‘this is perfect’ kind of love – and no one bothered to tell us that kind of love isn’t what a marriage is built on. Oh, it can be started on it, founded on it, forged in it. But you don’t build a marriage brick by brick with that kind of love.

So that’s not how or why I still love him.

Love (and Marriage) Grows over Time

Instead, as we matured, we grew to love each other in a more mature way (but not always!). I love my husband because we are two parts of a whole.

There are times one or both of us forget that, when we hurt or are hurt by our lives or our actions, but I think you either grow closer together, stronger, after the challenges and triumphs of life, or sometimes you (and your marriage) falls apart.

While we have stumbled, Jim  and I overwhelmingly, desperately, unconditionally love each other.

When I drive him crazy because I talk to everyone … he still loves me. When he has a hard time verbalizing what he’s thinking or telling me things (hello aspergers my old friend, er, nemesis) … I still love him.

I can’t speak for him, but I can unequivocally say I love him more today than I did the day we married.

We wage a battle every day in a world out to convince us that a hard marriage isn’t worth being a marriage; we wage a battle every time one of us struggles to handle the day-to-day stresses of handling three boys who are autistic, epileptic, and 100% awesome; but never do we forget that there is love.

We fit together in ways I never could have imagined over 15 years ago, almost as if we are growing closer together as life weathers us.

And that is why I love him.

Overwhelmingly.

Desperately.

Unconditionally.

Because we fit together in a world where most things buckle and break.

Fawn Weaver, the founder of the Happy Wives Club wrote a book about the best marriage secrets the world has to offer. They say the book is like “Eat, Pray, Love meets The 5 Love Languages.” I say the book is inspiring. You can grab a copy HERE.

The post Why I Love my Husband appeared first on Kat's Cafe.

I’m a writer, have been for longer than I can remember loving to write.

But it seems like the more I wanted to write, talked about writing, pushed to write … I lost it. That spark. The enjoyment of writing. So I have joined a few challenges to help make writing a habit, blogging a consistent effort, and playing with words fun and purposeful.

You Don’t Have to be a Writer to Write

Not every special needs parent is a writer – I totally understand that – but there are reasons that writing and even blogging could be helpful. Journaling, for example, is an excellent way to understand how you feel about this emotional journey we’re on. Sometimes looking at your emotions on the page (or screen) is a way to face the stress, the crazy and insane levels of stress, that we face daily as special needs parents.

For me, writing used to be an outlet but recently became almost too hard … as crazy as that may seem. If you look back you will see I’ve written very little over the past year. I’d like to change that this year.

To that end I’ve joined three very different challenges, each for a different purpose. I’d love for you to join me in one or all of them!

My 500 Words

My 500 words challenge is being headed up by writer Jeff Goins as a way to help writers, well, write. I love the challenge because you don’t have to post anything, you can write for yourself, for that book you want to someday publish, or for your blog. And while the challenge is for writers, I think this one is a perfect one for special needs parents to join as well.

The goal is literally just to write 500 words a day. Carve out the minutes and just write. It doesn’t have to be pretty. It doesn’t have to flow. Doesn’t even have to be spelled correctly!

But it’s a way to find your voice again.

The fact is we are all losing our voice. We carry on in the trenches every day doing what we do best – taking care of our amazing families – and in the process we lose bits and pieces of ourselves. Journaling, which is what I would term writing for yourself, is a way to release that stress, to deal with it, to heal from it, to accept it even.

What about you?

Do you have a secret love of history? Art? Photography? Maybe your journal can include writing about and including snapshots or links to pieces that move you, inspire you. The point is, it’s a way to get in touch with yourself, to use your voice. You don’t have to worry about what anyone else thinks about it – it can be just for you. (mine!!!!)

The 500 Words challenge is all for me – while you will see the evidence from my postings, my only true goal is to get back in the habit of writing, and loving writing, for myself. To find out more information and sign up for the 500 Words challenge, click through to Jeff’s post.

Next up – the Ultimate Blog Challenge

The Ultimate Blog Challenge, begun by Michelle Shaeffer and now run by her and Michele Scism, is literally a 31-day blogging marathon. By joining you will get daily post ideas, encouragement, and a ton of ideas for different types of posts you can do at your own blog.

The goal is, of course, to end the month with 31 blog posts. I’ve seen participants join for each of their blogs, and I’ve sadly never completed the challenge (I’m horrible, I know!) … but this is my year – I just know I will get to 31 posts between my posts here at the Cafe and at my new Kat’s Media blog.

If you are new to blogging, the challenge can help you jumpstart your blog, and if you are a seasoned pro this will teach you at least a few new tricks.

Me? I’m neither new to blogging or a pro – I am here for the consistency. I want to end the month with 31 posts (at least!) Sound interesting to you? You can join me at the Ultimate Blog Challenge site!

It All Comes Down to ONE Word

I came up with a theme last year and I felt like it helped me remember what it’s all about. Last year my “theme” was “Keep Moving Forward” … it’s a Disney quote I shared in a ton of different ways throughout the year, but the sentiment was what I needed to make through rough spots and rock the triumphs … moving forward no matter what we find in our path.

We do it every day.

But if we do it with purpose … well, I think it helps to think of it that way.

But I stumbled upon this amazing idea (okay another writer posted about it and I had to be a copycat) … it’s called #OneWord and the whole purpose of your WORD is to help you focus on one way to move forward … and it sounded right up my alley! From their site:

Forget New Year’s Resolutions. Scrap that long list of goals you won’t remember three weeks from now anyway. 

Choose just one word.

One word that sums up who you want to be or how you want to live. One word that you can focus on every day, all year long.

~ One Word 365 Website

I’ve been playing around with the idea already, thinking I would renew my theme of the year. And it didn’t really take me that long to decide on the word that would work for me this year.

Determination

My word of the year. Because determination is what will help me keep moving forward when I want to give up, it’s what will keep me praying and hoping when I would rather cry, and it’s what will keep me up nights working to make my business grow.

I can’t wait to put that into perspective and to consciously live my life with that in my mind … and I’m sure I’ll write more about it … 2014 promises to be a year of change and craziness, as it always is in our family. But this year I’ll be meeting that insanity head-on with some determination.

How about you? Are you going to participate in any of the challenges I’ve mentioned? Have you picked out your own word? Are you doing something else entirely? I would LOVE to hear about it in the comments!

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