Surround yourself...

I have this very special group of friends.  All of us share our lives with special need children.  Girls, boys, high functioning, low functioning, verbal, non-verbal, here on Earth, or now up in heaven.  We met while our children attended the same elementary school over 15 years ago.

We don't get together often enough, but when we do- it is epic. Last night 7 of us gathered at a local restaurant for a very fast 3 hours.

No topic is to sensitive.  Tears are allowed. Teasing is encouraged.  No one attempts to garner pity or sympathy.  Laughter is required.  If you couldn't laugh when you arrived, you will hurt from it before you leave.

The most remarkable thing I take from our visit is a sense of peace.  Reliving old stories and sharing new ones restores my soul.  Surrounded by women who have 'been there, done that' reinforces the desire to move forward and not wallow in the struggle.  If they can keep doing it then I can too! 

Social media, smart phones, and the internet have made the world a little smaller.  Last night the conversation turned to stories about an old friend of the 'Mom Club' who moved away 13+ years ago.  After some discussion we remembered her husband's first name, found a few options in the white pages and made a cold call to the most likely number.  All while sitting at a table in a Mexican restaurant.  This morning I 'friended' her on facebook. 

There is a saying that goes: 'Surround yourself with people who make you happy' 

Last night I shared an evening with a group of women who could easily focus on the negatives of life.
Last night I laughed until I cried.
Last night I overshared.
Last night I teased.
Last night I shared an evening with a group of women who make me happy.

I am so blessed to have this group of friends and so many others. 

Apron Strings

Just pretend I've been posting at least once a week since September...okay?

Kelsey is 22, almost done with college.  Her apron strings hang loosely around my thumb- because I think she wants them there.  A few weeks ago she called me early in the morning:

Kelsey:  Mom, we don't have any power!

Me:  Well there have been some super high winds all night across the state.  You probably have some power lines down nearby.

Kelsey:  I called the landlord to see if it was just us, but he didn't answer.

Me:  Sweetheart, your landlord won't have a clue about why you don't have power.  Have you turned on the radio?

Kelsey:  We don't have any power!

(I made a mental note to purchase the child a battery operated radio ASAP)

Me:  Have you checked the power company's website to see if your outage has been reported?

Kelsey:  We don't have any power!

Me:  You have a frickin' iPhone with Internet access...

Kelsey:  Well I called you instead...I'm not looking very smart right now, am I?

Me:  Honestly, I'm not sure how you've gotten through 3+ years of college.

Kelsey:  In my defense, my roommate couldn't figure out why our wifi wasn't working, I had to tell her that it was because we had no power.

Me:  You are living with the right people.  You fit right in.

Andy is now 21.  He is involved in a work program called Project Search.  He works at a local hospital and rides the city bus to and from work every day.  I try to give him some leeway with his apron strings because this program encourages independence.  His strings are in a single loop around my pinkie finger...

Andy:  Mom, I don't get lost in the hospital at all.  I'm brave.

Me:  That's good.  So you know your way around the building?

Andy:  Kelly says I'm an old pro at this.

Me:  Well Mr. Pro, go shave your beard. 

Andy:  MOOOOOooooommm, why do you make me shave every day?

Me:  So you don't go to work looking messy and unprofessional.

Andy:  I shaved yesterday!

Me:  You also took a shower yesterday, and brushed your teeth yesterday.  Somethings must be done yesterday, today and tomorrow. 

Andy:  I hate shaving, I hate brushing my teeth too.  I only like drawing pictures and chicken nuggets!

Me:  Well that is wonderful.  By the way, your laundry is all done.  You can fold it on the table.

Andy: MOOOOOOOoooooommm, why do I have to fold stupid laundry!?

Me:  Have you ever heard of a Laundry Fairy?

Andy:  NO!

Me:  Well neither have I.  Fold your laundry after you shave!!

Mike is 19 and graduated last spring from high school.  He is currently taking classes at the local technical college. He is a young man whose world is still quite small- he has a LOT of free time.  The first few months I almost went nuts. Mike's strings feel like they are wrapped around my ankles since he seems to always be underfoot:

Mike:  Hey Mom, what are you doing?

Me:  Just loading the dishwasher.

Mike:  Are you going to do anything else today?  You know, like- something productive?

Me:  What are you saying?

Mike:  Well, you don't really do much as far as I can see.

(My death stare begins, but he's not making eye contact yet, so he continues)

Mike:  Sure, you wash dishes, make dinner, play with the pups- but what do you really do to keep busy?

