Tired of being tired...

It's been a while since I have sat down to write and I've actually been craving it lately.  Composing entries in my mind of what I would like to write and what I'd like to get out of my head. 

Writing for me is so much more than just 'sharing a thought'.  It's literally getting it out of my head.  When I write, I do it primarily, for me.  So the thoughts, concerns, worries, anxieties stop bouncing around and echoing in my mind - they are out - on solid ground, being in black and white on the paper...or er, screen. 

Lately, I've been tired.  Not like, I went to a party and now I'm a bit hungover, tired.  More like, the newborn woke up 7 times last night and my bones hurt to move kind of tired. 

What has me so tired and weary?... I'm sure you're wondering.  MY HEAD.  It must be a woman thing to get all caught up inside your head.  The plans, the lists, the emotions, the worries, the schedules, the chores, the to do's, the activities, the appointments, .... need I go on? 

But what I'm MOST tired from is the thought it will never change. 

With our neurotypical kids, you know that "this too shall pass".  But I'm tired, like really really tired, from the thought that what if this doesn't pass?  What if this is the full potential our son with special needs will ever reach?  Waking up and walking the therapy dog, training the therapy dog, making breakfast, helping him get dressed, making lunch, making dinner, going to therapy, going to activities, explaining why he can't be in the same skating or hockey program as the other kids.  

I'm tired of being his playmate.  He doesn't get invited out to play.  He doesn't get invited out to parties.  And now I can 'blame' it on COVID, but the truth is, no one wants the kid with special needs at their birthday party.  And that kid is MY kid.  

And then I get frustrated too.  The monotony of it all.  And then I get sad.  How could I have these feelings for someone who is so good?  So innocent?  So pure.  

The ironic thing is that I started this post on January 15th...and this morning I woke up early just to write.  (I wanted to get some movement in there too...but we'll see what we have time for)

I know now why families with children who have special needs get respite care.  Because it truly is exhausting.  

I'm also tired of being alone.  I have my husband with me and that we are solid - even though that is a statistical miracle.  But I'm tired of not having another mom who I can relate to, someone who I can say, "don't you hate it when..." or "isn't it totally amazing that this happened?"  Our totally amazing's are just someone else's every day - from three years ago.  

And then comes the guilt tired.  How could I ever EVER feel this way about a kid who is just so honest and pure.  He can't lie.  Because he's afraid of going to hell if he does.  He wants everyone to be happy and carefree like he is.  Even as a young toddler, if he saw another child crying, he would go over and rub their back in the hopes that would fix whatever was bothering them.  When he was about 5 years old, and still not struggling with being verbal, I asked him why he did that.  

"They know they be not alone"

In his own broken words, he wanted them to know that while they were suffering, they were NOT alone.  

The thought of that alone makes my eyes water.  He can barely speak.  People pass him by all the time for playing with him, choosing him, or just even talking to him.  But when someone else was suffering all he wanted was for them to KNOW that they aren't alone.  

Sometimes I'm annoyed and a lot of the time I'm tired.  But most of the time I really think that I am not worthy to have such a wonderful and kind soul as my son.  

Wouldn't it be wonderful if during this time of COVID, no matter what your beliefs are, antimasker, antivaxer, pro-mask, earlybirdvaxer, WHATEVER you believe, wouldn't it be great if at the core of it all, we just were WITH people.  Said nothing but just were WITH them so that they knew they were not alone.  

Let that sink in for a little while.  

Kiefer's Superpower

Today's blog post is written by my husband.  It was an email he sent me and I immediately wrote him back and said, that's the next blog post!  

Read below: 

I was thinking about Kiefer.  Through some miracle of sperm meeting egg, he developed a superpower.  We think of gene abnormalities as being something negative.  Many superheros go through a genetic mutation to become 'super-powered'. The Hulk, Spiderman, etc.  

That's what happened to Kiefer.  His superpower is kindness, endless capacity for love, giving without any need for reciprocity, and the ability to bond people together.  He is pure innocence.  He calls out language injustice ("language!"), heals broken days ("hug?"), and brings people together ("will you be with me forever?").  

