Thursday, December 11, 2014

4 Floors Apart

Although Matthew has gotten to the point where he likes going to the doctor (huge progress from the screaming days of just a few years past), the dentist is another story. A story that I had never experienced, because Rob always took him to the dentist. It required manpower, which Rob had a little bit more of than me.  Even with Rob's manpower they were only able to do a very cursory dental exam and they had not been successful at taking dental x-rays.  They suspected he might need some cavities filled as well.

Tuesday, November 11th...It had been planned for months that I would take him that morning to Elmbrook Hospital.  He would get sedated so that they could do a thorough cleaning, get x-rays and do any dental work that was needed.  The sedation required that he wouldn't be able to eat or drink after midnight the night before.  I started mentally preparing myself that weekend...there was no way to make this a fun outing, but sometimes you just have to bite the bullet.  Lord help us if he needs braces!

What I hadn't prepared myself for was the fact that come Tuesday I wouldn't be able to take him to the hospital.  For, in fact on Sunday night I would be admitted to that same hospital myself and be there until Wednesday afternoon.  It started Sunday morning, with a pain that ran from my armpit down to my elbow when I opened the car door. If I kept my arm still it wasn't so bad, but as soon as I moved it, the pain was pretty intense.  I wracked my brain to think of what I had done recently...had I pulled a muscle in my arm? We got into church and I was so cold I couldn't talk my coat off.  I was shaking and couldn't get warm. After church I skipped lunch and went straight to lay down.  At this point I was thinking I must have the flu and this pain in my arm must be what they describe as body aches.  Later that night, my symptoms increased to include my left hand turning red and starting to swell.  A call to the nurse line, a visit to Urgent Care and a phone call to my in-laws to see if they could take me to the hospital and I was admitted finally close to midnight on Sunday night.  It turned out that I had a skin infection...most likely strep that had gotten under the skin.  I ended up needing to stay several days to receive fluids and antibiotics by IV and to allow time for the swelling and pain to go down.

Matthew's appointment was scheduled to be at 10:30 on Tuesday morning.  Seeing as they needed to kill some time since he couldn't eat or drink and because I hadn't seen him since Sunday night Rob brought Matthew to the hospital early to see me.  He was such a sight for sore eyes.  You can't go days without seeing that boy and not miss's humanly impossible.  The way he came bouncing into my hospital room makes me believe he was equally happy to see me too.  And of course he had fun exploring my hospital room.  I felt better getting to see him and having him crawl in my bed and snuggle me before he went down for his procedure.  It comforted me to know that even though I couldn't be with him, I would only be four floors above him.  You know darn well if anything went wrong or if he needed me, I'd hop in the elevator in my hospital gown (dragging my IV's along)!

In Did You Know? I told a little of Matthew's adoption story.  Something that I didn't tell about in that story was that after we were matched with Matthew, but before we were scheduled to travel we got news from China that Matthew was in the hospital.  He had been fed contaminated formula and had developed kidney stones.  It was hard to be so far away from him...such a helpless feeling!  At the time I would have done anything to have been just four floors apart!


Saturday, November 15, 2014

Spicy Hunan Girl

I can’t say that she didn’t warn me.  Her words were something to the effect of, “Don’t give them a name that can be shortened.  Oh… and don’t give them a nickname unless you want them to be stuck with it forever.”  My mom was speaking from experience, of course.  Her given name was Gloria Jean Walker.  But thanks partly to a song that her dad used to sing to her,  (Jeanie with the Light Brown Hair) she is still known as Jeanie to this day.

So, in 2003 when we adopted our daughter, I thought we had done pretty well with the name Abby.  I mean you can’t shorten Abby too easily (although once in awhile she gets called Abs or Abster- which isn’t really shorter…) Abby’s Chinese name is Chang Ming Qing.  When we were in China they doubled the Qing part – Qing Qing, which we thought was pretty cute and used when she was really little, but I doubt at her current age of 12 she would let us call her QingQing! 

Abby was born in the province of Hunan, which is known for many things, but especially it’s spicy Hunan food.  Before you knew it we had a “Spicy Hunan Girl”.  We liked how this nickname incorporated a little bit of her culture, but neither of us had any idea just how much the name would capture her personality!

Here’s a little glimpse into life with our “Spicy Hunan Girl”… 

At age 2 ½ she was having quite the meltdown and Rob finally said to her, “That’s enough!  You have two choices.  You can walk or I can carry you to the car.”  The whole time he carried her to the car (Did you really think she was going to choose walking?)  she was yelling at the top of her lungs, “That is NOT enough!  There are NOT two choices!”

Now spicy doesn’t just mean she has a hot temper (although there’s plenty of that to go around), but rather it refers to the funny things that she says and does that keep us on our toes.  

Our Spicy Hunan Girl finds creative ways to use things around the house, such as shaving cream to feed marshmallow treats to her bath animals, Kleenex for clothes for her Barbies, and napkins to create “napkin art”.

She is also full of parenting advice for how to parent Matthew.  “Now, mom…if you tickle Matthew’s feet when he takes his shoes off, he will never learn not to take his shoes off!” She can get after him for being in her room, but she can be so sweet and caring too.  We just celebrated her birthday and she didn’t yell at him when he blew out half her candles.  She knew he had been looking forward to the birthday candle part all day.  She also let him open some of her presents.
She even gave me advice for a writing class I was taking.  When I told her what I was going to write about for the topic of “a scar” she said to me, “Oh… I would have written about something more poetic…like something that had scarred me for life."
Our Spicy Hunan Girl asks interesting questions and says funny things.  “I wonder if Uncle Ben is married to Aunt Jemima?” While watching a Christmas movie, she leaned over and said, “I still believe in Santa, even if she has curly hair, a pointy nose, and glasses."         

And it’s probably best not to try and reason with her because you might end up with a conversation like this:  “Mom, I’m hungry.”  “Okay, grab a handful of something.”  After hearing noises coming from the kitchen, I said, “Abby, what are you doing?”  “Making a shake.”  “Abby!” “You said to grab a handful of something.”
But the best thing about our Spicy Hunan Girl is that she is spicy with her showing of affection! One time we were playing Tic Tac Toe and she gave me a kiss on the cheek after every turn.  Her explanation…”I’m X’s!”

So, as my mom warned us, Abby might be stuck with the nickname Spicy Hunan Girl forever, but if it means she still has her spicy personality, then I wouldn’t have it any other way! 


Friday, October 31, 2014

He Gets It!!!

Often people will ask me questions like, "Is Matthew excited about _________"?  Fill in the blank with anything such as Halloween, Christmas, his birthday, etc.  And I'm never really sure how to answer, because it's hard to know how much he understands about abstract concepts like that.  If I were to ask him, he might nod "yes", but a "yes" answer is not always reliable.  When he shakes his head "no", he usually really does mean "no", but I think sometimes he nods "yes" because he knows you are asking a question and therefore should reply, but doesn't really understand the question.  (Abby and I have done a few experiments, where we ask him goofy questions where the answer would most likely be "no".  For example, "Do you like to eat bugs?" and he nods, "yes".

This year though, something exciting happened!  The pumpkin basket that he uses to collect his trick or treat load has been floating around our house since last Halloween. Honestly, I'm pretty sure I put it in the basement, but things in the basement tend to find their way back upstairs.  Singing Easter bunnies sometimes make appearances in the summer.  The snowman pillow finally had to be hidden. I think you get the idea. The week leading up to trick or treating, he pointed to the pumpkin basket and then signed "walk".  I think between trying on pieces of his Halloween costume, Abby practicing putting a pirate beard on him and working on signing Trick or Treat during therapy he was really starting to understand about Halloween.

