Coming to Terms

October 12, 2016 / nicholekea / Leave a comment

Something really fantastic has been happening in our home.

Something that I had always hoped would happen.

As parents, we hypothesize certain parenting behaviors will work…but, let’s be honest, it’s a crapshoot. (I have no idea what that phrase really means…but I do know how to use it.) No matter what we’re going to screw some stuff up – and are hopeful that MAYBE…just maybe, we’ll get something right.

From the very beginning we were honest with Tucker. We told him why he was different. We’ve shared why he may struggle in school. We promised we would be right by his side – always – rooting for him, cheering for him, advocating for him.

Those times were often filled with tears for his struggle.

Now?

Now…we’ve begun to root WITH him, cheer WITH him, and advocate WITH him.

These times are often filled with tears from his struggle.

My heart is in a constant battle…jump into my throat with anxiousness or jump out of my chest with pride.

He’s loving himself. Oh man…he’s really loving himself. AND – not in a I’m too cool for school or I’m too awesome or I’m so special way…but in an ‘I’m different…and that can be pretty awesome‘ way. Shouldn’t we all be so lucky?

It started about six weeks ago. My two children were having a discussion about the plan for a Friday night at the dinner table.

Estelle was pressing Tucker for more and more details. What time is the game? What time are you leaving for the game? Where is the game? When will you get to play in the game?

Finally, Tucker stood up. He took his plate to the sink. He came back to the table. I could tell he was irritated. He stood over her and my stomach dropped a bit…what was he doing?!?! He looked at his sister – IN HER EYES – and said, “Why are you being so Tucker-ee?” We all froze. He continued. “Why are you needing every detail of the night?!?!?”

We all froze.

We all looked at each other. He got it. He gets it. Then he smiled…and all of us laughed like we hadn’t laughed in months. The kind of laugh where you bend over and let it all out.

Finally, Estelle answered, “Well…why are you being so Estelle-like?”

Another round of laughter…and the tears that came were tears of laughter and relief. This is the deal. He’s learned that we are all different…AND we can (and should) find humor in our unique ways of living life.

It happened in our house, unbridled acceptance led to a recognition of unconditional love.

Then…a couple of weeks later it happened again. He’s so very literal…SO VERY LITERAL. He had a Doctor appointment. I’m not sure I’ve ever seen a doctor laugh so hard. Here is what I posted on Facebook…

So…you’re laughing, yes?

Did you notice who commented? Tucker did. Did you see what he commented? ‘You’re all welcome.’

It happened online, unbridled acceptance led to a recognition of unconditional love.

Tucker will be confirmed at the end of this month. Two weeks ago he read his faith statement to our congregation. In that statement he wrote (and then read aloud),

One of my favorite songs is by TobyMac. It is called, Beyond Me. I’d like to share some of the song.

Call it a reason to retreat
I got some dreams that are bigger than me
I might be outmatched, outsized, the underdog in the fight of my life
Is it so crazy to believe

In this first part he sings, “I might be outmatched, outsized, the underdog in the fight of my life” I can feel that because I’ve been made fun of and had difficult times because my brain is different than most people. But then he sings about his dreams being beyond him. That’s like me. God gives me the faith that I’m different, but I know can do it.

Not a dry eye was found in our house. Did you see that again? That, my friends, is an acceptance of self.

It happened in the public sphere, unbridled acceptance led to a recognition of unconditional love.

During this moment in our history it feels we need a bit more of this…unbridled acceptance that leads to a recognition of unconditional love. Thank you for your part in Tucker’s recognition and/or acceptance, no matter how big or small it may have been. Now…go out and give it to someone else…

It’s No Biggie

January 14, 2016 / nicholekea / Leave a comment

A few weeks ago a colleague of mine and I were sitting in a meeting.

While sitting around a large table some folks became really fired up, voices were raised, huffing and puffing was in full effect. We were sitting side by side…and just looked at each other.