It's not that he won't be able to have a productive, happy, adulthood...it's that we and others will judge him with our lens.  It is not he that's at the disadvantage, it's us.  We cannot understand his level of happiness and his desire to be around us.  He is more content than anyone I know.  He asks for almost nothing, he's happy with the smallest of gestures.  The question is not 'will Kiefer have a fulfilling adulthood?' the question should be "how can I be more happy and content like Kiefer?" 

I love him.  I love all his little quirks.  "Fun fact!", "Can I ask a question?", "Did you know...".  He's a walking encyclopedia of information and misinformation.  He's an interesting person and it's a privilege if you get to know him.  

The issues that I have with Kiefer, I've discovered, are actually my issues.  I sometimes lack patience, not because of him, because of everything else that is going on.  I sometimes get frustrated when he spills or gags.  Then I think, "really??  You're frustrated that his seizures made him spill milk?  You're frustrated his condition gives him a strong gag reflex?"  My lack of empathy surprises me and shames me.  

We still have to raise him to be respectful of social norms.  He needs to learn to be patient when he wants to share a fun fact.  He has to learn to be appropriate in a world where appropriateness is a nuance, based on calculating many factors to get it right (who's in the room, how close a friend/relation they are, what are the feelings and beliefs of the people in the room...)

As neurotypical people, our brains interpret so much of this virtually instantaneously allowing us to tailor our content to the audience. 

With Kiefer, it's just innocence.  "I like Maive.  I'm going to hug and kiss her and I'm going to buy her a diamond.  Because I like her and that's what people do."  

My pledge is to try and be better.  Understand that the issues, mostly, are mine.  That I'm tired.  I miss my wife.  I'm stressed about life stuff.  The other kids get it and I need to do better.  Kiefer is teaching me how to do better.  

I love you and I love us.  We are going to be great, all of us.  

❤❤

Autism isn't a game...

I just became aware of an “Autism Awareness” game on Facebook. Some funny and random status is posted. If you like or comment on it, you are private messaged and asked to choose your own funny and random status all in the name of autism awareness.

I’m offended by this game.

Our 9-year-old son is diagnosed with ASD. We are lucky he is high functioning. But he also struggles. We’ve gone through therapy of various kinds, tutors, medications, and tests. We've slept much less, worked much more and loved as you can only imagine.

If you want autism awareness, come and witness the fight Kiefer fights EVERY. DAMN. DAY.

There is nothing about a careless game on Facebook that makes you more AWARE or educated. I’m always happy to talk about what we’ve gone through and what we’ve SURVIVED - despite doctors and specialists telling us we won’t. Kiefer won’t quit. And neither will we. If you want Awareness, have a coffee with me, or read my blog. I’ve never been silent about our journey.

The problem I have with this game is that people think they are actually helping. That they ARE actually spreading awareness. But as I asked the friend who shared it with me, what more do you know about autism now that you have shared that post? What more are you aware of? She embarrassingly admitted nothing. She admitted she was not more aware, she was not more educated and it did nothing in the name of autism.

If you seriously want to help, please find a charity to donate to that will help kids with autism. Share an EDUCATIONAL post about autism. Donate your time to work with kids with autism.

Just know, that playing a status game on Facebook does NOTHING for awareness. It's a game and it mocks those who are going through the struggles every day.

Thanks for reading

*Edited from my recent Facebook post.  

Coach says...

My girlfriend shared a video with me the other day.  Jason McElwain, who has autism, finally gets his chance to play in a high school basketball game.  The team chose Jason to be their manager.  They included him in their team because of his love of the sport.  It's his job, he explains, to be enthusiastic.  It was the final home game of the season and the coach decided to have Jason 'suit up'.  The coach explains that he can't promise that Jason will play, but he will do his best.  Jason agrees.

With only 4 minutes and 19 seconds left in the game, the coach calls on Jason to get on the court.  The student section in the crowd was completely full with the news that Jason 'might' play.  The crowd went wild as Jason stepped onto the court as a player for the first time.  Jason made his first shot as he got the ball, and unfortunately it was all air.  Then his third time down the court he gets the ball again and shoots from the 3 point line and nothing but net!!  All in all, Jason scores 7/13 shots, 6/10 in the 3 point zone.  Every basket invoked louder and crazier cheers from the crowd.  The last shot, a three point nothing but net at the buzzer, had the entire crowd go crazy running onto the court lifting Jason high above their heads.