Me:  Let me see- what do I do to be productive?  I was up at 4:30 today and so far I have:

Washed 3 loads of laundry
Baked a loaf of bread
Cleaned the kitchen after Dad's eggs, your sugar toast, and Andy's milk spill.
I repaired a picture frame
Swept the garage
Sat down and watched the local morning news with a cup of coffee
Drove your brother to the bus stop
Drove the neighbor guys to work

(Mike has finally looked up and made eye contact)

Me:  Now I plan to clean the upstairs bathrooms
Change the bedding on our bed
Wash the floors on my hands and knees
Maybe weed the flowerbeds one last time before it snows
Touch up the paint in the hallway
Take the puppies for a walk
Run a mile or two myself
Pick up your father for lunch
Take your father back to work
Dust (oh who are we kidding, I never dust)
Pick up your brother and attend a meeting about Project Search
Fix dinner
Eat dinner
Clean the dinner dishes
Make coffee for tomorrow
Sit down and fight about not wanting to watch football, hunting or ESPN News with your father
Crochet a bit
Go to bed

What exactly is your definition of "being productive?"  This is simply my definition of Monday!

Mike:  I've made you mad, haven't I?

Me:  WHAT WAS YOUR FIRST CLUE?  What exactly do you have planned today that fits your definition of "being productive"?

Mike:  I made my bed. 

Me:  Would I be pleased with the final result?

Mike:  You have ridiculous expectations when it comes to my bedroom.

Me:  I would be happy if it didn't smell like the boys' locker room and your quilt was 60% straightened.

Mike:  Like I said- ridiculous expectations.

Me:  I'm going to start charging you rent.


I'm glad they all need me to hold a portion of their apron strings.  Kelsey needs me to answer the phone. Andy needs me to monitor his beard and run the washing machine. Mike needs me to refrain from causing him bodily harm.  John needs a winter project like he had last year- but that is a post for another time.  His mother gave me his strings almost 23 years ago!

Special Fire Alarms at the YMCA

I'm back after a long summer break.  Here's an oldie but a goodie...

Back more years than I can figure out in my head (late 1990's?) Kelsey played on a winter basketball team at the local YMCA.  John was one of the coaches so he sat on the far side of the gym with the team.  I stayed across the gym, along the back wall behind all the parents in the folding chairs.   My boys (and other children) played in the hallway during the games. 

I was constantly looking from the gym floor to the hallway trying to watch one daughter and two sons in different areas.  I'm watching Kelsey's team on the court when suddenly the building fire alarms go off!  Instinct kicks in- John will take care of Kelsey, I have to get the boys!

I turn to the hallway to see Andy standing with the fire alarm trigger in his fingers.

Andy had pulled the alarm...crap, oh crap...oh crap!!!!!!

YMCA staff come running.  I tell anyone who will listen that it is a false alarm. I apologize profusely all while turning from salmon, to pink, to red.  A crowd has gathered in the doorway from the gym.  I couldn't run if I tried. I am mortified, and Andy is clueless.

Apparently the little glass bar that offers some resistance was broken earlier in the week.  Without that glass bar, it was very easy for Andy to lift the trigger and set off the alarm.

The firemen came quickly and shut the alarm off.  I explain that Andy is autistic and that I had looked away a little to long. 

Now here's the funny part...

Just as I am starting to catch my breath- my beloved husband comes flying into the hallway holding little Mike from the armpits. 

John: "Would you please watch your son- I'm trying to coach a game in there!"

(He swears he never saw the firemen or staff all standing around me in that hallway)

Amy:  I'm sorry, I was trying answer all the questions the firemen have for your other son WHO SET OFF THE ALARM IN THE FIRST PLACE!!!"

(He realized his error, handed me the smallest child and sheepishly headed back to the gym.)

The firemen seemed really understanding after that exchange, and a new little glass bar was put in place. I headed back into the gym with two boys to sit on the floor. John has the van keys so I can't leave his sorry a**.  I am embarrassed, shaken and now pissed off at my husband. 

Now here is the mean part...

The team was made up of Kelsey's classmates.  That meant that 50% of those parents watching the game knew our family very well.  I had coached most of their daughters for 3+ summers of t-ball, and a few years of girl scouts.  They all knew my boys were a handful. 

As I'm sitting on the floor waiting for the game to end- I can hear the whispers and a snarky word here and there.  I don't know who is saying what, but I'm certain no one is defending me.  

I'm now pissed off at my husband, hurt by the parents around me, and the irate at the person who didn't replace the stupid little glass bar on the fire alarm!!!

Then it happened- that 'one mother' decided to make sure I knew I had messed up big.  This woman has known me at least 4 years.  At some point I must have offended her because:

She Witch: Amy?