Fast forward to Saturday (Trick or Treat night in our neighborhood) and the boy could barely eat dinner because he was so excited.  Abby left a little early to go to a friend's house because the "big" kids were trick or treating together this year.  All his actions were saying, "Come on...let's go!"  We drove down to the blocks where all the action was happening.  With prompting, every house that we went to he signed, "Trick or Treat" and "Thank you".  It was fun to see that several people asked how to sign "you're welcome".

I'm proud to say that we didn't have any running incidents.   He did a little pulling when he saw our neighbor's van (it is an obsession of his), but he was able to be re-directed.  Last year, I remember we would sometimes get stuck at a house because he had to tap/pound on each pumpkin.  It got a little dicey when he tried to take the top off a lighted Jack o' Lantern.  He didn't do that this year.  The only thing that held us up was that he would hold out his hand to take the candy because he wanted to put it in the basket himself. Then he would just hold the candy for what seemed like forever and I would have to prompt..."Put it in your basket".  I was surprised that at one house, when he could choose between candy and a mini container of Playdoh, that he chose the candy, because he loves Playdoh.  Considering what a sensory seeker he is, I was also surprised that the only sensory seeking that he did was to tap the bowls that people were using to hand out the treats.  His favorite was the house that was using a big aluminum pan.  He had to spend a little while scratching the ridges on the side.  I was worried we might overstay our welcome at that house.

Matthew lasted 1 hour and 20 minutes.  Actually, he would have kept going, but WE were done!  I thought he might have fun helping hand out candy the next day during city-wide trick or treating, but he just kept signing "walk".  He totally would have gone Trick or Treating again!

I can't wait for Christmas - it'll be fun to see what ways he shows us that he "gets it" this year!


Friday, October 17, 2014

Just the Right Place

Last year (pre-blog stage) I wrote on my personal Facebook page about how I was a little worried about Abby going onto the middle school, because then they wouldn't be at the same school. Matthew would sometimes visit Abby if he needed a little calming down.  I shared how we were at Abby's orchestra concert and Matthew was enjoying the music, but starting to make a lot of noises.  Rob took him out into the hallway and a few minutes later came back into the concert without Matthew.  I looked at him in surprise and he said that Mr. Supa (the principal) was taking him for a walk.  At that time I commented that I was reassured that everything would be okay...Abby could move on and Matthew would be fine, because he was in the right place.  

Now that we are in the second month of the school year and have had his first parent-teacher conference, I thought I would share with you some of my current reasons for knowing that he is in "just the right place."   

1.  His classroom teacher said that sometimes she tells the rest of the class,  "Look at Matthew.  If you don't know what you are supposed to be doing, look at Matthew."  I have to admit my chin almost hit the floor on that one.  We have heard positive things about Matthew before, but I don't know that he's ever been referred to as a role model!  

2.  The school asked me to write a little about his weekends in his communication notebook.  On Mondays they use that information to help him write a journal entry.  They write it in his journal and then he traces over the letters.  His aide will then type that sentence into his ipad. When it is journal sharing time, Matthew's journal is put under a projection device so the class can see his words/picture and hear his ipad saying the words.  They understand the importance of his ideas being heard.  

3.  Almost every week he gets to have cooking class.  Not only does he love to cook, but his speech and language teacher is in the room at the time.  She is able to facilitate communication in a real life situation.  He won't always eat what they make, but he has fun nonetheless.  

4.  If he requests a rest time or they feel that he is exhibiting behaviors that indicate that he is tired they offer quiet time in the special education room.  They understand that if he is too tired, it's counterproductive to force him to work through that.  Someone as active as Matthew needs to recharge every so often!  He goes through goofy sleeping phases at home too that can affect his energy level.  Sometimes he will go weeks and sleep through the night and sometimes (like this week) he is up at least once every night.  Sometimes he goes right back to sleep and sometimes it is a process...a process that involves one of us being awake too.  

5.  Thanks to both school and home therapy (and a program called Handwriting Without Tears) his handwriting is really taking off.  I can't tell you how delighted we were when he brought home a paper and he had written Matt independently from a model.  He now writes Matt on his papers.  He had another paper where he did such a good job on writing the words Mom and Dad.   

6.  He has a daily communication notebook.  This notebook is so important to a parent of a child who is nonverbal.  I can ask him if he had a good day at school and he will nod "yes", but that doesn't really tell me what was good about his day and it doesn't tell me if there were some not so good parts.  I confess when I pick him up from school, I read it in the car while he is getting buckled.  Sometimes at home, I will read parts of it to him or ask him a question about something that was written in there (i.e.  It says you had library today.  Did you get new books?")  We also try to talk about if there were bad choices made that day.  

7.  If you read Whatever It Takes you will know that Matthew has some interesting things that motivate him. The school utilizes some of these motivators to help him be productive.  One of his favorite things to work for is to spend time with the school custodian.  He likes to watch him vacuum of course, but also other cleaning and building projects are pretty exciting too.  

8.  They will sometimes take pictures on his ipad of things happening at school.  He was scribbling on his dry erase board and his teacher said, "Write your words."  They took a picture of the word Matt on his dry erase board.  In the past they have also taken pictures of him on field trips or special events at school.  

9.  When I drop him off at school, there is a girl who was in his class last year who likes to give him a big hug and hold his hand.  Another one of his friends will always say "Hi!" to him and one day announced, "I love Matthew."  The rest of his classmates love it when he talks with his ipad.  

10.  And this just might be my favorite...they are attempting to help us cut his pinky nails! He will not let us cut his pinky nails or his toenails.  I will not describe for you what kind of torture this is to even try.  Every night I try to sneak into his room when he is sleeping to cut them, but he always wakes up.  Today they made some progress as he let them file his right pinky nail.  

As some of you know, after teaching full time for 22 years, I am teaching part time in Special Education. Since I have been in a different teaching role for the last 14 years, I am taking note of all the positive things happening for Matthew at his school.  My goal is to have my students' and their parents feel that same way...that their kid is in "just the right place."  


Friday, October 3, 2014

The Dreaded Block Party

Our block LOVES block parties.  So much so, that we have one in June and one in September.  What's not to love about them?  The kids ride their bikes, skateboards, and scooters.  We eat yummy food and drink yummy drinks.  We shoot the breeze while our kids run and laugh and play.  We end the night with a bonfire. And it all happens IN THE STREET.  Which let's face it, makes it all the more fun because you're doing something that is normally off limits.

But I have to be honest.  Ever since Matthew could walk/run, block parties have become a lot more complicated and while I still look forward to them, I also feel a sense of dread. First of all, anytime we are even remotely near a street or parking lot we hold Matthew's hand.  He doesn't have an instinct for danger. But you can't really hold hands during the whole block party.  Granted, there are no cars in the street because it's blocked off, but our experience from previous block parties is that he will run down driveways to get to neighbors' cars or garages. A year ago, I remember thinking, "Gee...this is fun" as Matthew and I went in the house for the first time-out of the evening and the block party had only started five minutes prior. He has to take automatic timeouts if he runs and doesn't stop when we yell, "Stop!"  In June, I realized it was progress that we made it half an hour before we needed to take a time-out.   Secondly, when you have a "runner" you work so hard to teach them about safety and not going in the street.  And lots of kids will understand that this is a special party and that we can only do it on this special day.  I don't believe that Matthew understands that distinction.  Will I have undone what I have been trying to teach him? Thirdly (and maybe selfishly), it is exhausting and not relaxing to watch someone that closely for hours. I won't be shooting the breeze while my kid runs back and forth between someone's backyard and the street.  (Parents of toddlers can relate, I'm sure!)  You really can't hold a decent conversation with someone when you know at any moment you are going to have to abruptly leave. And there's always that bonus danger factor of having a bunch of hot grills around.

