Monday, December 22, 2014

This Is Why I Don't Drink

So today, Kate was up early, like before 6 a.m., dressed and ready to go to work.  Could be because it is the holiday season and she can’t wait for Santa... could be because she wasn’t stimulated enough yesterday and was full of energy... could just be because.

So I’m trying to open my eyes with a cup of coffee, make breakfast for four, lunch for one and 5 dogs fed four different foods.  All the while Kate is following me, talking nonstop.  I’m still not sure what I put in Art’s lunch – just hoping it wasn’t one of the foods for the dogs.

I thought I had shut a baby gate but Kate got through it and so did one dog who doesn’t like the other dog and that started a fight.  Not that they got to each other, but the adrenaline rises when the barking starts.

Sarah and Adrienne working on Solar Car
Senior Prom
4th Grade maybe?
Sarah had rented a car to go to upper Michigan, I mean more like southern Canada, and move her best bud Miss A home from college over the weekend.  The rental car had to be dropped off at 7:30 am before I took her to the train, before I went to work. Kate’s bus doesn’t come until 8:15 and we left at 7:25 with her promising to wait inside for the bus.  She watches TV in the dining room while she waits so I was fairly certain she would stay put.

On the way to work Kate calls to discuss her birthday – which isn’t until January.  After that conversation I don’t take a couple of calls from her until I get to work.  She then calls to tell me her bus is late.  By my calculations it was still not time for it to come.
After the 3rd or 4th call from her I call and wake Patty up because if it is late, I will have to go get her and drive her to Our Place. 

Patty calls to tell me as soon as she got downstairs the bus came.  Now she is mad at me because she is awake for no reason.  Oh joy.

There is a long stretch between phone calls so I assume all is well... not.

I see a text from Art that says what is wrong with Kate.  I take the next call.  Kate is at the workshop – on a Monday – when she is supposed to be at Our Place.  Why the bus took her to the workshop is beyond me, but they won’t take her to Our Place even after she told them and believe me I bet that drivers ears were bleeding by the time she was done yelling at him that he was wrong.

I ask to talk to a worker and explain she should not be there and that I was on my way to get her.  I leave work and get in the car to go get her when the phone rings and it was Our Place looking for Kate.  I explained I was on my way and would be there within the hour. They said she called but they were not sure what she was saying – not surprised. 

By the way, Patty forgot to call yesterday to set up her bus so I have to leave work again at 2 to get her to work by 3.  I was supposed to have physical therapy today on my lunch hour but called to cancel that because I will spend that time driving children. 

This is why I don't drink,  I’m afraid if I started drinking I may not stop.

So I’m sitting here frustrated and the day isn’t even half over when the phone rings again – it is Kate.  All she says to me is “Hi Honey, you’re the best, Love Ya” and hangs up  ... sure hope she meant to call me.

Wednesday, October 29, 2014

All I Ever Wanted To Be Was Normal: To The Least Of These

All I Ever Wanted To Be Was Normal: To The Least Of These: Kate never ceases to amaze me.  When dealing with someone who has intellectual disabilities – it seems some areas of their abilities ...

To The Least Of These

Kate never ceases to amaze me. 

When dealing with someone who has intellectual disabilities – it seems some areas of their abilities are much more advanced than others. 

Like when you tell Kate to be quite – she continues to talk saying, I’m quite, and I’m not talking.  How is it that she cannot understand that she is still talking and NOT being quiet?

Yet, when she sees someone in need, or is not happy, or hurt, or sad – she gets that.  I’m not sure the correct term to use, compassion, empathy, love?

The “least of these” is a phrase that originates from Matthew 25:31–46, where Jesus speaks of those in need.

Kate has no problem asking someone if she can help them when she sees a need, even if it is only in her mind.  Like rolling down her window in the car and asking a stranger if they needed a ride.  After all–they looked like they did-apparently. 

Or like last Sunday at the Camp Hope Halloween Party (#3 for her).  I got there a little early and was observing the pinata beating.  She was very excited to go and grab a handful of the candy scattered on the floor.  She has this little jump she does when she is excited and kind of pumps her fist in the air.  She did that and then I saw her expression change drastically, to a very thoughtful look.

She had spotted a little girl dressed in a skeleton costume standing on the sideline.  She had her arms crossed in front of her chest, chin down, lower lip out.  Kate walked over to her and leaned over and was talking to her.  I was too far away to hear what Kate was saying.  The little girl’s expression never changed however.  Kate offered her a piece of candy – still no change.  So Kate took all the candy in her hands and put it gently on the crossed arms of the little girl, showed her open palms to the little girl and it looked like she said, “there, for you”. 