It's a video that has gone viral and has the most stoic of us, in tears.

A couple of weeks ago, before March break, my 9 year old son with autism came home with a note in his agenda book.  "BASKETBALL TRYOUTS - 12:30 pm" was written in his agenda book.

"Kiefer, are you trying out for the basketball team?" I asked.

"Ya mom, so we need a get a basketball.  So I can practice." Kiefer replied.  Over March break we did get a basketball, and having been on my high school basketball team many years before, as well as having coached, I started trying to teach Kiefer a few fundamentals.

"This is a bounce pass Kiefer.  Can you try this?"

He started to get better at catching and had a strong, and accurate pass.  We don't have a hoop to practice his shot, but with his gross motor skills behind other kids of his age, I thought we would start small.

Kiefer was happy with his progress.  He left the morning of tryouts with 'basketball clothes' ready for his tryout.

When I picked Kiefer up that night, I asked him, "how did tryouts go?"  I had been thinking of him all day.

"REALLY GOOD!" Kiefer exclaimed.  "The coach says I did awesome!  I even got a goal!"

"You mean a basket?" I corrected.

"YA!  A BASKET!  I did awesome!"

"I'm really proud of you Kiefer, just for trying!" I wasn't sure what the school policy was going to be on letting my, obviously behind, child take part on the team.

My older son and I had a few errands to run that night, and as we drove home I thought, I'll stop in the school and see if a list has been posted.

Well a list had been posted.  And Kiefer's name was NOT on that list.

As my oldest son and I told Kiefer the news, he broke down in tears.  Full on, big, wet, rolling down his face, tears.

"Maybe the coach will give me another chance Mom..." Kiefer tried to rationalize in his mind how he could be a part of this team, he desired so strongly to be a part of.

"I don't think so Kiefer. Many of the kids are older than you.  We will just keep practicing and get better for next year."

I don't remember what else the conversation was like.  All I remember is the look on his face as his heart broke, discovering there was a group of people who didn't want him.  A team that he was not allowed to be a part of.

I get it.  Kiefer is work.  Having Kiefer be on the team means that someone will have to watch him and take care of him most of the time.  With a short attention span and less defined gross motor skills than that of his teammates, Kiefer is a liability.

But my heart broke right along side his, as I held him while he cried.  He doesn't see himself as different.  He doesn't understand why he can't belong.

There are many feel good YouTube or Facebook videos out there about the kid with special needs who's friends with the quarter back.  Or the kid with disabilities who gets invited to play a game with kids all 'faking it' in rolling chairs or wagons to be just like him in his wheelchair.  The kid with down syndrome who is asked to prom by the prom Queen.  We start to think, as we immerse ourselves in this feel-good social media, that this is the norm.  That there's nothing to 'feel sorry' for, or we start to think that these kids are already taken care of - people are looking out for them.

But we don't live in nostalgic feed-good YouTube-ville.  It's not the norm.  The people looking out for them are the fierce Momma and Poppa Bears (and if you're lucky Brother and Sister bears, and Grandma and Grandpa Bears).  And those kids DO have heartbreak - more than your neuro-typical kids.  More than the able bodied kids.  Just more.  And there's no magical viral video of us picking up the pieces.

Because, honestly, that's just our everyday.

💔

I was blind, but now I see...

Have you ever had an out of body experience where you suddenly see the world from a different vantage point?  It's like somehow, you are transported outside of your body, and all your thoughts, values, preconceived ideas - they are all left behind.  And somehow you are just able to view a situation without prejudice, or any assumptions at all.  In these salient moments, it's like the veil is lifted or your eyes are suddenly opened for the first time.

I had that experience the other day.  It was absolutely surreal.  It also broke my heart and shook my faith right to it's core.

It wasn't a dramatic moment at all.  Kiefer was playing with Paul in our bed.  They were snuggling and giggling and making jokes.  To be honest, it was a typical Saturday afternoon in our house.