This colleague is also a good friend of mine and her son has Type 1 Diabetes. He is four. She hasn’t had a full night of sleep in over two years – because she (or her guy) gets up every two hours to check their son’s blood sugar. Her life is her phone, where she can check and track his blood sugar levels in ‘real time’ (which by the way is crazy cool). A month ago we were again sitting side by side as she checked her phone and turned white. I told her to leave the meeting. Nothing was more important in that moment than getting to her son.

She is truly remarkable and so is their family’s story.

So, what does this have to do with autism and this blog?

After this said meeting I looked and her and whispered, “Am I missing something here? Does it seem like that big of a deal?” She shook her head and replied, “No.” Then we smiled at each other…that silent type of smile that both of us just know what the other was thinking. So, what were we thinking?

It’s no biggie.
Much of life…it’s no biggie.

I don’t have a lot of time (or honestly…energy) to worry about this or that. Not much time or energy to get upset at this or that. Why? Because Tucker has brought real to my life. He reminds me daily…about what really matters; and therefore, what doesn’t.

In about a month I’m going to turn 40 – and one of the most important life lessons that I have learned this far is that most of it is no biggie. I say that with a half wink and half-smile smirk. How I wish I could tell the early 30’s me this very important lesson.

It’s no biggie.
Why is it no biggie?

Well…because I’m too busy being worried about other stuff.

Like…
When I received Tuker’s IEP Renewal letter and the questions were,
“Where do you see Tucker living post secondary?”
“What level of education do you see Tucker pursuing post secondary?”
“What career/profession/vocation do you anticipate Tucker pursuing post secondary?”

Like…
Seeing him not be able to find the words to communicate.

Like…
Watching him struggle to engage with his peers.

Like…
Contorting my body as we converse to try to get him to make some eye contact with me.

Like…
Calming a total meltdown at church because he didn’t know he had to acolyte (yes, all 6’4″ of him…this is getting much more difficult ya’ll)

I guess that’s why most of the time I am so calm. I recognize that most of life’s issues are really quite small. Most issues will pass or resolve themselves within a couple of days. However, my husband would also tell you it’s the very reason to pay close attention when I do get fired up about something…because that something is likely very real.

So what really does matter?

His happiness.
Him feeling loved.
Him understanding his worth.

If it doesn’t affect one of those things…I’m out. This is the real life lesson for me and maybe for all of us.

What is it that REALLY matters? Feeling happy, feeling loved, feeling worthwhile.

What if we all arrived to that place? The place where we removed from our lives those things that make us unhappy, unloved, and unworthy; and added to our lives those things that make us happy, loved, and worthy. What if our focus was on three questions…

What makes you happy?
What makes you feel loved?
What makes you feel worthwhile?

Do more of these and less of the others.

Like hot tubs on snowy days. Do more of that.

Thank you, Tucker – for yet another life lesson to make our lives more beautiful.

Double Edged Swords

October 22, 2015 / nicholekea / 7 Comments

A couple of weeks ago my daughter had her new curly, blonde-haired friend over for a sleepover. She, the friend, and Tucker were sitting at the kitchen table eating a ridiculous number of grilled cheese sandwich bites I had prepared, each with their own ‘dipping’ sauce.

As I was about to round the corner I heard her friend say, “Your mom is so nice. Seriously – like even her voice it’s just so calm and kind.”

I stopped in my tracks, I always thought I sounded a bit like Minnie Mouse.

Estelle replied, ‘Yeah. She’s awesome. She never yells, is always generous, and understands that we make mistakes.’ Then Tucker chimed in, “She’s always making us do things for other people which can get annoying–but that’s just how she rolls.’

I walked away with tears in my eyes and couldn’t help but think about the viral video from a couple of years ago – how as a mom, we think we are constantly failing…but our children think we’re pretty awesome. If you haven’t seen the video – here is the link. CRY WARNING!! DO NOT WATCH if you don’t want to cry.

I was so moved by what they said that I (of course) posted on Facebook. Then someone wrote, “You are such a good mom. Seriously, I don’t know how you do it. I really want to be more like you.”