Then she did her turn and a little jump and was off to talk to someone else. 

How does she do that... and why can’t more people be like Kate and just show a little compassion or empathy or love, to the least of these?

I’m going to try harder today.  Thanks Kate.

Friday, October 17, 2014

All I Ever Wanted To Be Was Normal: Miss Social Butterfly

All I Ever Wanted To Be Was Normal: Miss Social Butterfly: As you all know, Kate is one busy girl.  My husband and I often joke we don’t have a social life because she does!  It isn't that we do...

Miss Social Butterfly

As you all know, Kate is one busy girl.  My husband and I often joke we don’t have a social life because she does!  It isn't that we don’t want her to be home – she just LOVES people and being social.  We are kinda boring to her by now I suppose.

I was reminded of this when I recently met with Our Place staff, going over her schedule there, goals and strategies.  I was telling them how grateful we were to find their program.  When Kate started attending there, we were trying to find out if she enjoyed being there as much as she did the  other programs she attended.  We were going to ask, Do you like Our Place better than.... and fill in the blanks with the names of these other programs.  We got as far as “Do you like Our Place better than” when she blurted out ‘Home’!  Enough said.

With Halloween quickly approaching, it is time for Halloween Parties.  Kate has 4 to attend this year – that happens when you have a social life. I have none to attend – therefore my theory holds true, I have no social life.

Camp Hope will be holding their annual Halloween Party again this year.  If you remember, she was so excited to go to Camp Hope at the end of July that she had her bags packed in February.   

Every year at Camp Hope they give out trophies.  You will never guess what award she received...

 Most Joyful of course!

Monday, September 22, 2014

Under Fall

Kate is home sick today.  So I am home from work today also.  She has had a cold - I was so hoping it would be allergies - since Friday.  Today it was the unproductive cough and running nose that didn't stop.

So off to the doctors.

Such a trooper waiting for the doctor to give us the good news, home today and tomorrow. Kate talks a lot normally - but when she is sick, even more so.

So next stop is the to the pharmacy. Of course it is next to Dunkin... so even better drugs in the form of Boston Kreme!

If you would ask her if she is sick, she would say, "I'm over the weather" or "I'm under fall" - close enough, we know she is "under the weather". 

I am always curious what the dogs do during the day... question answered.

Friday, August 8, 2014

Your Mission ‘Statement’ Should You Choose To Accept....

What is a mission statement you ask?

“A mission statement defines in a paragraph or so any entity's reason for existence. It embodies its philosophies, goals, ambitions and mores. Any entity that attempts to operate without a mission statement runs the risk of wandering through the world without having the ability to verify that it is on its intended course.”

That is all well and good for the corporate America – but what about little ole me?  hadn't given it any thought until recently for a work project, we were asked to write our “personal mission statement”.  Crazy I thought.  But then when I read the definition of a mission statement – wow – I don’t want to run the risk of wandering. But wait – I’m over 50 and I have never had a mission statement. Have I been wandering?

So I gave it my best shot, and I must admit – it made me think, hard, about what I want to be known for – work towards – or just be.  Here is mine:

My mission is to show others the knowledge in my heart and my love for the Lord. To be kind to the world, producing thought evoking designs and memory making moments; to show love, tolerance and respect to animals and humans of all abilities.

I printed this out and put it on my desk at work. It is a good reminder so I don’t get lost and start wandering, again. Maybe if we all had one to follow, not so many of us would forget what we consider important and lose our way.
Our foster dog Wilbur (10+ years, one eye, scars) with Patty

Monday, July 14, 2014

I'm Okay With You Going - Not!

Our three girls have always been close.  Their abilities are as vast as the ocean, but the love they share for each other is also as vast. We may not have done everything right as parents, but instilling the fact that family is important was one thing I can say we did do right.

When they were young I would often find all three in one bed in the morning, a twin bed.

I can remember Sarah lying in Patty's bed in ER after a Grand Mal Seizure hugging her.

And Kate - well, we know Kate is full of love and joy. 

We had been discussing the trip to Texas for awhile to help Kate understand that Rocket Girl would be gone for a long time.  Some days Kate will call Sarah at 2 am just to talk. She could go to her room to do that, but it is easier to call her on the phone I guess.