Last Friday was our fall block party.  It started around 4:00 pm and I felt a little bad that he had therapy until 5:45 pm, but a part of me thought, "Well, that's a little less time that we will have to be outside."  His therapist should have been paid double that night because she had to convince him that he still wanted to do therapy even though it was becoming more and more evident that he wanted to be outside.  That's where all the action was.  At the beginning of the block party Matthew and I did spend some time in a neighbor boy's backyard...just the two of us.  We spent some time visiting the garbage cans that were being used to hold the block party sign to block off the street.  And we did make a few attempts to lead adults by the hand to their garages.  BUT...besides that we rode our scooter in the street (okay...we were attempting to ride it on the curb, but go with me here.), went up to the table and ate taco dip (with some prompts not to double dip), and rode a neighbor girl's tricycle up and down the street.  We didn't run down driveways. We didn't get in cars.  We didn't go in garages.  We were staying at the block party! After dinner, when the sun started going down, he was content to do what he often does in our house...he walked around in big circles on his tiptoes, verbally stimming (repeated vocalizations) and flapping his face with the end of his toy microphone. And you might not believe this part, but I actually sat down!  (Now you need to know that Matthew signed for me to sit down and you might know from Mr. Bossypants that he likes to tell people what to do.)  I can't explain how I know this (mother's intuition?) but I believe that he wasn't just being bossy this time.  I think he was telling me two things:  1.  He was asserting his independence  2.  He was reassuring me that he wasn't going to run.

Another confession...usually on block party nights we take him in right at his bedtime or even before (even though most kids are staying up way past their bedtime), because as I mentioned it's exhausting.  But at this block party we let him stay up past his bedtime, because he was doing such a good job.  One of the funniest parts of the night came after Rob took him inside to put him to bed.  Someone points to one of our upper level windows.  "Hey, look it's Matthew."  The thing is if we can see him in the window, that means he is kneeling on his dresser.  Before we knew it, he had gotten up off his knees and was standing on his dresser. All you could see was a black silhouette perfectly framed in the window...a boy, wishing he was still at the block party.  I called Rob on his cellphone and said, "Did you know your son is on top of his dresser."  The whole block erupted in laughter as we could tell the moment that Rob opened Matthew's bedroom door...the silhouette jumped hastily and guiltily.

Now that you have read this I think you'll understand and hopefully not think I'm too crazy if I decide to suggest to our neighbors that we try something new... a winter block party! Just think, there could be snow forts, snowmen, snowball fights, a fire pit and hot chocolate.

Note:  Prior to this block party, we did build into his therapy sessions a social story about block parties.  A social story is a way to teach him about a social situation and expected behavior.  His therapists read it to him every session for about three weeks leading up to the party.  I don't know if that was what helped this block party be a success, but I have to believe that it definitely didn't hurt.


Sunday, September 21, 2014

True Colors

But I see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show 
Your true colors
True colors are beautiful 
Like a rainbow

I smiled as I heard the familiar 80's tune playing from my phone.  Matthew had signed and asked to use my phone.  This was progress since he used to just take my phone. Progress that was helped by a locked screen, mind you.  The phone is not as much fun when you can't get into it!  One of his favorite things to do is to play music from my iTunes.  True Colors is one of his latest favorite songs to play.

While the rest of the song doesn't necessarily fit, I feel like the chorus could be Matthew's theme song.  The songwriters, Billy Steinberg and Tom Kelly didn't know Matthew when they wrote it. He wasn't even born yet! But when I hear that part of the song I feel like it was written just for him.

Matthew's True Colors:


Red is for his charismatic personality.  He has a way of winning people over.  There's something endearing about the way he can get people to do just what he wants without speaking a word.  He takes a person's hand in his and somehow has a way of making that person feel special...that he chose them to hold his hand. Once that person feels special, they are like putty in his hand.  A friend of ours was watching him for us one day after school last year.  She sent me a picture of him in the baby swing at the park. I laughed and asked her, "How did you get him in there?  He's too big!"  She said, "Well, he really wanted to go in that swing." He can get the grandmas and grandpas to do all kinds of things from scratching his head and his back to swinging him from his ankles, just by being charming.


Orange is for his love of vacuums.  If you read, Whatever it Takes, you already know that he loves vacuums. I don't think he has met a vacuum that he didn't like.  There's a lot to love about vacuums; the rumbly sound, the slightly dusty smell, the feel of the air on your hands or face, the plastic to tap and the bumpy hoses to feel, etc.  At Meet Your Teacher night, his new second grade teacher showed Matthew the vacuum she had bought just for him.  The vacuum that he would be allowed to use on the classroom rug at the end of the day. (I would say his teacher knows something about winning people over too.) At school, he works to be able to watch the custodian use the vacuum or the floor cleaner (that's an extra special treat).  There's a neighborhood Chinese restaurant that we used to go to and we would have to hold his hand extra tight when coming and going because he knew right where they kept their vacuum cleaner.  One day, we were at a local department store and there was a worker vacuuming.  Matthew had to sit down (criss cross applesauce) right there and watch him.  This month we bought a new vacuum cleaner and almost every day he asks me to vacuum when we get home from school. My floors have never been so clean!


Yellow is for his love of music.  Both on his ipad and my phone he will sit and pick music on my iTunes.  He creates his own slideshows by picking a song and then going into the photos and looking through them. That is one of the reasons why I have so many pictures on my phone!  Right now he is sitting next to me on the porch playing a video clip of Lady Antebellum in concert.  He is playing it over and over and I think he likes the extra hooting and hollering of the fans.  He will also select apps because he likes the music playing in the background.  He will hold my phone up to his ear and listen very intently.  He is obviously not too picky about his music though, because he will still ask me to sing to him.  Abby and Rob can vouch that I can't sing, but Matthew doesn't seem to care.


Green is for his love of jumping.  Ever since he could walk he has loved to jump!  He also jumps when he is super excited about something.  (After the store worker moved to another section of the store, but still within earshot, Matthew looked like a jumping bean. If jumping beans squealed and flapped, that is.) During therapy he is still able to get his therapists to "jump him".  He faces his back to them and they pick him up at the waist and jump him into the air.  It is definitely an upper body work-out for them, but there's going to come a day when they just can't physically lift him anymore.  The week before school started we tried out Helium, which is a trampoline park.  The place was something out of his dreams, I'm sure.  There's no doubt that we will have to go back.  A couple weeks ago we went on a bike ride, with me pedaling and Matthew in the ride along carrier.  I swear I didn't pick this route to torture him, but we went past a festival and they had about 3 different bouncy areas and then we passed four different block parties, and they all had bouncy houses.  I thought he was going to burst out of his skin!  He signed "jump" at me the rest of the day.