That’s nice – but at times, I’m a hot mess (SERIOUSLY…read Day #166 – I’m Not Supermom)

My mother-in-law and I once had a wonderful conversation about mothering. She said to me, “I told my boys – there are better moms, worse moms, but I’m the mom you are stuck with, so we may as well make the most out of it.”

That made me laugh…and think.

I’m the mom my children are stuck with.

Another friend posted, “I need to take lessons on that no yelling thing.”

I thought about that and the advice from my mother-in-law. I couldn’t help but to think…most of my mothering behaviors have been dictated by what Tucker needs to experience high levels of success. Yelling is not my thing, but it may be yours. Whichever you believe…your children will turn out however they turn out. As my children age, I’m recognizing what little impact I REALLY have on their decision-making and behaviors.

At an early age we did homework right after school -all in an effort to help them develop good habits. They arrived home, we sat at the table with a healthy snack and completed homework. When my children entered Middle School I decided it was time to ‘cut the strings’ and allow them to show the good habits they had learned. I won’t always be there – and I wanted them to show that they could complete their homework, independently.

As it turns out…neither of them are ‘good’ at doing their homework and I’m constantly getting ‘missing assignment’ messages from school. I also no longer feel like it is my job to remind them, push them, or require them to do it. They face their own consequences.

I make my bed every morning. Why? It helps me realize that I’ve accomplished something for the day – even if it’s as trivial as making my bed. Honestly, it may be the only thing that I bring to full completion all day long. My children have watched me make my bed and helped tidy the house every day of their lives.

As turns out…neither of them are ‘good’ at keeping their rooms clean. I often shut their door because my eyes burn at the site of the state of their room.

There are ‘good’ moms who end up with ‘crappy’ kids.
There are ‘crappy’ moms who end up with ‘good’ kids.
I’m not sure there is a pattern…so what I’m beginning to realize is this.

My children’s awesomeness is NOT a reflection of me. I cannot take credit for their amazingness.
My children’s not-so awesomeness is also NOT a reflection of me. I cannot take credit for their less-than amazingness.

It seems to be…regardless of what we do, we will mess up our children. My children have lived in a nice bubble. Do you know what that means?

They don’t know how to deal with mean people…let’s be honest – there are lots of mean people out there.

They have unrealistic expectations of how people are…let’s be honest – people don’t always have the best intentions.

Their expectations of how people forgive are skewed…let’s be honest – people hold grudges for A LONG TIME.

They extend grace to everyone, which is a great virtue…let’s be honest – people take advantage of others, often.

They constantly think the best in people…let’s be honest – people can be (and often are) manipulative.

They think conflict is always dealt with in a calm matter…let’s be honest – hahahahahahaha…we know that’s not true.

They don’t hear people yell…let’s be honest – other people yell…a lot.

So, yes – I may be a ‘good’ mom in many of your eyes – but here’s the truth…

I have woefully unprepared my children to deal with some aspects of ‘real’ life…and someday that is going to come back and bite me in my backside. That’s the truth and it will be a GREAT BIG BITE. I’ll be left trying to help them pick up the pieces and make sense of this not so nice world.

Please, moms reading this…please stop comparing. You’re doing the best you can in any given moment. Find peace in knowing that your children will become what they want to become, the one thing we can all do is love them…and that’s about all.

The Greatest Fight

October 8, 2015 / nicholekea / 10 Comments

While I try to be very positive in this blog and in life – there are days I feel like I’m in the fight of my life.

I’ve had several of them lately. It’s a combination of my own responsibilities and being a mom – but not just any ‘ol mom. A mom to a boy (er…young man) who has some extra very real stuff going on and that extra stuff is here to stay, forever. Get ready for some real honesty. I thought to myself the other day… “I wonder what it would be like to not have autism in our family. I wonder what it would be like to just deal with ‘regular’ mom stuff. I wonder what it would be like to just do the work thing and then homework, supper, bed, and maybe a couple of social snafu’s.”