Sarah was getting ready to go on the Solar Car Race trip to Texas last week.  On Thursday it was a flurry of activity - we all procrastinate.  Sarah was going on a final run for supplies and asked Kate if she wanted to go.  Of course not.  But bring her back some sun screen and bug spray.  Lotions, batteries and phone numbers rank pretty high on her happiness level.

So Sarah got pretty well packed Thursday night thanks to Patty helping her find everything. Departure was going to be Friday afternoon.

When I got up Friday morning this is what I found in the hallway outside Kate's bedroom.  Be still my heart...

Thursday, July 3, 2014

Smarter Than She Looks

That would be my Kate.  She has grown up in the recent years. She has moved from Dora and Barney (thank God) to HGTV and all the remodeling shows. One of her favorite gifts for her Birthday was a subscription to HGTV magazine.  She knows all the designers by name - of course!

So I should not have been surprised by the birthday gift she got Sarah recently.  But I was shocked.  Kate went to the Milwaukee Fest with a group from The Center For Enriched Living.  We were told to send $20 for her to purchase lunch and a spending money if she wanted. She asked for more so she could by Sarah a birthday present while she was there. 

When she shops with me, she grabs the first shirt on the rack.  Exclaims "I Love It" and our shopping adventure is over.  Doesn't matter if it is too big or to small - she is done.

When she showed us the cowboy hat she got Sarah for her birthday present, Art and I looked at each other with shock.  When I asked her why a cowboy hat, she told me,"Sarah is going to Texas and will need it."

Sure enough, in about a week Sarah will be heading to Texas to start her solar car race with the ISU Solar Car Team and other colleges from around the country. 8 states in 8 days! 

I'm thinking there is a lot more going on in that pretty little head of hers than I realized. 

Friday, June 27, 2014

I Wonder What Else She Said...

Kate attends Our Place of New Trier Township every day.  Some days it is all day, some days only half.  She loves it there - and they love her.

Patty is now working there part time as a Program Assistant.  It has been interesting to hear her tell stories about Kate now that she has first hand knowledge of what is taking place there.

I posted in a previous blog how Kate enjoys calling us - and herself - names of characters from her favorite television shows.  Patty was in the van while they were going to the bowling alley for recreation.  One of the staff members was trying to get Kate's attention and said, "Katlin Cynthia".  Patty said - who are you talking to?  His response - your sister.  

Well, Kate's middle name is Marie so it confused Patty a little.  Come to find out - since staff knew her name was Katlin due to all the forms you fill out to attend, she changed her middle name to Cynthia (Angelica's doll on Rug Rats) and has told them that is her name. Clever girl huh?  Maybe not the angel I think she is?

We signed up to go to a concert with Our Place soon.  I was emailing the director back and forth and he said in one of the emails - you are welcome to come but no singing... I wonder if Kate told him how bad my voice was?  We joke that people don't even sit in front of us at church due to my voice.... hmmm.. wonder what else she has told them?

Monday, June 2, 2014

Life's Not Hard

So I'm normally not someone who has pity parties.  I'm usually the glass is half full type of person. The type that figures the person honking behind me when the light had turned green a millisecond ago is not a naturally born jerk, I say to myself they just got a call that someone they love is in the hospital and they have to get there - NOW!

So today I guess I was due.  After all, I do live with three adult women (Kate and the "other two" as she sometimes calls them are home from college - used to living on their own and now back in Mom and Dad's home-ouch), a husband and three dogs, two who have to be kept separated and I work full time.  Like I said, normally this is not an issue and I feel blessed to have a full life.

I get up every morning and make breakfast for 5 adults and three dogs.  I grab that first cup of coffee with my right hand my frying pan with the left and I prepare, cook, package and clean up - 5-6 days a week.  So on Sundays, lately - my husband I have been going to church (alone-almost a date) and out for breakfast after church (alone and a date!). This Sunday we didn't make it  to church - but I thought we would still go out for breakfast. How nice to be close enough to the restaurant- we could have even ridden our bikes up there. But no, he says how about scrambled eggs today instead of the breakfast sandwich.

I get out the frying pan and I made his scrambled and mine over easy.  Kate had already been up and eaten and gone back up to her room.  The "other two" were still sleeping. Art could tell I was upset and when he asked about what and I told him. He felt bad for not offering to take me out to breakfast, which made me feel bad for making him feel bad and then the tears started.

So I took the dog for a long bike ride trying to work it out.  No luck.  When I came back to the house Kate was at the computer and I guess she saw me upset.  I went out into the backyard to water the new plants in the yard, headset on to try again.  No luck, but at least the tears were done, just my heart hurt now.  I was coming back into the house when Kate met me at the door.  