Blue is for his sensory seeking ways.  Touching:  tapping garbage cans, wastebaskets, walls, orange cones, the inside of the freezer, boxes, coffee cups, etc., scratching box lids, bottoms of slippers, lids to coffee cups, the sides of the car, etc., pounding walls, doors, wastebaskets, garbage cans, etc., stimming by flapping his face with a kleenex, paper towel, receipts, his microphone with a plastic piece that hangs down, etc., Hearing: most of the touching from above creates sounds, music, the vibration of the car when the window is rolled down, shaking things to make noise, etc.  Smelling:  things before he eats them, Daddy's coffee, Mama's tea, bottoms of shoes and slippers, flowers, things made of plastic, rubber, wood, cardboard, etc.


Purple is for his ability to problem solve.  An overturned wastebasket makes a tall stool. We find these right under closet doors with latches.  Luckily for us, he has not figured out how to undue that particular latch...yet. In the laundry room he will overturn laundry baskets to get cleaning wipes on the shelves above the sink.  Just today he wanted to get into the basement (which was latched).  He stood on a giant package of toilet paper and this was the kind of latch he can undue.  Fortunately, he was caught red-handed by Daddy.  One night at dinner, Abby went into the kitchen to get something and when she returned she exclaimed, "Why do I have more green beans now?"  We looked at Matthew's plate and he didn't have ANY on his plate.  Pretty clever.  If she would have been a green bean lover, she probably wouldn't have even noticed.  As I mentioned in another post, he will make up signs for words if he doesn't know the sign. Then he consistently uses that sign to stand for that word.  That takes some huge problem solving skills.

I know that he is at an age where his classmates and peers still accept him, because that's how they have always known him.  As Abby often says, "That's just Matthew."  But I'm sure there will come a time when someone will say something to him or make fun of him for the behaviors and loves mentioned above.  I won't always be there to stop it or defend him, but maybe if I can keep reminding him of these words...

But I see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show 
Your true colors
True colors are beautiful 
Like a rainbow

Friday, September 12, 2014

Knock on Wood

As a kid I think my beliefs in superstitions were pretty typical.  My friends and I would be huffing and puffing by the time the car passed the end of the cemetery and we could finally let out our breath.  It makes me laugh to see Abby and her friends do the same thing now.  I remember sitting in our backyard searching and searching for that one magical four leaf clover.  And of course I jumped from sidewalk square to sidewalk square...wouldn't want to break my mother's back!  It seems disgusting now, but I remember having a keychain with a green rabbit foot .  I'm sure I won it at a school fun night. 

With maturity and age my superstitious beliefs lessened as I became a teenager/young adult.  I would find that I still needed to throw a penny and make a wish in a "wishing well" (aka any pool of water where there was already coins).  Pennies found had to be picked up, because "Find a penny, pick it up, all day you'll have good luck."  At my wedding I made sure to include something old, something new, something borrowed, something blue.  Although I might have cheated a little on that one, because my mom's garter covered three of the categories.  

That brings us to today.  I might be caught using expressions like "knock on wood" or "I'll cross my fingers for you".  A few months ago, Abby and I did save a wishbone to see who would get the biggest piece.  But other than that I can't be considered too superstitious...I mean I have two black cats for goodness sake!

However, I realized I have created my own little superstitions when it comes to Matthew.
They don't last long, especially when the pattern gets broken.  Just this week a new superstition was formed.  Matthew has a communication notebook with a behavior scale (1= I can do better  2 = OK  3 = Great)  for the morning and the afternoon.  Daddy tells him in the morning, "I want 3's.  Give me 3's" and Matthew will hold up three fingers.  On Monday morning he had a big bowl of hot cereal.  It's super healthy except for maybe the spoonful of brown sugar.  I'm sure the reason he loves it is because of the brown sugar, but to his credit he eats the whole bowl.  That day when he got home from school he had a 3 for the morning and a 3 for the afternoon with an extra comment of Great Day!  

The next morning he requested the hot cereal.  Normally, I'm a little picky and won't let him have the same thing two mornings in a row, because I don't want him to get stuck on only eating certain foods.  But I thought about how he had such a great day and thought "why not?", maybe it's the big, nutritious breakfast he had.  Guess what?  3's on Tuesday.  Hot cereal on Wednesday morning.  3's on Wednesday.  Hot cereal on Thursday morning.  3's on Thursday.  Hot cereal this morning.  A 3 and a 2.  The pattern is broken...guess we'll be eating something else for breakfast tomorrow!

Probably the thing that causes my brain to want to make up superstitions is Matthew's erratic sleeping patterns.  Not sleeping through the night is a fairly common problem in the autism world.  When he sleeps through the night, I think to myself, "What did we do right before bed?  What was different about this night then say the night he wanted to party at 3 am?"  For awhile I was convinced that it had to do with who put him to bed.  I thought that if Rob put him to bed, the reason he would wake up was because I hadn't sang to him or played music for him, etc.  But then Rob had a couple of successful nights in a row and that threw my theory out the window.  Matthew likes to go to sleep with the overhead light on.  I started to think that maybe leaving it on all night versus turning it off when we went to bed was the ticket. But truly there doesn't seem to be rhyme or reason to his sleepless nights.  One of these days I will probably learn to live with the fact that some things just don't have an answer.

I will tell you this though; if there was something I could do that would guarantee to stop him from being a runner,  I would do it in a heartbeat.  Matthew going missing or getting hit by a car are my biggest fears, ones I live with everyday. (Yes, this will be a blog post someday.)  I would wear my pajamas inside out, jump over holes, make sure all pennies were right side up, kiss an onion when I woke up, etc.  Anything. 

But until I figure out what that magic trick is I will just have to post this, because do you know what I realized?  Right now I have 13 blog posts and you know what they say about the number 13...


Friday, September 5, 2014

Did You Know?

From time to time I will get the question of whether we knew Matthew had autism when we adopted him.  In fact someone just asked me that this week.  If you read Mama Bear...GRRR...  or knew us at the time of his adoption, you might already know the answer, but I still think you will find his adoption story interesting.

After we had been back from China with Abby for about three years, we decided we wanted to go back to China to get her a sibling.  We assumed that it would be a girl because from our experience the majority of adoptees from China were girls. *  We started the process the same way we did with Abby, in what is called the standard process.  Every month our adoption agency would send an email that would have updates on wait times from when dossiers (crazy amount of paperwork) were sent to when matches were being made. When we were waiting for Abby those emails were so exciting to get, because each month we knew we were getting closer to receiving a match.  However, we had the opposite experience during our second adoption in that we began to dread those emails.  Every time we would read them, the wait time to match would increase.  At a certain point we realized that if the wait time kept increasing (and there was no indication that it was going to decrease) we were looking at a four year waiting period.  That was not our plan.  We didn't want our kids to be that far apart in age.

We got information on adopting children with special needs and decided to switch over to that process. (I made that decision sound easier than it was.)  You might wonder why we didn't just switch to adopting from a different country.  For one, it really wasn't that simple. Payments that we had already made were not necessarily refundable and every country has its own set of rules about what needs to be in their required dossier.   Therefore it felt like it would almost be like starting over. We had already invested too much time and money into the process.  Secondly, we really wanted our two children to be from the same country.  We had a great support system with a group called Milwaukee Area Families with Children From China and Cricket Academy (where Abby took Language and Culture classes). We wanted our children to have the same cultural background as each other. We thought they might be able to have that bond with each other as they got older and had questions about their cultural identity.