Let me also say that I don’t know of ANY mom who only has ‘regular’ mom stuff to deal with. What is ‘regular’ stuff anyway? All of our children are facing situations and struggles…all of them, and I get that.

This week has just been more full of these days…days of watching my son struggle, and I can’t do a damn thing to help.

Autism is a part of who he is and we long ago ‘accepted’ that (not like there was a choice). We’re constantly trying to make the best of it all – consistently talking about how autism makes him unique and wonderful. Honestly though? Sometimes I hate it. There are days when it feels like it’s a heavy boot pushing him down, further and further towards the ground and I can’t do anything but watch. There are days when it feels like a dark cloud is looming over his head and I can’t do anything but watch. There are days when it seems his body and brain have been taken over by someone I don’t know and I can’t do anything but watch.

There are days when I watch him try to help others and they don’t respond with gratitude and I can’t do anything but watch. There are days when I watch and listen to others react to him and I can’t do anything but watch. There are moments where I watch him trying to communicate to someone not willing to wait for his words and I can’t do anything but watch. There are days where his head hangs to his chest and I can’t do anything but watch…always on the sidelines.

Hold on, that’s not entirely true…I do ‘do’ something. I put on a smile. I try to make him laugh. I hug him. I tell him how much I love him. I try coaxing his troubles out of him. Truth be known though…there are moments that it doesn’t work.

Those are the moments that I’m reminded of our reality. This is all my perception, I can’t begin to imagine what it feels like to him.

In these moments I’m left feeling like I’m grasping at his fingertips to bring him back and I’m just barely hanging on. It’s like a bad dream…I keep reaching and he keeps getting further away from me. He’s falling away and I’m grasping at anything to not let it take hold…to not let it pull him down.

I’m fighting.

Fighting for him. Fighting for him when he can’t.
Being his happy. Being his happy when he can’t.

He’s had a rough week and everyone around him knows. These are the weeks that I become numb. Numb while reading messages from teachers, numb while watching him with peers, numb watching him try to make sense of a sentence, numb. These are the weeks that I have to dig just a bit deeper to not lose it.

Weeks like this are the problem with Tucker’s label of ‘high-functioning.’ High-functioning, my ass (excuse my cursing…I apologize). I hate that label.

So…
He’s dresses himself.
He’s feeding himself.
He’s going to school every day.
He’s mostly doing what he should.
He’s compliant with most of my requests.

He’s functioning all right – but he’s also been in tears nearly every morning and night. He’s having troubles at school. Last night while sitting in our vehicle I finally coaxed him into talking to me. While holding back tears, lip quivering, holding and spinning his football he told me that ‘nothing in the world was right.’ He told me he ‘hated everything except you, mom.’ He told me that he ‘isn’t smart and will not go to college.’ He told me he, ‘can’t do anything right.’ Then, he repeatedly hit his head with his football. Over and over again….and again…and again. I asked him to stop. He continued. I finally took the football and cradled his head into my chest. I didn’t cry.

“I’m just having a bad week mom. My brain isn’t right.”

I was tired, frozen in the moment, and numb. The only thing I could muster was, “I love you.”

He got out of the vehicle and then I sat silently for 10 minutes. I know his brain isn’t ‘right.’ I want SO badly to help him through it, but I can’t imagine how much it’s hurting him. Because he is ‘high-functioning’ he knows what he should do….he can logically understand…but cannot get there. How is that ‘high-functioning?” Sounds more like a never-ending nightmare to me.

I went inside and melted into my husband’s arms, into 1,000 pieces and what felt like 10,000 tears. There are these weeks…the very real weeks.

The weeks where the greatest fight is to not try to fix it…because I can’t. I don’t know how.

The weeks where the greatest fight is to simply accept “having a bad week” because it’s the only explanation he can give.

The weeks where the greatest fight is to not give in to anger, frustration, and heartache.

The weeks where, honestly, the greatest fight is to stretch just bit more, to keep holding on, to not let go.

Because love wins, always.

Next week will be better.