Me:  Yes?

Evil Lady: Was that one of your kids who set off the alarm?

Me: Yes, I'm sorry.  Andy pulled the alarm, the glass resister bar was broken earlier today.

Snotty Wench: Ooooooh, well how did that happen?  Were you watching him?

Me: Yes, yes I was.  He was just that quick.

Hag from Hell: Wow, considering he's special and everything.

Now- let me be clear, she didn't say 'special' in a nice tone.  She said it like it was the most vile and disgusting thing to flow from her tongue.  It wasn't said to offer empathy- it was said to wound.  She wounded me more than had she slapped me in the face.  She kicked me when I was down- and she knew it. 

Here's the moral of the story...

Seven years later, that same 'Nasty Momma' called me.   Actually she called me 3 times- I accidentally answered the 3rd time.  Her son had been recently diagnosed with Asperger's. 

I am proud to report that I answered all her questions kindly, gently and honestly because that was the right thing to do.

(Honestly- I just didn't have the schutzpah to tell her off)




 

Spring Sprang, Changes Coming, and Whatever!

It has been quite a while since I've sat down in front of this little keyboard and pounded out a post.  Things are changing around here and I've just been trying to keep up.

I live in central Wisconsin.  For 9 months of the typical year we are inside, keeping comfy and wondering when it will get warm outside again.  3 months of the year we are spending every daylight hour possible- outside (secretly wishing it would get cooler). Once the thermometer hits 50 degrees- we are pulling weeds, raking lawns, washing cars and windows, and doing anything that gives us an excuse to be outside.

John and I finished the garage project from hell in April.  I will never plaster a wall or ceiling again.  The saddest moment occurred when I realized that the tallest person in our family (my hubby) is on the tallest ladder working on the lowest part of a wall.  At the same time I (the shortest person in the family) am plastering the highest part of the garage on the shortest ladder we own.

Grandma is getting through her chemo.  Some days are better than others, but nothing easy is ever worth fighting for. 

Kelsey bought her first car a few weeks ago.  We put the title in John's name to give Kelsey a discounted rate on her insurance.  Now when she gets a bit sassy John tells her "Don't make me put your name on that car title!!!!"

Andy is finishing his last year of actual high school.  He's moving on to a community work experience program next fall.  He sang a solo with the Varsity choir last week.  Although I missed it because Grandma had a bad chemo reaction, I cried when I listened to the performance on Kelsey's cell phone.  The boy inherited my love of music, and apparently my perfect pitch.

Mike is graduating from high school! This is the child that gave me a white streak up my part amongst my already grey head of hair.  Mike is set to attend classes next fall at the local technical college.  He plans make a career in welding.  I expect to receive garden art and industrial level patio furniture over the next 2 years.  I'm okay with that, but what I really want is for Mike to make his bed 1 day a month without me asking. 

Here's funny story of the week.....

Mike had to leave early for a band concert.  He took the Nissan at my suggestion.

He didn't see the van parked on the other side of the driveway.

When a Nissan rolls into the side of a van- it sounds like a very large aluminum can getting crushed very slowly.

John and I raced outside to find the vehicles jammed into each other.  Mike is climbing out of the driver's seat looking petrified.

John:  "What the hell Mike!"

Mike: "I was looking back the whole time; I didn't know the van was there!"

Me:  "Really?  You want to go on record saying you were looking back the whole time?!"

Mike:  "Oh great!!!  I suppose you're going to hold this over my head for years to come!"

Me:  "Pretty safe assumption there buddy!"

John:  "He took off the Nissan mirror, and I'm not sure I'm going to be able to get the cars apart!!"

John did manage to separate the vehicles after throwing it between reverse and drive 4 separate times while turning the wheel hard left and hard right.  (He looked like a NASCAR driver desperately trying to avoid a crash at 2 mph.)

I tell Mike to get into the van and go to his concert.  John is pacing the garage like a caged lion. 

Mike:  "It isn't my fault!  Mom told me to take the van!!"

John turns red and looks like he's going to have a stroke.  I press John toward the back door.

Me:  "Seriously Mike, would you just be quiet?  There is no one else you can possibly blame, and in the future, my advice would to start this kind of moment out with 'I'm really sorry.'  Now go to your concert."

Mike manages to regain his composure and takes off for his concert.  John comes out and starts to access the damage to his only new vehicle ever (although we've owned it for 5 years now).

John:  "I can't believe his actually did this!!!"

I look him in the eye and immediately start laughing.  By the grace of God himself- I have narrowly avoided doing this very thing to this very vehicle at least 3 different times!  Once I almost hit Kelsey's boyfriend's brand new truck.  When I saw what Mike had done my first thought was "Oh thank God it wasn't me!"