"Please, you tickle me under (Kiefer points to his arm pits)...NO!!!  Daddy  - snort - giggle - DADDY STOP" he musters through laughing.

I don't know why but in that moment I looked at Kiefer and it hit me like a ton of bricks.

My son has special needs.  My son is different from everyone else in his grade.  

Of course I know that he has special needs.  Of course I know we visit the pediatric neurologist once every six months.  I know that we give him "brain altering" (as they explained it to us) medication three times daily.  I know that he doesn't talk the same.  I know that he doesn't act his age.  I KNOW all these things.  But somehow they didn't ever all add up to him being completely different.  He was just a little delayed.  Or he'll get the speech eventually.  So he can't draw as good as his classmates.  I just always thought, he will eventually catch up.  He will eventually heal.  He will eventually grow out of these seizures.  

Individually, all these things were minor differences between him and his classmates.  

But as I listened to him giggle and leave out a preposition as he spoke, all of the sudden all the differences added themselves together and the sum equaled a boy who was different.  

Do you know what I remember about the kids who had special needs from when I was young?  We ignored them.  And ignoring them was the nice thing to do.  Others teased them.  They didn't have friends.  Oh sure, people were friendly to them, but they didn't have a tribe that they associated with day in and day out.  They were loners.  They ate alone and talked to very few people.  They talked when they were talked to.  They didn't get invited to birthday parties or end of school year pool parties, and they didn't go to prom.  They were the misfits that the student body, largely, tried to forget.  

And all of the sudden, this realization came crashing in, flooding my brain like a tidal wave and there was nothing that could stop it.  

My boy is different.  The kind of different people don't like.  The kind of different they don't welcome in.  The kind of different that won't ever catch up.  The kind of different that won't ever heal.  The kind of different - that one day he will wake up and realize he is.  

And I just hugged him.  Tight.  Wanting to make up for all that he will miss out on in life in one big squeezy hug.  

The thing that you don't see, is that I DO like my son.  I do like spending time with him.  He IS different, but he is funny, and caring and courageous and has taught me more about life and how to love unconditionally than anyone else ever has.  He has a heart as big as the ocean.  He knows more about dinosaurs than anyone I have ever met!  He wants the world to be happy and he leaves out NO ONE.   Kiefer brings so much to my life, I could never even hope to capture how much better my life is in words.  He opens my eyes to the tiny things, he brings compassion to our lives, he brings so much love.  

I wish I could go back in time and sit down with one of those kids.  I'd have lunch with them.  I'd share my snacks.  I'd invite them over to my house.  I would be their friend.  Because you know why?  

Not because they needed me.  

Because I needed them.  

💕

What would you ask God?

Christmas break is coming to a close - and while I have cherished the time I have been able to spend with the boys, there has been a lot of fighting between the boys, they are all getting cabin fever and school will be a welcome relief to the whim of being on 'vacation'.

We decided to go to Vaughan Mills Mall tonight so the kids could spend the money Grandma and Grandpa gave them under the Christmas tree.  Of course, we had to hit the best Lego store so off we went.  Kiefer, who's very choosy when it comes to toys, actually found a super villain toy that he LOVES and can't wait to play with - so that was an added bonus.  After the mall, we went to visit Daddy at his work and have dinner at the neighboring mall.  We enjoyed food court dinner (everyone gets exactly what they want) and then watched a show at work on the BIG screen.

On the way home the kids chatted happily about what they were going to do with their new sets and how they were excited to call Grandma and Grandpa and tell them how they had spent the money.

Then, out of the blue, Parker asked me, "Mom, if you could ask God one question what would it be?"  I immediately knew my question - but it was too personal to share.  Then he continued, "Actually, if you could talk to him for 10 minutes and talk about, or ask whatever you wanted, what would you talk about?"

That made me think deeper.  I knew exactly what my first question would be.

"Kiefer.  All his struggles.  WHY?"

The thought almost instantly brought me to tears.  He is an amazing boy who loves to love.  He is concerned with EVERYONE'S happiness.  And his latest request at his last doctors appointment broke my heart.

"Dr. Langburt, please I ask you a question?"

"Sure buddy.  What's up?"