One of the things that we had to do when we switched over to the special needs process is fill out a checklist.  The checklist had a list of different types of special needs and you had to check Yes, No, or Maybe on whether you were able to handle that type of special need.  Believe me, this was not an easy process.  It was not lost on us that if were able to have children naturally, we wouldn't have a choice on what we could handle.  We would have to live with the cards we were dealt.  But this was the process that was set up.  A good example that I can think of is that some medical issues require a financial obligation such as surgeries that some families might not be able to afford.  Rob and I spent a lot of time filling out this checklist. We had to look up lots of different conditions because there were so many that we had never even heard of before.  As we all know, many conditions have a range from mild to severe, so even that could be a factor when choosing between a Yes and a No or a Maybe.  I want to repeat that this was not an easy process.

After completing the checklist and other forms that we needed for the specials needs program we were surprised at how fast we got a referral.  With both the standard program and special needs program you have the opportunity to accept or reject the referral.  I have never heard of anyone rejecting a standard referral, but it is more common in the special needs process for some of the reasons I mentioned above.  We had one referral that we were considering that somehow by mistake had been referred to another family at the same time.  That was difficult because we had decided to accept the referral and then found out the other family had already accepted it.  I know it might be hard to understand, but as soon as you think that child is going to be yours, you already have a connection to him/her.  But then we got a referral for a little boy named Zhang Li (approximately 18 months old).  So, did his paperwork have the label of autism?  Did we know when we got his referral that he had autism? His paperwork had a label of growth delay.  He was extremely small in both height and weight...under the 3rd percentile for both.  His paperwork also indicated some developmental delays (not walking or even crawling and not talking) without a specific cause.  There was no mention of autism and I suspect that the orphanage and others involved in his care did not know that he had autism at that time.

No one has ever been brave enough to ask the follow-up question:  If you did know that he had autism would you have accepted the referral?  (Admit it, you were wondering it...) I am not trying to cop out with this answer, but I don't know.  I don't know if we marked Yes or Maybe for that condition on the checklist. I don't know if we would have let stereotypes, perceptions, and even my personal experiences as a special education teacher affect our decision.  Very possibly.   But I will tell you this:  I am glad that we didn't know. What if knowing would have caused us to say "No"?  We would have missed out on having this amazing, funny, happy kid in our lives.   That is something I can't imagine.

* Without going in depth into the politics involved surrounding the One Child Policy, I do want to say that we did extensive reading  before we adopted Abby.  The book Wanting a Daughter, Needing a Son: Abandonment, Adoption and Orphanage Care in China by Kay Ann Johnson helped us to understand why there are more girls put up for adoption and clear up some of our misunderstandings of the situation.   The Book Summary (click here if interested) on Amazon gives a good description of the book.

Wednesday, August 27, 2014

Good Kind of Heat

You sometimes hear people talk about the “good kind of heat” versus the “bad kind of heat”.  The “good kind of heat” is a dry feels good on your skin. It’s the kind of heat that makes you want to lay on the beach.  The “bad kind of heat” is high humidity and makes you sweat buckets when you set foot in it.  

Eleven years ago we landed in Guangzhou, China.  We were there to adopt our first child, Abby.  The particular flight that we were able to get had us land in Guangzhou and then take a connecting flight to Beijing.  We got off the plane and found out that we would need to take a shuttle over to the terminal where we would be catching our second flight.  About fourteen hours earlier we had left O’Hare airport in Chicago and the weather was typical early fall weather with mild temperatures. So when we exited the airport to take the shuttle we were unprepared for the air that hit us. It was only 5 in the morning and it was still dark out, but the air was so humid.  Immediately we started to drip and we couldn’t move without feeling like hot, wet towels were being wrapped around us.  It was even hard to breath.  If you were thinking the shuttle would be air-conditioned, think again.  For all intensive purposes it would be put in the “bad kind of heat” category.  

But...whenever I feel that icky, muggy type of weather, which most summers we have many days of (this summer is abnormal)...I am taken back to that day.  That day when we first landed in China and were just days away from being parents!  A dream that we had had for several years by that point. We had made it through our home study, getting fingerprinted (more than once), getting our passports, answering completely hard questions for non- parents to answer on the Parenting Questionnaire (i.e. What will you do if your teenage daughter tells you she is pregnant?), answering embarrassing questions on the Marriage Questionnaire (i.e. What do you fight about?), writing about our growing up years, etc. We had put together our whole dossier (fancy word for a ton of paperwork) and gotten things notarized and then certified.  We also had survived the delay during the SARS outbreak in China that happened right about when we were expecting to get our match.  It turned out the delay was only about a month, but at the time we didn’t know how long the delay would be: days??? weeks??? months??? years???... it was the uncertainty that was so hard.  

We had survived all of that and we were HERE!  We made it to Beijing, where it was not as hot and humid as it had been in Guangzhou.  As part of the adoption process they had us spend several days in Beijing to learn more about the country and have an appreciation for the culture.  Finally on September 2nd we flew to Changsha.  We got to our hotel and were told that we would be meeting our child later that afternoon.  Our stomachs were tied in knots!  Several hours later they had us come to a meeting room in the hotel.  Due to the SARS delay, they were trying to catch up on adoption cases so our adoption group was HUGE...17 families! Representatives from our adoption agency were trying to have us fill out paperwork.  All of us were so distracted by the fact that the babies might be in the hotel that we were not very good listeners and had to have them repeat the directions a lot.   Imagine our surprise when our names were called first to get Abby.  I nervously went up to the orphanage workers and gave them a gift for caring for her these past 9 months.  The gift was really more of a token, because how do you truly thank someone for caring for your child during those critical first months?  I remember holding her and she was snuggled into me and it was the best feeling in the world.  And I will never forget (nor will Rob) when Abby put her hands out to him, asking for him to take her.  In that single moment, she had won him over!

So, I think you’ll understand now why even though the weather that day was brutal and sticky...I will always think of it as the “good kind of heat”.  

Thursday, August 21, 2014

The Good, the Bad, and the Ugly

While we have taken a few vacations since getting Matthew almost six years ago, last week we attempted our first trip that involved an airplane ride and four nights in a hotel. We had a lot of fun and I'm sure we would do it again, but there was some good, some bad and some we go...

The Good

Technically Matthew has been on a plane before, when we brought him back from China, but he was only 21 months old.  In my gut, I believed that he would love the plane ride, because he loves motion.  Both bus and train rides have been successful.  Thank goodness, he did love the plane ride. He was patient about waiting to board the plane and waiting for take off.  Right before take off he signed and said "go" (it's his best word!). The other part I was a little worried about was the airport and running, especially on the way back when it would be just me and the kids.  But luckily, he stayed right by us while we had to go through security and when we had to wait to board. Maybe it was his backpack that I weighted down with rocks!  No rocks...but he did carry his backpack the whole time.

Matthew didn't have any interest in the monuments or museums we visited, but he never cried or whined.  He chose to sit on a bench with me at most of the museums.  He did a lot of signing for "drive", but I don't blame him because we put in a lot of walking miles!  He also signed "swimming" throughout the day. On the second day we visited the Capitol.  The security guard was listing off the things that we had to put in a tray to go on the conveyor belt.  "Phones, wallets, purses, belts, and tree leaves."  I looked at him like, "What?" and then I looked at Matthew and he had a leaf in each hand! On the way out a different security guard interacted with Matthew by repeating the taps Matthew did on his table and gave him a US Capitol Police badge sticker.  I would say Matthew's highlights were the swimming pool at the hotel (although it drove him a little nuts to not be able to go in the hot tub - you had to be 16 or older and they had a life guard who was strict about that rule), riding on top of double decker bus, and the carousel on the National Mall.  (Oh and maybe watching the sofa sleeper be put up and down each night and morning. Fun times.)