Day #354 – Don’t Give Up

August 30, 2015 / nicholekea / 1 Comment

Today was our family reunion and I can’t help but to smile – smile so, so, so much.

I actually love family reunions – have THE BEST cousins in the world. Seriously – the best. I feel so blessed to have grown up with a huge family – on both sides.

My fondest memories are of wrapping paper fights, my uncle running us down for birthday spankings, Great Aunts and Uncles still knowing your name and asking how school was going. It’s a bit like the Cleaver’s – only A LOT louder.

Our family reunions 10 years ago were full of stress and angst. Full of glares from elders and others trying to ‘reign in’ my child. It was filled with meltdowns and worries about food. It came with nap preparation and leaving early or coming late.

Actually, we often didn’t go because it was just so much, too much. This made me sad because I really do dig my family.

Let me tell you how this year went.

First, so many of my family members commented on my blog. One of my cousins hugged me and said, “I know I haven’t seen you in awhile, but it seems like I see you every day.” Seriously – how heartwarming is that?

We were able to prepare Tucker – and we began yesterday. Not only did we talk about the reunion itself, but he was part of the preparations. I think this helped him not only understand what was going to happen – but how it would look.

This morning arrived and he was a trooper- helping with all the things we asked. I was frying fish (from my Aunt and Uncle in Alaska) and he asked to help. So – I taught him how and he continued to fry. He knew – he knew I expected him to be a part of the party…but it was okay to be on the sideline.

Then I watched – I watched as people said hello to him. I watched as he nodded and half-waved. I watched as people struck up conversation. I watched as he left and went back into the house. He began asking what time we were leaving – then continued asking what time it was. I gave him my phone so he could keep track.

When we left we got 10 miles down the road and he began stimming. The form? Not rocking. This time it was repetitive – hitting himself in the face. He was tired, he was overwhelmed – he was done…we left just in time. Often the stimming will end once his sensory system has reached an equilibrium. This time it lasted about 10 minutes with no end in site – so I handed him my phone again.

He stopped the self-harm – but with phone in hand began rocking in his seat. I looked at my husband and said, “I’m not surprised – he did such a great job today.” Then he told me that he and Tucker had been ‘making deals.’ He would go in the house and Matt would tell him what time he needed to come back outside (and for how long) and be social. He would come out, stay for a bit, and then leave. This happened all day long. How lucky am I to have this man in my life that works so hard at understanding and doing what’s right for Tucker?

It’s not about being lucky…it’s about being blessed.

Fifteen minutes later he fell asleep. My dad sent a text asking how Tucker was doing – making sure he felt okay with the day. I smiled because that wouldn’t have happened 10 years ago. Not because my dad didn’t care…but because he didn’t know. Now he’s quite aware of how difficult a day like today is for his grandson.

When we arrived home he grabbed his iPad and headed straight to his room. I haven’t seen him since – and I’m leaving him alone until bedtime.

It was a beautiful day and here is why I wanted to write.

Parents – don’t give up.

Please don’t give up in your sensory diets and accommodations. If we consider where we were and where we are now it feel like light years. I’m not joking. Keep working at it – keep developing an understanding of what works for your child.

Please don’t give up pushing. Push your child right up to the limit. Make deals – it’s okay…it’s important that he is a part of the ‘bigger’ thing – but it’s more important that it’s in incremental steps.

Please don’t give up in your advocacy efforts. The more people know the more they will understand. The more they will reach out – or the more they will simply stay away. Either is fine – but you know what goes missing? The looks, the stares, the exasperation that you may feel.

Please don’t give up helping your child recognize what they need. Tucker was able to understand the balance. He knew when he needed a break. He also knew that it was important to spend some time with his family – members that he knew…and members that he didn’t.

Please don’t give up. I know there are moments where it feels like it’s never going to get ‘better.’ Ten years ago I would have NEVER imagined a day like this. Ten years ago ago…NONE of this would have been possible.

In the iconic words of Jimmy V, “Don’t give up. Don’t ever give up.”

A day like this may be just around the corner for you.