Apparently she had asked Art why Mom was sad.  He said, "Sometimes life is just hard honey."  When she met me at the door, she put both her hands on my shoulders and said firmly, "Life's not hard Mom!" and then hugged me and tickled me under the chin and went back to her room to watch a new DVD she got from the library yesterday.

Your right Kate, it is all perspective and sometimes I lose mine.  Thanks for sharing your joy and reminding me, life's not hard - it was just a moment for me that was hard.  I'm good again, thanks!

Thursday, May 29, 2014

Sparkling Clean

We recently remodeled Kate's bathroom... really the bathroom is used by all of us but it is closest to her room so who can argue that logic?

When Kate takes her glasses off she is pretty much blind.  She actually sleeps in her glasses so she can see the TV or at 2 am when she announces she is going to the bathroom she doesn't fall or trip over the items on the floor in her room.

For at least the last 10 years that I can think of (since we moved into this house and the bathroom off the family room has two shower heads) she and I have showered together.  That way she was safe in the tub - no falls - and she was rinsed well.  The new bathroom gave me the freedom to shower alone!  Happy Dance.

The new shower is ADA accessible with hand grips, a low lip to get in and out and a shower head that can be raised or lowered on a bar. So the new routine is when I am almost done in the shower, I tell Bear (the German Shepherd who feels the need to guard me while I'm in the shower from Norman Bates I assume) to get Kate.  He opens her door and kisses her awake - she comes in and I get out. The shower head can be put on pause and that way the water is always the right temp when she gets in and she is "independent" in the shower now.

I come back in when I'm dressed to give her the final once over to be sure all the bubbles are down the drain, dry her off and help her dress.  This morning when I was toweling her off in the shower, she says to me, "Am I shiny?" with her arms spread wide and a huge smile on her face.  My question - why would you be shiny was answered quickly when she told me she used shampoo on her body to make it all shiny!

Tuesday, May 6, 2014

You Just Never Know What To Expect!

Kate called me at work today and this was the conversation:

Hi Mom, the policeman needs our home phone number.

Why Kate?

He does – tell me.

Kate, are you with the policeman now?

Yes Mom – I’m not in trouble.

Kate, can I please talk to the policeman?

Sure Mom...

Hello Ma’am, I’m Officer ____ of the Wilmette police department.  Your daughter is fine.  The bus that she was riding was in a minor accident and we are just taking the names and information of the riders as a formality. 

So Kate is fine?

Yes Ma’am she is.

She has a State ID in her purse that has her information on it.  Did she give that to you?

No Ma’am, she didn’t offer that to me.  But she did ask me for my business card so she could call me later.

Why am I not surprised!

Tuesday, April 29, 2014

Stranger Danger

Kate is gregarious to a fault! This girl would talk to the wall if it would talk back. At 18 months a full assessment was done on Kate and we were told that she would probably never walk or talk and that we should consider an institution setting, for the sake of the family of course. Parents out there – let this be a lesson to you – NEVER LET ANYONE LIMIT YOUR CHILD! For those of you that have the pleasure of knowing Kate, you know that your “ears bleed” after spending time with her she talks so much. In fact when she is not talking – she is talking. You can hear her saying “I’m not talking. I’m being quite. Shhh, not talking”.

My parents live out of town and we were spending the weekend. After a good night sleep by us, this is what my Mom had to say “I didn’t sleep a wink last night. Did you know Kate talks in her sleep all night?” Yes we did, but I guess we were used to it by now.

A very dear friend of mine, Barbara Blasco, wrote a book about her daughter. The Kathryn Blasco Story – It’s a Girl But Will She Live? In there this is what she had to say about Kate and her willingness to be everyone’s friend. We were on a train heading into Chicago to go start the process of guardianship of Kate. “We got off the train and walked up the stairs to the street level. Immediately, Katie turned to the girl walking beside her and asked, “What’s your name?” The girl said, “Lisa.” Cheryl reprimanded Katie and said, “I told you not to talk to strangers.” Katie answered, “She’s not a stranger. I know her. Her name is Lisa.” Her comment cracked us up.”

On the upside of her talking to anyone or anything - all the time, is she makes a great person to ask for donations.  We were at Walmart one Saturday collecting money for the Knights of Columbus and you can be sure no one got past Kate going in or coming out!
We were ever so grateful to the car industry when they installed window locks on vehicles. There was a time when we would go through a list of reminders to Kate when pulling up to a stop and pedestrians were on the sidewalk. I remember a it was raining and we were stopped by a train, before the automatic window locks.  Kate rolls down her window and asks the man standing on the sidewalk if he wants a ride.  “My Mom will give you a ride" she says. I am frantically trying to reach over her to yell “not really” and roll up her window - finally the train moves on.