After a few hours John's stroke symptoms had lessened to a mild headache.  The two of them had talked it through and moved forward.  When I sent Kelsey a text photo of what Mike had done to the car she replied:

Kelsey: "Whoa, he beat me. I only did damage to the Nissan once."

Me:  "Actually you damaged the same vehicle 3 different times.  You once managed to hit a large 'road closed' sign while your passenger warned you!"

Kelsey:  "I only damaged the Nissan that one time!"

Me: "Kelsey, I have been chewed out vicariously 3 different times about 3 different things you did to the Nissan.  If I get chewed out, it counts!"

Kelsey:  "Whatever!"

Probably best she has her own car now. 

No more joking!

I quit smoking on March 26, 2013 the same day my mother-in-law started her chemo.

I know, I know…it is a disgusting, nasty, shameful addiction.  I was never proud to be a smoker.  To make this post easier for those who find my habit offensive and vile…I will substitute smoking with ‘joking’ for the rest of my post.

I loved joking.  It was my coping mechanism and my vice.  Needing a joke was an excuse to take a moment for myself.  When people ask me how I managed to get through the last 20 years raising my 3 kids I rarely admitted the truth…joking.  I didn’t actually hide my joking, but I didn’t advertise it either.

I loved joking.  It was an excuse to go outside and be alone.  It meant time for me even if it was only for 2, 5 or 10 minutes.  No one wanted to ‘hear my jokes’ so I would sit in the garage and savor the moments.  When the kids were young, joking was a way to calm down and reset myself.  The kids have grown, become more independent, and the stress levels have dropped. 

Why was I still joking?  I told myself that someday the right reason would come along to encourage me to stop.

I quit joking once for 2 whole years.  I started up again after an especially tragic event happened to one of my children.  Truthfully- the event was an excuse to start again.  I turned to my vice because no one would tell me not to at that time.  Even my husband said he understood. (I have a very patient husband.) 

For the last 12 years I have joked knowing that I would one day need to quit again.  I had done it once before and I knew what to expect.  It sucks rotten eggs!   Those memories are not the best motivators.

Then Grandma was diagnosed with breast cancer.  As I read through the paperwork from her biopsy, a word kept bouncing off the page…

CARCINOGEN

I know jokes contain carcinogens. 

“WHAT THE HELL AM I DOING????”

My mother-in-law is very health conscious. 

She eats right. 
She takes care of herself. 
My mother-in-law has cancer!

I need to at least quit joking.  Eating right and taking care of myself can come afterwards.  So, at 9:30, the morning of her first chemotherapy I joked for the last time.

After her treatment was finished I went straight from the hospital to the drug store and bought “The Patch”.   I had seizures as a child so I can’t take Chantix, and “The Patch” worked for me last time.

I didn’t tell anyone.  If I spoke of it aloud, then others would hold me accountable.  If I went public with my decision- then I had to stick to it. 

My family didn’t notice for 24 hours.  I finally told Kelsey the next afternoon because I realized that if no one knew- I might just start up again.  I told John when he got home from work that night.  I had made it through the first 24 hours and wanted to make sure I stuck with it for another 24.

According to an app I put on my phone- it has been 23 days since my last joke.  I have saved $178. (Jokes are pricey!)  I feel better.  My body is adjusting.  The worst is behind me.   I can’t say I’ll never joke again…but I’m trying my hardest.

Andyisms

My middle child has a creative mind and no filter behind his mouth.  A thought enters his brain and usually flies out of his mouth.  He sees it, he thinks it, and he says it.

Sometimes it is an original thought; more often it is a statement he has heard sometime over the last 20 years.  A movie line, a snarky comment he wasn’t mean to hear, or part of a song he heard on the radio.

You never see them coming.  His choices and situational placement could get him a job writing sitcoms in Hollywood- if they didn’t mind the recycling of previous episodes.

Here is a small collection of what we call….  ‘ANDY-ISMS’

“Mom, they don’t allow illness at school.  I am getting a cold (sniff, snort).  Illness is not allowed at school!!!!

(The new school year honeymoon was declared over with this one)

“Woohooo!!  Guess what…Spring is HERE!!  Only 274 more days until WINTER!!”

(There you have it folks. Something to look forward to?)

“Mom, was your Dad by chance a vulture cuz you are one silly looking vulture?”

(The boy greeted me with this the morning after a neighborhood party)

“Mom, you should never pull the arms off complete strangers!”

(Said with a British accent and I have no idea what he was referring too.)