Day #345 – Autism is Annoying

August 21, 2015 / nicholekea / 8 Comments

Every once in awhile I like to check in with my children about their life.

This morning I had a moment alone with Estelle and I asked, “Estelle, if there is anything in your life that you could change what would it be?”

I expected my 6th grader to say something about having friends over more often or not having allergies. I was expecting her to ask for something new or to have the gap between her front teeth fixed (which is, by the way, not THAT big).

Nope. None of the above.

Instead she said, “I wish Tucker didn’t have autism.”

That’s one way to shut me up and stop me dead in my tracks.

Then she said, “No. I guess not. I mean him having autism really gives me good opportunities to learn how to be patient and kind.”

That’s another way to shut me up and stop me dead in my tracks.

Seriously. Who is this child? Is she really only 11?

I told her that she did not need to recant her statement. I told her it was okay to want that. Then I asked, “Why do you wish that?”

She still refused until I said, “You know Estelle, sometimes I wish that too. I mean I obviously love him just the way he is but sometimes I just want to freak out. You know? Like this morning when he asked for the 18th time when we are going to do Fantasy Football? That makes me crazy.”

Finally she said, “It’s just kind of annoying.”

I pressed her for more stressing that it was okay. That it’s okay to talk to me about why autism is frustrating to her. It’s okay to talk to trusted grown-ups about how she feels – and that grown-ups won’t think she’s being mean. We know that she loves him…and she simply needs to vent.

So she went on….

“Well, sometimes when I’m talking he’ll just bust in and take over. It’s not a huge deal – but it’s annoying.

He has to think longer than other people do when he’s talking and sometimes it’s annoying to try to have a conversation with him.

Other times he doesn’t think long enough and just acts out without thinking about how if effects someone else, that’s super annoying.

His obsessions are annoying…but then I like it that he gets obsessed about things because he leaves me alone.”

I told her how much I appreciated her honesty and if there was anything I could do to help. She said, “No. I got it now, Mom. Really – most of the time I have figured out what to do.”

So, yes – she’s remarkable…but the real reason I’m writing about this conversation is that I think, as parents, we have to give children the opportunity to vent. They have to know there is a safe place to talk about their annoyances…no matter how ‘silly’ they seem. We all need this – in friendships, marriages, and other relationships.

I have a constant irritation that comes from expecting more from children than adults, themselves, are capable. Of course, we all get annoyed with each other. The most important part is that we don’t necessarily need to vet another’s vents to others. In no way would I ever tell Tucker all the things that his sister told me. In no way would I go to Estelle and tell her all the things that annoy her brother.

In those moments we can listen and teach grace. Autism is not a silly annoyance, it’s very real – but she needs to know that her complaints can be met with grace, compassion, and most importantly – validation.

Bless you, my beautiful daughter.

Day #338 – Babysitting

August 14, 2015August 18, 2015 / nicholekea / 3 Comments

This is a real challenge. I’m not kidding – whether you want to call it kidsitting or babysitting or something in between, it’s nearly impossible for those of us living life on the spectrum.

A couple of years ago I was talking to a young man who has a child on the spectrum. He and his wife were going on a four-day trip and his mother was going to watch the children. It took four hours to explain everything Grandma needed to know. This is NOT an exaggeration.

Tucker’s primary years were easy – because he was an infant and his differences weren’t really that noticeable. As we became more aware of his diagnosis it became very real.

It was difficult because how do you exactly explain to a Middle School/High School student:

the VERY REAL importance of bedtime
the difference between meltdowns and tantrums
not getting too much crunchy on a grilled cheese (or tearing off the ends of french fries)
the nakedness
the schedule
weird intricacies that your child MUST HAVE to sleep
the ‘running’ that may take place in public places
not using sarcasm

Sitters were hard to come by and it often came to the ‘not worth it’ point for us. If he went to bed 30 minutes late we would pay for it for days. If his schedule was off it took at least a day to get him back into the routine. However, it was also awful for some of the sitters we tried. The screaming, the non-communicatio,n and honestly…the nakedness.