The Bad

We did have three incidents of running.  Three might not sound like a lot (and I guess there could have been more), but because it's so scary when it happens, anything more than zero is too many times.  The first time happened when we were leaving a grocery store near our hotel and walking through the parking lot towards the sidewalk.  Even though I was holding his hand he managed to break free and run towards a parked car. He attempted to open the door, but luckily it was locked and we caught up to him quickly. The second time happened when we were in front of our hotel, waiting to take the shuttle to the metro station.  A car drove up and a family was unloading their suitcases.  He made a beeline for the car and was about to get in when Rob caught up to him.  As I mentioned in Message to Snarky Woman at the Park, when Matthew is attracted to something he will run with blinders on and without regard for danger. He does NOT stop no matter how loud you are yelling for him to stop.

The third incident still kind of freaks me out because it just reinforces for me how fast things can happen. Matthew and I were heading out for just a short while and I turned to put the "Do Not Disturb" sign on the door.  Matthew was right behind me, but when I turned around he wasn't there.  We were at the end of a long hallway, so even if he had run, I would at least still be able to see him.  It was almost as if he had vanished into thin air! Just then an elderly man across the hall opened his door and said something to the effect of "Hey buddy..." and sure enough there was Matthew...inside someone else's room! It took awhile for my heart rate to go back to normal.

The Ugly

I don't like to be a pessimist, but I kind of already knew that sleeping through the night was going to be a problem.  In I Love You...Bye Bye, I was pleasantly surprised when he slept through three out of four nights at my sister's cabin.  At my sister's cabin we had our own separate area and sleeplessness would only effect Matthew and me.  But when you are staying in a hotel and Matthew can't can wake everyone up! And there is always the fear that we will wake up people in other rooms.  Maybe not from Matthew, but rather Abby's loud insistence, "MATTHEW, BE QUIET!!!!!!!!!"

He slept through the night two out of the four nights.  The first night he woke up at about 3:30 am and he never went back to sleep.  Matthew and Abby were sharing the pull out sofa sleeper, but we had him join us in our bed when it was apparent he wasn't going back to sleep anytime soon.  Our bed was not the best choice, because he couldn't resist tapping the headboard.  Finally, I gave up hopes of him sleeping, but I still had hopes for the rest of us.  I gave him my phone to watch YouTube videos of bouncy houses.  We did not have free wifi in our rooms (I know, crazy right?), so in these wee morning hours of video watching he ran through all my data streaming.  We got two text notifications that they would add 1 GB of of data for $10, but of course we didn't see the notifications because he was using the phone.

The third night we were there, he was so tired and he asked to go to sleep.  I was a little worried, because it seemed early for him to go to bed at 7:30 pm even though that would be a normal bedtime for him at home. I guess I was right to worry as he was awake at 11:30pm!  I ended up switching places with Abby so that maybe she would get some sleep.  Things that might not sound loud in the light and noise of the day, can be super loud in the quiet of the night (i.e. clapping, fiddling with the metal part of the sleeper sofa, and tapping on the top of a Starbucks cup).  It defies logic, but the two nights that he slept through the night were also the two days that he took a late afternoon nap.  You would think that taking a late nap like that would screw up his sleep pattern, but I guess the naps were just making up for the lost sleep from the nights before.

Despite there being some bad and some ugly, we will take another family vacation. Maybe we could find a museum that Matthew would like...I hear they have a vacuum museum in North Canton, Ohio!

Wednesday, August 13, 2014

Footwear Fascination

Tennis Shoes. Boots. Slippers. Flip Flops. Sandals. Crocs.  If feet go in them, they are fair game.  As I mentioned in Mr. Bossypants, slippers are things that Matthew likes to be bossy about and in  Message to Snarky Women at the Park,  I talked about how Matthew has lots of objects that he is attracted to (items that he is drawn to or will cause him to perseverate on).  Footwear is a big one! Knowing that Matthew is a sensory seeker (needs to touch and smell things to make sense of his world) helps put his love of footwear into perspective. Let's just take a little look in the closet:

Tennis Shoes
Why He Likes Them:  The rubber bottom part smells good to Matthew.  Most tennis shoes have a pattern on the bottom that helps with traction, but for Matthew that provides just the right surface for tapping and scratching.
When it Causes a Problem: When people are wearing the shoes.  People like their personal space. Sometimes Matthew gets fixated on a specific pair of shoes, such as a little boy who goes to our church. When they are in Sunday School or up for the Children's Sermon he tends to try and sit next to this boy so he can tap the bottoms of his shoes.

Flip Flops
Why He Likes Them: We've got the rubber smell going on just like the tennis shoes. Plus the extra bonus of them being easy to slip on.  Have you noticed they make a great smacking sound when you walk too?
When it Causes a Problem:  When Abby can't find her flip flops, she immediately blames Matthew (sometimes rightfully so, but not always).  When Abby's friends come over, we usually have to find their flip flops when it is time to go.

Why He Likes Them:  Rubber... (got that part now, don't you?).  Just like flip flops, they are easy to slip on.  The bottom usually has some lines that are good for scratching.
When it Causes a Problem:  At places like bouncy houses and trampolines where everyone just throws off their shoes.  When he's done jumping and is supposed to be putting on his own shoes, he just might spend a little time with someone else's crocs. Last week we were at the beach and some kids had left their crocs in plain sight (what were they thinking?) and he made several sneaky attempts to get some up close time with them.

Why He Likes Them: First of all, there are so many different kinds of boots!  If we start with winter boots...we still have rubber to smell.  And they are chunky and have textures to scratch on the bottom.  But most of all it is extra fun to walk in boots that are too Daddy's!  Although the stairs are a little bit of a challenge.  Then of course there are fashion boots.  He likes to wear these because they have fun zippers on the sides. Smelling the leather is a novelty after all that rubber.  The boots go up way past his knees and they make a squeaky leather sound when he walks.
When It Causes a Problem:  In the morning rush to get to school in the winter, chances are we might have to take a trip up to Matthew's bedroom to find a missing boot.  If you read Teddybear...bwhahaha, you will know that boots are one of the things that Matthew likes to sleep with.  His school never said it was a problem, but I can only imagine that there must have been some attraction issues when all the boots were lined up outside the classroom to dry!

Slippers (otherwise known as the Footwear from Hell)
Why He Likes Them: They can be fuzzy, but still have somewhat scratchy bottoms for tapping and scratching.  They make a cool shuffling sound when people walk in them.  Both Grandmas have a pair of slippers and he knows right where they are in their houses.   The FIRST thing he does when he goes into their houses is bring out the slippers.  When Grandma Sieling comes, she sometimes stays overnight, so he always checks her bag to see if she brought her slippers.  Sometimes he will wear them, but more often than not he makes me put them on.
When It Causes a Problem:  He truly can become quite obsessed with the Grandmas' slippers and having them in his possession.  He has tried to sneak them into the car when we go places.  He tries to sneak them out of Grandma's bag when it is time for her to go home.  Last Friday night he woke up at 3:30 in the morning and in a frenzy he raced down to where Grandma was spending the night and busted into her room to get the slippers.  After that, he was so wound up that he couldn't go back to sleep, which means we didn't get much sleep either!