“Mom, never touch a uvula, it could make you throw up!!”

(I had to look up the definition of uvula.  It is the dangle at the back of your throat)

“Molly quit barking like an animal!!”

(Would he have preferred the dog giggle or meow?)

“Smooookin’ is hazardous for your health!”

(He channeled Jim Carrey for one whole day!)

“We can water the trees just like the dogs do!”

(Thankfully we were up at the cabin)

“Mom, you can’t wear round shoes on square feet.”

(Logical, but I still want a pair of round shoes)

“MOM!! My name doesn’t work right on the computer- YOU NEED TO TYPE IN YOUR NAME OR I WON’T PLAY ON THE COMPUTER EVER AGAIN!!! Are you a virus or something?!?!?”

(He has no appreciation for parental controls on the kitchen computer!)

“Never, ever swim with alligators.”

(Living in Wisconsin lowers our risk level greatly!)

This is just a smattering of the goofy things the boys has rattled off over the years.  I wish I had kept a running list of what he has said over the years. 

What's it like?

Last week I spoke with a group of high school students.  Half of the class is special needs students, the other half are regular education.  This class provides gifts and experiences that all the students benefit from.  I have presented to this type of class in the past, and one question always comes up:

What is it like to be a parent of a special needs child?

After years of answering "Difficult, rewarding, trying, and sometimes painful"  I've created a new answer that I gave to the classroom of eager listeners last week.  I've tweaked it considerably and will probably have to read my answer in the future...but here goes...

Imagine your living room without any furniture.  On the floor is a million puzzle pieces.

You know you need to put that puzzle together as quickly as possible because every minute the picture on the puzzle pieces change. 

In one doorway are all your friends and family.  You hear cheers and words of encouragement:

"I don't know how you do it- I could never put that puzzle together."
"You are so awesome with puzzles!"
"It is so impressive to watch you work those pieces."

In the other doorway, another group watches your every move, commenting with hushed voices:

"That puzzle is too hard for her."
"I don't know why she's even trying; she'll never get it all done!"
"Puzzles like that shouldn't even be in stores."

After a while, you get some of the edges put together.  You finally feel like you have something to work with but now....

The puzzle pieces change shape every 5 minutes!

You feel pressured to put the puzzle together, quickly, and correctly.  You can't cheat because the pieces only go a certain way.

As your knees start to hurt and your back begins to ache- you start turning to the experts outside the window...

"Do you know how to slow down the picture changes?"
"Have you ever seen a puzzle like this before, are there any tricks to help me?"
"How do I stop the shapes from changing!?"

The experts shrug their shoulders and can only offer basic tips...

"Each puzzle is different, but you're making progress, keep going!"
"Maybe if the lighting was better you would have better results?"
"Have you had your eyes checked?  Where are your glasses?"

You feel all alone- on your hands and knees- struggling to make sense of the whole stupid puzzle.  Time slips away and you become focused on a single piece.  Obsessed with making that one piece fit somewhere!!

If you don't finish the stupid puzzle- you will never be able to use the living room again!  It is the one room of the house that everyone else gets to use whenever they want- because THEY DON'T HAVE A STUPID PUZZLE SPREAD ALL OVER THE FLOOR!!!!  You can't walk around the room without stepping on the puzzle.  The puzzle can't be moved because the pieces will fall apart!

The self pity, uncertainty, frustration and anger makes you start to cry.  Finally, you sit back on your feet for a short break.  The puzzle is consuming you.

As you look around the room you realize that you aren't the only one working on this puzzle.   Your friends have started on another corner, your family is searching for pieces that have almost slid under the rug, a teacher is holding up each box cover for reference as the pictures change and the experts are bringing your reading glasses and showing you examples of other people who have put similar puzzles together.

You stand up, stretch you back, creaking and cracking from toes to eyeballs.  You  thank everyone for their help. The negative comments turn into whisperers.  They can’t compete with the happy chatter in the living room as everyone else works on the puzzle.  In a moment of clarity, you decided to escort them out onto the street.  You calmly explain to them:

"If you can't or won't help us- you need to get out.  I only have room for my puzzle and anyone who will help."   

In time, you see more and more of the pieces fitting together.  A confidence and contentment fills your soul.  If the puzzle is never completely finished or perfect you decide you can live with it.

Everyone agrees that furniture can be moved if there is ever enough space. We can live with the puzzle on the floor.  We still have the kitchen, the backyard, the bedrooms and the bath.  It is more important that you have now realized that is isn't only your puzzle...

No one should do a puzzle alone.  Just be sure the people on the floor want to put the puzzle together too!