Another time we saw a girl on the corner of a back street to Walmart on a very hot day.  She was standing at the corner like waiting for a bus- at not a bus stop. After the trip to Walmart she was still standing there.  A very large women, dressed in black on a hot day. This was a time I allowed Kate to roll down her window and offer a ride. Sure enough she was waiting for a bus – at not a bus stop - to take her to the train station.  Well, I do know where the train station is, so we did give her a ride.  Of course she and Kate exchanged phone numbers.  

We were in the store the other day and the lady behind us struck up a conversation with Kate.  She told us she used to work for NSSRA and was looking for a job. I proceeded to tell her of the different programs Kate is involved in and she even knew several of the staff members we mentioned.  Hopefully we helped her - Maybe it's not such a bad thing to talk to strangers... after all, her name was Karen, so now we know her!

Monday, April 21, 2014

Oh The Lessons We Learn

Maybe a better name for my blog would have been  "Lessons From Kate."  She has taught our family - and many others so many lessons over the years.  Just this last weekend I learned another one, about forgiveness.

Kate attends a wonderful program called Our Place.  Their mission  is to support teens and adults with developmental disabilities so that they can live meaningful, productive, socially connected lives in their home community.  You will notice in their mission statement, this population is referred to as adults and teens first.  In other words they are people who have a disability.  First and foremost, they are people.  Even if Kate can't really read or write, drive a car, pick out the seasonally appropriate clothing, she is a person; a person -like you and me - who has emotions.  

I wasn't there Saturday night, but staff pulled me aside when I picked her up and told me that Dick had been really mean to Kate, and then Jane joined in and they were so mean to Kate that she was crying... really hard.  Staff handled the situation and by the time we got there Dick and Jane were like Hi Kate's Mom to me, and Kate came bounding down the stairs full of stories about Karaoke night and singing High School Musical songs.  Dick was asking when he and Kate could go see a movie.  

I didn't bring it up to her that night because to be honest, my heart was broken for her... for many reasons. One-I wasn't there to protect her. I'm the Mom, that is my job!  For two- I had to wrap my head around the fact that the kids who are teased all their lives for being different - tease and make fun of people too.  Really? Of anyone, I would think they knew what that felt like and wouldn't put that pain on anyone else.  But then you have remember, first and foremost, they are people.

In less than two hours, Kate's heart had evidently been broken, mended and the situation was forgiven and forgotten.  How many of us can say that?  How many of us aren't speaking to a family member for a word said that hurt our feelings?  How many of us have hurt someone and not asked to be forgiven? Kate, and others like her, experience life in a lot of the same ways we do, but their perspectives are different.  I  often wish mine was more like hers.

I did ask her this morning if she wanted to talk about what happened last night that made her cry.  Her response to me - No, we apologized.  What's for breakfast?  Just like that - it was over for her.  For me, I will think it about it for a long time I'm sure - and worry about her, but that is my job.  Her job is to share the joy - and she is doing it very well. 

Monday, April 14, 2014

Show Me The Money

Everyone likes to work for the all mighty dollar. Kate works for it - literally - a buck!  A buck or a ten mean pretty much the same to her.  She has several chores at home that she is required to do.  One of them is to bring the garbage cans back from the road up to the garage.  For that she earns a buck.  As there are two cans, garbage and recycling, there have been times I have helped, so she wanted to share the buck with me...bless her heart.

Mind you, if Kate ever needs anything, we buy it for her or she will use the money she gets as gifts, or gift cards.  I have never seen her spend her buck.  Maybe that is because it stays in the kitchen. When we give her the buck, it comes from the change jar in the pantry.  It took me about a month to realize Kate was putting the buck back in the change jar after we gave it to her.  We apparently are recycling the same dollar over and over.  

When we went out to dinner recently, we left Kate home with my Mom.  I told Kate if she was good I would give her a buck!  Just to be silly I told Mom if she was good she could have a buck also. She smiled and went and looked in the change jar to see if there were two bucks in there!

That became a standing joke in the house, if you are good Grandma you can have a buck!  Even Kate would reminder her of that if we were going somewhere and Mom was staying home. Well, Mom has just moved into an assisted living facility.  She has lived in the same neighborhood for 65 years except when she visited us for the winter months.  This is quite the transition for her, leaving the house Dad built and all her neighbors she has known forever.  