"Please you take my seizures away"

COMPOSE YOURSELF MOM!!!  I could feel my heart instantly breaking into a million pieces but he's looking at the doctor and ME for an answer.   The doctor looked at me helplessly.  This extremely educated pediatric neurologist is lost for words by the question of a 9 year old!  I quickly jump in.

"Well that's why we're here sweetie.  Dr. Langburt is doing everything he knows how to help you get rid of them."

"Maybe you need to ask a friend" Kiefer replies.

Dr. Langburt lets out a little laugh - a pretty big deal for this stoic doctor.

"That's a good idea Kiefer.  I'm going to talk to some of my friends about you."

So that's it.  That would be my one question if I had the chance.

Why God? Why make this lovely, innocent, caring bundle of love suffer?  What purpose does it serve?  What lessons are we or Kiefer supposed to learn from it?  How does this help us grow??

Parker and Blaine talked about their questions.  Parker wanted to know if we were alone in the universe.  (That's a good one)  Blaine wanted to know if he was going to be rich when he grew up.  Parker wanted to know what heaven was like.  Blaine wanted to know if reincarnation was really a thing.

Me, I kept quiet while I pondered it all.

What would I talk to God about for 10 minutes.

Parker talked about being scared to go to heaven because it was so long.

"Like we'll be there forever.  Like billions of years but we're only here for like a hundred - if we're lucky!  What are we going to do in heaven for a billion years?!"

And then I thought of a few.

What's the point?  Regardless of what you believe in...heaven, hell, reincarnation whatever.

What is the point of being here?  What is the meaning of our ever so short lives in the comparison of the grand scheme of things?  Parker is right.  100 years seems so insignificant.  So what's the point?

Then I thought back to Kiefer and his enormous heart.

And almost as I was thinking it, Kiefer spoke up.

"God just wants you be kind ... love people.  You be kind, you go to heaven and be happy.  You be happy here, you be happy there (heaven).  That's it.  That's all God wants."

It's kind of odd, but I honestly think he nailed it.

From the mouths of babes.

💗

Another change in our "normal"

I seem to be obsessed with the word "normal".  Maybe it's because there is NOTHING normal about me.  I mean right from birth.

I was born to a 16 year old mother who had a few too many drinks at a party and had sex for the first time.  Yup FIRST TIME.  She got pregnant and concealed her pregnancy from her parents for 7 months.  SEVEN MONTHS.  Finally they called her into their room to talk and said, "Look we know you're pregnant we just don't know how far along you are".  I can only imagine the look on their faces when my birth mom told them '7 months'.

My birth was quick.  I was born within a few hours.  They put my mother out for the final push and she never got to hold me.  I was whisked away as quickly as I had come into the world.  My birth mom only got to look at me through glass.  She changed her mind and wanted to take me home, but at only 16 years old, what was she going to do with me?  Really?

I was given up for adoption and placed into my family.  I couldn't have chosen better parents.

But that's not a "normal" story, now is it?

Kiefer was given a third medication to take, along with the other two he takes 3 times a day.  This new medication is a bedtime medication.  So he takes it after he's had three doses of 2 medications during the day.  This new medication is supposed to help further with the seizures, but also help with sleep.

If someone told me I would survive waking up through the night for 9 years I would have laughed in their face.  If someone told me, that I wouldn't get a full nights sleep unless I was on vacation without my kids for 9 years I'm not sure I would have had another kid to be honest.  I LOVE my sleep.  Always have.

But I wouldn't change having Kiefer for the world.

While my heart was breaking as we took another big step away from 'normal', Kiefer kept to his happy go lucky self!

We decided to visit Daddy after the appointment and he took us to the mall for lunch.  Kiefer didn't even care about the food - he cared about us - spending time with us and being the center of our focus.  Even if, for just a few short hours.

He comes with struggles, and makes me wonder what 'normal' even is.  But he has such a big heart, he loves everyone so unconditionally and he inspires me to be a better mom and a better person.
He has changed my life in so many ways and I would fight dragons for him.  He brings a joy to my life I didn't even know was possible.

So yeah, our 'normal' is anything but.

I may be a little overwhelmed, and emotional, but I still see that I am so blessed. 
💛