With all this fascination with footwear you might be surprised to find out that when it comes to his own two feet...he actually likes to be barefoot!  (Which can bring some problems of its own!)


Thursday, August 7, 2014

I Love You...Bye Bye

What if you wanted to be alone?  What if you wanted someone to go away?  How would you tell them without hurting their feelings or making them feel bad? People might not want to admit it, but a lot of us feel that way sometimes.  More often than not we probably don't say anything because we don't know how to tell someone that gently.  Maybe we find an activity, such as reading a book or exercising that gives us that "alone" time. When we choose not to say anything and just ride out the feeling, chances are there will be feelings of resentment or irritation, which can lead to fights that seem to come out of nowhere.

Interestingly enough, I think Matthew (who for those of you who haven't read Mr. Bossypants, is non-verbal) has found a way to soften the blow.  It used to be that when Grandma Buettner would come to the house he would start to cry.  Now, Matthew loves Grandma Buettner (she always brings him special treats and scratches his back).  But Grandma coming to our house = Mama leaving!!!  It's an undeniable fact that Matthew is a Mama's boy.  He wasn't crying because Grandma was there, but he was crying because I was leaving.  But a few months ago, he tried something new.  When Grandma came to the door he signed "I love you", immediately followed with "bye bye".  He now does this pretty much every time Grandma comes over.  Obviously Grandma can't leave just because he tells her bye bye, but she can reaffirm that she heard what he said by saying "I love you too, but I'm staying.  We are going to play and have fun."  He then watches out the front window and we blow kisses to each other.

He now does those same two signs when Grandma Sieling comes or when one of his therapists comes.  I noticed he did this sign only when one of his therapists would come to our house.  He has known this therapist for years and has never had a problem with her so I knew that there had to be more to the story.  I can't leave during therapy so I knew that he wasn't trying to tell me not to leave.  He does often sign for me to "sit down", so that I stay in the same room.  His lead therapist always brings this special sand that he loves, but the other therapist doesn't bring sand with her.  The more I thought about it, I think he was trying to say in his own way that he wanted the sand.

Last weekend, we were up at my sister's cabin and Matthew and I shared a bed in the basement so that if he woke up in the middle of the night it wouldn't affect everybody else. His track record for sleeping through the night on the road is not stellar.  This trip he surprised me by sleeping through three out of the four nights...I guess it was all that fresh air!  The night that he did wake up (at 3 am, mind you) his response to my repeated requests for him to "LAY DOWN" was "I love you" "bye bye"!

Matthew has two other interesting ways that he came up with to let you know that he wants you to go away or that he wants more time to do something. When both of our kids were little, we would let them push the snooze button (our nose) to say they needed a little more time to wake up.  Being an avid user of the snooze button myself, it seemed only fair to give them time to wake up versus jumping right out of bed.   Matthew took that little signal of pushing our nose and transferred it to other situations (Damn, he's smart!).
For example, if it's time to clean up his blocks for dinner he might try to push my nose = I want more time. Honestly, the first time he pushed my nose, I had no idea what he was doing.  Then the realization..."he's trying to snooze me!"  The second signal he uses is to smack his lips at me (like he's blowing a kiss...muah). This signal doesn't get him too far though, because I have noticed that he tends to use this when he is doing something that he is not supposed to (i.e. standing in the toilet, filling the sink with water, sitting on his dresser, etc.)  and he's been caught mid-act.  Muah translates to "Go away, lady, I want to keep doing THIS..."  

Well, I'm feeling the need to enjoy a little chocolate fix in peace so...MUAH...

Wednesday, July 30, 2014

Take Me Out to the Ballgame

If you want to see:

One...Two...Three're OUT...

A shut out game...

Stolen bases...

Deep fly balls caught in centerfield...

Fireworks for homeruns...

A retractible roof...

The wave...(yes, this still happens!)...

Sausage races...

People dancing the polka to "Roll out the Barrel"...

The chance to catch a foul ball...

Super exciting come-backs AND gut-wrenching losses...

Then you should probably head to a Brewers game.  And please don't get me wrong...I'm a Brewer fan through and the game, love the ambience, love that it's a chance to get a date night in...BUT...
three years ago, my eyes were opened to a new kind of baseball...The Miracle League.

Three years ago, Matthew was in 4K and had support from his Early Childhood Team.  It was spring and lots of flyers were coming home letting parents know about summer opportunities.  To be honest, most of the them ended up in the recycling bin.  For one, most of them just wouldn't be feasible for Matthew to participate in independently. Secondly, when you schedule 5 hours of ABA therapy a day, plus squeezing in a nap and two sessions of Speech and Language - (if you missed reading about how I got summer Speech and Language you can read about it here: Mama Bear...GRRR... ), there just wasn't enough time or energy. I wanted there to be time for him to just be a kid too!  But this one flyer caught my was for the Miracle League.  It sounded perfect!  To quote the Miracle League of Milwaukee website:  The Miracle League believes everyone deserves the chance to play baseball. The league allows all children to play organized baseball, regardless of ability. Kids with special-needs dress in uniforms, make plays in the field and round the bases, just like their peers in standard little leagues.

If you read some of my other blog posts like (Mr. Bossypants and Whatever it Takes), you'll know that I like to write in lists.  I see Top Ten Lists all over social people must like reading them too!

Top Ten Reasons a Miracle League Game is Better Than a Brewer Game

10.  The game is only two innings long, which ends up being about 1-1 1/2 hours long. Let's face it, with time to park or catch a shuttle, you are looking at more like 4 hours for a Brewers game.  If you tailgate, add a few more hours.  And what if the game goes into extra innings?

9.  The game is totally FREE.  There is a real scoreboard, popular music playing, and an entertaining announcer calling the player's names and the plays.  How often can you get all of those things and more for FREE?  Extra bonus...if you have a pre-teen or a teen you can embarrass them by seat dancing to the music. 

8.  The concessions are much cheaper.  Yes..there are concessions!  You can get hot dogs, popcorn, candy,  water, Gatorade, etc.  for very reasonable prices (typically $1 to $2).  

7.  There is an accessible field.  The field is made out of a special rubberized material that allows for kids in wheelchairs to play.  The softer material helps prevent injuries if the players do fall or slide into the base!

6.  There is an accessible playground to burn off energy before or after the game.  There is a really cool part of the playground that allows kids in wheelchairs to experience what it feels like to swing.  

5.  Every player has a buddy.  The buddies do every aspect of the game with their assigned player.  They go up to bat with them and help them get positioned to either hit off the tee or hit from a pitch.  After the player hits the ball, the buddy runs the bases with them.  The buddy sits in the dugout with them and when the innings switch they go out to the field with them.  

4.  You get to see kids play baseball who might not otherwise be able to play.  Every kid has a different reason that the Miracle League helps them be able to play.  For Matthew, having a buddy makes all the difference in the world.  Matthew is a "runner" and so having a buddy helps keep him safe and focused on the game.  He has had the same buddy two years in a row now, so they have really formed a bond.  She knows just what to say to motivate him to do the right thing (i.e. not lay down on the field or take his shoes off).  

3.  You can expect the "unexpected", but for sure you can expect to laugh!  Last year we had a pitcher, who would erupt into somersaults.  Last night there was a boy who was running around during the national anthem, but then didn't want to run when it was time to go to first base.  Most games Matthew wears a batting helmet in the outfield!  