Kate was sitting at the table with me the other night while I was signing a card to send her and Kate asked what it was for. I explained I wanted to cheer Grandma up at her new house.  Kate went and got a dollar out of the change jar for the card…. bless her heart.

Monday, April 7, 2014

Rocket Girl - For Real!

When I asked Sarah aka Rocket Girl to give me some info on her Solar Car for this blog, this is what she had to say about that!

Solarcar was something that started off as a fascination- you mean a solar powered car? that I can drive?? cool! And turned into more of what some might call a "hobby" other's may call and "obsession".  Some days it's all I talk or think about, and that goes for nights as well- I either dream about it, or dont sleep at all worrying about it. 

Whatever you classify it as, it's probably one of the coolest thing's I've been apart of. I'm currently on my third year on the team and am more excited about it as ever. We get to build a race car, that is powered solely by the sun, with our own hands. And what's even cooler, is we get to then race our student built car against other teams from across America and Canada. And we manage to do both of these things quite well- I might add. By no means are we the most advanced, or highest funded team out there, but we hang in there with the big engineering schools across the nation and last year we even placed second. Oh I can still taste first place, it was such a close race. 

This year we are building what is anticipated to be a better, more powerful, more efficient car than our last one (*knock on wood* *please don't jinx us now, we've worked so hard for this*) and we hope to do notably well(win) in this summer's two races which will have  more and tougher competitors than our previous race. This summer we will be racing on a Formula One Track in Austin Tx, for a three day race where we race for 8 hours straight each day for a total of 24 hours. We will get a day off to travel and then begin our next race which is a cross country race that will span 7 states in 8 days, once again racing for about 8 hours a day. This race is exhausting but exciting.

I am so grateful to be able to have such an awesome opportunity while in college (it's making grad school a bit more bearable), and I'm even more grateful to be leading a team that has already accomplished so much. To be "part of the team" and support our efforts click here, and you can follow us on Face Book

You Go Rocket Girl - Love Sam -aka Kate, Jan or Ginger (shown here with the Red Bird at the Bloomington, IL leg of the race two years ago)

Tuesday, April 1, 2014

The Name Game

Kate has always loved TV.  When she was very little she  would cruise the house in the walker.  Remember those things that little ones would sit in that had wheels and they could Fred Flintstone themselves around?  I’m not sure you can buy them, I guess now days that is considered dangerous and they are on stationary disks.

Anyway, Kate would fly through our house in that thing, bouncing off the walls and nicking the wood work.  Her favorite show when she was almost two was Wheel of Fortune.  I remember her age because if Sarah (17 months younger) was on the floor near the TV, Kate would stand on her to get closer to the screen.  We actually took pictures – there is no way I would specifically remember the incident.  Sarah says she does ... right.  But if Kate was in the walker and the music for Wheel started, she would fly through the house to get to the TV to watch Wheel of Fortune.  Some things never change.  To this day, we have to choose our colors before the show start and then we play all the way through the final round.  It doesn’t matter if I call out the answer before Art does... if his color wins – so does he.

She also took to calling us by names of characters in the shows.  All of the sudden she stopped answering me when I would call her Kate.  She would only answer to Jan. She started calling me Carol, Art was Mike or Michael and I had to call her Jan.  Of course Sarah was Marcia and Patty was Cindy.  Brother was Greg if I remember right.  When she called Grandma Alice, she got that cute smile on her face and twinkle in her eye.  But to make matters worse, she would change channels on us.  She would be calling Sarah/Dodie,  Patty/Macie and she was Ginger, characters from the As Told By Ginger show.  Or, Donnie (our dogs new name) Kate/Eliza, Patty/Darwin, Sarah/Debbie , me/Marianne and Art was Nigel from Wild Thornberrys. Some days I had to wait for her to call me by the shows character name so I would know who she was that day just to have a conversation with her!

I think our favorites were from a show called Rocket Power.  She was Sam, Patty was Twister, Brother was Otto, I was Violet and Art was Mundo.  Sarah was Reggie, the Rocket Girl and it sticks to this day.  Two years ago Sarah helped build a solar car and competed in a race that went through 8 states in 8 days.  When we caught up to the leg of the race in Bloomington, IL, we had a banner made that read Go Rocket Girl Go!  (I will fill you in on the solar car in my next blog).