This is just one of the reasons that I often advocate for being part of someone’s village.

We faced all of these hardships…and then? Then we found our beloved Brittany.

We found her at our church – but I know other parents find sitters for their very special children by calling local colleges/universities and talking with someone in education or psychology, referrals from someone on your team (SLP, OT, PT), or asking someone else in your autism community.

That’s OBVIOUSLY not Tucker…but it is our Brittany.

Brittany wasn’t just our sitter…she became part of our family. This enabled her to really understand Tucker – and they had quite a unique relationship. She never pushed, she always giggled, she always responded in kindness, she has a calm spirit, and she often came around…well…just to come around.

She also knew when to draw the line. Brittany’s parents were also friends of mine and I knew our parenting styles mirrored each other – so when it was bedtime. By golly, it was bedtime – and she stuck to it.

Most of all? She really didn’t let a bit of it phase her.

If he happened to run OUTSIDE around the house naked she simply, calmly went outside to ‘catch’ him and brought him back inside.
If he didn’t want to go to bed she would lay with him until he fell asleep.
If he picked the ends of his fries, she simply threw them away.
If his socks felt funny, she let him go barefoot.
If he ran in public, she just ran faster and held his hand while they both ran.
When he lost his words, she would patiently bend down to his level and wait. She wouldn’t push…she just waited. Waited until he was ready.

She was a blessing in our early years – giving us breaks from the impending insanity. Allowing reconnection and adult visitation. She was not just our babysitter – she was our sister, daughter, and friend – and I will always, always have a very special place in my heart for Brittany.

She will forever be part of our family.

Day #336 – Political Correctness

August 12, 2015 / nicholekea / 3 Comments

In the United States there has been plenty of conversation about Political Correctness (PC). Being politically correct is avoiding language or actions that are used to insult other groups of people.

The main question, “Have we become too politically correct?”

I’m probably going to offend some here – so I hope you just read me out.

What? Have we become too politically correct? Are you kidding me?

Of course…taking into account people’s feelings and not wanting to cause undue duress is completely overrated. (Dripping with sarcasm-if I can’t use it in my home, I’ll use it here.)

In my lifetime I’ve always tried to be PC, mainly because I don’t want to hurt other people – but I’ve had my moments as well.

My husband was a college football coach when I met him. I was a lifelong supporter and advocate of the arts. Inherently, this means I didn’t like him. Nope – not one bit. Not at all. One day we happened to be exiting a building on campus at the same time and were heading in the same direction. He continued to walk beside me even though I was…well…annoyed at his presence.

We were making small talk when I said, “I meant that as a metaphorical reference. You do know what I mean by that, right?”

He stops in his tracks and stares me down, “You think I’m some dumb jock don’t you?”

My brain was RACING…of COURSE I did. He’s a football coach and I knew just enough about his past…he was also an All-American tight end, a High School Hero, and a former PE teacher. I was also trying to stop my brain because I knew I shouldn’t assume. I think he saw this conversation going on inside my brain as I remained silent but probably had this look on my face.

He finally responded, “I also played the cello in my school’s orchestra, I had one of the highest GPA’s in my graduating class, I achieved a 31 on my ACT’s…”

I stopped listening…but he kept going. Telling me all the reasons he was not, in fact, a dumb jock.

Well, damn. I knew better – but here I was assuming.

Political correctness is opposite of assuming.

I’ve also felt it in my life. I grew up on a farm in a conservative family. I now teach at a Liberal Arts College…which happens to employ plenty of liberal-thinking folks. When others attack conservatism or large farms it hurts – not because I necessarily agree or disagree with what is being said, but because it is a part of me.

Phrases like, ‘Those Republicans’ or ‘You know farmers’ light my fire. Because those phrases play on assumptions. My parents are proud Republicans and they don’t always agree with everything other Republicans do or think. My parents are proud farmers and they are constantly taking care of the land and working to feed the world.