2.  Everybody in the audience cheers for EVERY player.  I mean EVERY doesn't matter what team your kid is on.  It is hard to describe in words how cool it is to see the shared encouragement and claps as everyone goes up to bat and as they go back to home plate (EVERY inning EVERY player makes it back to home plate).  Even though there is a scoreboard, there are not outs and the games are often tied. 

1.  You get to see some of the biggest, best smiles.  Everywhere.  From the players to the buddies to the fans in the stands!  The players are so excited when they hit the ball. You can see their pride when they take off for first base or if they get to throw the ball.  

Because Matthew is in his third season with the Miracle League we have the added bonus of being able to see the progress he has made over the years.  Some things are starting to come along because of maturity, but he's also starting to understand the game.  All of the following things I am going to mention are things he now does with help from his buddy: He stays by his buddy instead of trying to run all over the field during the game. He gallops to first base instead of asking to get picked up and carried. He stands, with his cap off for the national anthem.  He stays in his own dugout.  He only wears one glove out to the field instead of one on each hand.  The list could go on and on...but I will end with what happened last night!  Over the last few games they have been encouraging the players to try hitting from a pitch instead of the tee.  Both Rob and I were thinking, "Well, maybe next year he'll be ready to try that."  The next thing we knew, there was Matthew without a tee...and he hit it on the third pitch!  

Friday, July 25, 2014

Mama Bear...GRRR...

For those people who know me, I'm not big into confrontations.  I'm more likely to keep it inside or just vent to my family or friends.  But every so often my fiesty side comes out...then look out!  This morning I was sitting at a car dealership...the same car dealership that just a year ago I vowed I would NEVER step foot in again.  I had received a recall notice for my power steering, so I went back on my vow and took my car in. Since it was a recall repair there was no charge and it would only take about 45 big deal, right? However, when I saw that the woman who would be checking me in was the same woman I had dealt with the last time I was there, I couldn't help but feel a little bit of irritation.  While I was in the waiting room, I remembered back to that incident and got that pitty feeling in my stomach.  It got me thinking and although I am sure there are several more, I can clearly remember 2 1/2 times when I got that feeling as Matthew's mom.  (I know, how do you have 1/2 of a time? Keep'll see.)

The first time was in January of 2009.  (Quick recap for those who don't know us personally:  Matthew was adopted from China in November of 2008.  We did not know at that time that he had autism, but he was adopted through the Special Needs Program and the primary label they gave us was growth delay.  He was in the under 3rd percentile for height and weight.  At 20 months old he was not walking or talking.)  I was on the phone with a lead case manager at a birth to three program.  They had already come out to do an evaluation on him.  She was explaining to me that they could start occupational therapy and physical therapy, but that we would have to wait on the Speech and Language services because technically it was an English as a Second Language issue. Mama Bear came out big time!  I explained that maybe normally that might be the case when a child is adopted from another country, you might wait to see if they pick up English.  But this case was different...he wasn't saying ANY Chinese words.  In fact, he rarely made sounds.  It was obvious to me, regardless of the reason, that his speech was going to be delayed.  Now, it was long enough ago that I don't remember all the details (like how many conversations we had), but I remember spouting about how important early intervention was and I might have asked to talk to her supervisor.  In the end...he started Speech and Language not long after that!

Interestingly enough the second time was also about Speech and Language.  At three years old (about a year later), he transitioned into Early Childhood.  Surprisingly, he wasn't identified under the autism label at that time, but the autism specialist felt that some of the characteristics that he was displaying (no eye contact, hitting his head and the delayed gross motor, fine motor and speech) could have also been explained by sensory deprivation in the orphanage.  Now why didn't my Mama Bear side come out then?  I don't know...maybe I wanted what she was saying to be true.  It would be a situation that we could "undo", not necessarily something that he would have to live with his whole life. So, when did Mama Bear come out again?  It was springtime and I had received a call from his Early Childhood Speech and Language teacher. She explained that he would not qualify for Speech and Language during summer school. Say what? In a matter of fact way she explained that she would have to say that he would regress without Speech and Language and she couldn't say that.  I hung up the phone, feeling confused...I mean, if you put him on a pretend scale and not talking/very few sounds was at the bottom of that do you regress??? But if he's at the bottom of the scale, wouldn't that be all the more reason that he needs Speech and Language over the summer?  Lucky for me, I had a wonderful Speech and Language teacher as my colleague and friend. She helped me find the right words through researching the law on Extended School Year and she helped me formulate my argument.  I am happy to say that he got Speech and Language that summer and has had it every summer since!

You just kept reading to find out what the 1/2 was, didn't you? I consider this example a 1/2 because while I got that feeling in my stomach...I didn't do anything about it.  We were at a picnic and a child (who knows Matthew) says to an adult (who doesn't know Matthew), "He doesn't know anything.  He doesn't talk." Goodness knows, I have responded to "He can't talk" many times before with a simple "He can talk.  He just uses signs instead of words."  Maybe Mama Bear was in hibernation or maybe the timing wasn't right because I would have had to address both statements. However, I think if Matthew could talk, this poster might have been what he said to her:


Monday, July 21, 2014

My Way of Yelling From the Rooftops

We are at the sand area that is by our local pool, trying to squeeze in 1 1/2 hours before therapy.  It is an amazing place with all kinds of buckets and shovels and rakes and a contraption you can push to make water come out.  Matthew loves it here.  The only thing that could make it better is if there was a trampoline.  If you read Message to Snarky Woman you already know that he is attracted to sand toys.  (If you didn't read it can click on it from least I hope...if I did the link right!)  Today there was no stealing of toys and only a little bit of coveting of the orange castle bucket, which was quickly in his possession as soon as it left the little boy's hand.  And thank goodness this story doesn't involve nakedness, because well there is always that possibility!

Matthew was sitting along the curb at the edge of the sand area.  A little girl of about three years old came up to him and dumped water in his bucket.  Her mom called out to her, "Make sure he wants you to pour water in his bucket."  She went back to the fountain of water and got more water.  She hesitantly came back to Matthew and smiled.  He pointed to his bucket and she poured it in and smiled again.  Matthew signed water.  Whether she knew that sign or not, she went back and got more water. While she was getting water Matthew would pour the water into an even bigger bucket.  This same scenario played out numerous times.

No words crossed between them.  They didn't need any.  They were playing.  They were playing TOGETHER!  This wasn't parallel play (each playing a similar thing, but alongside each other). Typically when Matthew plays it is either parallel play or him trying to get another kid (or adult) to do what he wants.  (i.e. he will attempt to put a bucket in another kid's hand to get them to fill it with sand, which is not usually met with cooperation, I might add).  But this was different...she initiated play and he accepted. She wanted to pour water in his bucket and he wanted to let her.  Matthew's back was to me so I couldn't see his face, but I could clearly see the little girl's face and she was smiling and having fun.

Because playing with someone else in this way is soooo huge, I feel like yelling it from the rooftops.  Lucky for me I have this blog instead!  I know not every time that we go there will be like this time.  Sometimes it will be like Sunday, when there was only one other girl in the sand area with us and he wanted the one bucket (yes, it was the orange castle bucket) that she had.  But the fact that this time DID happen reminds me of why we keep going back.

This post is shorter than usual, because just like Matthew and the little girl, I don't need a lot of words.  In fact, I wish I could have done this whole post in pictures.  Maybe next time, because in my heart I know there will be another time.