To this day she often calls us by our character names.  She rides a public transportation bus that provides  her door to door service.  Art went out to get her off the bus and a couple of the other riders yell out, Hi Michael!

Friday, March 28, 2014

It Is Never Wrong To Do The Right Thing

My husband had a birthday and needed to renew his driver’s licenses. I realized that I needed a vehicle sticker and Kate’s state ID was expired. So we decided to ALL go to the DMV to handle all these issues. If you have been following the blog, you know that quite is not a word used to describe Kate...ever! She is a gregarious, friendly to a fault young lady, who doesn’t always know socially acceptable behavior.
So we get to the DMV around 3 pm on a weekday. We got into the zigzagging line of about 30 people. The people who give you the numbers sit up higher than the people standing in line, they kind of tower over us. Mind you, it is in the later afternoon and I don't see a single person smiling in the entire building. Dealing with the public is one hard job, obviously. One of the ladies at the desk who gave out the numbers was being exceptionally rude to a customer who didn’t understand her directions. Listening to this, Kate blurted out, “Hey, be nice!” I instantly tried to cover her mouth and not let a laugh out of mine. The lady looked at us and yelled, “You! Come here.” I swear the entire place got dead quiet and I just knew the Policeman in the corner put his hand on his gun. I also knew better than not do what she said so I began unhooking the velvet rope from the stanchions and I had to practically drag my husband to the front of the line with Kate in tow. He looked at me and said, "she's mean!- I don't want to go up there."
She looked at Kate and said with a smile, “Your right honey. I was wrong to yell at that man and I should be nicer. What are you folks here for?” We told her and she gave us our numbers. Much to the chagrin of the people in line, we went and sat and waited for our numbers to be called. We were in out of the DMV in less than a half hour. Everyone needs a Kate.

Tuesday, March 18, 2014

Oh Oh - I Hear That!

For a kid who had a cholesteatoma removed from her right ear when she was 5 years old that made her pretty much deaf in that ear, she has amazing hearing. If she is in her room and you open the Moose Tracks down in the kitchen, for sure she will be down for hers.
There are certain words we don’t use in our house. Words like shut up, stupid, hate, the R word for sure. I just think there are better words in the English language to express our feelings. So, if you are in the company of Kate and you say one of those words, you will hear Oh oh, I hear that. It is her reminder to us to be kinder and smarter.
She also can sit in church at Cornerstone and answer Pastor Manny’s rhetorical questions. Although we prompt her not to before we go in and sit, invariably she can’t help herself. He is a good sport about it and will say something like, "Thank you Kate" and you can hear the muffled laughter. My friend Barb Blasco wrote about Kate doing this in her book, "It’s A Girl But Will She Live. " This is what she said: " Another young disabled girl in our church, Katie, responds out loud to the rhetorical questions sometimes asked by Pastor Manny in his sermons. This could be an annoyance, but it has been turned unto a positive situation. Katie's mom, Cheryl, told us several people have come up to her after service and said, "Katie is a real example to me. She puts me to shame. She really listens to the sermon and doesn't get distracted as I sometimes do. I have to learn to listen better the way she does."
It seems we are still learning from Kate: patience, acceptance, how to see the good in the bad, how to laugh at ourselves, what is actually important and what we can let go... and others are to. Another blessing from Kate.

Tuesday, March 11, 2014

Happy Birthday To Me - All Month Long

January - that’s my Birthday is the month Kate was born in. We have noticed that anytime the word January - that’s my Birthday is spoken, the words following it – that’s my birthday – can be heard coming from Kate if she is within earshot. So we just automatically say it now. For Example: Did you know that in January - that’s my Birthday they are expecting the coldest day of the year? Next time you see Kate, be sure get the word “January” into the conversation. Even if you are just talking to someone near her and she hears the word – automatic response guaranteed.
Kate truly enjoys her birthday month. Here are a couple of examples:
She attends a program called Natural Ties at the campus of Northwestern University in Evanston. They meet there to play games with some of the college students every other Tuesday evening during the school year. I would usually take her to the room off the cafĂ© where they play the games then go sit in the eating area and read a book or crochet for an hour while I wait for her. Several times I have heard them singing Happy Birthday so I assume they ask who has one coming up. Since January - that’s my Birthday has four weeks, two of those we are at Ties and you can be sure both times they are singing to Kate!
Our Place is a program she attends during the week day and one of the days she is there they bowl. Last year that day was on January – that’s my birthday 28th. So I sent a sheet cake in for her to celebrate with her bowling friends. Decorated in purple (her most favorite color) piping I later found out I couldn’t even have planned this better. When she got home that day she told me she bowled with Coach. I had no idea who she was talking about until Our Place posted pictures on Face Book. Sure enough, there they were, bowling with the Northwestern Football team!
In our family when it is your birthday, we have a celebratory meal of your choice. Grandma comes since she is living with us and the two sisters and brother if they are in town. This last birthday was celebrated as a lunch at her choice of restaurants, California Pizza Kitchen. Her birthdays are always special and this was no exception.  
Who should come in the revolving doors behind me? The head coach of the Chicago Bears-Marc Trestman! In case you didn’t know we are H-U-G-E Bears fans – let me review the names of the dogs in the family including the fosters: Bear-Payton-Peanut-Major-Duncan. We didn’t ask for his picture (smart phones take pictures both directions so it is easy to hold it over your shoulder) or interrupt his meal with his family. Just being able to look at his back for a whole hour was enough excitement for us! How do we top that next year? Superbowl lunch maybe in AZ with the Bears?? Just saying...