Here is a BIG difference though – athletes, farmers, and conservatives are not generally socially disadvantaged or marginalized in our society…and it still hurts. So just imagine. Imagine what it’s like to be a member of a marginalized, disadvantaged, or less privileged part of society and continually hear rude, demeaning comments. Not just once in awhile – but often and from people who you perceive have power over you.

So, yes – I’m politically correct. I’m politically correct because I don’t appreciate it when people assume things about me. I’m politically correct because I don’t want to hurt others. I’m politically correct because I never know someone else’s struggle in life.

I’m politically correct because when someone says the word, ‘retarded’ I cringe.

I cringe for them – that they don’t know better. That they have yet to know and love a person who has differing intellectual abilities.

I cringe for them – because maybe they just are that insensitive to another’s experience.

I cringe for my Tucker. The last thing he needs is to be reminded of his differences or his marginalized standing in society. His road is tough enough as it is.

So, yes – I am politically correct and I will continue to be. Not just for Tucker – but for all the people I have yet to meet, for all the people I have yet to hear their story, for all the people who feel marginalized, for all the people who feel ‘less.’

I refuse to add to an existing struggle…life is hard enough as it is.

Day #329 – Can you? Will you?

August 5, 2015 / nicholekea / 3 Comments

I’ve spent a few posts writing about my personal struggles with Tucker’s sister, Estelle. I don’t struggle with her…I simply struggle because I just can’t do as much for her as I want. She is a most amazing little creature and I do my best…but I know the truth.

I know she feels slighted.
I know she feels life is a bit unfair.

Can you?
Will you?

Can you do something for a neurotypical sibling?
Will you do something for a neurotypical sibling?

On Sunday my mom came to get Estelle for Grandma Camp. Now, I’m not sure what Grandma Camp entails – but I’m pretty sure it’s plenty of spoiling and lots of attention. Just what she deserves…no, it’s not what she needs. It’s what she deserves.

She deserves that and so much more. She understands Tucker – she is patient – she is wise beyond her years. Yeah, yeah…this will serve her well in the long-run of life, but you know what? How many us understood this ‘long-run’ of life at age 11?

I could write about all of the personal benefits she receives rom having Tucker as her sibling. Having Tucker as a brother has taught her to be patient, to negotiate, to communicate, to express feelings, to be compassionate, to advocate, to recognize differences, to not judge…

But let’s be real. She’s still just 11.

Can you?
Will you?

You know, this isn’t just about children with an autism spectrum disorder. This is about all families who have a little extra something. Maybe that extra something is diabetes, maybe that extra something is childhood cancer, maybe that extra something is Cerebral Palsy, maybe that extra something is ADD/ADHD, maybe that extra something is Down Syndrome, maybe that extra something is a Cleft Palate. The real question is…

Can you?
Will you?

Of course you can. You can make a difference in a child’s life. It’s easy. These siblings? All they need is a little personal attention, a little one-on-one time, moments where they are the center of attention, time without any distraction. They don’t need gifts or money – they don’t need theme parks or shopping trips. They simply need someone to make them #1.

Of course you can. The real question is will you?

Will you take this sibling and make them the center for a moment, a day, a night, a weekend? Will you change their life by making a moment about them?

Take them to a movie.
Take them out to eat.
Take them for a cone.
Take them to a park.

Talk to them – make them feel like they are the most important person in the world.
Play a game with them – make them feel like they are the most important person in the world.
Take them fishing – make them feel like they are the most important person in the world.

Can you? Yes.

Will you? It’s up to you.

Be a part of a village.

Day #327 – Indexing

August 3, 2015October 27, 2015 / nicholekea / 14 Comments

This is an odd blog entry – but also very necessary. I’ve had several emails from folks in the past couple of weeks asking if I’ve written about this or that. So, I decided to ‘index’ all of my blogs. 39 entries to go before I meet my goal…here are the first 326 by topic.

It took me A VERY LONG TIME to link all of these titles – so if you find one doesn’t work or links to a different entry, please let me know.

Also – I will continue to add back to this index for the next 39 days!

Introduction

Testing/Diagnosis