Tuesday, March 4, 2014

Hello. Is It Me You Are Looking For?

It is hard to have a reward/discipline system for someone who is 26 but has the mental age of about 8. One reward we have found that works great for her is the ability to make a phone call if she has a good day. We can also threaten to take the phone call away from her if she is misbehaving.
When Kate was in the youth group at our church, Cornerstone, I solicited the group and asked if she could call any of them as a reward. They were very eager to help me and we had five to six give me their numbers. Now that the youth group members are adults, some have married and the spouses will take Kate’s call – Love is so good! So she has someone to call every weekday still!
My sister was in town visiting and we were all sitting in the living room having a nice conversation. Kate was in the kitchen and asked to make her phone call to Tony. I dialed the number and went back to living room. We could hear her talking and the conversation was very entertaining due to the different inflections and animations we could hear in her conversation. This went over for about three minutes then we heard her say good-bye and hang up the phone. My sister asked her what Tony said. Her response? He’ll call back. That was when we realized no one was home and she was just talking into the phone this entire time! We just roared!! So she was having her own conversation and really enjoying the company!

Friday, February 28, 2014

That Went Well

That Went Well is the title of a book I read years ago that had some wonderful insights into the life of a sister being the caregiver of her disabled sister. Anyone in that position, or the parent of a disabled adult will get a kick out the book I’m sure.
One thing I took from the wisdom and experience of the author was the ability to limit the people Kate can call on her cell phone. Who knew you could limit that –not me. She is only allowed to call the immediate family and her day program. If we allowed her to call everyone she knows (by the way – that numbers in the hundreds!) the phone would be ringing day and night.
If I remember the story correctly in the book, it went something like this. The authors sister got off the bus and saw a lost dog poster. It said if you see this dog (picture), call this number. Well, the sister was standing there looking at the picture of the dog, so she called the number. Can you imagine that conversation? It was a lot like the ones we have with Kate on the phone. She will call and say something like, “You got mail!” and you can ask what did I get? She will say, “This mail right here”. Or Hey Kate, what's going on? "I got a new jacket" Oh cool! What does it look like? "This one right here!" Some days it is like an Abbot and Costello conversation.

Thursday, February 27, 2014

Is It Spring Yet?

That is a question I am hearing often from Kate.  She is ready for this lousy winter to be
over and spring to arrive because then comes summer and Camp Hope!  We have already gotten the application in the mail for her sleepover summer camp. 

I did try to hide it from her on my desk.  It was under papers there waiting (and waiting) for me to file.  The only thing I can figure is that during the night, while we were sleeping and she was obviously doing her mailing, she found it.  How do I know she was doing her mailing?  Because in the morning on the island were a bunch of envelopes with my postage stamps – from the desk – on them.  Mind you Kate can’t really write, so there were a bunch of envelopes with some paper crinkled and forced into them with marker marks on the outside, sealed of course and stamped.  I convinced her to let me take them to work to have Big Mike mail them for her (our courier).   I hope the post office will accept the stamps I am scotch taping onto my envelopes.

The real reason she wants spring to come is so she can change out her closet.  With the “changing of the closet” comes the summer clothes and the winter ones go in the boxes on the shelf.  And if the summer clothes are in the drawer, she can pack for Camp Hope – her objective all along.  Last year she was packed and ready to go by early March if I remember correctly.  Camp Hope is at the end of July. 

I truly think she plans for her summer camp all year long as she was asking for bug spray for Christmas this year.   And sun screen.